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When it's your lungs

Posted Jul 07 2013 5:40pm
A lot of people believe that once you have a bone marrow transplant, your major health issues will be resolved. No more cancer means no more problems. These people are horribly misinformed.

I'm currently struggling with graft versus host disease of the lungs. Again. Things have been gradually getting worse. I've begun to feel a familiar pressure in my abdomen on the upper right side, just under my rib cage. It's similar to the feeling I had when graft versus host disease began to affect my liver.

I emailed my transplant team about my inability to breathe on Thursday. On Friday, Chris and I began playing phone tag with my various nurses and PAs. My transplant doctor was out of the country. My local oncologist was out of town. The doctor covering for him would be out of the office over the weekend.

Fortunately, my transplant doctor's PA is a champ. Long story short, I narrowly avoided being put on a daily dose of 120mg of prednisone by the doctor covering for my transplant doctor. He's never treated me and so he's not familiar with my history involving steroids. I'm hyper-sensitive. It can be a problem. My PA managed to get through to Dr. K. who will see me when she returns to clinic on Wednesday. I will have tests. Experience tells me that there will be chest x-rays and CT scans. I will probably need lung and liver biopsies. I'm not thrilled by the prospect of 2 more surgeries, but I understand that the specialists need to see what's going on in my body.

I just want to be able to breathe again. Scratch that. I want to be able to walk and talk and breathe without feeling like I've run a marathon after taking 20 steps.

I probably won't be up to blogging on Wednesday, but I will update throughout the day on twitter.
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