Pulse of My Heart

Exciting news--a book deal!

2011-06-09T11:20:00.000-07:00

Hi everyone:
I haven't updated this blog in some time, mostly for the same reasons as before--if Patty's doing well, there's not much to report. I did want to share some exciting news. A publisher is picking up the rights to Patty's story. Pulse of My Heart, the memoir Patty and I have been co-authoring, will be published first as an E-book and then, if it does well, as a trade paperback. More details soon.

One medical update: Patty will be having her ICD/pacemaker replaced this coming Monday (the battery is running down); she'll spend one night in the hospital.

Cheers,
Brian

Angiogram clear

2011-04-21T07:30:00.000-07:00

Hi everyone:
Patty underwent an angiogram (her latest of many) this past Tuesday. No obstructions or restenoses were found. We're disappointed not to have answers as to why Patty still suffers angina whenever she strains herself, but relieved to learn she's not having problems that could lead to another heart attack.

Love,
Brian

A possible setback?

2011-04-10T07:25:00.000-07:00

Hi everyone:

Over the past several months, Patty's unease has heightened about the gradual reemergence of heart failure symptoms we had happily relegated to the category of distant memories.

Last year, Patty started noticing angina (heart pain) whenever she exerted herself, most often at work. Her cardiologist questioned whether these pains were, in fact, heart-related; Patty seemed too strong. Still, the discomfort persisted--enough to unsettle Patty, but not enough to command much in the form of intervention. As a layman, I imagined these as twinges related to Patty's heart growing accustomed to the HeartNet placed two summers ago. I always have theories, most of which are pure fiction.

Over the past month, more old "friends" have started to drop in: weakness in her legs when walking, coughing in her sleep, shortness of breath, nausea and frequent urination. While Patty sleeps, I often rest my head on her chest and listen to her heartbeat; in the past couple of weeks, the pace seems faster than usual, as though Patty had just gone jogging. Still, none of the symptoms was severe enough to justify a trip to the emergency room; she's still functioning at a pretty high level.

To set Patty's mind at ease, her cardiologist ordered a nuclear stress test--essentially, a test in which the strain on the heart is induced by chemicals rather than physical exertion. Patty did the test. Early last week, her cardiologist's nurse called to tell Patty that although the results did not show any major anomalies in how her heart responded to the strain, they did contain a surprise: Patty's ejection fraction, or EF (a measure of how well the heart functions in pumping blood through the body) had dropped from the past time it was measured, from 38 percent to 21.

As is so often the case with the medical community, Patty's cardiologist was out of town when the results came in, so we were told to sit tight until the end of the week. Last night, while checking messages on her cell phone, Patty retrieved one from her doctor's nurse. Patty's cardiologist wants to perform an angiogram to get a closer look at Patty's heart. In the past, doctors have shied away from doing more angiograms, because the risk of perforating an artery increases the more often they are performed. The nurse explained that there's some concern she may have a restenosis (a regrowth of arterial tissue around one of the two stents in her heart, or possibly a new blockage). We're hoping this isn't the case, because we had been told, in the past, that another stent may not be an option, and that bypass surgery would be the logical next course.

Patty is understandably shaken by the prospect of another angiogram, because each time these have been performed in the past, the results have been alarming. In one, the procedure itself caused her to have a second, minor heart attack. We're hoping this one goes off without event.

Please understand that we're doing a lot of speculating right now based on little concrete information. Patty has to call on Monday to schedule the angiogram. As soon as there's more to share, I will post an update here and on the Facebook page I created to discuss Patty's health issues.

We have a family road trip to Canada, for my parents' 50th anniversary, planned for next weekend. We're keeping our fingers crossed these new developments won't affect our ability to make the journey.

Please keep your fingers crossed that we're worrying more than the circumstances deserve.

Love,
Brian

Encouraging results from HeartNet procedure

2010-07-22T10:26:00.000-07:00

Hi everyone:

Patty met with Dr. Costanzo yesterday for her routine appointment (at which Patty sold the doc a copy of my book). Patty is doing very well. Dr. Costanzo told us that updated results of the HeartNet study in which Patty participated have been so positive the FDA is encouraging further research. Patty's recovery from the procedure was far from pleasant, but it's nice to hear it may have been worth it.

Also, Patty's ICD/pacemaker is gradually running out of juice. When she hears the music coming from her chest (really)--most likely within three to nine months--it will need to be replaced.

Love,
Brian

Some worrisome symptoms

2010-06-05T07:46:00.000-07:00

Hi everyone:

During a recent routine visit to her cardiologist, Patty shared with her doctor that she'd been experiencing chest pain whenever she was especially active--such as when she climbed stairs at school. Dr. Costanzo was alarmed, and quickly set up a series of tests to investigate. None of the tests could explain Patty's discomfort, so her doctor concluded that whatever Patty was feeling was likely not heart-related. Of course, any such conclusions are a bit confusing--nice to find out there's nothing major jumping out, but a bit worrisome that she's having symptoms for which no explanations are offered. My hope is that Patty's summer break will give her a chance to relax and unwind; her school year was a brute.

Love,
Brian

Some non-cardiac surgery for a change

2010-03-22T11:00:00.000-07:00

Hi everyone:

Patty had surgery this morning to remove a neuroma from her right foot. For the past two years, it has been a nuisance, and recently has made working on her feet painful. We left the house just after six this morning, and were home by 10:30. As I write this, our patient is in a deep slumber on our sofa, even with the chaos of a full house around her.

When Patty was being prepped for surgery, the nurse seemed quite surprised to learn Patty has an ICD/pacemaker. Patty seemed quite surprised that they were surprised, because she had communicated this fact on more than one occasion. At first, we worried the surgery would need to be postponed, which would be frustrating because Patty planned it for her spring break. Apparently, the normal way of doing the surgery involves electrical impulses, which might have caused some problems with Patty's ICD. Doctors opted for a different approach.

As unfortunate as it is that Patty had to have yet another medical procedure, we're glad for once that it has nothing to do with her heart.

Or does it? I have this theory, which I believe I pulled out of my ass, that this neuroma and the numbness she experiences in her hands and arms are all related to whatever unnamed autoimmune condition she has. I can't prove it, of course--and I'm no doctor--but it sounds right to me, so there it is.

Love,

Brian

An encouraging sign?

2010-02-01T21:15:00.000-08:00

Hi everyone:

At long last, we have some results from Patty's latest round of tests (those designed to measure the effectiveness of last summer's HeartNet surgery).

Patty's ejection fraction (EF) now measures at between 30 and 35 percent, up from 20-25 percent. Normal is around 55 percent. With heart failure, it's very unlikely Patty will ever be at normal levels, but she seems to be functioning just fine where she's at.

We were pleasantly surprised by the increase in EF, because one member of the research team said that the short-term results were not as dramatic as they had expected from the study. So, for once, Patty seems to be an exception to the rule in a positive fashion.

All in all, Patty is faring quite well. She has had to battle a few bugs this winter (for example, she missed work today because she was vomiting), but on most days seems no different from anyone who doesn't have heart problems. That's the best sort of news, and we're living it most every day.

Love,
Brian

My theory (for what it's worth)

2009-12-10T05:39:00.000-08:00

Hi everyone:

Of course, no doctor wants to believe me, but I still think all of Patty's odd and somewhat random symptoms--numbness in right hand, pain in right foot, perhaps even the atherosclerosis in one (and only one) cardiac artery that caused her heart attack--are all related to some undiagnosed autoimmune disorder.

Of course, I'm not a doctor, so I don't really have a pot to piss in as far as such diagnoses go. But I'm putting it down, here, just so I seem brilliant if it ever turns out I'm right.

By the way, Patty's tests have been rescheduled to mid-January; I'll share any results here whenever we have them.

Love,
Brian

Results soon?

2009-12-01T10:43:00.000-08:00

Hi everyone:

Patty has a handful of tests coming up over the next week to evaluate how successful the HeartNet device has been in increasing her ejection fraction. Keep your fingers crossed for good news. In the long run, I'm not sure what an improvement will mean, but it will still be nice to hear about a step in the right direction.

Patty and Kathleen are going to a Swell Season concert together on Thursday evening. It will be a nice night for the two of them, since they both love the two lead performers, who are also the stars of the film Once.

More updates soon...

Love,
Brian

HeartNet info

2009-11-17T11:43:00.000-08:00

Hi everyone:

While surfing around today, I found an interesting (albeit dated) article about the HeartNet procedure (Patty had it this past summer), with quotes from people Patty knows well at Edward Hospital. It's here.

Love,
Brian

Hand numbness and headaches

2009-11-16T12:22:00.000-08:00

Hi everyone:

Patty has been experiencing an unusual and disconcerting symptom recently--profound numbness in her hands, particularly in the mornings and more pronounced in her right hand. This, of course, makes teaching art classes, and pottery in particular, rather difficult. We're not at all clear as to what may be causing this, or if it's in any way related to her heart failure. Patty has a couple of big tests coming up in December (to test for any improvement related to the HeartNet) so, if anything awry is happening, perhaps we'll gain insights there. Of course, the symptoms could mean little; they're worrisome, though, because heart patients have much greater-than-average odds of suffering a stroke in their lifetimes (and because Patty seems to be having more frequent headaches).

Yesterday, we watched an episode of a PBS series, The Mysterious Human Heart. One of the featured patients was having difficulty finding a donor heart because of high antibodies. Does this sound familiar? The show was fascinating so, if you're interested in getting into the nitty-gritty of heart function, it's well worth a look.

Love,
Brian

Coasting along

2009-11-11T11:12:00.001-08:00

Hi everyone:

I haven't posted in a little while, so I thought I'd drop in to let you know that Patty has been faring well of late. She's had occasional arrhythmias that I, of course, find more unsettling than she does; otherwise, though, she still seems to be going strong.

Love,
Brian

Coming up on five years

2009-11-02T10:47:00.000-08:00

Hi everyone:

Nothing much to report. Patty has had headaches for several days running now, for no reason of which we're aware.

Five years ago this week Patty suffered her heart attack. From what I've read, more than 50 percent of those who have a heart attack and then develop heart failure do not survive five years. Patty seems much stronger now than she did two years ago.

Love,
Brian

And on and on and on...

2009-10-21T05:58:00.001-07:00

Hi everyone:

Patty has really been having a rough go of late with her recovery from the HeartNet surgery. For reasons that puzzle everyone, including her doctors, she's been experiencing a fair amount of pain below her incision site. Her cardiologists have expressed surprise that she's still having discomfort after so long--how soon they forget that Patty seems to be the exception to every rule in the medical world.

She's not allowed to take ibuprofen, because it's contraindicated for those with heart failure, and doctors will no longer give her any other pain medication because--I don't know--she's not a grown-up who can make responsible decisions?

It's frustrating to watch Patty struggle through the demands of her teaching job while also struggling with pain that is exascerbated by said teaching job. It's also frustrating, for one who loves her, to accept that doctors won't do anything and everything to help her cope with what is, admittedly, a drawn-out recovery. And for what reason?

So, with no other options offered, Patty has to go back on steroids for at least a week. I'm doubtful this will work.

I'm wishing, more and more, that she'd never had the procedure. I hope we'll look back on all of this in a positive light at some future date but, for now, I'm not happy.

Sunnier messages in the future, I hope...

Love,
Brian

Some incision site discomfort

2009-10-08T19:16:00.000-07:00

Hi everyone:

Patty's incision site from her HeartNet surgery has become quite painful of late. Our best guess is that she aggravated it while dancing rather energetically to "Forever" by Chris Brown the other evening. Hopefully, this is just a minor irritation, and not a lingering issue.

Other than this, Patty seems to be doing quite well. We'll find out in December whether or not the HeartNet has affected her ejection fraction.

We've had Neil visiting off-and-on over the past couple of weeks. Everyone else in the family is doing well.

More soon...

Love,
Brian

Better than before

2009-09-24T08:34:00.000-07:00

Hi everyone:

Patty seems to be mostly shedding the last vestiges of flu that had been plaguing her. A nagging cough is hanging on, though, and not wanting to let go.

She had a cortisone shot in her right foot two days ago to treat a neuroma; so far, it isn't working. The alternatives involve intentionally damaging the nerve, so we're hoping to avoid that route.

All in all, our patient seems to be doing pretty well, although she scared me a little last week when she complained of discomfort across her collar bone. Dr. Costanzo checked Patty out yesterday, and said she was doing great.

That's all I have for now. If anything else happens, I'll be sure to let you know.

Love,
Brian

A rough couple of days

2009-09-09T09:26:00.000-07:00

Hi everyone:

Patty was forced to stay home from work today by what we believe is the flu. She has been battling low-grade fevers, nausea and potent headaches since yesterday evening. A couple of days prior, she experienced some discomfort in her chest similar to the pericarditis symptoms; as this discomfort arose shortly after she finished her course of steroids, I'll be watching her closely. I'm feeling under the weather myself, so we may all be battling a bug of some sort; unfortunately, these bugs tend to take a bigger toll on our patient. I took a photo of Patty this morning that I had hoped to post, but it wouldn't attach properly (given how terrible Patty looks, this is perhaps a blessing.)

On a more positive note, our agent continues to shop our book about Patty's story (tentatively titled "Pulse of My Heart".) To date, at least three larger publishers have expressed some interest. Keep your fingers crossed. I, for one, believe it is a compelling, touching and sometimes quite humorous story.

Love,
Brian

A little rough

2009-09-01T13:22:00.000-07:00

Hi everyone:

Recently, Patty finished taking her six-week course of steroids. Over the past couple of days, a discomfort similar to the pericarditis-related pain has returned. We're going to keep an eye on it for the next day or so; if it gets any worse, we'll be back in touch with her doctors.

Last weekend, PJ moved into the dorms for students of The School of the Art Institute of Chicago. He starts school this Thursday, and is very excited.

Other than that, there's little new to report.

Love,
Brian

Anatomy of a moonface

2009-08-26T16:06:00.000-07:00

Exciting opportunity (hopefully)

2009-08-14T14:19:00.000-07:00

Hi everyone:

I just wanted to share some exciting news that we hope will become even better news in the near future. My literary-agent-slash-hero, Claire, will be representing Patty and I in selling rights to Pulse of My Heart, a memoir Patty and I have been writing about her medical journey.

Claire, who sold my book (to be published in May of 2010), thought highly of the seven sample chapters we sent to her yesterday. She described the material as "good (but horrific) reading". She will be sending the material to publishers starting next week. We'll be sure to keep you posted about any developments.

Patty has been working like mad to capture as many memories as possible before she heads back to the classroom the week after next. I've also been authoring a few chapters, to lend the book a "he said, she said" perspective. In the process of pulling this together, I think Patty has uncovered in herself a knack for narrative; her storytelling, in my utterly unbiased opinion (yeah, right), makes for a pretty compelling read. What's more, aside from a few snipes at each other in the early going, we've also found we collaborate pretty well.

More soon...

Love,
Brian

Belated birthday and such

2009-08-06T14:47:00.000-07:00

Hi everyone:

Well, I haven't been writing, which means that little has been happening. Patty celebrated her 48th birthday yesterday. Last night, she was experiencing some wonky arrhythmias, but has otherwise been pretty strong of late. I'll write again when there's more to report.

Love,
Brian

Just checking in

2009-07-31T07:57:00.000-07:00

Hi everyone:

Patty has enjoyed being home the past couple of days, and seems to be doing well. The steroids seem to have alleviated much of the discomfort across her collar bone and back. She's still feeling some discomfort at her surgery site, but otherwise is doing great.

Love,
Brian

Looking good for a Wednesday departure

2009-07-29T08:43:00.000-07:00

Hi everyone:

We don't have many new details yet, but we do know with near-certainty that Patty is going home today. If there's anything new to report, I'll pop in and write it later. She's having a pretty decent morning.

Love,
Brian

People, we have results!

2009-07-28T15:18:00.000-07:00

Hi everyone:

As you can see from the photo, good pain management involves spending a large portion of your time unconscious.

We do finally have some results, although they're (sadly) not of the, "Turns out it was the vapors" variety. Wouldn't this be a nice deviation from the norm--two Rolaids and then on our way?

Tests of Patty’s blood revealed elevated levels of two markers associated with inflammation in the body—erythrocyte sedimentation rate (or "sed rate") and C reactive protein. Sed rate tests measure the clumping quality of red blood cells; when inflammation is present, red blood cells tend to clump together.

Patty’s cells are clumped.

C reactive protein is generally only traceable in the blood if inflammation is present, and appears with some frequency in those with autoimmune conditions such as lupus. It may also appear in heart patients when inflammation is present in areas surrounding or including the heart.

If you're in the market for C reactive protein, Patty's got it. And, as I mentioned previously, she also has white blood cells to spare.

The blood test results, along with the echocardiogram, have led Dr. Costanzo to believe Patty is suffering from pericarditis. This is the swelling and irritation of the pericardium (the sac surrounding the heart.) You may recall that a small incision was made in Patty’s pericardium to allow for the insertion of the HeartNet. I gather that the pericardium is no fan of being touched; Patty’s apparently threw a tantrum.

Certainly, many of the symptoms I’ve described yesterday and today are consistent with pericarditis; the one strange variation is that while discomfort is most often felt toward the left shoulder, Patty’s pain has tended from the right to the center. From what I’ve read, the condition can become serious if untreated, but most people recover without any long-term consequences. Please knock on any wood in your immediate vicinity.

This new wrinkle in Patty’s storied medical history will result in her being treated to an all-expense-paid five-week trip on the good ship Prednisone (a corticosteroid). This is a journey Patty had little interest in taking; in fact, I think she's fairly heartbroken.

These steroids can have a number of somewhat unpleasant side effects, including weight gain and water retention. Many people describe a condition dubbed “moon face” because the patient’s face tends to have a round, swollen appearance while the person is taking the steroids. I think Patty will ultimately cope just fine (just don't expect to find a smile on her moon face). For my part, as long as Patty doesn’t grow (a) a handlebar mustache, or (b) a penis, we're golden. She took her first three pills (60mg...the maximum starting dose) at 5pm today. Thirty-five minutes have passed and she looks just like she did at 5:00.

There’s a touch of irony here, because until today we hadn’t heard mention of lupus and/or other autoimmune disorders in some time, nor did we expect Patty to be taking steroids without having a heart transplant. It's ironic, but not amusing.

Needless to say, Patty is by no means thrilled about these latest developments, but the enemy you know is almost always better. Still, I’m frustrated that Patty seems to be ailing so much from a procedure that for many seems to promise a better quality of life. She may well get there, but the first few weeks haven’t exactly been a picnic.

If it seems that I'm being a bit light about this, credit too little sleep and too many days hanging around hospitals…it makes one punchy. To be frank, this really sucks. I wish so much that Patty was feeling better. She was so hopeful going into this study, and now she's starting to feel down about the choice to participate.

One last little interesting tidbit – a couple of times over the past 24 hours, Patty’s EKG revealed an inverted T wave. This is sometimes indicative of a pulmonary embolism, which I guess most of us don't want. Fortunately, the CT scan last night ruled that out. Also, she had a venous ultrasound of her legs today to ensure she doesn't have any blood clots. She doesn't. See? It's not all doom and gloom.

I’ll provide more details as they become available. We've been told Patty should be able to go home sometime tomorrow. I'd like to see her at home; steroids or not, she looks better there.

Love,
Brian

Still waiting...

2009-07-28T11:22:00.000-07:00

Hi everyone:

Patty's discomfort has been reduced somewhat by IV pain medication. Obviously, doctors are going to need to get to the bottom of the problem, because I don't believe these meds will be made available for home use. Consequently, I suspect Patty will be staying at least one more night.

We're waiting to see Dr. Costanzo, who has ordered an enormous batch of blood/urine tests. She will also be reviewing the results of the echocardiogram. Hopefully, by this evening, I'll be able to share some answers or at least some ideas as to what might be happening. The markers that indicate damage to the heart aren't present, which is encouraging...except that these also weren't present when Patty restenosed in 2005. The only other thing I've heard is that Patty's white cell count was somewhat elevated this morning.

So, as you should be able to tell, I have no idea what's going on. More soon...

Love,
Brian

Back in the Cardiac ICU

2009-07-28T06:04:00.000-07:00

Hi everyone:

Patty is back in the cardiac intensive care unit at Edward Hospital.

Late last night we came to Edward's ER because Patty was again experiencing discomfort similar to her earlier restenosis. She was feeling pain across her collar bone and through the center of her back; this pain continues, with little reduction in severity, this morning. I was especially concerned because this time Patty made the call to go to the hospital; usually, she needs a fair amount of coaxing or an outright order ("you're going").

Patty's blood draw from last night suggested an elevated level of D-Dimer, a marker that can be quite meaningful or quite meaningless, if I understand correctly. Elevated levels may mean that a person has clots in their blood...or it may just suggest that the patient has recently undergone surgery. As a precaution, doctors ordered an echocardiogram (finished about 20 mins ago) and a Doppler scan of Patty's legs (presumably in relation to the D-Dimer measurement). Our understanding is that a cardiologist will be checking in with Patty sometime this morning.

I'll keep you posted about any updates. As mentioned, Patty is in a fair amount of discomfort that, so far, no amount of morphine or dilaudid has been able to squelch. She did sleep for about two hours last night, and had dozed off when I left her room a few moments ago.

Please keep your fingers crossed that this is just another step in her recovery from surgery. Of course, being who I am, I'm very nervous. Stand by...

Love,
Brian

Still ailing

2009-07-22T14:26:00.000-07:00

Hi everyone:

Patty is still ailing. Her incision scar hurts even more today than yesterday, and the nausea continues to be fairly persistent. Her low-grade fever was back this morning. So far, she has not thrown up today, which is progress from the two days preceding. Yesterday, Patty visited the nurse-practitioner (affiliated with the surgeon), who said that some pain and other symptoms are to be expected still, and likely for some time. Patty is worrying a bit about how much strength she'll have a month from now when she'll be expected back at work.

Last night, we had a bit of a scare when Patty started feeling symptoms identical to those she had when she experienced a restenosis of her artery (Mother's Day 2005). Specifically, she was feeling a dull ache across her collar bone and through her upper back. Of course, these symptoms can be meaningful or meaningless; they went away after an hour or so, so we won't put much stock in them for now.

That's the latest...I'll write again when there's any news.

Love,
Brian

Good and bad

2009-07-21T08:50:00.000-07:00

Hi everyone:

Patty has been fluctuating between doing fairly well (she's been having fewer breathing problems and arrhythmias) and fairly poorly (she's vomited several times over the past few days). She's frustrated because she's feeling just enough under the weather that she's not up for most activities. Last night, she somehow aggravated her incision site, which is now much more painful than it had been in days prior. Our overall impression is that she's improving, and that these are blips along the way to full recovery. Keep your fingers crossed. I'll check back within the next couple of days to provide an update.

Love,
Brian

A little better?

2009-07-18T08:27:00.001-07:00

Hi everyone:

Sorry for not providing updates for a day or so. Patty seems to have improved somewhat, although she still has some breathing struggles and spent much of yesterday battling nausea. She's also had some funny heart rhythms, which we hope are just a function of her heart acclimating to the new device.

We've tried to work in some walks, because her doctor thinks some of the breathing problems may relate to deconditioning. Keep your fingers crossed that she's on the mend.

Love,
Brian

The warrior...and the worrier

2009-07-15T10:35:00.000-07:00

Hi everyone:

This morning, Patty is struggling even more with her breathing. Her temperature this morning was 100.4 degrees, and her blood pressure was at 69/56 (HR 84bpm). Deep breathing is painful, and she's feeling nauseous. The last time I saw her like this was just before she was put on the Milrinone drip--remember the black handbag and tubes?

Patty thinks I'm overreacting, and has assured me that this is merely a setback before she bounces back completely. I hope she's right. For my part, I'm not reassured, because my understanding was that patients usually improve the further removed they are from surgery; so far, with Patty, this isn't the case. To be fair, her pain from the surgery has definitely become more manageable; it's the other symptoms (the heart failure ones) that trouble me now.

What worries me more than anything, though, is that most of the tests yesterday suggested that Patty should be feeling much better than she is. The amount of fluid still in her lungs shouldn't be making her feel this way. If symptoms suggest something's awry but little evidence backs up the symptoms, how do doctors know what to treat, and how? The echocardiogram yesterday came back with nothing out of the ordinary.

Patty has an appointment with Dr. Costanzo tomorrow. With any good luck, Patty will be totally fine by then and I can flog myself here for being such a baby about all of this. It wouldn't be the first time.

Love,
Brian

P.S. You may find the comment from the post yesterday (the one with the photos) quite interesting...I know we did. It's a summary of the recovery of another HeartNet recipient.

More hospital pics

2009-07-14T12:16:00.000-07:00

Hi everyone:

During Patty's recent hospitalization, I used my phone to take most of the photos I posted (hence the poor quality). I did take some pictures with the camera, however; so, for those of you who just can't get enough of hospital photos, here's a few more; remember, you can expand the pictures by clicking on them.

Love,
Brian

Patty before the surgery (too early to be smiling like this)

Kiddo, Patty, Kelly (just before Patty left for surgery)

Patty just after surgery (two views)

Perplexing...

2009-07-14T09:58:00.000-07:00

Hi everyone:

At Dr. Costanzo's suggestion, and based on our calls yesterday, Patty visited the hospital this morning for blood tests, urinalysis, a chest X-ray and an examination. If I understood correctly, everything seemed normal except for the X-ray, which showed that Patty had more fluid in one lung than when she left the hospital last week. Dr. Costanzo has increased Patty's dose of diuretic in hopes the volume of fluid can be reduced.

After examining Patty, Dr. Costanzo also arranged for Patty to be squeezed in for an echocardiogram, for which results were requested "stat". Like us, I think Dr. Costanzo is perplexed as to why Patty is showing heart failure symptoms when her stats suggest otherwise. Even in the examination, Patty's struggles with breathing were quite evident.

As soon as we have updates, I'll share them here.

Love,
Brian

Setbacks?

2009-07-13T09:11:00.000-07:00

Hi everyone:

Well, Patty had seemed to be improving, but of course couldn't fully recover without experiencing at least something out of the norm. The pain from her surgery site has become more bearable, although she still feels sharp twinges from time to time, especially when standing or lowering herself into a chair.

What has rattled me a little is that Patty's breathing seems to be getting worse. She feels constant pressure ("an ache") in her chest, and cannot take deep breaths because they cause her pain. She has also been running low-grade fevers (right around 100) over the past two days. And, as mentioned previously, she's felt strange flutters in her heart, some which end quickly and others that last for some time.

If by later today this discomfort and/or fever persists, I'm going to call her doctors (hopefully, I'll even be able to get past their handlers to reach one.) I'll provide updates if we learn anything more.

Love,
Brian

Still doing well

2009-07-09T11:00:00.000-07:00

Hi everyone:

Patty is doing well--enough so that I'll probably be a little more quiet on here in the days to come (unless, of course, something else transpires.) Patty has had some arrhythmias over the past couple of days, although I don't think they're any cause for worry. And, of course, she's still experiencing some pain, but the meds she's taking are helping a lot.

That's all for now.

Love,
Brian

One more thing we've learned

2009-07-08T09:28:00.000-07:00

Hi everyone:

Here's another thing we've learned...apparently, nobody on earth is supposed to try to reach a cardiologist outside of working hours, for any reason. Twice in the past couple of days, Patty has needed to address an urgent issue, only to be told by a nurse (in the first instance) and by an answering service (in the second) that her concern did not merit paging a cardiologist. What puzzles us is that the cardiologists themselves don't seem to feel this way; it's their handlers that apparently see them as rock stars.

Love,
Brian

Same bat time, same bat channel

2009-07-08T08:53:00.000-07:00

Hi everyone:

When we last left our fair maiden, she had narrowly escaped a harrowing experience under the ever-churning tracks of a sometimes indifferent medical juggernaut. Her hero/husband, Captain Superstud, had used his bulging biceps and fists of steel to...

...oh, scrap it, I can't write good fiction.

As I mentioned last night, Patty is home. She had a great night of sleep, and is looking forward to a morning shower without an audience of nurses. Of course, she'll have an audience of me (for her safety only, of course), but at least she's able to use her own stuff in her own digs.

When we left the hospital yesterday, we stopped at Walgreen's to fill prescriptions for pain medication and diuretics. Of course, when we presented the paperwork to the pharmacist, we heard, "On this Norco, they haven't marked a quantity. We've called the doctor, but haven't received a return call." Fast-forward 45 minutes. We have tried to reach just about everyone with whom Patty has had contact over the past week, in the hopes that someone--anyone--can address a minor problem that is quickly evolving into a major one, because Patty's pain medication is wearing off. Nobody is answering, nor is anyone returning calls. Kathleen is comforting Patty, and I'm inside hovering near the prescription drop-off, thinking that my incessant pacing will inspire additional action. Not so much.

Finally, we went home and contacted the last nurse to care for Patty on the step-down unit; she paged the surgeon, whose service contacted another doctor in the practice, who called Patty and finally made arrangements with the pharmacy. Of course, by this point, Patty was in pain, totally distressed, bordering on hysterical, not entirely the nicest person to be around, faintly menacing and, in the heat of the moment, saying things like, "I've been used and just tossed aside." Everyone Patty loved just a few hours before is now part of a vast conspiracy to cause her injury. I will say, though, it was upsetting to see Patty once again in distress because of an oversight (and one we took pains to prevent), particularly after a really unpleasant time just a day before.

So, the lesson of the day for yesterday was: don't ever leave the hospital with prescriptions for medicine you desperately need without ensuring a quantity is marked. Of course, we had checked, had asked, and had been told, "Oh, no, with pain meds the doctors don't mark the quantity. They just provide instructions that the pharmacist deciphers." Okay, for those of you who are better than me at math (or, in other words, anyone older than age three), solve this little equation:

A doctor provides a patient with a prescription for pain medication. On the pad, he writes, "For pain. Every four hours for first two days, as needed thereafter." How many pills would the pharmacist put in the bottle?

Huh?

Love,
Brian

She's home

2009-07-07T22:58:00.000-07:00

Hi everyone:

I was just about to head off to bed when I realized I hadn't provided a fairly significant update -- Patty is home. Of course, there's a troubling story to be shared about the journey from there to here...it wouldn't be Patty if there wasn't. Yes, folks, what we have here is a cliffhanger...

Tune in tomorrow...

Love,
Brian

BREAKING NEWS

2009-07-07T09:36:00.000-07:00

As I was putting the finishing touches on this morning's first entry (the huge tome below), we received updates. Every 10 seconds, it seems, someone else pops in. The plan now is to try a staggered mix of Norco and Dilaudid, which should keep Patty comfortable (and/or high as a kite); the biggest issue will be Patty's ability to tolerate the mix without nausea (please knock on wood). A member of Dr. Costanzo's team also popped in to help provide some answers about last night (basically, the bottom line is, as we said, miscommunication).

And here's one bit of very, very, very good news -- if things get resolved this morning, Patty should be going home this afternoon. I can't even begin to tell you how excited I am about this. I don't think Patty's disappointed, either.

More soon...

Love,
Brian

Hell night

2009-07-07T08:03:00.000-07:00

Hi everyone:

Were you anticipating that this morning's blog entry was going to sport a celebratory theme--all balloons, streamers, confetti and such? I know I sure did. Alas, Patty knew that when her story was made into a movie, a plot twist would play better with audiences--so she delivered. The most frustrating part to Patty, to her doctors, nurses and to me is that this experience, which I'll describe shortly, could largely have been avoided. Not to preach from a soap box, but anyone considering a procedure such as this needs to make sure the lines of communication are clearly defined, because miscommunication leads to comedies of errors. Unfortunately, these comedies are like Tyler Perry films--painful to watch, not at all funny, and incessant.

I left the hospital last night shortly after 8pm, feeling confident that Patty would at last have an uneventful evening. Patty had resolved the "poop" issue, and that's all we'll say of that. Kelly had been wanting a "slumber party" of sorts with her mother, and we saw no reason to object. Over the course of the evening, Patty called me several times, and I must have been missing some subtext, because she was actually sounding a bit crazy to me. She just seemed to be getting increasingly overwrought about some exchanges she was having with nurses, and irritated with me for not getting what she meant. I offered to return to the hospital, but Patty said no, and things were left at that. Of course, knowing what I know now, I feel like an idiot.

At around 1am, Kelly called me to let me know that Patty was in as much pain as when she came out of surgery, so I came back to the hospital and spent the night. Over the next little while, the whole picture of what was going on started to become more clear.

Early in the evening, a tech from the pain management service visited Patty to discuss a plan for managing pain when Patty came home. The biggest issue has been that Norco, the current narcotic that Patty is using, is reducing the pain but still allowing enough through that Patty has difficulty functioning. Doctors have been wanting to move Patty off I.V. pain medication (Fentanyl) because she can't have it as part of her regimen at home. Several possible options for drugs that could perhaps "bridge" between Norco doses were dismissed because of the associated dangers to heart failure patients. Patty had been using a topical pain relief patch (basically to numb the area near her incisions); this offered some degree of relief, but was DC'ed.

The I.V. medication seemed to still be the best option to get Patty through the night. However, for reasons that baffle just about everyone, they decided to leave the I.V. pole with the medicine in the room, but not connected to Patty. Theoretically, the pain management people wanted it there in case Patty needed it; unfortunately, the communication aspect fell through, so as far as the nurses were concerned, it was basically just a decoration in the room, not to be touched.

What's more, Patty was supposed to be able to receive an I.V. dose of Benadryl late in the evening, because we had discovered it made all the difference in getting Patty through the night. Somehow, the Benadryl and the Fentanyl were both DC'ed, so Patty was pretty much flapping in the wind in terms of pain management through the night.

When Patty pressed the issue, the nurse told Patty, "I don't want to bother the cardiologists at home over this," so instead she called a colleague of a former G.P. of mine, who I haven't even seen in years, and asked him to make the call about Benadryl. The only reason this doctor was on the records at all was that Patty long ago needed to name a G.P. for admission to Edward Hospital; since her own G.P. had just retired, and Patty had seen my doctor once, we listed his name. Subsequent to that, we have provided a name of another G.P., but that somehow didn't stick. With no knowledge of Patty or what she was going through, this doctor decided that Patty could have Benadryl, but only an oral dose, which was useless. Is anyone saying, "Huh?" yet?

As the evening progressed, Patty's pain worsened. By 1:00 am, even a recent dose of Norco did nothing to touch the pain, especially when Patty got up to go to the bathroom. Kelly went to get the nurse, who offered morphine instead of the Fentanyl, and said that the latter was not an option.

Kelly called me at home, and their slumber party was over. I came back to the hospital, and things just got more surreal. Finally, the pain management service was called, and an anaesthesiologist came by. He seemed a bit irritated that more pain solutions were being called for in the middle of the night by a patient hoping to go home the next day; basically, he was saying, "I can give you the Fentanyl, but it's a step backward." Ultimately, we persuaded him to give Patty the I.V. Benadryl, which helped get her through the night.

This morning, the study coordinator Jeanne, Dr. Costanzo and an associate of hers, were none too pleased with what had happened. We're still hopeful that all of this can be resolved today, so that Patty can go home. The biggest bright light in all of this is a new nurse for Patty, who is (a) hilarious, (b) a little intimidating, but in a good way, (c) an absolute advocate for her patients, and (d) adorable. I told Patty that I thought I had a bit of a crush. This nurse seems like just the person to be helping Patty along on a day she's hoping will end with a car ride home. We're formulating our plan to kidnap this nurse and take her home with us.

Love,
Brian

P.S. For anyone who doesn't know Patty personally but may have happened upon this blog because you're a candidate for the HeartNet procedure, know this--in spite of all the pain and frustration, Patty still has no regrets about participating in the study. Just make sure you ask lots of questions, be sure of the answers you're getting, and insist upon clear, open communication throughout. Time will tell if the HeartNet will make any real difference, but Patty is an optimist, so hope is a good start.

One more day...hopefully?

2009-07-06T15:22:00.000-07:00

Hi everyone:

During a conversation late this morning with Dr. Larkin, a colleague of Dr. Costanzo, he suggested that Patty has a reasonable chance of getting out of here tomorrow, provided a few things resolve themselves by then.

Naturally, all we heard was, "You're going home tomorrow." A few moments later, when he said, "We'll try to get you out of here in the next day...or so.", we heard, "You're going home tomorrow." If they tell us otherwise tomorrow, we'll simply pretend that Patty can't hear until we've loaded her into our car and pulled away (with them chasing after us, yelling), whereupon I'll turn to Patty and say, "Did you say something?" When nurses have said today, "See you tomorrow," Patty has just smirked, because she knows she's leaving tomorrow.

For Patty to leave tomorrow, as has been promised, here's what needs to be worked out:

Pain management is a key factor. Patty needs to be able to function with meds not delivered via I.V.; she has cut down considerably, but has still had moments in which she had to "push the button."
Respiration is a bit of a concern still, although everyone seems to feel that Patty could deal with this at home, perhaps with oxygen brought to our house.
And the last issue is one to which anyone who has required several days of narcotics and anti-emetics can relate; she has to resolve a constipation problem (or, as her nurse refers to it, "that pooping thing.")

Patty found out today that much of her pain may have been worse than in "typical" situations, because (a) she was unable to receive the epidural, and (b) Patty's torso is smaller than that of most other patients who have been through the procedure, so more stretching between the ribs was required to place the device; fortunately, though, the stretching worked, because the only other option would have been to break one or more ribs.

In my opinion, Patty looks much better today than on any other day since she arrived. She's been walking regularly and at a relatively brisk pace, and has spent most of the day in a chair rather than in bed. She's even getting a bit of an appetite.

No wonder her doctors have made an oath, on their grandparents' graves, that Patty will be sent home tomorrow.

Please keep your fingers crossed...

Love,
Brian

P.S. If doctors have simply been playing a cruel trick on Patty--you know, saying "You're definitely going home tomorrow" when what they mean is, "You might not be going home for another day," they can reasonably expect a couple of very antsy people in room 2623 from daybreak Wednesday.

Not for the weak of stomach...

2009-07-06T14:57:00.001-07:00

Hi everyone:

Okay, for anyone who gets into this sort of thing, as I do, here's a couple of terrible-quality images of Patty's surgery scar and the hole from her drainage tube. In a separate post, I'll update you about Patty's condition.

Cheers,

Brian

The surgery scar

The hole from the tube

Good things and things that suck

2009-07-05T09:16:00.000-07:00

Hi everyone:

I think this is the longest I've gone without writing an update since Patty's been in here (he says, as though she's serving five-to-ten for armed robbery). I'm so ready for Patty to come home now; unfortunately, her doctors don't share this sentiment as yet. To be honest, I can tell she's not there, either. More on this shortly.

If it's not immodest to boast shamelessly about someone else, I have to say I'm incredibly proud of my wife; she is doing everything they've asked of her, and then some, to make sure all of this is worth it in the end. From the moment she considered participation in this study, she's understood and embraced the "short-term pain, long-term gain" mantra. And, without question, she has endured a tremendous amount of short-term pain. I'm so hopeful that her future will be brighter because of this. In any event, she impresses the hell out of me. She's a star.

Speaking of stars, Edward Hospital posts certain patient-specific warnings outside the doors of the rooms. Some warn about latex allergies, others confirm a nil-by-mouth protocol and so on. I was puzzled, though, by an image of a falling star, and asked Patty if she knew what it meant. She answered, "Don't you remember?" I didn't. She went on, "Those are the people who fall all the time." For some dark reason, this struck me as terribly amusing, so I laughed and laughed until I made eye contact with the scary nurse again (naturally, we call her Nurse Cratchitt...but not to her face). I'm sure some of you are saying, "He wouldn't find it so funny if he was the one who could fall and hurt himself." Duhhhh...

Good things:

Patty has lost almost all of the water weight she had put on since the operation. To accomplish this, she urinated a party keg over the past 24 hours.
Jeanne, the study coordinator, gets applause from me, from Patty and from everyone else pulling for Patty--she came in yesterday, on an off-day, even though her own daughter was sick, to make sure Patty's upsets of yesterday morning weren't the upsets of her afternoon. Thank you so much. (And am I spelling your name correctly? If I'm subtle, maybe nobody else will notice that I've possibly been diminishing another's identity)
Patty is up and walking around; she's using the "bong" to strengthen her re-inflated lung; and she's becoming increasingly independent while using the bathroom, getting in and out of bed and performing other activities. She's not comfortable, but she's trying to get a sense of self-sufficiency back.
Neil is here. Kathleen is here. When they're around, things seem safer, somehow.
Patty received flowers yesterday from my parents, Bob and Bev (I've nicknamed them Mom and Dad) and from Dave and Flavia. I'm a guy, so I don't really describe flowers, but they look nice, and the vase they're in may one day serve as a very nice, albeit large, cocktail glass.
I stopped at Walgreen's this morning to grab a couple of Patty-requested supplies for the Sin Bin. If you don't know what I'm talking about, do a search of the blog for the words "chocolate" or "dangerous sugar high" and you should find some references. While at the checkout, the female employee asked if I was married to "Mrs. O.C." (the name students address her by). I said yes. The girl introduced herself and then said, "She was the best art teacher I ever had." We hear this a lot, and it makes me understand why some people teach; I had always thought it was because of the huge salaries. Personally, I would rather clean up after elephants, but I'm impressed by those who find a passion for it.
Patty gets to take a shower today.

Things that suck:

The late innings of yesterday's Sox game. Missing Denise's and Kevin's party (take pictures, guys). Being out of touch with Devin and Colin, and fretting about the logistics of seeing them this summer. And Patty, when she's using her "bong" to improve her lungs.
Patty has eliminated so much fluid the past couple of days that she is deficient in potassium. To rectify this, she was given a supplement that is roughly the size of a regulation football. We know that what comes up, must come down; in this instance, the opposite was true. Patty tossed the football.
Patty is still in a considerable amount of pain, in part because she's following doctors' instructions and cutting back on IV pain medication in favor of oral narcotics, which aren't quite as effective because they take longer to work.
The latest whispers, which I've wanted to hear saying, "Monday", sound suspiciously like they're saying "Wednesday".
To put it bluntly, Patty sounds like shit. Her breathing sounds more labored than ever, even though she's doing everything she's been asked to, and then some. She coughs from time to time, and this sounds unpleasantly wheezy. I told Patty that I'm hoping this is one of those situations in which things are somewhat worse before they get a lot better; is the correct expression, "It's always darkest before the dawn?"

On this same theme, the doctor from Dr. Cziperle's team told us something today that surprised us. Apparently, when a lung is collapsed, as Patty's was, it may take a number of days before the lung is fully reinflated. What came to my mind was a new, yet-to-be-inflated balloon, where the walls of the balloon are stuck together and require some force to pull them apart. If my metaphor is at all accurate, this would explain the importance of Patty using "the bong" as much as possible, to be able to pull the last of the lung tissue into action.
Patty is feeling quite weak today, more so even than yesterday. Again, I'm hoping this is just a slight decline before a faster incline...we shall see. I thought she would be further along at this point. The good news is that every time I describe a setback on these pages, it's better by the next time I write, so let's hope the trend continues.

Well, I think that catches you up. If anything of consequence happens as the day progresses, I'll write again. Thanks again to all for everything.

Love,
Brian

Morning of mixed messages (and a little alliteration)

2009-07-04T07:42:00.000-07:00

Hi everyone:

Well, I started out writing one type of blog entry this morning, and now am writing quite another. We have really been quite confused for a few hours, but feel quite a bit better after talking to the study coordinator. At 7:00 this morning, Patty was told by a doctor she'd never seen before that she would be moving in just a few minutes to the step-down unit. We know that stepping down is normally a good thing; we just didn't know if we should consider it that, because we had little time to pose questions before the move. And if you know us, we do like our questions.

The doctor told her that all of this was part of gearing up for sending her home; this again was a surprise, since we had been warned that Patty would not likely be going home until Tuesday at the earliest, because of the four issues I mentioned yesterday--none of which have been fully resolved, to the best of our knowledge.

So here we are, in room 2625.

Patty spoke with Jeanne, who in turn spoke with Dr. Costanzo, and I think things are now in good hands. Patty was told to get walking, which she did with MaryBeth and I. She did well, albeit with some discomfort. We're still hoping for some clarification, but at least we're not ready to start tossing things around the room (except for one nurse to whom I plan to give the evil eye at every opportunity...but I digress). So, we were ready to have a fit about an hour ago, but are calming down now. If they're focusing on getting Patty out of here, we will, too. Next goal: home by Monday. Think she can do it?

Love,
Brian

P.S. You would have LOVED the first draft of today's message--it was all bile, and fire, and brimstone. I was a different man then.

Some photos

2009-07-03T18:50:00.000-07:00

Hi everyone -- Here are a few photos from today. Sorry for the poor resolution; they were taken with my phone:

The breathing exerciser (AKA "the bong"); every time Patty uses it, she hurts

This shower cap shampoos your hair without making it wet; for some reason, I'm thinking of 18th-century France

Catching up on the blog, Facebook, etc. tonight

Love,
Brian

Early milestones

2009-07-03T18:14:00.000-07:00

Hi everyone:

Patty accomplished two things later in the day that are significant in terms of her recovery. First, she went for a walk. The total return distance was approximately 30 feet, and each and every step was punctuated by searing pain. I think Patty was frustrated and disappointed, while everyone else was practically cheering. Even through the tears, you can tell she's a tough customer. Patty has a wonderful nurse, Tamara, who is part advisor, part cheerleader and entirely a good person.

The second accomplishment was getting out of bed and using a commode next to the bed. On the surface, this sounds like nothing much, but it involves quite a bit of bundling wires, shifting position, lowering the legs, supporting the arms, lifting, turning, sitting, standing (okay, you caught me...I skipped peeing and wiping) and basically the reverse of everything that preceded it. Again, all of this is painful for Patty, particularly since they've continued to give her Lasix, which makes this whole exercise one that is necessary every 15-20 minutes. The diuretic is necessary because Patty's feet and ankles are quite swollen, which was not a common occurrence for Patty even in heart failure days of the past.

We've been hearing murmurs that Patty isn't likely to escape the hospital until at least Tuesday, and some think even that is optimistic. The key issues at this point are:

(1) pain management--I've seen little to suggest we've made much ground here; they've changed the delivery method, but she's still needing a lot and it doesn't seem to be sparing her much pain

(2) oxygenation -- Patty's pulse-ox is okay until she removes the oxygen, at which point her oxygen level drops; the theory is that this will take care of itself. Her nurse reduced the oxygen level for tonight, to see how she does...I'll let you know the outcome.

(3) edema/urine output -- Patty is holding on to a lot of fluids; she's urinating frequently now, because of the Lasix, but she's still swollen. She's probably not going anywhere until this is fully resolved.

(4) inotrope removal --right now, she's being given dobutamine to strengthen her heart pumping (remember milrinone from Patty's days past?), especially while she's experiencing heart failure symptoms (swelling, arrhythmias, dyspnea, etc.). I really hope this is resolved quickly, because this makes me most nervous of all...especially since Patty has been largely asymptomatic for a couple of years.

If I was going to assess Patty's situation right now, I would say -- if moving, not so good; if still, pretty good. I'll write again if there's more to share...otherwise, have a great night.

Love,
Brian

P.S. I'm staying at the hospital again tonight.

Why do I even bother?

2009-07-03T11:14:00.000-07:00

Hi everyone:

I'm not sure I should be writing this often, because Patty can't seem to stay in one state for any amount of time. I write one thing based on what I've seen and heard at a given point; an hour later, when someone visits, they look at Patty and think I'm a pathological liar. "I came here to see a real-life sick person...what is this?" Stick around. It's like all those jokes about Chicago weather...if you don't like it now, wait five minutes.

This morning, Patty looked like death warmed over. Honest. If you were to look at her now, you'd think she was ready to pack up and head home. I prefer the latter state. Since I last wrote, Patty was visited by the surgeon, who gave his blessing for the removal of the drainage tube (it's gone now, much to Patty's relief.) In the next hour or so, she's going to start moving her pain medication from intravenous to oral. She's also going to be up and walking, a precursor to having her urinary catheter removed. So, as of 1:22 pm, Patty seems to be doing great. At 3:22, she could be hanging by a thread. The upshot of all of this is that we haven't the faintest idea of when to hope she may make it home. But I'll take her feeling the way she's feeling at this moment, even if it means waiting an extra day or two.

Welcome to Jekyll & Hyde: The Medical Musical. We'll be here all week; no, wait, we'll be gone after tonight; no, hold it, three more, no, maybe not, try two more days. Yeesh....

Love,
Brian

From bad to worse

2009-07-03T08:17:00.000-07:00

Hi everyone:

One of the cardiologists evaluated Patty this morning and determined that she's likely experiencing a degree of heart failure. Her feet and legs are somewhat swollen, her breathing is more labored, her lungs continue to have some fluid in them (which is making her sound raspy and causing her to cough from time to time) and her urine output has been low. She has also been feeling weaker and more shaky than was the case for much of yesterday.

If I understand correctly, she's gone from too "dry" to too "wet", but has done so without the benefit of eliminating some of those liquids. To address this, the cardiologist ordered a dose of Lasix, which caused Patty to pee more in one hour than she did all of yesterday (I believe racehorses are often mentioned in this context). She's still swollen, but this is probably a step in the right direction. As expected, she will be staying in the ICU at least for today and, were I a betting man, I suspect she will be here tomorrow as well.

In spite of her day being substandard, she has had some sunnier moments. She's been sitting up, albeit not in great comfort. She has eaten a little, but with little enjoyment of the food. All in all, I think she's pretty miserable, although she's been very calm and cooperative in spite of the various indignities.

An echocardiogram was performed on Patty this morning. The test had been previously scheduled, so it wasn't something new that arose because of Patty's symptoms. However, the cardiologist thought it might provide some information useful in plotting next steps. So, if we get any answers, we'll make sure you get them, too.

We miss Neil. He makes Patty feel an extra dose of security, I think, and he has an uncanny knack for keeping me sane and focused when I'm having my more freaked-out moments (even when he's somewhat freaked out himself.) And as much as we rely on Kathleen and love her presence, we're relieved not to have seen her so far today, only because we know she'll wear herself out before she'll stop trying to help. Still, she's missed as well.

More soon...

Love,
Brian

P.S. Several times while we've been here, I've seen spouses, children and grandchildren all battling sadness associated with ailing loved ones, all of whom have something wrong with their hearts. Some are old, and some are strikingly young (even in comparison to Patty). It's all so sad.

Still not on top of the world

2009-07-03T04:25:00.001-07:00

Hi everyone:

Patty still doesn't seem to be making a great deal of progress in her recovery; perhaps someone will tell us otherwise today, but any improvement isn't immediately obvious to a layman like yours truly. As Patty described things, she's "just having another bad morning." When Patty arrived for surgery on Tuesday, I had entertained ideas of Patty being super-efficient in bouncing back and getting released today; instead, we're now hoping she'll progress enough to move to a step-down unit by tomorrow.

Even this seems like an ambitious target, since the drainage tube in Patty's side is both still in place and still showing evidence of air draining, which suggests that any lung perforation hasn't gone away. This is a far cry from the "hour or so" we had been told such micro-tears take to heal if they appear after surgery. I'm not maligning the medical team; I believed then, and believe now, that they presented an honest and accurate picture of what would happen in the vast majority of situations. They just didn't know enough about Patty's tendency to make the simple seem complicated and the routine seem bizarre.

I think this, more than anything, is why both Patty and I find ourselves frustrated, at times, with the whole process. I can say, and did say, "Giving Patty real blood makes me nervous," only to hear, "Oh, there's nothing to worry about." Hours later, Patty experienced a reaction to the blood (fever, headache, shakes)-- not, of course, when such reactions normally happen, but hours later, when she should have been fine. Another thing that happens is that one medical professional says one thing--say, "There's a very remote chance that this could happen--too little, really, to worry about"--and when it does, another medical professional will say, "This is not at all unusual."

If I'm ever in a position to impact medical care, I want to educate medical personnel to (a) always present all the possible outcomes, even if the odds seem remote, and (b) never discuss a patient's condition with the patient in a manner any different than they would with another medical professional. If it could be something, tell the patient, tell the spouse, and give us the odds. If you're going to test for something, just to be sure, tell us what you're testing for. Let us be part of the conversation. But it makes me crazy when I hear "oh, don't worry about that" when one look at Patty tells me exactly why I started worrying.

Still, I have to say that the nurses and doctors here are far more open than others Patty has had. Nobody has come to us and said, "If you make an open book about your wife's medical condition, you have to understand when your wife's doctors refuse to share information with you." I still get chills and a wave of rage whenever I recall this. All we do here is try to tell Patty's story with all the high-fives and all the warts, and with all the feelings associated with the situation. If something works, we celebrate. If something doesn't work, we worry. In the process, those who love Patty get a pretty good idea of how she's doing.

I'm doing it again...bitch, bitch, bitch...let's get back to Patty:

According to her nurses, Patty's urine output is still below what would be expected, and is quite concentrated and dark, although the volume has increased a little since yesterday. The drainage from her lungs continues to contain air bubbles, which would suggest that any lung perforation is still there, and not healing within hours after surgery as we had been told is the norm. I hope this ultimately doesn't require a trip back into Patty's chest for repairs.

This morning, Patty added raspy coughing to the mix, which just increases the discomfort at the incision site. Several times each day, Patty "exercises" using a respiration testing/strengthening device labeled 5000 Voldyne, which I have renamed as "the bong" for easier identification. She takes deep inward breaths which raise an inner tube against a graduated scale; this strengthens her lungs (ostensibly) and hurts her a bunch (clearly). One reason for using it, we've been told, is to prevent pneumonia. Naturally, the mere mention of this means it's very likely Patty will soon have this arise as a complication. It's like watching a no-hitter and saying, "Hey, Buerhle's pitching a no-hitter"...oops...not any more he isn't. Knock on wood...no more odd blips in Patty's recovery.

I'm going to go back to Patty now. She's still in decent spirits, all things considered, and that's half the battle, I think. More soon...

Love,
Brian

P.S. Next time, I'll try to be a little more sunny; it is a holiday weekend, after all

And so it continues...

2009-07-02T19:09:00.000-07:00

Hi everyone:

Well, here's the latest. After receiving the blood transfusion, Patty developed a fever that quickly climbed to 100.7 degrees. Patty's nurse through the day was very attentive to any changes in Patty's condition, so she was able to move quickly with Benadryl and other drugs and the fever seems to be easing down. Of course, the question that comes to mind is, "Why the fever?" With Patty, there's always something...always. I'm quickly coming to the conclusion we should be asking for a fireworks-facing room for the 4th, because I don't think our patient is escaping for at least a few days.

Thanks to our neighbor Sandy for hooking our family up with a pasta dinner tonight; it would be nice to get home soon so I can enjoy some of these treats.

If anything else transpires tonight, I'll write; otherwise, I'll write as soon as I can tomorrow.

Love,
Brian

Not fun at all

2009-07-02T14:34:00.001-07:00

Hi everyone:

Dr. Costanzo visited Patty a short while ago. She expressed concern that Patty was not producing urine at a normal rate, given the fluids she's been receiving. She also reviewed Patty's labs and charts and said that Patty's haemoglobin was quite low. She decided to administer a unit of blood, which of course set off the infamous Antibody Alarm bells in my head. When I asked Dr. Costanzo if these could cause Patty's antibodies to increase, she said, "Increase to what?" Not much ambiguity in that response, would you agree? It's one of the many reasons we love Dr. Costanzo so much.

Patty is also very "dry", so much so that Dr. Costanzo can hear the brushing of the Heart Net against the inside of Patty's pericardium (I immediately pictured a tumbleweed trapped against the swinging doors of a saloon...where did that come from?)

None of these issues are, from what I've been told, any real cause for worry. So, of course, I'm worried sick.

Have you ever felt what I'm feeling? That doctors, nurses and any other sort of expert can tell you that everything's just fine, and on the surface you have no reason at all to doubt them--and yet there's still that niggling voice, that annoying hunch, that very subtle sense that there's something they may be missing that you're picking up on only because you know this person so well? I'm not suggesting any of these concerns are especially serious, just that once again Patty is enough different from the norm to puzzle those caring for her. This sounds so arrogant of me, and actually a little nuts, and that's not my intent. Patty's in great hands. I'm no expert. I just so much want this experience to end up being everything Patty hoped it would be.

More than anything, I want doctors and nurses to stop telling me there's no reason to worry about my best friend. She's my best friend--that's reason enough.

So, the upshot of all of this is that I'm planning to spend another night here, and Patty can likely anticipate spending several more nights here. What a joy!

Sorry for the stream of consciousness shit about my feelings...this blog has for the longest time been the best therapy both for Patty and for me.

Love,
Brian

Day Three

2009-07-02T11:29:00.000-07:00

Hi everyone:

Well, first things first...here's a picture of the implantation of the Heart Net on Patty's heart. The thing that looks like a cell phone in the upper right is, I assume, Patty's pacemaker/ICD. The rake-like object coming up from the bottom is the arm that places the net. Cool, don't you think?

Doctors had hoped to remove the drainage tube from Patty's side today, which should have provided some relief for our patient. Unfortunately, Patty has a small perforation in her lung that is causing air and fluids to collect in her chest cavity. So, at least until tomorrow, the tube stays in Patty...and Patty stays in the intensive care unit.

What's more, Patty seems to be a little stingy with her urine...I'm a bit sketchy on the details on this front, but I understand that functioning kidneys are important to all of us, including Patty. They're working on this one.

Patty's brother Peter has visited earlier, and her brother Mike and family are here now, so I'm being rude and must sign off for a bit. When the pace slows down, I'll pop back in to make sure I haven't left out important details. All things considered, Patty seems to be in decent shape today.

Patty wants everyone who may read this in the future, including prospects for the study, to understand that she in no way regrets her choice, and appreciates the opportunity to participate. This blog just shares one person's experience, in part through the eyes and voice of a worried husband, so please take all of this with a grain of salt and don't let our grumblings sway your choices. Nobody likes hospitals. Nobody likes surgery. Nobody likes hurting through recovery. But a good future is the goal here. And, on this, Patty's outlook hasn't at all changed.

Love,
Brian

Checking in before zonking out

2009-07-01T19:43:00.000-07:00

Hi everyone:

Patty fared decently for much of the day, after quite a rough start. A couple of things in her medical condition have rattled me somewhat. First, she is receiving oxygen through a canula (nosepiece); if she takes the canula off, say, to scratch her nose, her pulse oximeter (pulse-ox) reading drops from a healthy 98-100% to a less comforting 80-something percent. Most who are caring for her believe this is simply a function of her left lung (the one that was collapsed for the surgery) not yet fully recovering from the trauma to which it was exposed.

I will say that when Patty moves any core muscle groups, the pain from her incision wound and a surrounding area that takes in much of her upper body causes her enough discomfort that it affects her ability to breathe for a short period, which is quite unpleasant for her. I know this first-hand because, when I helped a nurse move Patty, I pulled more than lifted and actually hurt Patty to the point of tears as a result. Of course, she was not only in pain, but struggling for breath, and all because I'm clumsy. It wasn't one of my better self-esteem moments.

The other unsettling matter is that Patty's kidneys don't seem to be processing fluids as they should; this could simply be a matter of her being dehydrated from vomiting so often earlier today. I would probably worry less about this were it not for Patty's propensity for getting infections in this area.

Patty said today that she wished she had been given the opportunity to talk to someone else who had been through the process. Doctors and nurses can understand and even empathize, but if they haven't been on the receiving end, they can only relate others' stories without much of the emotion. Sometimes the best description of pain doesn't come in words, but in the memory recaptured on the person's face. Patty doesn't think she could have been talked out of participating, and has said that she has no regrets. But there's some part of her that feels like she wishes she had more kindred spirits with whom to compare notes. Having said this, would Patty's description of her pain--that it is on par with, and similar to, the pain from her heart attack--scare people away from the procedure? She would hope not.

I'm going to sign off now, because our patient wants me to read her all of the postings from the past two days. We started to do this last night, but Patty fell asleep seconds into the first entry--it's great to know one's voice is soporific. Patty has had several visitors today, including Kathleen, Neil, PJ, Kelly, Connor, Emily and Kristin. Our neighbor Denise, who is one of our guardian angels, made a ton of Italian beef, which she and Sandy delivered to our home; some people always (and I mean always) have your back.

Okay, I'll catch you up again tomorrow. I think my girl's going to have a good night and a better morning. Thanks for checking in.

Love,
Brian

Some images

2009-07-01T11:22:00.000-07:00

Hi everyone:

The folks at Paracor, who manufacture the HeartNet and are funding the Peerless-HF study of which Patty is a part, were kind enough to send along a couple of images of the Heart Net for us to share here. Pretty cool, huh? Nearly everyone thinks so, except perhaps for the owner of the heart to the left.

We were just playing with one of the nets a moment ago (relax--it wasn't Patty's), and you'd be amazed by how flexible it is. You could wrap a Mini Cooper complete with a roof rack, a family of four and two mountain bikes inside it and still have room for a small camper and/or a bass boat. I'm exaggerating slightly, but I was surprised by how flexible it is.

I thought about tucking the demonstrator net in my pocket and then fashioning it into some sort of bracelet for Patty; my guess is that when these hit the market they'll cost more than any jewelry I'll ever afford for my wife. There's another problem, though...has anyone figured out what shoes go best with one of these things? I still think it would make for a fascinating conversation piece. "Oh, you got your bracelet at Tiffany? How nice. I picked mine up at Edward Hospital."

Jeanne (the study coordinator and too nice a lady for me to steal the net from) is working on getting an actual image of the device in place on Patty's heart, which I will share if we can get it. I did actually ask, before the procedure, if there was any way to get a photo of some aspect of the surgery but, as anticipated, didn't find any takers on the surgical team. When I do ask such questions, I usually get the "what is wrong with you" look. I can't speak for everyone else, but I'd like the bragging rights associated with saying that I know all of Patty...the person on the outside and, thanks to medical photography, on the inside as well. Still, the team's reticence is probably for the best, as I would have trouble updating the blog if I fainted every time I looked at it.

I do know that if Patty and I could see a video (and I'm talking about what the doctors see, not some cheerful, sanitized publicity clip), we'd watch it for sure, even if we had to keep a pail handy at our feet. We don't like some of the cards Patty has been dealt, but if she must go through what she has and will, we may as well become more educated in the process. From what I've seen about medical procedures, ignorance is seldom bliss.

I'll give full credit to everyone involved with this study for their honesty about what to expect; for example, nobody ever said that it wouldn't hurt. In fact, they said quite the opposite. The pain lived up to all their promises. And yet, again as promised, it seems to be getting more bearable by the hour (easy for me to say, yes?)

In our abundant sitting-around time, we've been speculating that the cost to Paracor for each person who participates in the study must be well into six figures, even if the hospitals give the company some form of discount (about which I'm of course speculating). Nights in the ICU, tons of drugs, surgical services, echocardiograms and many before-and-after consultations have to all add up. Plus, I'll be honest--from Patty's experience in the first 24 hours, patients need a lot of one-on-one attention, which probably doesn't come cheap.

Having said all this, if the device works as we hope it will, I think we just scored one incredible bargain, and Patty can pat herself on the back for advancing heart research. I did see something online that suggested Paracor had pulled together more than $44 million for this research; that's a lot of IV bags, even at hospital prices.

Patty is sleeping, and continues to seem much better than she was earlier this morning.

That's it for now.

Love,

Brian

I call this one "Nothing but Net"...get it?

A sea change

2009-07-01T09:53:00.000-07:00

Hi everyone:

Wow, what a difference a couple of hours can make. Patty's drugs were changed, and then Patty changed. She's now sitting up (so her nurse can evaluate how much her surgical wound is still draining), and may have the drainage tube and a couple of other tubes disconnected before the day is out. She's still in discomfort, and feels shaky being upright, but otherwise is doing much better than before. She's even had some juice that didn't immediately come back up.

I'll stay in touch...

Love,
Brian

Day Two at the Chateau de Thisreallysucks

2009-07-01T07:23:00.000-07:00

Hi everyone:

I had really hoped that today's first entry would be overwhelmingly sunny--you know, bluebirds draping ribbons over IV poles, bunnies standing vigil around the bed, raccoons no longer acting like the assholes of the animal kingdom, and all of the other boundless joys that life seldom provides but a heavy-duty dose of dilaudid usually can. Alas, even in Wonderland, a few thunder clouds are hovering.

Patty did get some decent sleep last night, but upon awakening this morning, the hurt (surgery site pain and headache) and nausea came rushing back in. She cannot shift more than a couple of inches, nor consume anything, even sips of liquid, without vomiting soon thereafter. Doctors believe she may be having a negative reaction to the dilaudid (Patty having a side effect? Outrageous!!!)

She's been switched to Fentanyl (the same med Kathleen receives for pain) and some other anti-nausea meds, so hopefully the new mix will work. Patty was opting to endure more pain so as to avoid more nausea, but doctors want her to be drugged up against the pain, because she'll be better able to move in ways that should hasten her recovery.

Still, in typical Patty fashion, our patient is wincing and groaning from pain one moment and in the next trying to plant the first few seeds about getting out of here ahead of schedule ("See the bluebird on my shoulder?") I told her that, in her present condition, she's not welcome home, so she'd best get as comfortable as possible. Of course, I'd love for us to get out of here sooner rather than later, but I don't want to hurry out of here now only to have her return on an emergent basis. She's sick, miserable, and hurting (even gentle breathing is painful at points), and in better hands than would be the case at home (where chaos and stress reign supreme at times.)

Because the world has a somewhat twisted sense of timing, and apparently little sense of humor, Patty had a powerful hot flash in the midst of all of this.

As I write these last few lines, Patty has dozed off, so perhaps the new drugs are helping somewhat...time will tell. Kathleen and Neil will be coming by soon with PJ, Kelly and Connor. I'll do my best to provide more updates as anything changes. Patty's being tough, and complaining very little, through what has to be an acutely unpleasant experience.

Love,
Brian

A quick update

2009-06-30T21:14:00.000-07:00

Hi everyone:

Patty is still experiencing discomfort that runs the gamut between bad and nasty, with brief respites granted from time to time by sleep. She has vomited several times--although, since she's had only popsicles and apple juice, the volume is nothing Exorcist-like (and you'll get no complaint from me about this.) When she's awake and the pain eases back for a few moments, Patty has seemed chatty, if not entirely coherent (partly because her mouth keeps drying out, and partly because of the one-two punch of pain and pain medication). In true Patty fashion, she was barely awake after her surgery when she asked me to check her work e-mail to see if her AP art students had received scores on their portfolios.

Over the past hour or so, a headache that started out as a twinge has grown into yet another pain to manage; Patty's nurse gave her Benadryl, though, which within 30 seconds transported our patient to La-La-Land. All in all, I would say that Patty is doing okay, all things considered. She enjoyed visits from Neil, Emily and Kristen this evening. Dr. Costanzo dropped by, as did Maryanne Spencer, who has always made sure the folks at Edward are on their toes in looking after Patty.

All afternoon and evening, Patty was doted over by Kelly. At one moment, Kelly both surprised me and filled me with pride at her maturity; at the next, she seemed so vulnerable and frightened I wanted to conceal her under my arms and hide all of this from her. She's been a great help, as has Kathleen, who is clearly downplaying her own discomfort so she can be here for Patty. She's been invaluable many times. Sometimes, when I'm in the presence of Patty and Kathleen together, and I think about how sick they've each been and may be in days to come, the order of things seems anything but orderly. Bad things sometimes do happen to good people. Okay, enough of the home-brewed philosophy...back to our patient.

Patty has had one incident of blood pressure dropping to the point nurses needed to intervene with additional IV medication (and tons of fluids), has complained of feeling uncomfortably warm (although she's not febrile), said about an hour ago that her heart felt like it was racing and, as mentioned, has been dealing with pain and vomiting. Still, if she can tough out the first day or so, and I know she can (easy for me to say, no?), I think she'll come through this just fine.

I'll provide an update tomorrow sometime...I'll try to actually wait until there's something of any consequence to report...unlike today's 30-minute vignettes that really said little.

I'm staying over at the hospital tonight, so if anything of consequence comes up during the night, which I don't anticipate, this is the place to check. Speaking of which...if you text me or call and I suggest you visit the blog, I'm not trying to avoid a conversation; it's nice to hear from people. I just think I do a better job recalling the details when I sit in front of a screen than I do with a phone to my ear, so reading the notes here is the best way to ensure I'm not overlooking too many important details.

Sweet dreams...

Love,
Brian

A little better

2009-06-30T14:18:00.001-07:00

Hi everyone:

Patty's still in a fair amount of pain, but it isn't nearly as intense or consistent as it was two hours ago. She falls asleep for a moment here and there, but has mostly been awake for a while and is being a reasonably cheerful--albeit uncomfortable and weary--patient. She's quite talkative for one with a sore throat and the rough equivalent of a stab wound in her side. If there's more to report, I'll let you know. If you don't hear anything for a while, presume that things are pretty much status quo.

Love,
Brian

Patty update

2009-06-30T11:21:00.000-07:00

Hi everyone:

Well, we finally got in to see Patty, and I'm not sure we were quite prepared for what we found. I sure as hell wasn't. It's official...when it comes to this sort of thing, I'm a wimp.

Patty is in a great deal of pain; even the simplest movement, like scratching her nose, brings tears to her eyes. It's so hard to see her hurting like that with no ability to bring any relief. Patty said that just breathing really hurts all the way from her shoulder to her hip, and that her first waking memory was of bursting into tears. She, of course, thinks she's being a baby, and has insisted we have the TV on with the volume up so she doesn't "have to listen to (her) own whining."

As you can see, she's covered in wires and tubes, and she's also surrounded by machines, the whole effect of which transforms alarming into deeply unsettling. For most O'Maras, who have all summered in Hell, this might not be all that severe or frightening. For me (and Kelly, judging by her reaction), this is somewhat new and wholly unpleasant. Kathleen even looks a little lost, and she's been through some wars herself.

Anyway, I want to get back to Patty, so I'll sign off for now. They've added more pain drugs to her mix, so hopefully she'll soon get some sleep. I'll try to provide another update later today.

In case anyone needs the info, she's in room 6604 (sixth floor) of the cardiac intensive care unit of Edward Hospital.

I hope she feels better soon, because I'm wishing she hadn't done this...at least for now.

Love,
Brian

Argghhh...

2009-06-30T10:03:00.001-07:00

Hi everyone:

Patty's been out of surgery for quite a while, and still we wait to see her...it's maddening!

Love,
Brian

Out of surgery

2009-06-30T08:52:00.001-07:00

Hi everyone:

We just met with Dr. Cziperle, the surgeon who implanted the Heart Net device in Patty. Most of the time Patty has been away from us has been devoted to prepping her--and whatever the hell the "after" counterpart of prepping is (desurgerizing?). The actual surgery took 58 minutes. We were told that Patty's vitals were fine throughout, and that the device was placed without any major problems. The woman leading the study for Edward Hospital told me that the echocardiogram (a down-the-throat version instead of the typical, ultrasound-like device) showed that Patty's heart really still hadn't been pumping very efficiently, so the Heart Net really should help improve her heart function. Further evidence, it would seem, that Patty has done remarkably well with her crappy heart.

We've been told that Patty is in her room right now, is conscious, and is working with nurses to get her pain management right. Apparently, Patty's first words in coming out from anaesthesia were, "It hurts," which made me feel a strong and sudden sadness, and an equally strong and sudden urge to see her. I was hoping instead to hear something along the lines of, "She feels great; she's ready to go home." We'll be able to see her in about 45 minutes; the wait is of course irritating me, because I know they're keeping me away because they don't want a husband barking, "Do something for her," when that's precisely what they're trying to do.

So all who have worried about Patty can breathe a sigh of relief. Of course, after a procedure some time ago in which "everything went fine", Patty told quite a different story than the doctors. So, once I have a chance to talk to Patty and get her take on things, I'll post again. For now, at least, it sounds like very good news.

Love,
Brian

Update: 10:00

2009-06-30T08:04:00.000-07:00

Hi everyone:

Patty's surgery is wrapping up, she's still doing fine, and I'm starting to relax, which is good, because I've peed three times in the past hour. We'll be hearing from the surgeon shortly...I'll provide details when I have them.

Love,
Brian

Update: 9:30

2009-06-30T07:36:00.000-07:00

Hi everyone:

I just received another page that said the surgeon is currently positioning the Heart Net device, and that Patty is doing fine. Whew...

Stay tuned...

Love,
Brian

Surgery just started

2009-06-30T07:00:00.000-07:00

Hi everyone:

Just received my first page...the surgery has started (9:00--later than expected), and Patty is doing fine. More in a bit...

Love,
Brian

Showtime!!!

2009-06-30T05:42:00.001-07:00

Hi everyone:

Well, they just took Patty away, and I have to admit that, in spite of all assurances from doctors, nurses and Patty herself, I'm terrified. I couldn't admit this to Patty in words, but my expression betrayed me, and I feel a little ashamed that I can't always succeed in being my wife's "rock". If there's one thing we've learned along the way (and I think we can in fairness say we've learned more than we had ever hoped), it's that Patty is anything but a "typical" patient. The whole medical crew has been very good this morning about making sure we have a clear picture of what to expect. As much as knowledge is always valued, each new piece of information forces speculation about any little thing that could go wrong.

Kathleen and Kelly are with me. We have been given a pager, through which we will receive updates about Patty's condition. I asked the surgeon if I'd receive any updates if complications arose (because if the sky isn't falling I have to pull it down upon myself), and he said, "Well, I'll tell you this. If you receive a message that says, 'It's over,' you can presume the surgery is finished, and not your wife." Nothing breaks the tension better than a little macabre humor, especially from the guy who's punching a hole in your wife's torso. Were that not enough, Patty's wristband has the letters "RIP" on it, which also gave us a second of pause.

Patty is in good spirits and looks pretty even without a speck of makeup. Last night, she was feeling somewhat anxious, mostly about post-surgery pain, but also because she couldn't recall what color of hospital gowns Edward Hospital provides. Without this information, she wouldn't have a clue what earrings to pack to accessorize her hospital ensemble. I'm not lying. Overwhelmed by this fashion uncertainty, she barfed.

I think some of this anxiety returned this morning when Patty was told she wouldn't be receiving an epidural for pain, as had been suggested, because her Plavix had been discontinued too close to the date of her surgery. Instead, she'll receive an IV that will allow her to self-administer pain relief as needed. Aside from unease at this change in plans, she seemed ready --and perhaps even a tad impatient--for things to move along.

I will try to provide an update as soon as possible after Patty comes out of surgery. From what I understand, it could be up to three hours before she'll leave the O.R., in large part because she'll be wired every which way. And so the wait begins...

Stay tuned...and thanks for caring.

Love,
Brian

P.S. Since Patty's heart attack, every morning during the school year I kiss Patty goodbye and say, "Be careful." Sometimes, she'll respond, "You don't have to worry every day; I'll be fine." This morning, the last thing I said before she headed for the O.R. was "Be careful," and she again responded as in the past. Sure, I don't have to worry, but I will. And while there's always risks with these procedures, Patty's always been honest with me, so I'm trusting her to be fine.

Now we're both nervous

2009-06-29T12:16:00.001-07:00

Hi everyone:

I just wanted to pop in one last time to say that, barring anything unforeseen, Tuesday's surgery is still a go for Patty. We need to leave our home tomorrow by 5:00. In the morning. Yuck.

Patty is feeling the first tendrils of mild anxiety about what's to come, mostly because the pain during recovery is said to be intense. Still, I know she's confident this procedure will help her, so I think she's also looking forward to getting this over with. I'm still nervous on her behalf, but confident she's tougher than anything doctors can throw at her.

Please send good vibes in Patty's direction. I'll try to update the blog as soon as possible after her surgery; if I can't access the blog at the hospital (as was the case last time), it may take me until Wednesday sometime to provide an update. I will also try to answer any emails at omara_croft@yahoo.com.

I unintentionally created some confusion in one of my earlier posts or e-mails--so, to clarify: Patty welcomes calls, emails, text messages or visits during the week. You shouldn't feel any pressure to visit, nor any reservations about stopping by. Of course, if you'd prefer not to watch Patty sleep (even though she's an adorable snoozer), you may want to call first to get a sense of whether she's staying conscious or just dozing the days away. As for me, I'll probably be sleeping and eating most of the time; if you'd like to watch me doing these things, you're more than welcome to do so.

Love,
Brian

A new photo

2009-06-24T11:28:00.001-07:00

Hi everyone:

I haven't posted many pictures of Patty lately. She's been exercising regularly, has lost 27 pounds, and is looking pretty fit and awesome, in my opinion. In fact, I think her surgeon was surprised at how healthy she looks, especially for one heading into a procedure for heart failure patients. We've been going through the blog a lot lately, and still shake our heads at the extent of her recovery. I suspect her doctors do as well.

Anyway, here she is. This is not a big purple afro, or a floral tumor; these are actually the hanging plants Patty discovered at Costco and has been bragging about to anyone who'll listen.

Love,

Brian

If you haven't heard enough about Patty's surgery...

2009-06-24T10:38:00.000-07:00

Hi everyone:

Patty and I found an interesting, high-level overview video of the procedure Patty will be undergoing next week:

http://www.5min.com/Video/Enlarged-Heart-Animation-63956156

Every time I see the HeartNet, I keep thinking about the green mesh sleeves that Binny's Beverage Depot puts around my bottles of liquor so they don't bang against each other and break. Something tells me the HeartNet costs a little more than those mesh sleeves (and more than all the liquor I drink in a year).

I don't know if this sounds twisted, but there's a part of me that really wishes I could watch the procedure, because it seems fascinating. Having said this, I had to leave the room once when Patty was having bits of glass removed from a cut in her hand, so I'm not sure I'd make it through the surgery without passing out. What's more, it is Patty, so seeing her with a hole punched in her side might also be a tad unsettling.

I tried to find photos of the procedure online (for anyone with as much of a dark fascination as mine), but all I could find were pictures of the device along with some manga character (who I presume has no relation to this whole deal).

We found out this morning that Patty needs to report to Edward Hospital next Tuesday at 5:30 a.m. -- so she'll probably have to go alone and we'll catch up later.

I'm kidding.

Love,
Brian

Preparation for surgery

2009-06-23T12:41:00.000-07:00

Hi everyone:

This morning, Patty visited with Dr. Cziperle (zipper-lee), yet another in a long line of doctors with unusual but oddly profession-appropriate names. A previous surgeon involved in Patty's care had the surname Slaughter (okay, not so much appropriate as ironic). Dr. Cziperle will be performing the insertion of Patty's HeartNet device early next Tuesday morning at Edward Hospital. PJ, Kelly and I went along to listen and to ask questions. I'm not sure we have all the details 100% correct, but I think we recalled enough to provide a general overview.

The doctor said that the procedure lasts approximately one hour from first cut to final stitching, with an extra half-hour of preparation before surgery. The prep includes a right heart catheterization (to measure pressures in the heart), a wrist catheterization (to measure blood pressure), an interior echo (down the throat, to visualize the heart) and an epidural catheter for pain management after the surgery. As to the latter, the surgeon explained that this pain is likely to be legendary (among the very worst), because of the sensitivity of large nerves that run along these ribs. In 95% of cases, this pain subsides over the course of several weeks; in the remaining 5%, this pain does not subside, ever, and the nerve endings have to be, for lack of a better word, killed. I'm not thrilled about the idea of Patty hurting like this, but the prospect hasn't scared her off, so you'll still find me at the front of her cheering section (I'll be the one with the deer-in-headlights look on my face).

The actual procedure, as we understand it, involves:

placing a breathing tube down the throat
collapsing the left lung (breathing is controlled and monitored by the anaesthesiologist)
making an incision between two ribs somewhere on the lower left side (location to be determined by where the lower tip of the heart is found, which isn't a slam dunk because the tip of Patty's damaged heart may not be where one might expect to find it)
making another incision, this time through the pericardium (the sac surrounding the heart)
grabbing the tip of the heart using a suction device and pulling it into a more elongated (or correct) shape
placing the HeartNet device (a special metal alloy mesh) around the lower part of the heart and releasing it in position so that it holds the shape it had been suctioned into
making sure the device has no bunches or folds, which would require that it be taken off and replaced (not because Patty would have a problem it looking unflattering, as you might anticipate, but because it wouldn't function properly)
reinflating the lung
closing the incisions
that's all, folks

If you'd like to see more about the procedure, a number of web sites have illustrations and/or news reports. Just Google "Paracor HeartNet" and you should find a bunch of stuff. Anything you read about the HeartNet-D, while really cool and just a little sci-fi, is irrelevant as far as Patty is concerned. Patty's just getting the garden variety mesh bag.

Patty will be in the cardiac intensive care unit (CCU) for 2-3 days after her surgery and, if all goes well, should be home within a week. While she's still in hospital, a drainage tube at the incision site will allow the lung to heal and drain effectively, and the epidural will be kept in place to control pain. After she's home, she will be restricted in her activities, including being barred from driving for a month, in part because of the side-to-side motion, and in part because she'll probably be stoned out of her gourd with pain meds.

Some of the more common risks of this procedure are infection, bleeding, air leaking from a lung and arrhythmias. Less common are more severe complications, including death (two cases in all study participants to date). The vast majority of participants have done very well, and most report significant improvements in quality of life (including measurable improvements in ejection fraction). Given Patty's relatively young age, we're hopeful she'll come out of this ready to run the Chicago Marathon, or at least extend her healthy years by a great many. Specifically, Patty's hope (and mine) is that this surgery will prevent the need for a transplant, ever. Dr. Cziperle agreed that this was a good goal, and suggested that it seemed much more possible with the device than without, although researchers only have two years of history with the device to measure successes and failures. The early results are very encouraging.

Edward Hospital has liberal visiting hours, even in the CCU, and I'm sure Patty will welcome company once she's out of the initial post-surgery groggies. However, you may want to check in advance on the condition of our patient, so that your visit doesn't involve an hour of watching Patty snore, snuffle and drool (I'll post pictures of this, anyway). If you don't have my cell number, send an email to omara_croft@yahoo.com and I'll share it with you.

Please continue to keep Patty in your thoughts and prayers.

Love,
Brian

Patty's in the study!

2009-06-19T13:29:00.000-07:00

Hi everyone:

Patty is quite excited that she finished her preliminary qualification testing for the Paracor Heartnet study, and then was chosen for the treatment group (a 50-50 chance). I gave a high-level overview of the study in my May 21 post; if you'd like further details, let me know. You'll probably hear more on this site as things progress.

Patty "passed" in that her heart isn't so weak it needs to be transplanted, nor so strong that she wouldn't qualify. To put it bluntly, her heart still sucks just enough to make her a good candidate for the procedure. Her ejection fraction is still low, which means her heart remains at risk for further remodeling (reshaping, thickening and then aneurysm). This procedure should reduce that risk.

I'm happy that Patty's happy, but nervous about any procedure that involves getting up close and personal with her heart, especially since she's being doing so well. Too often, I'm a believer in the "if it ain't broke, don't fix it" school of medicine, although I know that logically this is a very good opportunity for Patty to improve her quality of life in the future. Besides, Patty continues to have periodic incidences of low blood pressure, dizziness and shortness of breath, so this may be a shield against what seems like a possible return of some heart failure symptoms. I'm just a bit worried, that's all; it's not like having a wart removed, and Patty is the queen of unpredictable reactions to medical procedures. Okay, enough whining...

Barring any major changes in plan, Patty should be having the procedure on Tuesday, June 30 at Edward Hospital (no time firmed up as yet). She'll be in the ICU for 3-4 days, and then in step-down for another 3-5 days. After that, she'll need a few low-key weeks for recovery. I will do my best to keep the blog current, so that anyone who is interested in hearing how things went can check in.

Love,

Brian

Lots going on

2009-06-12T06:13:00.001-07:00

Hi everyone:

When teachers are lucky, the summer break affords some respite from what for many was a grueling stretch of months. If you've ever met anyone who tells you that teachers have it easy because they have summers off, tell them to follow those teachers around during the school year. Their eyes will be opened. Through this past school year, Patty worked every weekday from 6:45am to at least 4:00pm, and devoted countless evenings and weekends to other activities related to her students. To be honest, I was surprised (and impressed) how well Patty held up to the rigors of a full-time schedule. I was also a little worried, because everyone who knows Patty also knows that our patient would not cut herself any slack for limitations imposed by her health. Fortunately, she made it through without too many battle scars.

So, in theory, Patty should be kicking back now and taking a breather for a while. Alas, no. Instead, her summer break to date has been a sea of medical appointments for various reasons. Let's do a rundown:

Patty recently completed the first diagnostics that precede her possible inclusion in the Paracor heart study. These included a treadmill test, a six-minute walk test, bloodwork, urinalysis and an echocardiogram. Based on Patty's results, she would qualify for the study. Her results on the treadmill were not weak enough to justify transplantation (let's keep knocking on wood for that), but not strong enough to exclude her from the study. Her echocardiogram confirmed that Patty's ejection fraction (a key measure of heart function) remains in the neighborhood of 15-20 percent; a normal heart functions at about 55 percent. However...

Patty may have to re-do all of those tests in the near future, because the blood tests revealed that Patty had elevated white cells, which is typically indicative of some form of infection. Patty did all of these tests while feeling poorly; she had started the morning with a low-grade fever. What's troubling about this latest bug is that Patty had just finished a full round of kick-ass antibiotics for an earlier infection. Patty is visiting a specialist this morning to see if we can get to the root of this problem. The doctors and nurses leading the Paracor study may be forced to exclude Patty if this issue isn't understood and resolved. What's more, doctors are concerned that these infections may be responsible for Patty's recent dips in blood pressure, which have caused her to experience heart failure symptoms of varying severity. Of course, worrywort that I am, I'm a bit uneasy about my wife participating in an invasive procedure involving the heart, given her seeming propensity toward infection, but I know that Patty's heart failure specialist loves her and wouldn't take a risk that wasn't warranted. But wait...there's more...

Remember I wrote a while ago about Patty's back injury? Well, it turns out she also has some problem related to her right shoulder. Why? We have no idea. Patty has limited range of motion in her right arm, and has been experiencing pretty significant pain both while lifting her arm and, at times, at rest. She visited an orthopaedic doc yesterday. Her X-rays showed nothing amiss, so nobody seems to know why Patty's in pain. The doctor gave Patty a cortisone shot that so far has done nothing to alleviate her discomfort. We suspect we'll be revisiting this problem again in a few weeks. But that's not all...

Patty still needs to make an appointment to find out why her foot seems to be hurting, off and on, for no apparent reason. Oh, and she has an appointment scheduled to see if there's anything more that can be done about her back, which is still bothering her.

Other than that, Patty's doing great.

I'm sure I'm overlooking something. So, truly, this has been a whirlwind start to Patty's summer. Hopefully, we'll soon have answers to address all of these oddities and, with luck, our patient will finally have a few moments of R&R before gearing up for the next school year.

More soon as we learn it...

Love,
Brian

P.S. Our condolences go out to the great many people who will miss Mary Ann Sittinger, Patty's aunt, who passed away this week. This family has lost too many truly wonderful people over the years, and Aunt Mary Ann and her late husband Bob were among this group. The personalized stocking she knit me as a welcome to the O'Mara clan will always be a cherished gift.

Doctor visit update

2009-06-03T11:57:00.001-07:00

Hi everyone:

Based on our visit with Patty's heart failure specialist this morning, it would seem I'm worrying more than is warranted. Dr. Costanzo checked Patty's blood pressure, listened to her heart and found no cause for immediate concern. She adjusted some of Patty's meds (further reducing Lisinopril and Metoprolol) and asked that she follow up within a couple of weeks. Patty has actually shown some improvement since the last reduction in her meds. She still experiences dizziness and fatigue, but is not feeling completely wiped out by minor activities (as was the case a week ago).

Patty will be evaluated next week for the procedure I discussed previously in this blog. However, based on Patty's ability to exercise at a steady level for up to an hour each day (with the full blessing and encouragement of her doctors), she may be excluded from the study because she's too fit. More on this later...

So there's the update. I'm a freak, Patty's mostly fine, and I'll keep you posted.

Love,
Brian

And just like that...

2009-06-01T12:57:00.001-07:00

Hi everyone:

No sooner do I pour out my anxieties than Patty calls to tell me that, all in all, her day at work today has been much better than the weekend days, in terms of how she's feeling. She's still symptomatic, but not as severe...so maybe she's on the mend after all. I'll let you know...and I'll be sure to post after her doctor appointment on Wednesday morning.

Love,
Brian

Justifiably worried...or just foolish?

2009-06-01T05:29:00.000-07:00

Hi everyone:

Well, perhaps in my last post I was a little too cavalier about Patty's low blood pressure, and as a consequence left Patty open to the whims of the fates, furies, gremlins or any other forces that toy with the well-being of seemingly "recovered" heart failure patients. Or perhaps I'm just being a worrywort again, and crafting colossal molehills. But as I sit at my computer this morning, I'm fretting about Patty's health.

I'm always on the lookout for signs the sky is falling, and have worried too much about too little in these matters in the past. Yet this is the first time in years that real tendrils of worry are starting to creep in. We've promised to keep everyone in the loop, so welcome to my tendrils. Patty, thus far, is not as worried as I am, so please don't read too much into my take on all of this.

For several days running now, our patient has been under the weather--functioning, but with few reserves of energy. To a certain extent, this was to be expected. As mentioned in my last post, she (and Levaquin) have been doing battle with a kidney infection and, although I've never had one, I've seen them enough and they don't appear to be a lot of fun. However, Patty responded quickly to the antibiotics and, based on what we've seen with her and previous infections, she's showing none of those symptoms anymore. Here's where my worry comes in.

For the past week or so, Patty has been showing symptoms of heart failure--symptoms that we hadn't noticed in a very long time. She has been breathless, especially after climbing stairs. When she lies flat, she starts to cough. Whereas for several weeks she was feeling energetic, she's now sometimes so fatigued after minimal efforts that she needs to sit down to recharge. She can grab a nap in the afternoon and then struggle to stay awake early in the evening. The muscles and joints through her shoulders, arms, back and feet ache regularly and, at times, intensely, even though she's done nothing to aggravate them.

She is sporadically nauseous. At times, her hands shake. Her blood pressure has dipped so low at times that she's dizzy even when sitting down, and she seldom rises from a chair without some concern about passing out. At one point yesterday, her blood pressure reading was in the 55/35 neighborhood, which is ridiculously low even for Patty. She spent most of the day and evening yesterday on the sofa. To be fair, she's not faring so poorly that I think she needs to be hospitalized, but she is certainly showing me enough that I'm watching her like a hawk.

The most unsettling "symptom" is one that I think only I see, and therefore could just be imagining. When Patty struggled with heart failure before, she bore what I call the "crazed rabbit" look--her eyes seemed less alive, her skin had an unnaturally pale tone and her mouth was positioned differently, with more of her upper teeth showing. I realize this all probably sounds stupid, but I don't think I've ever pointed out the look without Patty admitting she was feeling especially poorly at that moment. I hadn't seen the look in several years; I've seen it a handful of times over the past week.

At first, we thought that Patty's lifestyle changes might be the culprit; she's been cutting back on calories, and exercising often, so we thought she might be missing out on some vitamin or mineral, or that she was experiencing some symptoms of overtraining. We also considered the possibility that a long, busy school year, worries about Kathleen and the stresses of today's economy were taking a toll. However, over the past several days she's been eating more, taking a daily multivitamin and not exercising at all, and none of the symptoms have improved. And this has been a happy week for Patty, in part because P.J. just graduated from high school, so her current stresses are certainly not overwhelming. So we're perplexed.

Patty has an appointment with her heart failure specialist on Wednesday to try to find some answers--or, as Patty says, so they can "just fix it." In the meantime, her doc down-titrated some of her medicines that lower blood pressure (lisinopril and metoprolol), with little effect.

Our hope is that these recent symptoms are a temporary residual effect of either her back injury or the kidney infection, and that doctors will be able to prescribe something that will magically restore her to better health. I don't really think this is an unreasonable hope, given how long Patty has been faring well. I'll even happily pillory myself here for causing such a fuss over nothing, if it turns out I'm wrong. But until I see her better, it's in my nature to anticipate the worst.

Anyway, thanks for reading this. It keeps you in the loop and is good therapy for me. Keep your fingers crossed. I'll keep you posted.

Love,
Brian

At the risk of disability or death...(well, not really)

2009-05-21T12:11:00.000-07:00

Hi everyone:

Catchy title, huh? Patty had a bit of a health scare yesterday. She had been feeling poorly for three days running, and a little worse each day, so, at her doctors' suggestion, we made a visit to the ER last night. Patty has been experiencing strong headaches, dizziness, fever, coughing, sore muscles and shortness of breath. Given the worries these days about swine flu, and the extra concern if a cardiac patient comes down with such an illness, we agreed with doctors to be better safe than sorry and went to have her checked out.

Once results came back from bloodwork, doctors determined Patty had been suffering from a kidney infection. After a round of IV antibiotics, she was already feeling much better. Her doctor suggested that she stay overnight for observation, but Patty pushed back, and ultimately signed out against medical advice (AMA). Normally, she wouldn't challenge doctors' advice, but his reasoning for keeping her in the hospital was her low blood pressure. We explained that what he was calling "low" was in fact entirely normal for Patty, who rarely has readings above 95/60. So, with his admonition that Patty was gambling with "permanent disability or death", she finally made it home to our bed around two in the morning. She's feeling much better today, although she's still a bit weak from three days of fever. I took the picture just a minute ago...see? Alive and well.

All in all, Patty continues to do great. She's been exercising, eating better, and has trimmed off more than 25 pounds. She's been trying to get fit so that she will recover more quickly from a procedure she's hoping to have this summer. As the procedure is currently part of a trial, Patty has a 50/50 chance of being in the group that has the operation. Essentially, this involves going in between the ribs with a claw-like apparatus and surrounding the heart with a mesh bag that should prevent further remodeling (growth) of her heart. If the heart doesn't remodel, then the odds of Patty returning to the transplant list will be reduced. Even if Patty doesn't have the procedure as part of the trial, she will likely be a candidate when approvals for the surgery come through, perhaps even later this summer.

Aside from the odd exercise-related injury or this latest infection, Patty seems more healthy than she was before she had her heart attack. She has worked full-time for the entire school year, and hasn't seemed the worse for wear. We keep hoping this streak of good fortune will continue. At the same time, we keep our fingers crossed that Patty's sister Kathleen will also defy the odds and come through her battle with cancer stronger than ever.

Thanks for checking in. We'll let you know if anything changes.

Love,
Brian

One of the kids must have stepped on a crack

2009-04-30T16:04:00.001-07:00

Hi everyone:

This blog has been quiet for some time, which is a good thing, because Patty is still going strong on the heart front. Her last pacemaker/ICD check, this past week, showed that aside from one recent minor incident (her heart skipped five beats...apparently no biggie), her heart has been performing fine. Her pacemaker still paces her heart 80% of the time, at a minimum rate of 70; without it, her heart rate drops to 50. A low resting heart rate is great for a superathlete...but for Patty this means she'd have trouble functioning.

There is a bit of a problem with Patty's health, though. She has been getting back into shape, and has so far lost about 15 pounds. That's not the problem...what is a problem is that she fell while rollerblading the other day and fractured one of the thoracic vertabrae in her back (and put a pretty good bruising on her tailbone). She's in some discomfort but, with her doctor's blessing, is still able to exercise at a moderate rate. Her goal is to (a) get back into some smaller clothes she loves, and (b) get into good shape before a procedure she may have this summer, if she's one of the 50% randomly chosen for a study. More on this later...

Aside from life in an economy that sucks, all else is pretty well for our family. We have two kids attending college this fall (Devin studying video game design in Toronto, PJ attending the Art Institute of Chicago), and all the others of our brood are chugging along. That's it for now...more if it arises...

Love,
Brian

Patty's Doing Great...Kathleen is Struggling

2008-12-16T09:04:00.000-08:00

Hi Everyone:

I suspect few people visit this blog anymore, and that's probably a very good thing. Patty continues to do very well, with no symptoms other than occasional fatigue. She is working full-time, and seems to be handling the workload exceptionally well.

Patty's sister Kathleen is not faring so well these days. Her breast cancer has metastisized to her spine. You can read more about Kathleen's situation at http://thoughtsforkathleen.blogspot.com.

Please keep Kathleen in your thoughts and prayers. And please keep your fingers crossed that Patty continues to do as well as she has over the past year.

Love,
Brian

A strong summer

2008-07-11T09:42:00.000-07:00

Hi everyone:

Just thought I'd pop in for a minute to let everyone (or at least everyone who visits anymore) know that Patty continues to thrive, so much so that I was able to make a trip to Canada, without Patty, to pick up the boys for the summer. A year ago, I wouldn't have even considered being away for more than a day. She looks great, and she feels great.

Aside from an occasional mild arrhythmia, Patty shows almost no symptoms of heart failure anymore. She even complains now about having to take so many meds, although she knows that this is a lifetime deal for her. She's being cautious about time in the heat and humidity.

As mentioned, Devin and Colin are in town for an extended visit. Our plan is for Patty and I to drive them back (about 10 hours each way) in mid-August. PJ is working at Oberweis, and is participating in summer speech activities. Kelly and Connor are also doing great, and mostly just having fun.

That's the latest and greatest. Please feel free to drop a comment; I make sure that Patty knows when people have written.

Love,
Brian

P.S. If you're on Facebook, please add me/us as a friend. I'll be posting photos, including some of our patient, from time to time this summer.

Swell on wheels

2008-05-07T11:12:00.000-07:00

Hi everyone:

As you can tell from this relatively recent photo, our patient (can I really even call her that, now?) continues to thrive, enough so that she's been able to incorporate light exercise into many of her days. Her hope is to advance her conditioning to the point she'll be able to inline skate more regularly. She's being cautious, but surprisingly strong.

Patty is handling the combined demands of work, home and health with remarkable success, and with very little of the fatigue or illness that plagued so many of her past days. Her medical appointments are now spaced months apart, and she rarely experiences any symptoms. The only obvious clue to her condition is the still-extensive range of medicines she takes each day. And, among the best of the good news, she has not been hospitalized since November, 2006. We still don't understand how this has all happened, medically, but we're not really complaining; we're just hoping this strong streak continues.

All of the children are doing well. PJ and Kelly just finished their school's production of Les Miserables, which was just amazing. My parents visited to take in the show, and they too were impressed. Devin spends part of his week at home and part 30 miles away at college, where he's doing well in a culinary arts program. Colin and Connor are both enjoying jumps in their academic performance, with Connor flirting with straight As. We're very proud of our brood.

As always, we're grateful to hear that people check in here from time to time. I will endeavor to provide updates on an occasional basis, and will of course pick up the pace if there's ever more to report...let's hope not.

Love,

Brian

Catching up with former students

2008-03-10T05:54:00.000-07:00

Hi Everyone:

Over the weekend, Patty had visits from two former students -- Emily (on Friday) and Roxie (Saturday.) We've had a handful of visits from Emily over the past year, but had not seen Roxie since she did Patty's nails on the night before our wedding (six years ago.) Patty really likes to see that the kids are doing well as adults, and I think she's thrilled to know that she played a part in shaping their lives.

Patty plants one on Emily

Patty, Roxie & Brian

On Friday, Patty escorted a group of students on a field trip to the Art Institute of Chicago. She continues to do very well, and has now added more frequent exercise to her weekly routines. We're pretty impressed at how she seems to get stronger and stronger.

Patty & a Pollock

Love,

Brian

Patty's still going strong

2008-02-27T13:23:00.000-08:00

Hi everyone:

As I've mentioned in previous posts, no news is good news as far as Patty is concerned -- ergo, I've had nothing significant to report for some time. Patty continues to do incredibly well. In fact, she has even been able to increase her beta blocker and ACE inhibitor dosages to levels desirable for heart failure patients; you may recall that previously this was a problem because of Patty's unusually low blood pressure.

Patty's last echocardiogram and ICD interrogation were both very positive (although Patty's ejection fraction remains at around 25%.) Patty remains the mystery patient, the miracle case, the against-all-odds poster girl.

Last night, Patty modeled in a fashion show for Edward Heart Hospital, along with Dr. Costanzo (her cardiologist) and a number of other patients who can share compelling heart stories. Patty was a natural, and she looked amazing.

Patty continues to teach part-time, and hopes to return at a full-time level for the start of the next school year. The kids are doing great. All is well with us, knock on wood. If anything changes, and perhaps even if nothing changes, I'll try to write again soon.

Love,

Brian

Just a quick note

2008-01-08T12:31:00.000-08:00

Hi everyone:

Just thought I should poke in for a moment to let everyone (or at least everyone who still visits) know that Patty is still going strong. She very much enjoyed a much-needed break from work, and had a wonderful holiday with our kids. Her medical reports continue to be incredibly positive. Wow...it's still hard to believe.

I'll try to post some recent photos soon. Happy New Year, everyone.

Love,
Brian

A bit short of breath today

2007-12-12T07:57:00.001-08:00

Hi everyone:

Patty has had some minor struggles with her breathing today, and is feeling a bit run down. Of course, in this season of colds, the flu and such, this could mean nothing at all, but it does inspire a degree of anxiety. I've grown quite accustomed to a life with Patty that really doesn't include hospitals, home health nurses and the like anymore; I'm hoping we'll go a good long time before Patty again has any need for such interventions.

We have been slowly preparing our home for the holidays. Our inside lights and decorations are finished, and I've been gradually working through the outdoor lights. We are looking forward to the arrival of Devin and Colin on December 26; Devin will return to Canada on Dec 31, and Colin will stick around for another week.

That's about it for now; please keep your fingers crossed that our patient has a symptom-free holiday season.

Love,
Brian

Still going strong

2007-12-03T10:50:00.001-08:00

Hi everyone:

Well, it's been nearly a month since I last posted an entry. Patty is still doing well. On Saturday night, she had a pretty strong arrhythmia -- her first in weeks -- which we both found a bit unsettling, in large part because such symptoms have truly become anomalies. Other than this one blip, Patty has enjoyed a nearly spotless record of good health for many weeks. She still needs her afternoon nap most days, but otherwise has energy levels similar to what she enjoyed before she became sick. Doctor visits usually include some head-shaking on Dr. Costanzo's part; she still finds it hard to believe that Patty has experienced so complete a turnaround. We're keeping our fingers crossed that this positive turn will last for years. Again, thanks to all for your prayers, for your kindness and generosity and for your continued good wishes.

Love,
Brian

Three years

2007-11-06T09:18:00.001-08:00

Hi everyone:

Thursday of this week (November 8) represents the three-year anniversary of Patty's heart attack. You may recall that she had the attack on the first day of the new term, before she had a chance to greet a single student. Needless to say, even the passage of time has not greatly diminished the freshness of those memories. In many ways, though, we've moved forward, particularly with Patty doing so well of late. Although the sound of a siren still fills me with dread, I'm learning to resist the urge to call the school each time I hear the sound in the distance. For her part, Patty has promised not to finish any photocopying if she has similar symptoms in the future. The kids are doing just fine; even Connor, our resident worrywort, rarely has problems settling at night.

Yesterday, Patty started a new term, and I was of course nervous, even though logic would suggest I had no good reason to worry more about yesterday than about any other day. She returned home in one piece, and in pretty good spirits, although the start of a new term almost always has its associated frustrations.

We are still amazed at this gradual but steady transformation within Patty--from a person who could barely walk a block without gasping for air to a more-or-less normal person again. Based on what we've read, heart failure patients sometimes stabilize; they don't typically improve, and certainly not so dramatically. I'm not complaining...just knocking on wood a tremendous amount.

Love,
Brian

Checking in

2007-10-23T21:33:00.000-07:00

Hi everyone:

Patty continues to impress with her health rebound. We visited Midwest Heart today, and they were able to again titrate Patty's dosage for her ACE inhibitor and beta blocker, and are shortening the timeframes between the increases. Provided Patty continues to tolerate these bumps in dosage, they will keep increasing the amounts until she is in a desired range. With the beta blocker in particular, Patty is a long way from the ideal.

The photo to the left was one of many I took of Patty during a recent field trip to Silver Springs State Park. I was so pleased to see Patty in action again, and I know that she feels most complete when she is teaching. She has wished aloud that she could teach full-time again, but I'm pleased that she is phasing back into these demands...no sense tempting fate. Having said this, if her health continues to stand up, she should be able to take on a full schedule next school year.

All things considered, our family is seeing 2007 as a pretty good year...knock on wood.

Love,
Brian

P.S. Please feel free to share comments, even if the postings here aren't coming fast and furious...Patty still gets excited every time she notices there's a comment.

Overeaters Not-So-Anonymous

2007-10-13T21:51:00.000-07:00

Hi everyone:

Tonight, Patty and I celebrated the wonderful news about her improved condition by sharing a special bottle of wine Patty had purchased as a gift for me three years ago. We had been saving the wine for a very special occasion, and decided that there really aren't many circumstances that could be regarded as more special than what would seem to be a new lease on life. With no chemotherapy or other nasty drugs in her daily medicine regimen, Patty has gradually regained an appetite that had long been compromised. We ate a fairly substantial early dinner tonight, and then whipped up a potato/leek/thyme/gruyere cheese pizza about half an hour ago (trust me, you WANT this recipe.) Patty, who typically is a fairly light eater, scarfed back six good-sized slices without hesitation! All is well...

Love,
Brian

P.S. As I am reading this draft back to Patty, she will almost certainly be worrying that I'm making her sound like a pig. If this stays in, you'll know I was right...

Something that wasn't supposed to happen

2007-10-10T11:23:00.000-07:00

Hi everyone:

Patty had a telephone conversation with Dr. Costanzo on Monday afternoon. Based on the results of the exercise stress test, the echocardiogram and Patty's latest visit to the doctor, Dr. Costanzo has taken Patty off the transplant list for the foreseeable future. In fact, the doctor is recommending no further action be taken at this time other than increasing certain medicines that should protect Patty's heart going forward. Patty has somehow moved from a near-critical case to a simple heart failure management patient. How's THAT for an update?

Dr. Costanzo said that she had never seen a situation like Patty's before, where someone was so severely ill and then rebounded so completely. Almost all medical literature suggests that once heart failure begins, it typically gets worse and rarely gets better. The doctor won't even really guess why this has happened. Patty credits her mother, father, Ellen, Carrie and others for playing the role of guardian angels. I'm not sure what I believe, but I am very happy to hear some good news for my wonderful wife. We're realistic, of course -- Patty still suffers from fatigue, and she could have problems in the future -- but for now our patient is choosing to regard this as a miracle.

With this news, the infrequent postings may become even less frequent. I will pop in with a note from time to time, because I'm sure there will be other news to share along the way. I will certainly pick up the pace again if Patty's health slips at any point, but we're hoping that will never be the case. I cannot tell you how much it means to us that all of you have been checking in and pulling for Patty and our family. She is remarkable, and I again look forward to a long life with her.

Love,
Brian

One from the patient

2007-10-05T20:38:00.000-07:00

Hi everyone:

This weekend is one filled with activities surrounding our high school's Homecoming. As we're the parents of a 14-year-old freshman (and a 16-year-old junior), we decided to immerse ourselves in Homecoming activities -- we did so in part because I have obligations to the school, and in part because we're being mother hens.

Tonight we all attended the football games, because I was hosting a face painting booth at which Patrick and several other NAHS students were working. PJ worked like a dog the whole time, and displayed a level of maturity that both surprised me and made me beam with pride. It was a successful evening -- we made a surprising amount of money, especially considering we were charging two dollars per face.

Tomorrow's festivities include the Homecoming Dance, which both Brian and I are chaperoning, and PJ and Kelly are attending. The preparation for said dance will likely be as exhausting as the evening.

I've been feeling just great these days, which is fortunate, because these activities are exhausting to everyone; I'm surprising myself and others by how well I am faring.

That's all for now; thanks for continuing to read this blog. Sorry this is such a boring entry to the collection; however, I've come to believe that BORING = GOOD, at least as the content of this blog is concerned.

Love,

Patty

PJ at work (the first of many customers)

Mr. Jumbohead

Three faces of...

2007-10-01T18:45:00.000-07:00

A few funny heartbeats, more meds, etc.

2007-10-01T17:54:00.000-07:00

Hi everyone:

Patty met with a nurse practitioner at Midwest Health (Edward Hospital) this afternoon. I had mentioned previously that Dr. Costanzo was attempting to increase Patty's dosage of both beta blockers and ACE inhibitors; this appointment was a check-in to evaluate whether further increases were possible. Last time, Patty's ACE inhibitor (lisinopril) dose was upped; this time, she's been asked to take a larger dose of her beta blocker (metoprolol). We will of course continue to monitor her blood pressure, but so far, so good.

One interesting thing (well, interesting to me, anyway) is that Patty has experienced a handful of minor arrhythmias over the past few days, after a fairly long stretch without anything that felt irregular. Unless I'm mistaken, increasing an ACE inhibitor or beta blocker dose will typically reduce the number of arrhythmias. Interesting...not necesarily meaningful, but interesting...

Patty and I are planning to chaperone the first-ever OEHS Homecoming Dance this Saturday, much to the dismay of our daughter, who finds the prospect "embarrassing." Patty noticed last night that she has plans for Thursday, Friday and Saturday nights, in addition to her workday. I suspect that Sunday will be a major decompression day. Patty has more endurance than in the past, but she still has her limits, so we'll just have to see how things go.

Only about five months now until Spring Training...Go Sox (sigh).

Love,
Brian

Update? Well...no...not really

2007-09-28T14:04:00.000-07:00

Hi everyone:

I just wanted to assure everyone that if I'm going for long stretches without writing, chances are that everything is just fine. Whenever there is anything meaningful to report, I'll do everything in my power to provide updates here. We have not yet heard back from Dr. Costanzo about the stress test results, so we still don't have an official position about whether or not Patty will remain on the transplant list.

As usual, I have little to report. The most exciting thing that has happened around here is that I jokingly said I was going to flick a piece of popcorn off my hand into Connor's mouth about six feet away -- and then fired it directly onto his tongue. PJ, who had a perfect view of the action, almost fell off his chair.

We have been homebodies most nights; we recently saw The Wind that Shakes the Barley (very good) and Bug (very bad). The kids are gone for the weekend with Steve, so we'll probably get caught up on some other films we've wanted to watch. There, now you're completely up to date.

Love,
Brian

Again, little to report

2007-09-25T05:56:00.000-07:00

Hi everyone:

As has been the case for some time now, it seems, there's little to report. Patty is busy, I'm busy, and the kids are busy. On the health front, Patty still seems to be holding her own quite well; she seems pale some days, and tired others, but that's to be expected. All in all, things are going pretty well right now for our patient. More as we hear it...

Love,
Brian

Blah, blah, blah...ahem...blah, blah

2007-09-19T04:42:00.000-07:00

Hi everyone:

We exchanged emails with Dr. Costanzo yesterday. We enquired about the results from the stress test and echocardiogram; she replied to let us know she was at a conference and would get back to us on Thursday. So, for the time being, I guess no news is good news.

Patty continues to do well; fatigue seems to be the only recurring theme these days, and even that seems manageable. On a typical day, Patty leaves for work at 6:45 am and gets home just before noon. By 1:00pm most days, she dozes off on the sofa. Some days, she needs to go back to the school, so her nap is abbreviated to an hour; otherwise, she'll rest a little longer. Our evenings typically end now sometime between 9pm and 10pm, much to the amazement of our kids, who had been conditioned to consider us nighthawks.

On a good day, we sneak away from the kids for 2o minutes and go for a walk in the neighborhood; this photo is from Monday.

More soon...

Love,
Brian

Good news

2007-09-17T17:13:00.000-07:00

Hi everyone:

Congratulations to Rachel, Peter, Ben and Sam on the latest addition to their family...baby Anna. She arrived at 10:29 pm yesterday, and weighed in at 7lbs, 10oz. I'm pretty sure this is the 100th grandchild of Joan and Patrick...give or take.

Love,

Brian

P.S. Other than some slight dizziness associated with the increase in Patty's ACE inhibitor dose, Patty has been just great lately.

Dancing again...

2007-09-14T05:10:00.000-07:00

A somewhat surprising doctor visit

2007-09-12T11:09:00.000-07:00

Hi everyone:

Patty had her routine appointment with Dr. Costanzo yesterday, although "routine" turns out to be a huge misnomer. The doctor said that based on Patty's present condition, she is re-evaluating whether or not Patty should stay on the transplant list; in her words, "I think you're too healthy for a transplant right now." Without using words like "miraculous", she did say that she continues to be truly surprised at how remarkable Patty's turnaround has been since last year. Her heart sounds relatively normal through the stethoscope, and her lungs sound clear. Dr. Costanzo needs the results from Monday's stress test and from an echocardiogram scheduled for this Friday before she will make concrete suggestions to the doctors at UCH.

So, if thoughts of transplant are moved to the back burner for a while, what's next for our patient? First, they want to increase her dosage of beta blockers and ACE inhibitors, two classes of drugs that have positive effects on damaged hearts. Historically, Patty has not tolerated these drugs very well -- they have caused her blood pressure to plummet. She is going to be monitored very closely, and the doses will be increased very slowly. Patty has also been given the blessing to do aerobic exercise (walking, inline skating, etc.), but no weight training, sit-ups or crunches. Patty hopes that exercise will give her more energy to tackle her work days.

Dr. Costanzo also wants to make the case for upgrading Patty's pacemaker to a biventricular device, so that it more evenly regulates the motion of the right and left ventricles. Biventricular pacing has been shown to reduce the amount of heart remodeling that takes place. Finally, Dr. Costanzo is considering Patty for a study that could involve wrapping a section of Patty's heart with a Paracor HeartNet (http://www.paracormedical.com/ourTechnology01.asp), a mesh device that reinforces the walls of the heart. This could later be removed if a heart transplant again becomes a priority.

The hope with all these activities is to postpone the need for a transplant as long as possible, at which time doctors may be in a position to approve the heart transplant with accessory liver transplant (I discussed this briefly on an earlier date.) Dr. Costanzo is very enthusiastic about the promise of this as-now experimental treatment.

I then presented Dr. Costanzo with a "what if" -- what if we receive a call over the next couple of days telling us they have a heart for Patty; in essence, she said, "What have you been doing with all the calls you've been receiving so far?" Point taken.

We are cautiously optimistic about all of this. Comparing the Patty of today to the Patty of last summer is a night-and-day proposition; she really is doing remarkably well. We are inclined to be a bit guarded in our hopefulness, though, because we witnessed Patty doing very well before, only to see her condition take a sudden downturn. For now, though, this seems like the best possible news, so we'll take it as a real plus and go from there.

Thank you, everyone, for everything you have done and continue to do to help our family. Patty, the kids and I could not have made it this far without your kindness. I'm happy for my wife and friend; she totally deserves this good news.

Love,
Brian

In the spotlight again

2007-09-10T07:36:00.000-07:00

Hi everyone:

Patty picked up an additional 15 minutes of fame this past Sunday; the Aurora Beacon News printed a follow-up piece that updated the stories of three people in our area, one of whom is Patty. If you look closely at the picture to the right, you can see the large photo of Patty working with one of her students; below the fold was a fairly detailed update on Patty's status. You can access the story online HERE.

Patty has her exercise stress test today, and appointment with Dr. Costanzo tomorrow; I'll catch you up if there's anything to report.

Love,
Brian

More tests

2007-09-07T13:39:00.000-07:00

Hi everyone:

On Monday after work, Patty will be undergoing an exercise stress test at Edward Hospital to evaluate the current condition of her heart. Patty hates this test, so she's not especially thrilled. I presume we will hear results on Tuesday when Patty meets with Dr. Costanzo.

If the stress test suggests that Patty's heart is holding its own -- that is, it shows no further signs of deterioration -- doctors may be able to indefinitely postpone activities designed to reduce Patty's antibodies. Since these activities have thus far done little other than to render Patty sick, we're hopeful about this outcome. Dr. Costanzo may also opt to do a right-heart catheterization, to further evaluate Patty before making decisions.

If I understand correctly, the plan would then be to continue to hope that a negative crossmatch would become available for transplant; in the interim, we would continue to keep our fingers crossed that Patty's heart will sustain her. Given her recent track record, I'm encouraged.

Patty and I were interviewed yesterday, and Patty was photographed today, for a short follow-up article in the Aurora Beacon News. I'll let you know when the article comes out.

Love,
Brian

Holding up

2007-09-05T19:58:00.000-07:00

Hi everyone:

We're half-way through Patty's second week of work, and she's holding up pretty well. Fatigue continues to be a factor, but as long as our patient gets a nap during the day and heads off to bed relatively early at night, she seems to have sufficient stamina to manage two blocks of school. Patty teaches Patrick in her first class each day, and I've been impressed by the work he's been producing; I'm not sure if the laurels are more deserved by teacher or student, so I'll just say that I'm proud of them both. Kelly and Connor seem to be adjusting very well to their new schools -- he to junior high, and she to Oswego East (with Mom.)

I've been trying to find some information about the most recent possibility posed by Patty's doctors -- that of transplanting a section of liver (an accessory transplant) at the same time as a heart, even if a positive crossmatch was evident. I presume the intent here would be to somehow fool Patty's body into thinking the heart was appropriate because of the presence of the liver segment; of course, I'm just guessing. The UCH team has cautioned us against putting too much stock in this right now, because they are only now starting to consider its viability. There is no research posted on the internet that I could find. To be honest, the prospect of this is terrifying to me, although I want them to make Patty truly well one day. I'm so happy that she has been so tough, because that seems to give her (and her doctors) time to come up with possible answers.

Patty has an appointment with Dr. Costanzo next week, at which time we should have additional insights to share. Thanks for sticking with us...it's nice to know there are people out there pulling for Patty on a day-to-day basis.

Love,
Brian

Some pics from Luke/Nicole Wedding Celebration: The Sequel

Sam & Neil

Yours truly

Kathleen & Valerie

Connor's thoughts

2007-09-02T11:14:00.000-07:00

This summer was the best summer I ever had. My favorite part was when we went to Florida. We did a lot of other things, too, and my Mom got to do most of them with us. My Mom is doing so much better; she can do a bunch of stuff with us now.

I will tell you my favorite parts about Florida: we went snorkeling and we stayed at a really nice hotel. But my absolute favorite part was when we went on the airplane. That was my wonderful summer with my family.

Love,
Connor