More Appointments

The doctors have labeled my GHVD between stages three and four, with four being the highest. Because it is still not responding to steroid treatment, we are going to attempt Extracorporeal Photopheresis (ECP) therapy in addition to the immunosuppressants. This means that I will have appointments at the VA every morning, then the Seattle Cancer Care Alliance in the afternoons, and evening appointments back at the VA.

There is little down time, but I must act fast. Each day that passes is another day that I play Russian roulette with infections or gamble that the GVHD spreads to other organs making death much more imminent.

Although the doctors will not definitively state that my prognosis is poor, their demeanor towards me has completely changed and they are "very concerned" about my situation. The head nurse recommended that I get in touch with a support group consisting of patients who are either on hospice or otherwise terminal.

On the plus side, my BK virus symptoms have decreased substantially so that I can get some sleep. But if it's not one thing, it's another. Now my GVHD has incited nerve damage such that I get shooting pain throughout my body at random times and the burning sensation throughout my skin has become very intense. I find myself either in extreme pain or taking a nap until the pain wakes me up. I'm hoping that I can soon calm down enough just to enjoy a good book or even watch a movie.