As I wrote about in a blog back in September I have been seeing the transplant doctor at my hospital in Grand Rapids, Spectrum health. They have been following my progression, and for a while it was really unchanged. After January of this year it did change a little bit. I have not bounced back from a couple CF exacerbations like I typically do. Leaving my lung numbers to stay in the lower 30's, and also having more symptomatic signs of lung failure. After a couple months of still waiting to see what would happen, if I might bounce back up some, if it was just taking longer than usual, I decided that although I was feeling better, it still wasn't my baseline. Dr. Gergis had told me that if that was the case it might be best to start the process of being evaluated to be listed for a double lung transplant. There are a few more things other than just my lung function and symptoms that are leading us in this direction, a few being my weight (or lack there of), my increasing resistances to antibiotics, and increasing need for hospitalizations. So next week I will start the process of evaluation. This includes to start with meeting the whole team including surgeons, nurse coordinators, and pharmacy staff. A financial run down, where they go over my insurance and what will be covered. Then there is clinical tests such as PFT's, 6 minute walk, blood gases, right heart cath, echocardiogram, and psych. evaluation. After they gather all this information from my body and me the doctors compile and review it to decide whether I am indeed a good candidate to be listed for lung transplant or not. If I am and I decide its the direction I want to go and am ready they can list me. If I was listed the way my health is now I would likely have a low allocation score, or could even be on the inactive list. The allocation score is the system they use for lung transplants, the higher your score, the sicker you are, and higher on the list you are. The benefit of me being listed even though I am not sick enough to need lungs just yet, and would be listed with a high score or as inactive, simply put, being ahead of the game. If I suddenly became very ill and needed lungs it's much easier to increase my allocation score moving me up the list, rather than while I am sicker going through the process of being listed then or even in an emergency setting. I could also refuse lungs at anytime if
they were offered and I didn't feel I was ready. Whether I will be listed I don't know, am I willing to take that route need be. Yes. There are also other things that will be taking care of before I will be listed, those things are terms that I have personally. Those being my family being ready for it also. Colton is very anxious about me even seeing the transplant doctor, so me being evaluated has been a touchy subject for him. He knows I can die from CF and he knows I could die with a transplant and that rightfully scares him. I have spoke with the nurse coordinator at clinic and they are working on getting me some resources for him, this is new to them, having a patient that is young enough (because they are a new transplant facility) to have a school aged child that needs the support also. Thankful they can reach out to the Helen DeVos Children's Hospital for those resources for Colton. In the mean time I still fight CF like hell to keep my own lungs! As much as they suck and hate me and I hate them I'd still like to keep them as long as possible.
