|
Bob's Transplant 
IN LOVING MEMORY OF BOB BISHER
Welcome to my journal!!! On January 23, 2005, while working on my boat, I lost vision in my left eye. Meghan and I visited the local emergency room. The doctors thought that I might have a blood clot and insisted on drawing blood for the lab. To my astonishment, all my counts came back extremely low. The hospital in Stuart, Florida insisted on me being transported to a bone marrow center via ambulance. After many more blood tests and a bone marrow biopsy, I was diagnosed with PNH (Paroxysmal Nocturnal Hemoglobinuria). I was told the disease was very rare and affects only one person out of two million. What an incredible shock!! PNH affects the stem cells in my bone marrow that produce red blood cells, white blood cells, and platelets. These three ingredients are needed by your body to create “healthy” blood. A bone marrow transplant is the only known cure for PNH. I decided to temporarily move to Seattle and proceed with my transplant at Fred Hutchinson at Seattle Cancer Care Alliance. I have had many setbacks but had a bone marrow transplant on January 24, 2006!!
What can you do to help? Visit your local Blood Bank and donate blood and platelets. Go to www.marrow.org and find out how to become a bone marrow donor. I have needed many blood and platelet transfusions these past nine months. Although I have donated blood many times in the past, I did not realize what an unselfish act it was until I was sitting in the patient seat and so many people saved my life without even knowing me.
Thank you! ~Bob
Sadly, Bob passed away on July 20, 2006. Although Bob lived a short life, his legacy of friendship, laughter, and selflessness lives on in so many of us. His infectious smile and kindred spirit will be deeply missed....
Journal
Thursday, August 14, 2008 11:08 AM CDT Well, I’m back from D.C. and what a great experience it turned out to be! I visited the offices of six Congressmen from Florida and also with Senator Nelson’s Deputy Policy Advisor. Although there were over 35 states represented, I was the only advocate from Florida, so I pounded the pavement by myself. Basically, we were spreading awareness about a bill that will be presented for a vote in Congress when it reconvenes next month. The feedback I received was mostly positive. Also, (and this is really exciting!!), we met with our local Senator’s offices to spread knowledge about bone marrow failure diseases. Six senators committed to forming a commission to create a bipartisan bill with similar legislation to the proposal in Congress. So we went in with a Congressional bill and will now have a comparable proposal presented in the Senate. And Senator Nelson was one of those senators!! So I am very proud of myself for that.
I also had time for a little fun in Washington. I went out to dinner with some members of the PNH Foundation that Bob worked with and I had the chance to visit with Bob’s good friend, Dave. I had a private White House tour (Thanks, Dave!) and just walked around a lot to see all the sights. And I visited the National Spy Museum, which was fun. I think I was a private investigator in a former life. I have always wanted to be an FBI agent! My mom came to visit when I returned from D.C., so I spent some time at the beach with her. She returned to Tennessee for the school year with a nice tan, which she was very proud of!
What else is going on?!? I have been working on my household project list (the never-ending one!) and trying to get as much done around here before I go back to work. This is our rainy season, so I try to spend some time outdoors in the mornings before the afternoon showers and storms fire up. I just got back from a long weekend in Chicago, which was a blast! We basically ate and drank our way around town. My friend Sherry found out about a fire engine tour, where a retired Chicago fire fighter drives a vintage, 1960’s fire truck around the city and points out all the sights and local firehouses and tells all sorts of hilarious stories. That was so much fun! And we went to a game at Wrigley Field, which I have wanted to do since college.
Thanks to everyone who wrote letters to your local Representatives and for all the inspirational emails you sent me. I know I have said this time and again, but sometimes the only reason I can get out of bed in the morning is because I know so many people are thinking about me and sending me good thoughts. And that those well-wishers will get me through the day..... I hope everyone is having a fun summer!
Love, Meghan
Read Journal History
Links: http://www.seattlecca.org Fred Hutchinson/SCCA
http://www.pnhdisease.org PNH Support Group
http://www.floridasportsman.com Florida Sportsman
|
|
