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