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Lipstick? Really?
If you were going to see someone waking up from a heart transplant, what would you bring her? Maybe a soft blanket, a favorite book or relaxing music? I didn’t want anything those first couple of days; I was perpetually hot, couldn’t focus enough to read anything and I wasn’t interested in music. But that’s not the point. The point is that I couldn’t have been further from caring about what I looked like – I was focused on not vomiting or moving. So when my mom showed up with a hairbrush and lipstick (which I don’t even wear outside of the ICU), it was a little ridiculous. In her defense, she tried to put herself in my shoes, and lipstick and a hairbrush were what she thought she would have wanted (though in that situation, I think even she would get over that). And I was eventually (several days later) grateful for the hairbrush, but lipstick? Really?
New Arrival
I can’t resist addressing the numerous “congratulations on your new arrival” and “it’s a boy” e-cards I received while in the hospital. During my first hospitalization, the selection of e-cards was even slimmer than it is now, and people sent the new baby cards just to be weird and funny, which I totally appreciated. On almost every one, the sender felt the need to explain the joke to me. During my transplant stay, I received even more of these cards, and the explanations became more and more detailed. People continually explained to me that my new heart really was a new arrival, so the card actually made sense. The funniest part was that every person who sent one of these cards thought it was the most unique and amusing idea! Don’t get me wrong, though, it was very amusing and I LOVED reading every one of them.
Nurse, my Bumex is working.
My neighbor in the hospital last month was one of many patients not allowed to get out of bed on his own. Therefore, every time he wanted to get into his chair or visit the little boys’ room, he had to ring his call button. When one rings the button on that floor, someone picks up a phone at the nurses’ station and asks what the patient needs. I heard it all from this restless neighbor over the course of a few days, but the best request for help was when he rang his bell and simply said, “nurse, my Bumex is working.” Since Bumex is a diuretic used to help people shed fluids, the subtext here is, “I have to pee…and I’m going to continue needing to pee every half hour for a couple of hours, so get used to it.” The only scenario more amusing would have been if he’d said his Colace* was working.
*Colace is a stool softener. :)
I’ve never been particularly savvy with technology, and I’ve certainly never been an early adopter of new products or trends. No one has ever accused me of being faddish or of changing my tastes with whatever is hot this season. I still occasionally get accused of using the Pony Express.
I didn’t have a cell phone until my sophomore year of college. My current cell phone came out circa 2005. I resisted CDs and DVDs until tapes and videos became obsolete. I was coerced into using text messages a few years ago. I’ve never purchased an MP3 player but finally started using one when I received an iPod Touch as a gift (in 2008). I didn’t have the technology to pipe it into my car until almost a year later. You get the picture.
I certainly never expected myself to be spending so much time on the couch alternatingly employing the varying capabilities of not two but three computing devices (in between firing off text messages on my archaic cell phone). My brothers gave me an iPad for my birthday – quite possibly the greatest gift ever – and it now plays a prominent role in my every day. I love ‘Words with Friends’ and have several games ongoing at all times (if you want to play, the name’s Dre-Bird). I frequently lull myself to sleep with a challenging game of ‘Wheel of Fortune’ or a tough round of ‘Hangman’. I also occupy my time with a couple of news apps and books I’ve downloaded. It’s quite the little machine, ripe with opportunities for passing the time. Then I have my work and home computers, with which I tinker at different times – though don’t worry, the work computer only comes out rarely when I want to check in and see if I’m missing anything critical. Anyway, the point is, I’m pretty much running command central over here and have quickly gone from ‘laggard’ to at least ‘early majority’ for those of you familiar with the New Product Diffusion Curve.
It is with this lens that I critique the television rental system at my hospital. TV is free for those of us in dire enough straits to require care in the ICU or the CCU (along with peeing in bed, one of the perks of being REALLY sick). However, on the regular floors, patients must pay a daily fee to rent the television. I think it’s $4 per day. There are 600 beds total; let’s imagine that 300 of these are on regular floors. In my [vast] experience in the hospital, approximately 50% of patients are too sick to care about watching TV, so that leaves us with 150 rooms renting the television each day the hospital is full. That means a maximum of $600 per day in TV revenue. Small potatoes, right? Now let me tell you how this money is collected. There is a lady who actually identifies herself as the “TV Lady” when she knocks on each of these 150 doors to collect payment every single day. THAT’S the system. A lady walking around the hospital, knocking on doors, collecting $4 from each TV-watching patient. If that isn’t an antiquated system, I don’t know what is. It makes my pre-historic self look like I’m on the forefront of the technology curve.
Every time I see the TV Lady, I am blown away by the inefficiency of this system and flabbergasted that someone hasn’t identified a more cost-effective solution. But I guess I should take comfort in the fact that the brilliant minds are focusing on advancing the technology for things like life-saving organ transplants instead of television rental services. I suppose it would be a far more alarming scenario to seamlessly order my TV service through an automated system and then get a knock at the door from the uniformed “Organ Lady”.
Status update: Yesterday was my four-week anniversary! I have not received my biopsy results yet, but I am feeling good most of the time. Something is wrong with my left foot, which has prevented me from taking my daily walks for a few days, but yesterday I got the go ahead to use the stationary bike at the gym (when there aren’t a lot of people there) and today I rode it for 20 minutes! I've also eaten out at restaurants (outdoors only) and even had my first glass of wine (as documented in the photo below, which I affectionately refer to as fat-face)!
I’ve been a cynic for most of my 29 years. While I’ve never presumed that people are inherently bad, I’ve certainly never given humanity credit for being particularly good. People are busy, and our survival instincts urge us to look out for #1 and those closest to us. But my new reality has revealed to me just how good people truly are.
I have received the most heart-warming and thoughtful notes from so many people. People I barely know. People I never particularly clicked with. Old friends from whom I’ve drifted apart. Strangers who have been through similar situations. Strangers who have simply heard my story. And of course my close friends and family. While I was in the hospital, I’m pretty sure I set a record for the number of e-cards received for a patient. Now that I’m home, the mailman probably wonders why I receive handfuls of greeting cards most days and frequent packages. The e-mails, Facebook notes and blog comments are equally as overwhelming.
I’ve found that when people sense tragedy or loss or a need of some kind, they respond. They want to help. This is how I would define “good” and this is what I’ve seen over the past ten months. An outpouring of good from all of you.
So no matter what your experience has been lately – you’ve probably fallen out of touch with people you once cared about – don’t assume it’s because they don’t care. They are just busy, as are you. If they find out you need help or support or encouragement, I’m certain they will reemerge by your side. I have witnessed the true good of people – the thoughtfulness, the generosity, the pure love – I just hope you never have a reason to see it first-hand the way I have.
People have asked me recently what actually hurts – when I say I’m having discomfort, what do I mean? Good question. It never occurred to me that one might wonder such a thing. Now that I’ve bid adieu to the majority of the pain, I’ll share with you my physical experience from the last two and a half weeks.
The first and worst symptom I felt was nausea, which is apparently typical after being under general anesthesia. I vomited twice the day after surgery. The first time was against all odds, since I hadn’t consumed anything in over 36 hours and had breathing tubes down my throat – that was a bit alarming for me but at least convinced the nurses I was ready to be extubated. The second time was after I drank my first cup of water – like magic, it was instantaneously back in my cup. I spent the next two days being as still as possible and ingesting as little as the nurses would allow. During this time, I also had the pleasure a catheter sticking out of my neck, two tubes (with diameters the size of dimes) emerging from my chest to drain fluids and four external pacing wires in case we needed to give my new heart a boost.
Once the tubes came out and the nausea subsided, the chest pain began, or at least I began to focus on it. Since a heart transplant involves a sternotomy (the sternum is cracked and propped open during surgery), one’s chest is very uncomfortable thereafter. Not only did I experience pain at the incision site, but most of my chest was also covered in tender bruises from the operation. Additionally, a patient is encouraged to breath as deeply as possible and cough as much as possible after surgery to clear the lungs of fluids, and as you might imagine, it is quite uncomfortable to do either when your chest has recently been split open and rejoined with the equivalent of the twisty ties you might use to close up a loaf of bread.
Toward the end of my hospital stay, when I had started eating more solids, I started having really bad indigestion. This is a typical side effect of the steroid I’m on. Previously I would have considered indigestion an uncomfortable nuisance, but this indigestion was quite painful. I now have much more sympathy for those who experience this regularly, as I felt like there was literally a torch burning a hole in my chest. I’ve since increased my dosage of Nexium, which has helped immensely.
My final source of discomfort is my poor wrists. I have maybe the world’s worst veins, which is problematic when undergoing a heart transplant because lots of IVs are required. In order to access my veins, nurses literally had to beat my arms on a repeated basis, which left serious bruises, a few of which are still present two and a half weeks later. The good news is I only notice my wrists hurt when none of the above [more severe] symptoms are present, so I try to be thankful for these times.
As for a status update, I continue to feel better every day. I’ve been walking up and down multiple flights of stairs for exercise the last three days and am taking longer and longer walks outside in the evenings. My last biopsy showed mild organ rejection, which we are treating with increased dosages of my immunosuppressant medications. The meds are causing headaches and numbness in my hands – a welcome substitute for organ rejection. Included are some pictures from today – starting to heal!
You know that Janis Joplin song – “Take Another Little Piece Of My Heart”? One stanza of lyrics is below for reference and nostalgia – feel free to belt it out, you know you want to.
I want you to come on, come on, come on, come on and take it,
Take another little piece of my heart now, baby,
Break another little bit of my heart now, darling, yeah.
Hey! Have another little piece of my heart now, baby, yeah.
You know you got it if it makes you feel good.
The song is in my head because today marks my two-week transplant anniversary and my cardiologist quite literally took another little piece of my heart this morning. Every week for the first six weeks after transplant, I will get a heart biopsy, which consists of my cardiologist inserting a claw thingie through my neck to grab a piece of heart tissue for testing. [She’s probably really good at that arcade game where you use the claw to try to grab a toy or stuffed animal, but that’s neither here nor there.] For the six weeks after that, I’ll have it done every other week, then monthly, until eventually I will only need to have the procedure once a year.
The biopsy itself takes under an hour and the hardest part is not eating for the ten hours prior. Those of us on large doses of steroids get mighty hungry! After the procedure, I go to the transplant center to talk with the nurses and the pharmacist about my medications. To give you an idea of the array of meds I’m taking, below is a picture of my stash (ONE month's worth). Not pictured are the random pieces of equipment, ranging from a glucometer (the steroid essentially causes [hopefully temporary] diabetes, so I have to test my glucose four times a day) to a scale (yes, I still have the pleasure of weighing myself daily), from a thermometer (I take my temperature twice a day) to a blood pressure cuff (also used twice daily). So if anyone ever wonders what I’m doing at any point during the day, you can be pretty sure I’m either sleeping, taking a pill of some sort or measuring one of my vital signs. This transplant thing is a full-time job!
For a quick status update, I am feeling good most of the time. The ups and downs continue, but the downs are nowhere near as low as they were several days ago. My trusty roommate (my mom) and I walk outside for ten to fifteen minutes each day. I’m beginning to shed some of the fluids, but I still look like I eat roughly a dozen donuts each morning and/or am pregnant. My biggest complaint is incredible indigestion, which is caused by the steroids (hence the giant bottle of Maalox pictured). As I taper the dosages, I expect this to be less and less of a problem. Overall, life is good.
Roller coasters are generally thought of as entertainment – fun, exhilarating rides that delight children and adults alike. To many however, these same piles of steel symbolize danger and evoke great fear. I think all of us can relate to the ups and downs experienced on a roller coaster – the mounting terror as we slowly ascend the biggest hill, followed by the excitement of the free-fall and then the relief of safety. I think a lot of life can be related to a roller coaster, but post-transplant life seems to provide an even closer metaphor.
The first few days post-transplant were no fun at all. Forget the roller coaster, I felt terrible. I was exhausted but too jittery to sleep. I was weak and thirsty but too nauseated to eat or drink. I was in a lot of pain, and I was terrified that something had gone wrong with my surgery. And I had some moments of serious doubt, wondering if I had made the right decision. Fortunately, this period of misery and despair was short-lived, thanks to the responsive care of my physicians and nurses and the constant reassurance of my parents.
A couple of days after transplant, the roller coaster began. I had a great couple of hours one day, followed by a miserable night. I had a good full day, followed by many hours of pain and discomfort. I have struggled to appreciate the good times for fear that another bad period will soon arrive, but I’m trying to get better about that, trying to stay positive and to appreciate the ups for what they are. I expect weeks, maybe months, of these major ups and downs. But fortunately, I seem to have turned a corner in the last couple of days – I’m definitely spending more time on the up parts of the roller coaster and less time on the downs. And for now, that’s good enough for me.
To be clear, along this roller coaster, I have also made great forward progress. To illustrate, I’ll include a couple of pictures below. The first is when I first came out of surgery and was still intubated and hooked up to twelve different IV medications, the second is when I was up in a chair the next day talking to my surgeon (still with many of the drips but breathing on my own), and the last is my first or second lap around the nurses’ station in the ICU (unhooked temporarily from my last one or two IVs). At this point, I am better enough to be too self-conscious to plaster my picture online! Maybe once I lose these 10-15 pounds of fluid…
