Getting ready for the next chapter in our story

 

Hi everyone:

I know most--but not all--people are active on social media, so I just wanted to share that Patty is presently receiving hospice care at home and is expected to stick around for only a couple more days. Of course, knowing Patty, one should never bet on it, and we're still pretty big fans of keeping her with us. 

Unfortunately, enough is happening around here right now that I can't update multiple platforms, so if you know someone with Facebook, perhaps they can give you a peek at our FB walls so you can catch up (Brian O'Mara-Croft, Patty O'Mara-Croft). 

My plan is to provide a full and perhaps final update to this blog once the hospice people are no longer here.

Thank you, as always, for your tireless and loving support.

Love, Brian

Returning to this blog--an update on Patty

As many of you may know from my Facebook posts of the past week, Patty spent Tuesday through Friday at Edward Hospital. The reasons were twofold. First, she had to have a new enteral feeding tube placed, because her existing tube fell out (a problem more common than one might think). She would likely have gone in, anyway, though, because she was severely dehydrated and malnourished because of a recurring inability to keep food down.

In the days before Patty went to the hospital, she barely ate at all, because there seemed little point: whatever went down soon flew right back out. As I’ve shared before—but often feel compelled to repeat—there’s no evidence her challenges are a psychological phenomenon; or, to put it another way, she’s not “doing this” to herself. 

The reasons remain a mystery to both doctors and to us, although we’ve long believed an autoimmune condition may be a player. I had even convinced local doctors that a specific condition being researched at Mayo Clinic, called autoimmune GI dysmotility (AGID) might be behind her travails; alas, in spite of the docs’ efforts, Mayo opted NOT to see Patty.

As you might expect, Patty’s blood counts, enzymes and organ function while hospitalized this past week were all haywire. Fortunately, and as expected, these improved steadily over the course of her hospitalization. Even after all these years, I’m amazed at how much and how quickly a bag of saline can improve a person who, before, seemed in dire condition.

At each stage of this recent struggle we’ve had to deal with a complicating factor, which Patty has given me her blessing to discuss--after all, perhaps her stories may help others. 

Through Patty’s two months in hospital last year, and again this past week, Patty developed a temporary but fairly intense form of dementia associated with being institutionalized. Last year, I found it deeply frightening—particularly as I had seen Patty through many hospital stays without any such compromise. This time around, I at least recognized what I was dealing with, although I’ll be honest: it’s no less off-putting. 

In short, Patty drifts into a made-up world where she perceives she’s being kidnaped, moved and/or otherwise mistreated, or visited by people alive or dead who behave in unpredictable and puzzling ways. When corrected with the truth, she often believes I and others are gaslighting her; in fact, this time around, she started reaching out to other people because she no longer trusted me. 

I feel SO bad for Patty when this happens, because, to her, it’s 100% real, upsetting and terrifying. Alas, it’s also dangerous…she fell once at the hospital, and once since she came home, because she forgot she’s unable to walk. Fortunately, she didn’t injure herself in either instance.

The silver lining? The problem starts to resolve itself almost as soon as she leaves the hospital. 

Since coming home, Patty has not been doing well, to the point I’m constantly flip-flopping whether or not to return her to the ER. She is adamant about not wanting to go, and my fears about managing her care when she’s mentally compromised (which will certainly amplify if she’s brought back in) certainly factor in. 

As I write this, Patty is experiencing steady but bearable pain in her abdomen where they inserted the tube (she had no such pain in the past, although docs didn’t seem concerned this time). She has pronounced edema, to the point the arches of her feet are filled with fluid and she has no discernable ankle bones; I’m hoping I can resolve this with diuretics, because fluid overload is a real risk to her heart. The feedings are wreaking havoc with Patty’s digestive system—she’s vomited almost as much fluid as I’ve been able to introduce through the tube. She’s been coughing and dealing with chest congestion--which is, needless to say, a bit concerning knowing she recently shared a hospital wing with COVID-19 patients; until I see other evidence, though, I’m going to presume the cough is from reflux, because why jump into a fresh rabbit hole of worry? 

Overall, Patty’s just feeling exhausted and miserable.

After the weekend, I’ll be in touch with Patty’s GI doc to explore next steps, with the real hope some minor adjustments may help speed her recovery. Otherwise, my guess is I’ll be providing fresh updates from the hospital. 

Thanks to all for your love, prayers, kind thoughts and support. I wish I had sunnier news to report, but c’est la vie—others out there are dealing with far worse-- especially this year. Our biggest objective right now is to make sure we don’t spend consecutive Christmas Days in the hospital. Fingers crossed and knocking on wood!

Exciting news--a book deal!

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

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?

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

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

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

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?

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)

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?

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

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

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

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

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...

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

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

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

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

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

Exciting opportunity (hopefully)

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

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

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

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!

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...

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

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

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

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?

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

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

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...

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?

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

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

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

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

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

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

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?

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...

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

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)

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

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

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?

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

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

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...

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

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

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

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

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?