Hello! I've been a Marrowforums "visitor" for over seven years now and I am sincerely grateful to all of you "members" who have unselfishly shared your stories, struggles and triumphs with bone marrow failure disease.
Today I felt strongly compelled to post my story because I wanted everyone to know that there ARE more transplant success stories than it might appear at times here on the forums.
I was initially diagnosed with MDS RCMD (5q-) seven years ago (WBC 2.1, ANC 1.0, RBC 2.1, HGB 7.8, PLT Normal) and after receiving over 100 units of PRBCs, an unsuccessful attempt with Revlimid, and taking Exjade for iron chelation, it was time to at least consider transplant. I was very lucky to not have experienced any serious infections during that time, but when my BMB (I've had 12 to date
) began showing the appearance of Monosomy 7, I knew (that for me) it was transplant time. Was this a HUGE risk and life changing decision for me?...absolutely! but I did not want to wait for things to get worse before we could hopefully go for a potential cure. The search for a suitable donor resulted in none of my 4 tested siblings being a match, and also no match at all was found domestically. In time, an International donor was found (9/10) and I am so grateful for him agreeing to donate his stem cells to help save my life. I asked my doctor (since I was in my late 50's at the time), if I would be receiving a "mini" transplant, his response was "No, not a Mini Transplant...but if a fully myeloblative transplant would be considered an "A", you will be receiving an "A-). My conditioning regime consisted of Busulfan, Fludarabine, Melphalan and GVHD prophylaxis with Prograf, ATG and MMF.
I know that everyone is different and that their transplant experience and outcome might be different as well, but I am here today 3+ years later and I'm most grateful for each and every day. The transplant experience was not easy and I went through some setbacks (Acute GVHD of the upper and lower GI system and a reactivation of the EB virus) but I took it day by day and was able to get through it with the love and support of my wonderful husband, family and friends in addition to my extraordinary medical team.
Today I am off of most of my medication, have received most of my reimmunizations, my CBC steadily remains in the normal range and I am seen by my local Hemo/Onc doctor every 2 months for bloodwork since my immune system is still a bit slow to completely recover. I'm still working on improving my leg strength but otherwise lead a mostly normal life and I will be meeting my donor in a few months which is something that I am extremely excited about! To those of you who might be considering or heading to transplant, my advise is this: don't ever give up because the process is not a "quick fix", you can do it if that is your firm belief just expect some bumps or setbacks along the way, and know that there are many of us here at Marrowforums (and yes, even behind the scenes!) that have successfully traveled the transplant path.
Again, thank you Marrowforums Members (especially you Neil) for providing support to so many of us, especially when we may have needed it the most.
God bless.
Grateful1