The Noob's Lament

Few people understand that a heart transplant is not a cure. 

The only reason I know any differently is because in our first meeting, my transplant cardiologist literally said "A heart transplant is not a cure." As if to prove her point, each successive consultation we've had in the past 3 weeks has painted a very clear picture of what life will be like for me post-transplant. It's not pretty, no matter what you may have read in an uplifting BuzzFeed story, or how your uncle's mechanic's cousin has been living a blissed out, marathon-running life since he received his new heart in 1781, or how many inspirational memes I post to Facebook.

No, my life is not going to magically re-set once I get a new heart. And I'm not at all happy about that fact, so hang onto your hats, 'cuz I'm about to lay down some education here. 

Let's start with some stats, since we all know how I love math: 

• Without a heart transplant, people with my VO2 Max score have a 52% chance of 3-year survival.

• The median survival time post-heart-transplant is 15 years.

But let's put a thumbtack in that for a moment, because I can hear what you're thinking right now: "This is a clear no-brainer: 15 more trips around the sun... or 3? Well, duh, Andrea, go for Door Number One." 

But it really isn't that simple.

The decision that I have before me -- and make no mistake, it isn't any easy one -- is not the decision between my old life and a new, better one. It is the decision between death and a very different life that no sane person would ever choose unless there was no other alternative.

Still, like anyone who wants to live, I slapped on a stiff upper lip and hopped aboard the Transplant Train. In the past 3 weeks, I have given 35 vials of blood, received new 4 vaccinations, had a camera shoved down my jugular vein and into my heart while completely conscious, gone through CT scans of my head and chest, endured vascular studies of my lower body, bone scans, mammograms, lady parts exams... it feels like I've been poked and prodded by every person with a UW employee badge. In addition, I've had many consultations with all manner of doctors and specialists, from gynecologists to infectious disease specialists to nutritionists. And with each new meeting, I've learned just how compromised my life post-transplant may be. They really don't sugar-coat it. And as they've charted this course, I've had to initial or sign for each new data point acquired. 

Can you dig it? The 15 years I may get could be so bad that I must legally acknowledge it and consent to the heart transplant any way.

"Oh but Andrea, it's LIFE! That's an easy decision!"

Is it? Hear me out on this.

For someone deathly ill, I'm in really good health. I have low blood pressure, good muscle mass, excellent bone mass, I'm not obese, I'm not diabetic, I have low cholesterol, I have the "clear arteries of an 8-year old" (a direct quote), I'm not anemic, I don't smoke, I no longer drink, I don't do drugs. My thyroid is great, my lymph nodes are lymphing along, my liver is strangely wonderful after a lifetime of fun, and my kidneys are happy. My brain is free from lesions and abnormalities. Even my lungs (despite a little asthma here and there) are like, "Hey bud, let's party." I've never had cancer and based on my family history and lifestyle, I'm not predisposed to it.

True, my heart is for shit. But otherwise, I'm kind of perfect.

Aye, but here's the rub: This will change post-transplant. Whether it's due to the required life-long suppression of my immune system, or because of the side-effects of my medications, or because my other organs simply don't like the new kid in school, here's a sampling of the things I might or will deal with post-transplant:

• Cancer

• High blood pressure

• High cholesterol 

• Hardening of the arteries

• Old viral/bacterial infections coming back (once my antibodies are destroyed)

• New viral/bacterial infections from things that don't even make other people sick

• Obesity, despite staying on a low-fat, low-sodium diet for the rest of my life

• Diabetes, despite staying on a low carb, low sugar diet for the rest of my life

• Rejection of the heart

• The heart rejecting me (yep, that's an actual thing)

• Loss of limb(s) due to lack of blood flow during surgery

• HIV (from the donor)

• Hepatitis C (from the donor)

• Shingles 

• Osteopororis

• Loss of muscle mass

• Anemia

• Nausea/tummy distress

• Exhaustion

Outstanding, right? I get to trade my healthy body for a chronically-diseased one.

But wait! There's more!

In addition to all of the things I've already given up (detailed a little further down), I've been advised the following could kill me: 

• Working with animals 

• Owning or coming into contact with puppies

• Owning or coming into contact with kittens

• Traveling to any area where yellow fever is common, like the majority of the African continent (I have to decide now to get the vaccine for this, it will not be possible post-transplant)

• Eating raw oysters

• Eating sushi/sashimi/ceviche or anything served in a sushi restaurant

• Eating steak tartare or a steak cooked less than well-done 

• Eating caviar

• Eating cold cuts

• Eating raw eggs of any kind on/in anything 

• Eating pickled anything

• Eating olives 

• Bleu cheese, camembert, feta or queso fresco

• Drinking kombucha

If you know me at all, you know that I had planned to work with animals in my retirement, that my life is not complete without dogs and cats in it, that I've wanted to go on a photographic safari in Africa since I was roughly 7 years old, and that the list of foods above includes almost all of my favorite things to eat.  

So as it turns out, there seems to be two types of heart transplant patients. I think of them as Old-Timers and Newbies. 

Old Timers are the people who have been very sick for a very long time. Their lives are significantly impaired by their heart disease and they don't feel good or have much independence. They may already be plagued with some of the things I've listed above like high blood pressure, high cholesterol, obesity or diabetes. Many of them are awaiting their new hearts in long-term hospital stays.. In short, they haven't lived truly full and enjoyable lives in what must feel like absolute ages. 

To Old Timers, getting a heart transplant represents a new and exciting life -- a chance to feel far better and gain some of their independence back, giving them a real shot at enjoying things and living a fuller life. Post-transplant, they generally report being happy and satisfied with their decision to exchange their diseased heart for a new one.

And then there are the Newbies, the group to which I belong.

Being a Noob is a whole different ball of wax. I've been aware of my heart disease for 15 years and have had to make some minor adjustments (like not being able to scuba dive or carry heavy stuff), as well as some major adjustments (like not being able to have children). But for the most part I have been living a full and active life just like most other people my age. And then suddenly, like pretty much overnight, I became very sick. Everything changed and my life came to a screeching halt. I had to give up things like my career, my social life, travel, caffeine, alcohol, my hobbies, physical activity, my very independence and almost all of my self-reliance. I'm not sick enough to be in the hospital, but I'm not well enough to do most other stuff. I look deceivingly good in photos and if you come to visit me for a short period of time, I can fool you into thinking I'm still the same ol' me. Just don't follow me up the stairs or ask me to do any complex problem solving.

Noobs can find themselves decidedly unhappy with their new "lives" post-transplant-- and since I just put that into sarcastic quotes, I don't think I really need to explain why.

I'm feeling pretty salty about all of this. 

I'm on complete information overload. I can't really process this. Each new specialist just tells me that the particular malady they deal in is a worthy trade-off, that living with Hep C or HIV or cancer or any of the other things that I don't suffer from now will be totally worth it. I've honestly spent the past 24 hours thinking that maybe I don't want to go through with the transplant, thinking maybe I should have just stayed dead on August 26, 2017. Because there's definitely a before and there's definitely an after... and I'm currently dwelling in the twilight between the two, reeling with the knowledge that I will never have my before back. And my future doesn't exactly look healthy either.

Spoiler alert: I've decided to move forward with the transplant. But if I devolve into an Old Timer, I reserve the right to tap out. I would rather die at home after living a full life and surrounded by loved ones than after wasting away in the hospital surrounded by strangers. 

And I need you to respect that this is my decision.

Look, I'm a deeply flawed person. I'm not a hero. I'm not brave. I'm not feeling hopeful. I'm not feeling happy. I'm not feeling resilient. And I promise you that telling me that someone else has it worse than I do, telling me that I have eternal life to look forward to, telling me basically anything other than that I have every right to be enraged and depressed doesn't help.

I fully understand that you don't know what to say. I hear it in your voices, I see it in your faces, I can sense it in your online comments. We're all trying to figure out how to do this. All I can ask is that while we do, you try really hard to love me anyway.