It’s been a little over two weeks since my last post and I can now share with you that Jody has officially been made active on the national transplant list through UNOS. His actual list date was March 25th. In my last post I told you how we were having a hard time making this decision, and that Jody’s doctors were not in complete agreement with which way to go either. Recently we learned why this has been a hard decision even for Jody’s team of physicians: he doesn’t fit the picture of a “typical” CF patient listing for transplant.
When most adults with CF (80%) are listed, it’s because they are using oxygen 100% of the time, and are losing weight (which is super important for those with CF to be able to fight off infections). I’ve never talked about CF and weight before, so you may not know that many people with CF do not have any digestive enzymes so their body does not naturally absorb all the fat and nutrients from the food they eat. While they take digestive enzyme pills to help with this problem, they are not quite as effective. For this reason, almost anyone you meet with Cystic Fibrosis will be quite thin, despite a high fat diet. Jody for instance, drinks 1600 calorie shakes every day to help him gain weight, and can eat as much fat in his diet as he wants (if you’re thinking to yourself, ‘must be nice,’ think again, you wouldn’t want the rest of what he has to deal with). In general, people with CF have to work really hard to maintain their weight so when weight begins to fall, this is problematic. Jody does not fall into either one of the categories above: he’s maintaining his weight, and while he wears oxygen most of the time, he can also go without it if he is sitting down and not doing anything.
One of the driving forces behind the decision to list Jody now is the frequency of which he needs IV antibiotics to fight off infections and keep him well. He used to bounce back after these IV’s, meaning his shortness of breathe would go away, his lung function would improve, and he would return to his normal, active self. In the past six months or so, this hasn’t been the case. Jody’s lungs are worn and tired, and they don’t have much bounce-back left. It is important to replace them now, while he is well enough to withstand such an intense surgery/recovery. The doctors know that in Jody’s current state it wouldn’t take much (even just getting the flu) for him to go downhill fast, and be too sick for transplant. And so, Jody’s CF and transplant doctors, are finally in complete agreement with the decision to make him active on the list, and this is what we were waiting for.
You might have some questions about what happens next, but I think I’ll save that for my next blog post (because this one would become too long, and you’d probably lose interest). We’ll pick up where I left off soon but for now, I’ll leave you with a really good five-minute animated video that helps to explain organ donation and transplantation at a basic level, it’s worth watching.