CF Happens

Transplant check up days are always long. I just have to say…I appreciate my husband so freaking much for being my person! I am so thankful that he’s with me through everything when it comes to my health. He’s my safe space and my “safety blanket,” so to speak.

First stop was for labs and chest X-ray. All my labs looked really good. My chest X-ray showed my normal volume loss in my upper lobes.

There is some change in my upper left lobe. There is a slight increase in nodules, compared to my last chest X-ray that I had last September. The nodules are most likely attributed to reoccurring infections and inflammation. The right upper lung is unchanged.

Next stop was for lung functions and an ABG (arterial blood gas). My ABG was good, within the range it should be. My first test was 30% (FEV1), my second and third tests were both 28% (FEV1).

Next stop on the fun day of appointments was my 6-minute walk. The goal is to walk more than 1,000 feet. I walked 1,116 feet. I didn’t need any oxygen and I didn’t need to take any breaks. All great things!

Last stop was clinic to see the doctor. We talked about all of asthma issues I’ve been dealing with. He’s not as convinced as my CF doctor back home is that it’s mainly asthma causing the issues. He did say with Tezspire being my 3rd asthma biologic I’m trying, it should give us a better idea if the eosinophilic asthma is a/the major culprit.

It could just be the trifecta of CF, asthma and bronchiectasis all causing issues. With the decline in my lung function as well as not getting my lung function back up to what was my baseline/normal of 32% (FEV1) shows a descent enough decline. I’ve been averaging between 25% and 30%.

He would like for me to go down from 5mg of prednisone to 2.5mg of prednisone soon. Then of course work at getting off prednisone all together. It’s not an ideal thing for me to be on prednisone long term (pre transplant).

When I am totally off the prednisone, he wants me to do lung functions and a 6-minute walk to see where I’m sitting at without the prednisone in my system. He also is curious how the Tezspire will perform without prednisone in my system.

He wants to see me back in 3 months. When I go back in 3 months I’ll do all the normal things I do with every time I have my (pre) transplant appointments which are labs, chest X-ray, lung functions, 6-minute walk and see the doctor. He wants to add in a chest CT in as well. Hopefully we can go back to every 6 months after the next day of appointments.

I think that covers everything. It’s a good thing I have my husband at these appointments with me because I remember half the stuff. Haha

Until next time…