A Giant Step Closer to Lung Transplants

Lots of drama yesterday. I met our friend Don at the university hospital in the city and went up to the lung clinic for his first appointment. He has been having breathing issues that are quite pronounced. We met a new “Fellow” who did the input interview, then brought in the doctor after they discussed everything between them.

I recognized the doctor and he kept looking at me like, “I know you from somewhere…” We talked at an ILD luncheon two years ago and have bumped into each other through the years. Anyway, Don answered his additional questions, they both told him they don’t think that what he has was serious and ordered a full set of pulmonary function tests and a chest x-ray. The entire appointment was just over an hour.

After running Don downstairs to visit with my most favorite x-ray tech, we retrieved his car from valet parking and he took off. He did say that he felt that he was listened to, that he was in good hands and is confident that they will figure it out.

I ran back up to the clinic for my 3:00 appointment. While having my vitals checked, Don’s doctor came by for a chat. He asked my name again, remembered that I had HP and was with Dr. K. I told him that Don felt that he was in good hands and thanked him.

 I did just two PFTs - Spirometry and DLCO – before seeing Dr. K.

Not good. Still around the same numbers compared to 6 weeks ago. She believed that more antibiotics and continuing the higher dosages of prednisone wouldn’t improve my lungs at this point. She heard a lot of crackling.

She believed that what I am experiencing is just part of the HP disease process. A big, fat giant step toward lung transplants. The dreaded transplants. Only 50% of transplanted people are alive after 5 years. Not great odds. Something to be put off as long as possible.

Sooooo, I am one never to throw in the towel. Per Dr. K., I haven’t been to rehab in over eight weeks. Exercise has worked for me by keeping my disease stable these past seven years, so I am going to hit the gym hard. I am seeing her again in just six weeks. I have six weeks to exercise everyday to see if I can improve my lungs. If not, at least I tried.

Here we go.