Update on Patty

THIS IS THE FIRST POST TO THIS SITE IN A VERY LONG TIME AS I TRANSITION OVER FROM THE GOFUNDME PAGE. PLEASE SUBSCRIBE TO BE NOTIFIED OF UPDATES. PLEASE EXCUSE ANY GLITCHES...IT'S BEEN QUITE SOME TIME SINCE I'VE USED THIS PLATFORM!

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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!

You've Just Been Served Turkey and Fixins...in the Twilight Zone

On Thanksgiving Day, 2006—just over two years after her heart attack—Patty took a rare turn at the helm of a blog I'd been maintaining to keep extended family and friends as up-to-date and worried as I was about Patty's condition, treatments and prognoses. For months and months, it seemed we'd served up only fresh varieties of the worst sort of news. Patty was due for a bit of a break—and she got one.

I think you may enjoy Patty's amusing entry about a rare—almost surreal—day in which, from start to finish, everything went right:

We woke up this morning at our own pace, with no alarms. Without any real stress, we prepared for our day, including pulling together salads for Thanksgiving and getting a family ready for an outing. When we left for the airport to pick up our sons Devin and Colin, amid perfect weather, we didn't forget anything and we got away on time. There was no traffic on the way to the airport, and we found a parking space at the front of the lot. When we entered the airport, we discovered that the boys' flight was early. Their baggage was waiting when we got downstairs to claim it.  

We left the airport property to a more-or-less clear freeway. At one point, we needed to choose one of two options on 290; I chose the one I never choose, and it was totally clear, while our typical route was clogged with an accident. We arrived at my brother Mike's house and were able to park right in front of his house. Dinner was delicious, our companions were warm and welcoming, and the conversation was at times hilarious. We saw some of the family members we've missed alot, like our nephew Luke, and could not stop feeling great that Devin and Colin were with us.  

We left at a reasonable time for my energy levels, and enjoyed traffic-free routes all the way home. We had a nice couple of hours watching a documentary with the children, who then quietly proceeded upstairs for the evening, allowing us the peace and quiet necessary to write a blog entry such as this.

With all of the huge things we have to be grateful for—and, believe us, we are—it's a day like today, where everything just seems to click and go right, that I find the day itself, and the events of such a day, something to be truly thankful for. 

Not long after, we started to catch the first faint shimmers that Patty's condition might actually be improving.

How about you? Have you ever had a day seemingly touched by magic, in which everything went not just the way you hoped, but far better than you could have imagined? Please share...

Hindsight: The Grim Reaper's BFF

This morning, as I scanned various postings on the discussion forums for WomenHeart (The National Coalition for Women with Heart Disease), I was drawn to a plea from a young and frightened mother who shared a list of recurring symptoms: irregular heartbeat, dizziness, sharp pain radiating from her left breast through her back, a burning discomfort down her left arm from shoulder to wrist. As I read this list, my mind kept yapping, “check, check, check” as it reminded me of symptoms I’ve heard Patty describe along the way. 

This young woman’s doctor wrote scripts for anxiety and acid reflux, but these haven’t helped her turn a corner; early this morning, her symptoms had increased in severity. Reading this made me recall the day of Patty’s heart attack, when EMTs assured me Patty was having her first-ever “panic attack”.

Today, I joined a group of other forum participants in urging this woman to hurry to the E.R. At first, she was hesitant, because her husband is at work and she has a young child at home. Her first compromise was to suggest she’d “try to get in” to see her doctor today. With some additional nagging, though, the group convinced her to make the trip. As I write this, she’s had an EKG that revealed some extra beats, and she’s awaiting results from a blood draw. I secured her promise that she’d keep me posted about what she learns. [UPDATE: my new acquaintance says her tests came back normal, which made me feel like a bit of a heel for mucking with her day...but only a little bit.]

My discussion with this young mom brought back memories of the many times we made the “go” or “no go” decision about taking Patty to the hospital. Often, this involved Patty voting for “no go” and a certain chronic worrier of a husband insisting she get in the car. In some instances, Patty was stuck overnight for nothing, which won me few points; in others, the decision to head to the E.R. helped keep my favorite patient alive and kicking.

So what’s the right answer?

Few, if any, organized groups would ever suggest anything other than calling an ambulance at the first sign of any symptoms that could be heart-related—and, on the surface, the argument makes perfect sense. As the cardiologists say, “minutes mean muscle”; the sooner you get treatment, the better the odds you’ll spend the years ahead above ground.

So what’s the problem?

The problem is that the symptoms of a heart attack—and especially the symptoms of a heart attack in women—aren’t always so easy to pin down, for patients and sometimes even for doctors. For example, nausea and back pain may be indicative of a heart attack, but they may also tie directly to menstrual cycles, a bit of extra exertion or countless other things that have nothing to do with the heart. Extreme fatigue, another symptom, happens to every mom at one time or another. How many are going to call 9-1-1 for cramps or a touch of flu? Especially when an ambulance ride of mere minutes can cost four figures?

We're in no position to cast the first stone; Patty ignored important symptoms, as she shares in Pulse of My Heart:

Still, I’m letting myself off too easily; as I dismiss the pulsing ache, I recall this same sensation from the week before, while trick-or-treating with Brian and our youngest, Connor. The pain had been much more insistent, a hundred gnomes’ fists pummeling my rib cage. I’d trudged along, hoping the rough handling might pass, but soon felt my energy wane and vanish; I left the boys to their Halloween. At home, face-down on the family sofa, I ignored the incessant ringing of diminutive ghouls and princesses. Trick me if you must, but I’m not moving. Three Ibuprofen, a damp washcloth and darkness did nothing; only sleep offered an eventual and welcome respite.

Eight days later, Patty had a “widowmaker” heart attack that we may have been able to prevent had we treated her symptoms as more than “one of those things”.

I’m asking a question here for which I wonder if there are easy answers. I think the best advice is to (a) know yourself and (b) always err on the side of being overcautious. If you feel something that doesn’t seem right, don’t ignore what you’re experiencing. Pay very close attention. If there’s any doubt that what you’re feeling may be serious—any doubt at all—don’t wait. Your absence from family activities for a day or two will cause far less havoc than will planning your funeral.

If you're looking for an "official" answer, the American Heart Association suggests you call 9-1-1 within five minutes if you experience any of these warning signs:

1. Uncomfortable pressure, squeezing, fullness or pain in the center of your chest that lasts more than a few minutes, or that goes away and comes back.
2. Pain or discomfort in one or both arms, the back, neck, jaw or stomach.
3. Shortness of breath with or without chest discomfort.
4. Other signs such as breaking out in a cold sweat, nausea or lightheadedness.
5. As with men, women’s most common heart attack symptom is chest pain or discomfort. But women are somewhat more likely than men to experience some of the other common symptoms, particularly shortness of breath, nausea/vomiting and back or jaw pain.

I welcome your thoughts about this issue, and encourage you to share your experiences. What will it take (or what did it take) for you to make the call?

Snapshot

From early in our relationship, I've penned numerous poems, most for Patty. I'd suggest this makes her a muse, but that would by default mean I'd be willing to call myself a poet.

 

I'm certain some of my guy friends have grimaced at the notion a buddy expressed himself through verse; so be it. I'm perhaps fortunate few beer buddies will read this, because they may also grimace at the notion a friend is also trying to express himself through prose. Again, so be it.

 

To be honest, I grimace at some of the stuff I've written. I've never professed an aspiration to be the second coming of Robert Frost, nor have I answered the question, "So, what do you do?" with, "Oh, I dabble at information design, but I'm really my neighborhood's poet laureate." For me, poetry will never win me any fame, and may inspire plenty of unintended snickers. And yet, during some of my rougher moments, poetry has proven cathartic. I sit down, throw open a few heavy doors, set pen to paper and, through a nifty sleight-of-hand-and-mind, tangle some of my tougher demons in serifs, swoops and risers, if only for an instant. The demons almost always come back.

At the time I wrote "Snapshot", below, we were in the thick of doctors' efforts to reduce Patty's antibodies enough to make her a viable transplant candidate. Patty was feeling run-down much of the time. I felt a burning need to amass a huge gallery of photos of Patty, because I was imagining life as a young widower. Unfortunately, at the same time I was feeling this compulsion, Patty was feeling less and less like being the subject of photos, because few at that time captured her in the best light. This poem was my response. Be gentle.

 

 

SNAPSHOT

 

Why would you guard your essence

From my camera's yearning eye

As it begs to author a history?

In every frame a narrative

An instant of you, your presence

An emotion, a realization, a moment

A frozen whisper

Selfish, I blur out the periphery

Keeping the shadows gently from focus

Only this, for now, to grace my lens

This hint of then, of this, of what

Of chapters unwritten, images unseen

Of cautious promises of you

 

For Patty

July 25, 2006

It Only Hurts When I Don't Laugh

For some bizarre and unexplained reason, the film Patch Adams popped into my head this morning. Okay, I'm lying. I was noodling around the idea of a blog entry—this one—about the role of humor in coping with illness, and the movie popped into my head for this convoluted reason (see Figure 1...click to enlarge):

 

So, Patch Adams lodged in my head and compelled me to do further research. And, if Wikipedia is accurate (which, I'm told, is beyond any doubt), the real Dr. Patch Adams uses humor as a part of his medical treatment—so it's not at all unreasonable that, when I thought of humor and medicine, Patch Adams might spring to mind.

 

Of course, because Patch Adams is only based on a true story, the real Doc Patch apparently bristles at the film's suggestion he's a "funny doctor"—a notion at which none would arrive until the split-second they first saw his 19th-century-gentleman-slash-1970s-porn-star moustache. For many doctors, I believe, "levity" is seen as akin to "sloppiness" (or, perhaps, "humanity"). Which brings us to Figure 2:

 

 

Even if Dr. Adams chooses to be a grouch about a movie glorifying his awesomeness, I do know that humor has a place in times of greatest upset, because I've seen the darkest stabs at wit immediately lift a pall hanging over a room. True, the mood might again grow somber, but the weight of reality seems easier to support after a hearty-yet-guilty release. And sure, in some cases, the timing borders on what some might consider, uh, iffy. Case in point: at a family gathering to divide Patty's mother's belongings, Patty's brother announced with mock horror that one niece had just started into a game of dress-up in the "special boots" in which Grandma had breathed her last. A young girl's look of utter mortification was the stuff of which viral videos are made; and yet her laughter when she realized she was part of a joke was both delicious and infectious—and, I believe, healing. A twisted means to an end? Sure. And yet it's in these very moments, when the jokes are darkest, that a shot of humor seems most therapeutic.

 

As we share in Pulse of My Heart, a select few doctors get in on the action:

Seconds after nurses steal Patty, I launch into an all-encompassing panic; I can't shake the sudden certainty we've signed on for a terrible mistake. At first, I blame Patty's extra armband; next to the one sharing her name, date of birth and blood type, a pink strip announces, "R.I.P." The letters refer to some aspect of her care, but my mind drifts elsewhere. Thankfully, Patty doesn't pick up on my weakness. Even Dr. Sanborn's gallows humor fails to silence this alarm. Just before he follows Patty, I ask if someone will inform me should complications arise. He gestures to the pager nurses have given me and says, "I'll tell you this: If you see a message that reads, 'It's over', don't freak out. We'll be talking about the surgery, not your wife."

We may not have laughed then, but we find the memory heartwarming today. And our recall of the doctor is more favorable, as well. Without exception, the friendliest, cheeriest—and yes, funny—doctors were the ones we trusted most with Patty's care. There's no way I can prove humor improved Patty's well-being...but there's no proof it didn't help, either.

 

The American Cancer Society, on its website, explains that "humor therapy" or "laugh therapy" has been a part of medicine since Biblical times, although they then go on to describe this therapy in the most humorless fashion imaginable:

Although available scientific evidence does not support claims that laughter can cure cancer or any other disease, it can reduce stress and enhance a person’s quality of life. Humor has physical effects because it can stimulate the circulatory system, immune system, and other systems in the body.

Or, to simplify: If you laugh, you enjoy life more, even if you're sick.

Scientific data or no, looking for the lighter side in the darkest of moments helps ease the shadow off the path ahead, which may also help you better see your way toward an uncertain destination.

What do you think? Has humor helped you through rough patches?

Rosie the Savior?

Of late, I've been troubled by questions I'm sure the American Heart Association, Go Red for Women, The Heart Truth, WomenHeart and other organizations/campaigns must tangle with daily: It's easy to preach to a friendly, well-indoctrinated choir—comprised in large part of survivors and/or the families of those who didn't make it—but how do you kick-start the distracted masses to take action? How do you really reach those whose lives haven't been devastated by heart disease?

Take me, for example: for much of my adult life, I suspect I could've answered few questions about heart attack or heart disease, and you could have stumped me on most true-or-false quizzes. Certainly, you'd never get me to believe someone of my age needed to give heart issues more than a passing thought—something along the lines of, “Wow, too bad people die of heart attacks. Are you planning to hog the entire green bean casserole?”

Without knowing heart disease was stampeding toward our home, I might easily have worried more about thinning hair, or wondered what could really be so wrong about an erection lasting more than four hours (I still don’t know.) I wasn't ready or willing to become an expert on any random ailment I pulled out of the Grab Bag of Delicious Possible Deaths. Even in a world in which I couldn’t step three feet outside my door without getting tangled in pink ribbons, I didn’t find myself nagging my wife Patty about when she last had her boobs mashed. Most busy folks operate according to one equation:

HEART ATTACK + MY HEART = ME AS NEW EXPERT ON HEART ATTACKS

Or, to put it in a less positive way:

IF HEART ATTACK < YES = NOT MY PROBLEM

This may seem like backward thinking, but most people won’t buy flood insurance while their toes are curled into dry carpet. We react to emerging shitstorms because it’s hard and expensive to anticipate what might come and take action to prevent it, whatever “it” is. Our human machine can break down in so many ways—and even if some of those ways are more common than others, few know they’re going to get liver cancer any more than they know they’ll be wiped out by an ebola outbreak or a random falling tree. The only thing we do know is that we’ll all die one day…of something.

Once Patty had her heart attack, though, I became an evangelist. Suddenly, I was not only listening, but asking questions and tossing around opinions, punctuating my arguments with cool-sounding terms like ischemia and ejection fraction and panel reactive antibodies. I was motivated. From time to time, I've even felt guilty about this new knowledge and energy, because it could have served us much better before Patty got sick. We're fortunate that she survived, because what we've learned since may help her extend her life. Heck, we even wrote a book about Patty’s experience, and stuffed the book with information we believe might save lives. But we face a long uphill battle to transform what we believe is an important book into a popular book.

Here’s the problem: there’s tons of evangelists out there, and not so many converts. The biggest "fans" of a health-related charity are those who've already been hurt by that charity’s central illness: heart disease, diabetes, cancer, and so on. Without a crystal ball to see what's coming or a time machine to let you go back and say, "You REALLY do NOT want that chocolate eclair", how do you save those who don't know they'll ever need to be saved?

Like it or not, the answer may be (drumroll please)...Rosie O'Donnell.

Rosie is arguably the most famous female survivor of a heart attack and, whether she wants the role or not, has become a de facto ambassador. Many folks will listen to her because they feel some connection, even if it's with a person they'll never know. For example, on Rosie’s Facebook page, you’ll find dozens of people who went to the hospital because Rosie told them not to ignore symptoms. Many claim to have refocused their lifestyles because of what Rosie’s experience taught them. One woman explained that she too had suffered a heart attack, and said, “I think it’s important you know,” as though Rosie can now add “faith-healer” to her resume.

Of course, lest Rosie ever let her new role as the people’s saint go to her head, she can always find her many detractors, who balance the enthusiasm with comments like, “I didn’t know witches had hearts,” “You’re still a selfish idiot,” and “Even Dr. Oz can’t save your ugly face.” (I suspect even these folks may make better decisions about their hearts, even if it’s  out of spite.) As much as I may envy Rosie’s celebrity, and I do—especially at a time when Patty and I, as relative unknowns, struggle to get the word out about our labor of love—I’m so glad I don’t hear people lament that Patty survived, as so many have with Rosie.

The cult of celebrity seems so silly when you step back and look at it. What does Rosie have to say that hasn’t already been said by so many others—others who know more on the topic and who’ve been caring about the issue for much longer? Probably not much. But she’ll be listened to, and some of those who listen will take action before they have a heart attack. So, even if on the surface it seems outrageous that brash, outspoken Rosie O’Donnell is becoming the new face of heart attack survival—at least until Ellen or Oprah or someone else famous feels a suspious ache across a collarbone and knocks Rosie from this perch—how silly can any of this be if it saves hundreds of lives?