marble521

I am new to this site. I have been trying to find others to connect with that are dealing with Pulmonary Fibrosis with a family member.

My husband was diagnosed 2 1/2 yrs ago. He is 62. He recently went through all the testing required to be added to the lung transplant list, but we found out he has prostate cancer.

We have been told that normally patients with cancer are removed from the transplant program, and would have to be cancer free for 5 yrs to go back in the program. His cancer is classified as slow growing, and the transplant clinic wants him to see a specialist to see if the cancer is localized. As of right now we don't know that his options will be. He will see the specialist in about a week.

He recently started using oxygen 24/7, his sats go down into the mid 80s during activity. He was using a portable Helios at 2.5L that triggered oxygen when he breathed, but he was having trouble with it, so now he is on continuous flow portable Helios machine, and uses a concentrator around the house. He has to go up to 3L when he is walking around.

He uses a nebulizer with Pulmocort, and Budesonide 2x a day.

He has had reflux for years, and now sleeps on bed at an incline. He has not had any trouble with the reflux since he started do that. He was diagnosed with Barretts Esophagus about 5 yrs ago, and recently had a scope of his esophagus, and it looks like the damage has almost completely healed.

I know that we have a ot coming our way, but he is staying very positive. I would appreciate talking with those that are dealing with the same disease