Day +166

I had a clinic visit and a dermatology appointment today at NIH. I met with one of the team's nurse practicioners who I've met several times before but haven't worked too closely with. She took down a pretty complete account of my GVHD symptoms so far. It seems like I'll be in contact with her more as I try to manage my symptoms.

After my initial meeting with her I went to my dermatology appointment. Aside from some itching on my scalp, my skin doesn't really bother me. However, the rash is easy to spot visually, especially on my face. It is still present in all of the original spots, face, neck, shoulders, and chest, but has also spread along my arms, hands, inside of my ankles, and the groin. The dermatologist had pictures taken to document how things are now, and made a slight change to the treatment. I have been taking steroid ointments and creams of varying strengths for different parts of my body. He still wants me to use the strongest steroid for my scalp and most of my body, but switched me to a non-steroid anti-inflammatory for my groin and face. He wanted me to focus a bit more around my eyes, but was worried about having the steroids near them. So I'll continue to apply creams every day, and hopefuly there will be some progress.

After that appointment I went back to the clinic and met with the nurse practicioner and another transplant doctor who I had yet to meet. The reason I have yet to meet with her is that she works with transplants for children. She expressed what other doctors have to me recently, that the condition of my GVHD would probably warrant a systemic steroid if it weren't for the fact that I'm not in complete remission. She stated that there are plenty more options for non-systemic treatment that they could try as well. One idea that stood out is an Ultra Violet treatment for my skin. Apparently sun exposure isn't good for GVHD, but controlled UV light can really help things out. She said that there are some places that even use the UV exposure for the mouth. One of the reasons why I probably haven't heard of this before is that NIH doesn't offer it to patients. However, she said there are several local hospitals that do, including Washington Hospital Center, which is convenient for us. The UV treatment is something that she will discuss with the transplant team.

Since my main complaint right now is swallowing, the nurse practicioner thought that a consult with the GI team might be helpful. She said that GVHD can affect the esophagus by creating webbings from the esophageal tissue. This might be part of the reason why I'm having trouble swallowing, and have some of the discomfort and pain. She wanted them to perform an endoscopy, which would give them an idea if there is any GVHD involvement further down the digestive track. If there were webbing in the esophagus, it would be cleared out when the endoscope moves down the esophagus. That sounds pleasant!

One of the other issues right now is that a culture taken last Thursday shows I have a bacterial infection. I've had some congestion in the throat for about a week, and I don't know how long I've had the infection. I haven't had any fevers, so that was a warning sign that didn't pop up. This infection affects the sinuses and upper respiratory system, so it was explained to me that this might explain some of the problems in my throat. I was prescribed an antibiotic for five days to clear the infection, and that is the only major change in treatment for now. The doctors want to see how I respond on the antibiotics before any other changes are made. So hopefully the GVHD subsides a bit when this infection gets treated.