Marrow Donation Questions Galore

[ElianaDonor]

Hi-
I've just been contacted about being a possible match for someone needing a bone marrow donor. I'll be going to a meeting with someone at the donation center soon to do further blood work and testing and talk about the process, but I'm really wanting to ask people who have been through the process many of my questions. I'm wanting an unbiased opinion; to good, the bad, and everything in between Any help would be greatly appreciated! Here's what I'm most curious about for now:
(sorry if some of these questions are dumb... this wasn't even on my radar screen 4 days ago)

-Why might I need to travel to make the donation? Can't they just take what they need, freeze it and send it to the patients doctor?
-IF I end up doing the bone marrow donation from the hips, does it hurt more or take longer to recover if you're a particularly small person? I'm really tiny... how do they know if I have enough?
-Is there a lower weight limit? I've seen lots about upper limits, but what if you're 100lbs, is that too low?
-Will there be scars?
-What kinds of things might I not be able to do for a while afterwards?
-How long does it really take before you're okay to go back to work? I stand & sit most of the day and sometimes need to walk about a block but no lifting or running or anything. I can usually sit down if I need to.
-How common is it that they might need more marrow or blood later on?
-What should I do/not do both before and after to ensure best results? Any diet or vitamin or other considerations?

Thanks so much for any help. I'm hoping to get some realistic advice and information not found in glossy brochures.
:)

[Clark]

Best wishes! I've been through preliminary testing twice, but been ruled out during further testing both times. Tragically, this is often because the recipient is no longer able to benefit from a donation. May you have a better experience.

My understanding is that peripheral blood stem cell donation via apheresis after drug induced stimulation is much more likely that the extraction of marrow from bone. Either way, making you travel is odd and you should get good answers to justify this request. Please let us know about your experience and what you learn. Thanks!

[ElianaDonor]

Thank you Clark. I'm sorry you've experienced those disappointments. I was warned that there are still MANY steps in the process to determine if I can donate for this individual, so thanks for the reminder that it's not a done deal yet... I'm probably getting ahead of myself.

The person I spoke with on the phone didn't seem to have a ton of answers, or maybe he just wanted me to get the answers from the "right" person at the information meeting, which I could understand. I'm not really sure if I have any input in the process, but I'd MUCH prefer to do a traditional marrow donation as opposed to the PBSC. I know most people would prefer the PBSC, but I'd rather not. Hopefully I'll know more next week.

[sherri]

Eliana (my daughter's name BTW),

Welcome to the group. I am a living kidney donor (7 years ago) and after that process I actually became a registered nurse and now work as a transplant coordinator for stem cell transplant. Long story but, I'll try to answer some of your questions based on my experience at our hospital. Each transplant center has their own operating procedures.

I'm sure by now you have learned that stem cell collection can be harvested from  bone marrow or through peripheral stem cell collection. At our center we almost always collect stem cells from donors through peripheral blood stem cells transplant (PBSCT). The decision is sometimes based on the recipient's disease. One method is thought to have less GVH (graft versus host disease) the other less risk of disease relapse. In any case, the recipient's physicians usually drive that decision.

For allogeneic transplants (stem cells from a matched related donor or matched unrelated donor) stem cells are almost always given fresh not thawed like in autologous stem cell transplants (patients collect their own stem cells and donate to themselves). The donor usually collects stem cells and the next day those stem cells are infused into the patient after being processed by the cell component labs. They are shipped all over the world. We often have international donors. Quite a lot to coordinate!

You can get more information from bethematch.org here is the link and also I'm sure gift of life has information if that is the organization you are working with.


http://www.bethematch.org/Transplant-Basics/How-marrow-donation-works/Steps-of-bone-marrow-or-PBSC-donation/


My husband matched someone through NMDP (National Marrow Donor Program) and did a peripheral stem cell collection about 3 years ago. We don't have information about the recipient since it was an international donation in a country that does not allow contact btw donor and recipient. His experience was positive. The filgrastim (neupogen) injections went well. He did have some bone pain or achiness which is to be expected as neupgen is a growth stimulating agent which increases stem cell production in the large bones. Tylenol is fine to use for that. Do not use ibuprofen or aspirin or other agents that may cause bleeding. He was a bit antsy on collection day because he had to lie still for several hours while he was hooked up to the apheresis machine which collects the blood/stem cells. He went to work and did his regular activities during the process and went to work the next day.

That being said, I do suggest to my donors to take it easy the next day after collection, you may feel tired. You will need someone to drive you home after the collection. Your counts usually return to normal in a couple of weeks. You can certainly be in touch with the donation center to see what their procedure is for post donation follow up.  I imagine they take good care of unrelated donors as they have dedicated centers just for that.

Don't want to overwhelm you with too much information at once.

Feel free to email me with any questions. Best of luck.

Sherri

[bone_marrow_donor]

Hi, Elianadonor
I just donated by my bone marrow to stranger who I don't know  via Be The Match Registry on Sept 3, 2014  via bone marrow surgery.   I can answer almost all of your questions.  I was on the registry for 2.5 years before I was contacted.  I registered to be on the registry b/c I had a friend who had leukemia, and her best friend got many of us on the registery to see we were a match for her.  Unfortunately, my friend had an international match who had infectious disease, and she subsequently had a cord blood transplant instead of a bone marrow transplant.  She died 6 months later.  I had never intended to be on the registry to match a stranger, and I did not know the details of bone marrow donation when I signed up,  but God had plans for me.  I was  I'm told that I was a perfect match for this stranger... 6 out of 6, and 10 out of 10 in the  HLA matches.   I am petite in size, but has excellent hemoglobin level b/c I live in high altitude. I am in excellent health.      I had to travel out of town for the donation b/c my town hospital did not offer this.  I was given 3 different city locations, and I opted for a differenct hospital than the 3 that were offered to me,  after doing some  research on the hospitals.   I was flown twice out of town in preparation for the donation procedure.  The third time I was flown, I did the bone marrow surgery.  I was given the choice of either doing the bone marrow surgery or the Peripheral stem cell collection.  After much research, and deliberation, I opt for bone marrow surgery.   I am in recovering at home now. I am also very petite... for donating to the stranger, who is much bigger than me.  I can tell you that I was pretty nervous about doing this procedure. The idea of putting myself into elective surgery,  have anticipated pain, and how it would disrupt my life in  juggling job,  kids and family life,  did not appeal to me.  But the idea of someone may die b/c I responded "no" was even more unappealing to me.   I had general anesthesia, and the collection site is from the lower back area, pelvic bone.  They made 5 puncture sites that require no stitches.  The entire procedure lasted about 1 hour.    The day of the surgery was bad for me, b/c I reacted badly with nausea and vomiting to the anethesia.  I had to stay overnight b/c my blood pressure was too  low.    The bone marrow was processed, and delivered via a courier with a ice box, and had to be flown to  the recipient within 24 hours, for the cells to be viable.  I've been home for 4 days.  The post operative pain has been very minimal, although I am tired.  I was told that I will have pain, was had been sent home with vicadin as pain med.  So far, I haven't need to take any pain med.  I think that it was a miracle!!  I had excellent care at the hospital.   I am sore, but not terrible.  I can't exercise and work out like I used to, but I will be able to get back into the routine in 3 weeks.   If you want  more details, and have more questions, please contact me.  If you want to contact me privately, please look me up.  It was quite an adventure... something that I will never forget.