Living Donors Online Message Board
Living Donation Discussion and News => Living Donation Forum => Topic started by: Aims43 on February 06, 2014, 10:10:54 AM
-
Hi everyone! I am new to the forum and I'm a potential match for someone in need of a bone marrow transplant.
I registered with the bone marrow registry this past summer, and in December I received a call saying I was potential match. Since then I have undergone blood work and additional testing to determine the full extent of my compatibility with the recipient.
Presently I am still waiting to hear back from my case manager (I will hear back by March 1st regardless of whether I am selected as the donor or not), and I was just wondering if any other donors can give me some insight into the process and what to expect if I am selected. I've tried to research online in addition to thoroughly going through all the information that the registry had provided me with, but I'd also like to hear from people who have first hand experience with this.
I'm interested in not only learning about others experiences with the donation process, but also the work up process that occurs between the time you are selected as the donor and the actual donation.
Thanks so much! Any and all insight is greatly appreciated!
-
Best wishes! I've been where you are twice, a preliminary match. Further testing ruled me out both times. More often I've been a match as a platelet donor. Twice to adults at MGH and the Brigham, twice to kids at Children's in Boston, twice to kids in NYC, and once to a kid in Houston. The hardest part of learning you're a match in these cases is that when you're told you're no longer a match, you don't know why. Did the antibodies change? Did the patient get better? Did the patient die? Was a better match found? All possibilities. Take care.
-
Aims43,
So nice to hear from a potential bone marrow/stem cell donor. I have been active on this forum as a living kidney donor (11/2007). After this life changing experience , I decided to change careers and become a registered nurse (I was previously in a health care field) with the goal of becoming a transplant nurse coordinator. I just assumed I would concentrate on solid organ transplant, but after graduating in May with my Masters in Science from the University of Maryland School of Nursing, Clinical Nurse Leader program, I had the unusual opportunity to be offered a position as a transplant nurse coordinator for stem cell/bone marrow transplant. I am learning an enormous amount about oncology nursing and about the donation process as well.I am beginning to work with the National Marrow Donor Program (NMDP) to help match unrelated donors for our patients.
I can tell you what it is like on the recipient end and maybe this will help clarify the timing process for you. The recipient's transplant coordinator submits the recipient's HLA typing into the NMDP registry. Hopefully a number of possible matches come up. We then evaluate each potential match and the degree of compatibility. We look at the age of the potential donor, blood type and sex. Young males are preferred because they tend to make more stem cells. If a potential donor is identified we request confirmatory typing. This does more intricate typing to see how well the HLA's match. It is sort of like peeling an onion with layers. The initial HLA is just the outer layer and we want to see what is behind the different antigens at the allele level.
In the meantime, the recipient is being treated for their cancer. Most often we have patients who have certain types of leukemias and lymphomas. The best time to do a transplant is when the disease is in a remission or inactive. If there is active disease it is not safe to undergo a transplant at this time because the chance of the cancer returning is too high and together with the risk of GVH (graft versus host) disease it yields a poor outcome. So very often on the donor side you may have done all the testing and then your coordinator says, its on hold or cancelled. This is either because the patient is being treated because the cancer has progressed, the patient passed away and the transplant is cancelled or something came up in the diagnostic testing process that made the patient ineligible like poor cardiac function, poor lung capacity, kidney disease. Recipients need to undergo a whole bunch of diagnostic tests to make sure their body can handle the high dose chemotherapy they will be getting that wipes out their blood marrow, as well as the cancer. This is why they need the transplant; to salvage their bone marrow when it is destroyed by the chemo.
And just like you, we wonder on our end when we get responses to our donor requests like"unavailable". Does this mean they decided not to donate, perhaps they are deployed in the military, pregnant, change in their health, or something else. We protect the privacy on both ends, donor and recipient.
My husband donated peripheral stem cells 2 years ago through the NMDP. He matched once before and then go the call that the patient passed away. Then he matched someone else and was called a second time. He donated to someone in another country whose laws prohibit any contact ever. So we will never know what happened. In that case it is always nice to imagine that things did work out and the recipient did well.
If you want information about bone marrow harvest versus peripheral stem cells harvest feel free to ask. At our center we usually do peripheral stem cell harvest from our related donors, most often siblings. For unrelated it is often bone marrow harvest. Here is a link to UMMC Greenebaum Cancer Center
http://www.umgcc.org/blood_marrow_program/allogeneic_transplant.htm
Hope this helps. Wish you the best of luck on your bone marrow/stem cell donation journey. Keep us posted.
Sherri
-
Welcome to the forum, keep us posted :)
-
We have a few bone marrow stories in the "Experiences" section of the LDO web site. Be sure to check those out. Also, we have Living Donor Buddies who are marrow donors. Feel free to request a buddy.
We appreciate your sharing your experience as you go through the process. Thanks!