Recovery

How Donor Registration Helps Me

Now that National Donate Life Month has ended, I realize I did not keep my commitment to posting daily to promote organ donation. This was in part because I realized that most of my friends are already registered organ donors, and if any unregistered followers still haven’t taken the 32 seconds to register online (I just redid mine and timed it), 30 aggressive posts probably won’t make the difference. The other part was that I got busy doing things like photographing a two-time heart transplant survivor, sending a card to the family of my organ donor, getting tests done at Stanford, celebrating my birthday, having a wisdom tooth removed, and collecting jumping spiders. In other words, I’ve been busy living the life that was donated to me.

While I was waiting on the heart-lung transplant list, a few of my friends let me know that they registered to be organ donors because of me. Now that I am lucky enough to be a recipient, I continue to promote organ donor registration for a number of reasons. I’m going to try to focus this blog post on the rational and self-interested reasons I do so, rather than obsess over how helpless it makes me feel to know that innumerable vibrant and deserving people won’t get the second chance I did, and will die waiting for a match.

My theory is that more money and interest will go towards studying transplantation if more people register to be organ donors. More research is imperative to my long-term survival. In the 13 years between my first and second evaluations, tremendous progress was made in terms of the way patients are treated after transplants, and how surgeons perform the operations. Prograf, one of three key immunosuppressive medications I take twice a day, was approved for use just 20 years ago. The Organ Procurement and Transplantation Network (OPTN) recorded only 1,202 heart-lung transplants, 0.17% of total transplants performed in the United States since 1988.

The data set I’m compared to is so small that most trends have little statistical significance. This became a problem when my severe gastroparesis persisted six months after surgery. Gastroparesis affects the muscles in the stomach, causing it to empty slowly. It’s a common complication from nerve damage during lung transplantation and usually resolves itself. Two rounds of endoscopic botox injections and probably a hundred (low fiber) original PowerBars later, I’d had only marginal improvement. Quoting the latest nebulous data, my doctor didn’t expect any significant change after the first six months. He recommended a Pyloroplasty, warning this complication leads to chronic rejection (the kind where my body irreversibly attacks my transplanted organs)–eek!

Psyching myself up for a new scar, I met with a surgeon in March who explained that the surgical option would only treat the symptoms of gastroparesis, and comes with a 3% risk that I would end up on a feeding tube indefinitely. He was hesitant to operate on me, noting that I am hiking mountains instead of being admitted to emergency rooms with respiratory infections from silent aspiration. I bounced out of his office, hopeful that I might delay surgery long enough for my stomach delay to recover on its own.

Failing to satisfy my parents and physicians with promises to chew well and eat small meals, last month I had my fourth gastric emptying study at Stanford’s Nuclear Medicine and Molecular Imaging clinic. The five-hour exam begins bright and early with radioactively-labeled Egg Beaters, toast, jam and the smallest paper cup of water a fast-breaking tech can find. A one-minute scan monitors the radioactivity in the stomach at hourly intervals. The decrease in radioactivity over time reflects the rate at which food empties from the stomach. My study in April revealed that my stomach now empties at a whopping 58% of the normal rate, a heartening (puns always intended) improvement from 15% recorded in July and 19% in November. 

At this point, I won’t bore you with details of the myriad issues I’ve had because my transplant team compared me to a population instead of seeing me as an individual. In the case of my gastroparesis, I was lucky to meet with a surgeon who gave me his email address and direct line instead of a slot in his operating room schedule, allowing time for my nerves to heal at their own rate. 

There is still so much to learn and that lack of certainty is stressful for the perfectionist in me who wants each step rendered in tidy capital letters with (Pilot G2 Ultra Fine) black ink on white paper. No need to study the image below in detail or analyze what it says about me that I saved my personal record of input, output, suppositories, enemas and bowel movements from days before hospital discharge, then photographed it 288 days later and published it online. 

DSC_2754

Luckily (or unluckily for my neglected blog, jigsaw puzzles, and oil paintings), now that I am feeling healthy, I can release some of my frustration with uncertainty by marching full speed ahead of my mom to greet fellow hikers with my tear-stained face and histrionic outbursts of “nobody knows anything!”

Being one of 18 heart-lung transplant recipients in the U.S. last year means that my individual journey is statistically significant and will shape that of other recipients. Sure, it’s exhilarating to be special (my preferred term for complex), but that’s a lot of pressure, and I’d like to be a smaller portion of the data set. My mother, wiser and one-eighth of an inch shorter than I am (ignore her claims to the contrary), insists on recognizing the hope that comes with knowing future organ transplant recipients will help me as much as previous recipients have.

So that future recipients get their second chance at life, and that medical advancements continue to improve our long-term care, I need your help in promoting donor registration. Not only does one’s family make the final decision, my research suggests it’s actually pretty difficult to die in a way that makes organ donation possible. Here’s a good place to start if you, too, are looking for some light reading on brain death. Even if you never become an organ donor, registering signals to physicians and patients like me that you support the work we are doing to increase the survival statistics and quality of life of transplant recipients.

Here it is again: registerme.org

Advertisements
Standard
Pre-Op

Donate Life Month

April is National Donate Life Month, and my birthday month! I am so excited to turn 24, and this milestone is only possible because of my donor’s generosity. I’ve committed myself to promoting organ donor registration all month long through my social media.

I’m writing this having just returned from a six-hour photoshoot at 8pm. The images are being imported into my Lightroom catalog and I will have the energy to begin processing them tonight. I would never have been able to do this before my transplant and I don’t yet have all the words to express the joy and confidence this gives me.

This morning I flipped through the journal I wrote in while I was waiting on the heart-lung transplant list. The following is the last entry in it:

I’m not just waiting–I’m also sick. The story that I’m waiting around until I get a call that will allow my life to begin takes away every last strand of control I had. The reality is that I get out of breath going from my room to the bathroom and back. The reality is that I cannot photograph a wedding. I cannot walk my dog multiple times a day. I do not have the energy to cook and clean and do laundry. The idea is that I’m waiting for a future where I can do all that again. Maybe that future will come, maybe it won’t and maybe it will take an unbearably long time to get here. But there are lots of things I can do and I do not have to wait for that future to start living. Today I am in the present. I have control over what happens today–and I’m not going to spend it twiddling my thumbs and watching the clock.

After this perspective shift I started oil painting and going on occasional outings. But I only waited 17 more days before getting a call offering me my new heart and lungs. I was incredibly lucky. Having lost several friends to Pulmonary Hypertension while they were on the waiting list, I wrote in this journal knowing there was a good chance I would never get my call. There are currently 120,000 people waiting for organ transplants in the United States.

The same day I wrote this journal entry (thank you to my past self for having the good sense to date these things!), the White House hosted a summit announcing the Obama Administration’s call to action to reduce the waiting list for organ transplants. According to their statistics, 95% of Americans support organ donation, but only 50% are registered as donors. Are you registered? Make sure you are by visiting RegisterMe.org, and please talk to your family about your wishes.

My organ donor gave me a future in which I can do more than I ever thought possible. They are remembered and celebrated daily.

DSC_0960

Standard