Sunday, July 14, 2013


I'm without my computer, so this will be short. Dr. K. admitted me to the hospital Wednesday after my clinic visit. It was in order to expedite the tests I needed done on my lungs. I'm really lucky that she persuaded me to do it when I balked.

I'm experiencing a resurgence of lung GvHD which is manifesting as bronchial obliterans organizing pneumonia. The pulmonary specialist who scoped my lungs also did a lung wash and found 3 distinct strains of bacteria that didn't belong. They're trying to grow the cultures in order to identify the strains. This means I also have bacterial pneumonia. I cannot recommend it.

I'm getting lots of antibiotics and steroids to treat this. I'm also getting supplemental oxygen because I can't maintain a normal level of oxygen saturation. Breathing treatments started a few days ago and seem to be helping. I can't say when I'll be released from the hospital, but I can say the rounding physicians feel that the prognosis is good.

I'll feel much better when I finally manage to walk to the bathroom, 6 ft away, and back without wanting to pass out.

Sunday, July 7, 2013

When it's your lungs

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.