This post will be a more detailed explanation of what's happened so far with The Predicament.
Several months ago I started having some trouble with shortness of breath and fatigue. Nothing alarming, as we knew my TAVR (transcatheter aortic valve replacement) would not last forever. These symptoms were ones I've experienced before when my other valves have started to degrade. So I made an appointment with my cardiologist. He agreed that I was having some degradation issues and we started to monitor things. A couple months later my symptoms had progressed fairly significantly and I was started on a medication to help my body cope. Ultimately, that medicine alone wasn't enough. I was put on a couple more medicines and they ran an MRI. We spent another couple weeks messing with the dosages of the medications and generally watching how I was feeling, monitoring blood pressure, and at one point speaking daily to my worried and incredibly dedicated cardiologist.
This whole time I had been feeling steadily worse. It wasn't possible for me to walk far without having to stop every so often to breathe. I was generally always tired, going basically from one chair to another. And worst of all!--I was having trouble sleeping. I can go days without food, guys. Ain't no thang. But as past ICU nurses will tell you, I'm an absolute pill when I can't get uninterrupted sleep. I'm just saying, my mom taught me better than to throw things. Especially at nurses.
During this, my cardiologist had gotten the MRI results back and wasn't overall thrilled with how things looked. So we started looking at 2 possible paths: Path A) another TAVR. Path B) heart transplant. For the record, we were always looking at both options at the same time. There are so many factors with both paths, and we wouldn't know right away which one was the better option. And with time being a hot commodity, it was always prudent to run both paths simultaneously rather than eliminating one at a time. A logical thought process I can very much get behind. So as part of this 2 path system, I met with a very highly thought of member of the Advanced Heart Failure Team, or AHFT (pronounced "aft" at our house, because advanced heart failure team is not only a mouthful, it is an incredibly depressing name). (Side note, as a joke, this is when I came up with Heart Function, Ltd. as an alternative name. Dark humor is a coping mechanism, ok?) This new cardiologist backed me off one of my current meds, doubled the dose of another, and BOOM. I bounced back like a tennis ball. I started feeling much better almost immediately upon starting the new regimen.
Unfortunately the MRI was not enough to give us a conclusive idea of what was going on. So he ordered a CTA (computed tomography angiogram) which is a fancy way of saying they injected a dye to make my blood vessels light up like Christmas night so they could get some really stellar pictures. Good news!: it worked! The images were perfect! Bad news!: my heart was in full on crisis mode. The TAVR was failing, but so was my actual heart. And the really bad news: they didn't think replacing the TAVR was going to do me much good. Even if it did ease the burden on my heart enough to buy me time, they didn't think it would be enough help, nor buy me enough time. And there was still the risk--as with any procedure, even minimally invasive ones--that doing more to my heart than we really need to could cause more issues than it solves. My heart has already been through 3 open heart surgeries, a heart attack, a TAVR procedure, and surgical complications every time they had opened me up. Think of my heart as Bruce Banner. As long as everything's chill, it's fine. But if we try to push too hard or do too much, my heart could also just decide it's had enough, Hulk out, and rage quit.
That might be a poor analogy. Or an excellent one. Jury's still out...
Moving past my dramatics. Thus the TAVR path is officially nixed, and we have started the process of getting on the heart transplant list. So that pretty much catches you all up to where we are now. Which is why I've started this blog. I want to be as open as I can about this process because I have never gone through this, or had anyone close to me go through this. I figure if I'm a newbie to all this, most of you are, too. I love the idea of trying to inform and educate and have some fun all at once. But I also want to be the one to put my own story out there. In doing so, I have a couple requests:
I'm doing fine right now. I don't need anything. Like, at all. Honestly. In fact, you cannot bring me food because I'm on a special diet. And I'm staying busy because I'm still going to work (hi everyone!) and doing things that I normally do. Just not everything I normally do. (Missing my theatre friends, and now you guys know why I couldn't walk around much during that last show...)
Please don't pump my mom, sister, mother-in-law, or husband for information. They love me and at my request have willingly kept this a secret up to this point. But they deserve their privacy, too. And once I'm ready for information to get out on any particular development, I will either update this website or have one of them get the information out to everyone somehow. Of course you can ask them how I'm doing. Heck, I'd love to hear from you myself! Just remember that with the exception of Josh and Lisa, we're all introverts, so interacting with lots of people and handing out personal information like it's candy is physically and mentally draining.
There might be a lot of time between posts, which isn't necessarily a bad thing. In August I will complete the evaluation and have my case presented to the heart transplant committee. But even after that, once I'm -- hopefully -- on the list, the wait could stretch on for months. I'll still have doctors appointments and so I'll try to post updates. And maybe I can entertain you all with some fun anecdotes as we wait! But don't expect anything terribly regular in terms of posts.
Please treat me like a regular person for as long as possible. The biggest reason for not telling you all of this sooner was because no one was the wiser. I don't like keeping things from people that care about me, but I also don't relish being the "sick girl" again. And as long as I can keep doing things, I'm going to do them. I want to be treated normally and not fretted over. If you see me pass out, then you may panic. ...Kidding! That's a joke. *see reference to dark humor coping mechanism
I'll have some fun stories for you guys soon. I have a new favorite superhero in scrubs named Linda. I can tell you more about all the things Mom and Josh and I have done to get me ready for any eventuality. And I have a growing list of low sodium, heart healthy treats and ingredients that Lisa has turned into actual edible meals! Super impressive, you guys.