Jo and I had a short, but successful trip to the NIH. I had time to make a couple of new friends in the clinic as we joked around about their upcoming un-sedated bone marrow biopsies. Ralph - you're a better man than I!!!
I had hoped to meet the coach of Olympic Swimmer, Dara Torres. He did have an appointment on the same day we were there, but our meeting was thwarted by the swine flu. When we arrived, Jo was asked if she had any cold symptoms. She said she had the sniffles. They immediately whisked us off into isolation. I guess you can't be too careful in a room full of people with somewhat compromised immune systems.
Really, there is nothing much to report. We will go back again each of the next two years and then we can cut back to every other year.
On a more interesting note, this weekend I attended a small gathering of Colorado PNH patients at Swedish Hospital. Jo was out of town teaching dance in Sacramento and she could not attend. The event was put on by a local hematologiest and cosponsored by the company that manufactures Soliris, the $480,000 drug used to treat PNH. I left my credit card at home.
I met 3 other people that have PNH and they are all using Soliris. I got to talk to two of the three for quite a while and they were both having significant difficulties caused by PNH and Soliris has been a tremendous help. One of the men has been on Soliris for 2 years and it is still working great. The other guy started to regress after being on the drug for 18 months. Unfortunately, I had to leave early before we got into the discussion of how to pay for it.
Jo's PNH does need to be monitored, but it is not disrupting her life. For now, we are happy that Soliris is available and every month that goes by means another month of real-world experience for the drug. We are excited about this "support group" and we look forward to future meetings. I learned more about PNH in those 2 hours on Saturday than I have in the past 3 years.
