Yesterday I had a monester of a clinic appointment. My first proper one since being home. Post transplant it is so important to keep up with appointments to monitor things. At the moment I'm at clinic twice a week for one reason or another. The appointments can be hard on me, I was there over 6hrs yesterday, I left feeling drained physically and mentally. My lungs have not been so good over the past few days, they have been slightly wheezy when I've over exerted and that really hasn't taken much. I seem to be running out of breath more than I was, at the moment I'm not even able to stand up for long periods of time. It is so disappointing and so scary. I saw my consultant and after catching my breath explained how my first week at home had gone. He confirmed my lungs were slightly wheezy and took the decision to up my Prednisolone and Azathioprine in the hope some of the inflammation can be knocked on the head. I left feeling deflated, worried and scared. I've only felt scared a couple of times since the transplant but at the moment I can't seem to shake the fear and it's just leaving me feeling miserable. I want so badly for things to go right. The transplant team are doing everything they can and I can't sing their praises enough. I've never had so much support from a medical team. I go back to clinic again in a few days to see if the increased doses have helped.
Sending some smiles!
4 weeks ago