Grateful for so many things...
 

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 :eek:) 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

Thank you for taking the time to share. I know you realize how much it helps.

It's great to hear a 3 Year success story... Congrats, and continued progress...

All the best, and may God Bless.
David

Thanks!
 

Thank you for sharing your story. As my young adult son is going through his transplant process right now, I find your experience to be very encouraging!

Thank you so much for sharing. The success stories are so inspiring. I just passed the first 100 days and am experiencing various forms of gvhd which flares up some days and is easier to deal with on others, but overall feel better each week. It is great to see your success!

Update
 

I thought I would post an update as it has been quite awhile since I first shared my story here on the forums. I am now 5.5 years post Allogeneic MUD SCT (9/10) and 9 years post original diagnosis of low risk MDS with 5q- chromosome abnormality (see my story above). Since my last posting, I have met my international donor (just the nicest person ever!) and we continue to keep in contact. I now see my transplant Doctor once a year and my local Onc/Hem every 4 months whom I saw this morning. I continue to have very stable blood counts with the only issue being low IGG levels and receive an infusion of antibodies if necessary. A year ago I was given the okay to discontinue my remaining medications (Acyclovir and Bactrim), but experienced a couple of infections (oral and upper respiratory) so was put back on them although I am currently reducing the dosage of Acyclovir and we'll see how it goes. I continue to lead a normal life for which I am extremely grateful and I want to give hope and inspiration to those of you considering or going through the transplant journey...

Sending my continued prayers and blessings to you all.

Grateful1

Hi Grateful1 - thanks for sharing your story. It brings hope to everyone seeing someone who has passed through the transplant gauntlet and thrived. I wish you continued health and happiness!
paul