This post is VERY overdue and for that I apologize. I had wanted to wait and post once I knew all the boxes were checked and my evaluation was done, but there were some hiccups.
The 3 days of tests and consults were comparable to taking the SAT. You're drained, especially mentally. It's that sensation after hours of forced regurgitation of facts and data, leaving you feeling like spelling your own name is an olympic sport. Except I'm now so chock-full of new information, ideas, and questions that I'm not sure what I did at work the Friday after. I think I got some things done? But it's also possible I just sat there like a bump-on-a-log.
I'm not going to give a lot of details because it is simply too much to try to write down in one post. But I did my consults and ran a whole bunch of tests on August 2nd, 3rd, and 4th. I learned a lot about the process of getting approved and how donors are screened, as well as the recovery process. I had to have consults with so many people, all of them excellent in their field. I found a lot of the information fascinating. But I'm a great big ol' NERD, so that's not surprising. I had a barrage of tests done. X-rays, a CT (this one without contrast dye), pulmonary function test (PFT), and a super nice guy named Jerry did an ultrasound of all my major veins to check for clots and the likelihood that I could have problems with clots later. I also got labs drawn...twice. I have a new diet now. Still staying low sodium as much as possible, but I'm now meant to aim for 80-85 grams of protein a day. Which is A LOT of protein, especially since I am no gym rat with ambitions to be a professional bodybuilder. Typically someone my age/gender aims for 50-60 grams a day. And I was probably only getting 40-45 most days, if that. (Don't judge me. I have had just coffee for breakfast for years. It was a lifestyle choice that I made in college and have no regrets about. Coffee is delicious.) So now being told to attempt to almost double my daily protein intake is an interesting dilemma. Cutting out sodium at every possible turn hasn't been too difficult for me. Lisa (my mother-in-law and house chef) has basically completely eliminated salt from all our meals. And thanks to the combined shopping efforts of she and Josh, as well as contributions from my mom, we have found lots of new foods, snacks, and seasonings that are low- or no-sodium! (Did you know that Utz makes a no salt potato chip?) So bring on the steak and post me your favorite high protein meals, bars, and shakes in the comments!
The delay in getting this post up is mostly because it took me 2 weeks after the initial 3 day evaluation to actually get my surgical consultation done. The original surgeon’s office called me on the Tuesday of the 3 days (this evaluation process was a Tuesday, Wednesday, Thursday series of events) saying he had actually referred my case to another surgeon who works specifically with congenital heart patients. The new guy is a pediatric cardio thoracic surgeon that has started working with some adult patients because those of us born with major heart defects are actually reaching adulthood and now are beginning to need additional procedures. So Dr. Skipper (my original surgeon) believes that Dr. Maxey (my new surgeon) is a better fit for me surgically, and my Cardiac Crew was basically like, Hey man, that's chill. We cool. Let's do this. Sadly, it took 2 weeks for Dr. Maxey's schedulers to call me and get me rebooked with him, and my entire case was delayed as a result. The good news is that we loved Dr. Maxey! I did a video visit with him and he told me that he didn't think my TAVR (the bio-prosthetic valve I have already) was causing very many problems, but "your heart muscle sucks!" Which might be the greatest summation of The Predicament that I have ever heard. He told me, "Do I think you're a good candidate and should be approved for a transplant? Hell yeah I do!" It was a beautiful moment that endeared me to him forever.
So now we had THAT box checked, but apparently they needed some more labs drawn. So a week after that consult I had to go back to an Atrium facility to get those additional tests. Ok. Not a big deal. Except then it happens AGAIN. Just earlier this week I had to go again to get a couple more.
Now remember, I have married one of the world's most impatient people. He's also compassionate as hell, soft hearted, and fiercely protective of his close friends and family. And he's been worried. And stressed. And doing everything in his power to keep my life safe, stable, and as normal as possible while having to sit and watch as I go through all this. And guys, we've been doing these heart transplant gymnastics for literally WEEKS now. So I was insanely excited today at 4:30 when I got to call him and let him know:
THE ATRIUM TRANSPLANT TEAM REVIEWED MY CASE AND HAVE APPROVED ME FOR A TRANSPLANT!
Now. Before you get too excited (but really, get excited because this is a very exciting day!), remember that they still have to get insurance approval for this, now that I’m “official.” (I’m thinking ID lanyards are in order. Name and title badges, maybe?) And this isn’t approval for new orthopedic shoes, you guys. This is approval for a friggin’ new HEART. So it might take a hot mess of a minute. And then, and only then, will they send allllll my information (and my shiny new insurance approval) to the United Network for Organ Sharing (UNOS, pronounced "yew-nose" and find it here: https://unos.org for their home page and here: https://transplantliving.org/organ-facts/heart/ for basic information to heart transplant patients) and they will review it and determine where I will fall on The List. So there's yet one more level of review before I'm actually added to The List.
One step at a time. But we're doing it!