I’ve been contacted by the National Bone Marrow Registry. Apparently I am a match.
Has anyone here donated? What should I expect?
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Since this is looking for personal experiences, let’s move it to IMHO (from GQ).
My husband had leukemia as a teenager, and his life was saved by a bone marrow transplant from his brother. Unfortunately not everyone has family members who are a match.
They took his brother’s bone marrow through a very minor surgical operation. I think he was under general anesthesia and it was a short procedure. They took bone marrow from his hip using a needle. Afterwards he was kinda sore and tired for a few days, but no other side effects.
This was in the early 90s. Apparently now there is a simpler method involving a blood draw from the arm, but I don’t know how often it’s used.
Basically you’re only inconvenienced for a day or two, and you may be saving someone’s life. That’s an incredible gift to give.
It doesn’t necessarily mean anything. I was contacted by them, too, and told that while I was a match, it was still possible that I wouldn’t be asked to donate, and that the patient’s doctor was still determining the best course of action. Sure enough, about a month later, they contacted me again, and told me that they wouldn’t be needing a donation after all. No reason was given: It might be that the doctor decided that some other treatment would be better, it might mean that an even better match was found, it might mean that the patient died (all of that is speculation on my part; the letter didn’t say).
The “simpler method” uses Peripheral Blood Stem Cells. Blood is taken from the donor, the needed cells are removed & the remainder returned to the donor. It’s more complex than regular blood donation–but doesn’t require general anesthetic.
The National Marrow Donor Program has plenty of info–for donors & patients. I’d check out the Potential Match PDF linked on this page.
I signed up to be a donor years ago but my Caucasian type is the most common–so, no nibbles. That is, I know a bunch about the procedure(s) & would not hesitate to donate. But they also prefer younger donors & I’m getting up there.
Yes, donors may be contacted & then told “no, thanks.” Because a better donor was found–usually a closer match. Or another treatment seemed better. Or the patient progressed.
First, you are in a unique position to help someone in need. Despite that you have the right to refuse to proceed if you so choose.
I’ve not been a donor but am generally familiar with the process having known someone who went through the process.
There are two types of bone marrow donation, peripheral or marrow.
Peripheral donation is little different than donating platlets. Minimally invasive. You are given injections for a few days before the donation to release more stem cells into your blood. Blood is withdrawn, the needed stem cells are filtered from the blood sample to be later infused into the recipient patient, and you receive back the remainder of your blood. You may have some aches and pains but risk to the donor is minimal.
Marrow donation is more involved and requires a minor surgical procedure where marrow is extracted from the pelvis. The marrow is processed and infused into the recipient patient. There are risks associated with anesthesia in the general sense, though no more risky than for other procedures. Your recovery may take more time and you may experience more pain.
Your medical costs and any needed travel costs would be taken care of for you.
I’ve known a couple relatives and others who gave marrow. The absolute worst was some pain and discomfort for a couple weeks; best was pretty much back to normal after a few days. All but one were to strangers and all said they would do it again in a minute. But like many things YMMV so consider before responding.
I did the stem cell donor version a few years ago when my brother had leukemia.
A few weeks before the procedure I went to the hospital for an evaluation and orientation session. They asked a lot of questions about my medical history and general health and drew 13 vials of blood for a battery of tests.
There are separate medical teams for the recipient and the donor to prevent the recipient’s doctor from pressuring potential donors. A doctor on the donor assessment team asked why I was donating and I said “I can’t imagine not doing it.” That satisfied her. It seems many people are unwilling to donate for reasons beyond my comprehension.
About a week before the procedure they sent me five syringes containing a drug that increases the supply of stem cells. I was too queasy to inject myself so my brother’s wife came over each morning for five days and injected the stuff into my belly. After a couple of days I began to feel just “a bit off” and was feeling kind of cranky; according to the nurse that is considered a good sign that the drug is working as expected.
On the day of the procedure I went to the hospital. They decided the veins in my arms were too small to insert the large bore needles and they inserted a tube down a vein on my chest, near my neck. I was taken to a ward with about 20 beds occupied by other donors. Each bed had an attending nurse who operated the machine. They hooked up two tubes to the device in my neck; the blood is drawn out one tube, cycled through the machine, and pumped back in through the other tube. People with larger veins in their arms had a tube in each arm.
I spent about three hours hooked up to the machine and the “bit off” feeling and crankiness left within an hour or so. They left the device in my neck overnight just in case they decided they would need more stem cells after the stuff was processed, but it turned out they had plenty and a nurse pulled the tube out the next morning. That was the end of the process for me – no after effects.
There was no cost to me.
My brother is doing fine; back from the verge of death. A couple of the people who were in the hospital at the same he was did not find donors and did not recover.
Turble, do you mind a few questions?
Did you have the option to have it done at a doctor’s office? If I match (which they told me is unlikely because I have a really rare HLA), I’m not sure how I’d handle this part of it. I don’t think I could give myself the injection, and normally I’d of turned to my mom to, but she’s gone now…
This is nice to hear considering the description I’ve read said you feel like you get the flu. Were you able to work, or did you take that week off?
Who picked the hospital? Did you get to go one near you, or did you have to go to someone else’s choice?
You can have anybody do the injection; the standard plan is to do it yourself – but I just couldn’t. I suspect you can identify with that. I assume a doctor’s office would charge you … and when I think about it, I seriously doubt that a doctor would inject a substance in a syringe that you provide … so you just gotta ask around and find somebody who isn’t too squeamish. My sister-in-law wasn’t thrilled with the idea but she was very highly motivated. It was a very small needle and not painful at all; just pinch the belly fat and jab.
Flu-like would be a good description, but a very low grade flu … just a bit off and somewhat cranky for me. I’m retired and still went about my normal routine; bike rides, lawn work, etc. I felt better within an hour of the beginning of the procedure when some of the excess cells were removed.
My brother went through several rounds of chemo at a local hospital but they were unsuccessful. The transplant took place at the Perelman Center in Philadelphia, about an hour drive for me. I think it would probably be necessary to go to a specialized hospital where they have the machines to obtain the stem cells – the nurses who operate the machines are very highly trained and specialized with a long list of degrees and letters after their name. No idea whether one hospital can take the donation and another do the transplant. They did have rooms available for out of town donors to stay at some local place but I didn’t use that; I just drove.
Cell collection, whether bone marrow or blood cells, must be done at a hospital that has the equipment & expertise to process the cells. Usually they will be cryopreserved, rather than infused fresh.
The cells will be shipped to the hospital where the transplant will occur. Which is also a hospital with a stem cell transplant program. Unrelated donors *may *meet the recipient after a year has passed. Not every transplant is a success.)
(Hemapoietic stem cells can also be extracted from placentas & umbilical cords–formerly discarded byproducts of childbirth. But if you’ve been born, it’s to late for this kind of donation!)