Thursday, October 26, 2017

Transplant appointment update



It has been a week since my transplant appointment, and I’m just now getting around to blogging about it. I have a ton to do, but am making the time to blog today. Grin.

All and all the appointment went well. I did better distance wise on my six-minute walk, but needed 10 liters of oxygen to do it. Even then I spent most of the walk saturating in the 80s. (They stop the walk if you go below 80 now, which I did last time on eight liters.) In practical life, this means I have to make myself walk slower, or crank up the oxygen to 15 liters, which means the tank is gone in minutes. It also means I’m hugely grateful for the wheel chair I have now. I still try to walk Finley around our block, and the park (about a half mile) several times a day. The route is fairly flat. I really can’t do hills anymore. Usually after about a mile I’m getting tired. I can do more, probably another mile more, but the tradeoff is that I won’t have the energy to do much else for several hours. If all I had to do was be a patient, this would be okay. The reality is I need to keep working as many hours as I can to make the money stretch. This has been a long journey, and the longer it drags out, the more expensive it gets.

Nothing developed that would increase my lung allocation score. I was a bit disappointed only because I feel like I’m getting tired even more easily, if that is even possible. But, as I told the docs, how do you tell how much of that is because of the pulmonary fibrosis (which causes fatigue) or the five medications I take daily that have drowsiness listed as a side effect. I feel like I could sleep most of the day, if I allowed myself to do that. Of course, I don’t. I do try to get 10 hours a night. Eight doesn’t seem to be enough unless I can snag a one or two hour nap during the day.

My schedule has been super busy these past few weeks, and will be super busy for the next few weeks. In November it will be a year that I have been on the transplant list. So, it is like going through the whole evaluation all over again. I have to have a bunch of tests repeated, including the right heart cath. The up side is maybe they’ll find something that would add points to my lung allocation score. The down side is there is always the risk they will find something that could create a problem being on the list. The longer you are sick, the more stuff can come up.

But, there we are. It is what it is and I’m plotting forward as best I can. It isn’t like I have a choice really.


I cracked up at the doc and ribbed him a bit. He asked if I would be at the American Thoracic Society meeting in May this coming year. I answered that it depended on whether he gets me a new set of lungs by then. Then, I asked him if he could speed this up…I have this meeting I really want to attend in March! Ha ha ha ha…..

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