Welcome to the forums...I, too, am seeking a lung transplant and am currently going through extensive testing. I have not been approved at a center yet.
I had a kidney transplant 3 1/2 years ago and am familiar with the rigorous testing/appointments necessary as I listed at 3 centers. I am complicated for a lung transplant because of the kidney and complications of scleroderma, especially damage to my esophagus.
Although I am not at end stage lung disease the fibrosis in my lungs is increasing and is also showing honeycombing as well as ground glass. I have also been diagnosed with pulmonary hypertension via right heart catherization. I use oxygen upon exertion and am going to pulmonary rehabilitation. Because of my age, I am seeing if I will be considered now, as my age may make me ineligible soon.
I was turned down at the first center I applied to for lungs due to damage to my esophagus shown in a barium swallow. The 2nd center is willing to test me further before making a decision. I have met with the transplant program, had a quantitative perfusion lung scan, carotid artery sonogram, stress echo with bubble, 6 minute walk test, and a meeting with the pulmonary hypertension specialist. This week I have a left and right heart catherization to validate the diagnosis of PH and check my heart. I have met with my GI doctor and am trying to get a gastric emptying and 24 hour ph esophagus test scheduled, which is turning out to be more difficult that it should be.
If I am turned down at this center there is another that does higher risk transplants but it is very far away and we would have to relocate for a while. I am hoping that the fibrosis in my lungs does not increase and they get to the bottom of my shortness of breath and get me on the right medications or that there are procedures I can go through to correct some of the things that are wrong. The problem is some of the tests and the transplant itself could damage my kidney. For the heart catherizations I will need extra hours of hydration to protect me from the dye.
As far as caregiving, the best advice I can give is to try and make others understand that Butch has a life, too. For 9 years my husband has been having people ask him how I am, but they forget that he is going through this as well. It is important for him to maintain his friendships and the activities he enjoys as much as he can. I have been very fortunate to have my husband right by my side but have been capable of managing the details (planning, finances, appointments, etc.) on my own. I am now encouraging him to become more involved in these areas in case there comes a time when I can't manage it as well. I also try to do things I know he enjoys even thought there are times it is hard for me. He has given up so much for me, I can make the extra effort for him.
I hope you will share more as to where you are in the transplant progress. I wish you both the best.