Yesterday was my six-month check up with the lung doc at the University of Kansas. We’ve gone to every six months to keep a closer eye on me. The reality is with HPS is that as we get older; the chances of the lung disease advancing seem to go up. I’m pushing 40, which is when most HPS’ers really start to see changes in their lungs. You’ll notice a lack of geriatric sessions at our conference! (That’s a goal by the way – to need to program for the over 65 crowd!)
I was especially anxious about the check up this time as I’ve had a constant dry cough since April. Sometimes it’s better, sometimes it’s worse – but it never goes away. There could be lots of explanations for it, but as I zero in on 40, one very possible explanation was advancement in my pulmonary fibrosis.
For days before the appointments I tried to keep as busy as possible. If I stopped to think too long, I’d get very anxious.
I’ve felt much more at ease about that possibility the last few years because I do have somewhat of a plan. I’m so lucky to have an awesome brother and sister-in-law who are so good to me and who live near an HPS friendly transplant center. I know when my numbers hit a certain point; it’s time to put the plan in motion.
I’m grateful for that. Please don’t get me wrong. It has given me a lot more peace about the situation.
Still, it means drastic life changes to try to stay alive. I’ll probably give up almost everything I own. I know, it’s just stuff (and not great stuff at that), but I like some of my stuff. I like having my own apartment – my own space. I like having a place to work - both on my HPS stuff and my artwork – without having to constantly pick up all my projects so they don’t bother anyone else. I like having my own stuff in my own kitchen.
It might not seem like much, but life hasn’t brought so many of the things I took for granted that I’d have as a “normal” adult. I don’t have children. I’ll never be able to afford to own a house and decorate it the way I want. Finances will always be a stress point in my life and I don’t see that ever changing. Thus, these little attributes of adult independence mean a lot to me.
While I’m so grateful to have a plan, when the day comes to put it into motion, I have to admit I will grieve it in this way besides the sheer fear about the health issues.
So, as I cough, and as the day of the pulmonary function tests grew closer, all of this was on my mind.
Thankfully, I was able to calm down enough that the pulmonary function tests went very smoothly. I was pleased with the results.
My FVC did fall 10 percent in the last six months, which is a worry no matter how many times people in white coats tell you not to worry about it. I know that. I’ve been to this dance before! Grin! Still, the future is always in the back of your mind. My DLCO was unchanged and hasn’t moved in two years. That’s really great news. Since everything else was either unchanged or slightly better, no one, not even NIH, was worried about the fall in the FVC.
As I thought about all the things I’d have to do to move to a transplant center, I thought about all of my friends in Puerto Rico and how hard such a move is for them. At least I speak the language well. The changes that would happen in my life are huge, but not nearly as huge as someone seeking a transplant from Puerto Rico. I so admire my friends down there who have come to the mainland US to try for a transplant. No one appreciates how much courage it takes. They are so brave!
the Boston area for HPS.
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