It's been a while since I wrote anything, and I actually have a lot to catch you up on. For the past two weeks, I've done a lot of tests, seen a lot of doctors and nurses, and gotten a lot of good news. So we'll start at the very beginning, a very good place to start...
Three weeks ago, we went for my evaluation for lung transplant. I didn't tell many people, didn't tell my workplace the reason I had to have so many tests done, and realized after-the-fact that there were some people who I thought knew about it, but didn't.
It was four days of tests and meetings. I was planning to write about the whole thing, but I'll spare you the details unless you really want to know (I'm perfectly fine sharing, it's just a long story.) In short, I had 10 different tests, was stuck with a needle 7 different times, and met with 4 different people. My poor veins, they are still recovering and I still have bruises; it sucks having shit for veins. I was also radioactive for a couple days, which is something cool I'd like to slip in. I had to go to nuclear medicine both days for tests that involved inhaling or injection of a radioactive isotope. So they give you the isotope, then a machine takes pictures of you and the gamma rays you emit. Pretty cool. What this and some of the other tests showed is that my heart is in tip top shape for transplant!
Tuesday was the big day we met with the doctor where we got some wonderful news. He said I don't need a transplant now—which is awesome, though I already knew that one. I am way too healthy and can do way too much to need this right now. You might be thinking: Wait, I thought you're pretty sick, why would they make you wait, how are you "too healthy"? Well my friends, the decision to have a transplant can be a tricky one and there is no set formula. You don't want to do it too soon because you are literally trading one set of problems for another, and post-transplant your biggest enemy becomes organ rejection. So they don't want to give you that risk any sooner than needed. I may write more some other time about all that goes into it, but for now we can leave it at that.
He said to keep up the good work and truly felt the exercise and extra vest treatments are really helping. I know that working from home is helping too: I'm not around sick people very often, and getting out of that old building has done wonders for me. We don't have to repeat all these shenanigans again until it is much closer to the time of needing transplant. He said many people hold steady where I am, and it may be years until we need to do this again. But at this time (drum roll please...!) he sees no major reason why I would not be able to receive new lungs when the time comes. When he told me that, I fought back tears of joy.
I realize a lot can change between now and whenever this might happen, but it is a relief to hear I have a shot at a second chance. Now I know what I wanted to know: that if I need it, and provided all my other organs hold up well, I will be a great candidate for transplant.
Then two Tuesdays ago, I went for a regular checkup with my doctor in Columbia. I got lunch at Shakespeare's Pizza, which is a huge perk of having your doctor in Columbia haha. They had nothing but congratulations and praise and good news to give me as well! My weight is up, plus my lung numbers are even BETTER than they were 3 months ago (and remember, that's 3 more months out of the hospital... what is happening to me?!), plus she cleared me to join a gym, plus plus plus! It was spectacular.
I also finished up Pulmonary Rehab that Monday, and could continue on with that at the hospital or move on to a gym. I advocated for the gym because I know I have a lot more potential in me than the nurses at rehab acknowledged. I felt like they were holding me back, and kept telling me that I couldn't do things. I think I will be able to build up a lot more strength in a gym than with an arm bike. So last week, I officially joined the gym Jarrod has been going to, and I think it's going to be good for me.
As one of my best friends told me "Could you imagine a year ago, when you were at Barnes, that you'd be doing this well?" I'd never thought of it that way, but that is so true. I never imagined I could be 5-months post-hospital stay and feel BETTER than I was when I came out of the hospital. Usually, the day you leave the hospital is the best day ever; not just because you're going home, but because the meds have taken care of things and you feel at your best point. Then it's all downhill from there, honestly.
But apparently it's not! It's more like a plain right now, a nice boring Kansas-like plain!
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