Has anyone done this? Any insight into the process, how much it hurt, the overall experience etc. would be very useful! I found one friend of mine has done it and she said, ‘I’m not going to lie to you, it was horrific’, so I was wondering if it’s universally horrific, or whether that was just her.
Full story: My brother has been diagnosed with aplastic anemia and the doc has suggested a bone marrow transplant. As the only sibling I’m easily the most likely (well, 25% likely) match. His doctors are ordering a blood test from my doctor which should hopefully happen this week so fingers crossed! I was thinking if I’m not a match I would like to donate some bone marrow anyway, hopefully it will find someone else who needs it.
I’d be interested to learn the answer to this too as my half-uncle was fairly recently diagnosed with aplastic anemia, he hasn’t progressed to the bone marrow transplant stage yet but it is a real possibility if his current medications don’t help. I seem to recall him telling me that the doctors told him it wasn’t very painful for the donor.
I don’t think they take donor marrow unless they have a match ready. From your wording, I inferred that you were thinking they could take it and store it. I don’t think it keeps. You’d be put on a list and if a match was found, you’d be contacted for the donation.
Being on a list is a good thing, but I’ve been on one for decades and haven’t been matched. The reason they need so many more people on the lists is that matches between non-relater people are rare. Good on you for wanting to help out.
Natch - can’t answer your question exactly, but as to your last point, bone marrow donations aren’t like blood donations - you don’t just give them whenever. What you can do is put yourself in the bone marrow registry (www.marrow.org), that way if someone else eventually needs you, they can find you. The website also has good information on the donating procedure.
Oh sorry for not being clear, I did mean once I had the test I would definitely go about putting myself on the list. I remember I thought about doing it years ago but I was well under 18 so it got put on the backburner. Thanks for the info though!
Lot of websites explain the procedure, just wondering if there is any first hand accounts of it to be had. As I said, I’ve heard it’s ouchy!
I know someone who had to have their marrow extracted for a medical test. It wasn’t for a donation but the procedure was the same. The bad news is that is was very painful. The good news is that it was quick.
I’ve seen it done many times working as a lab tech.
They have the patient on a bed with their hip exposed. They inject a local and then they press this really mean looking thing through the skin (pic here http://focosi.immunesig.org/Williams-Nicholson_needle.jpg). Think of a needle whose bore is big enough to put a drill bit through. They push this through the skin until they finally reach the bone, where it requires a pretty good lean-on to go through the bone. Then they pull out the drill bit part of it and attach the (now hollow) needle to a syringe and begin aspirating. Apparently its the aspiration part that hurts the most. It’s not uncommon for some doctors to ‘miss’ the marrow and they either call someone else in or give it another go. It does look painful but I don’t think I’d go as far as ‘horrific’.
One doctor I knew sucked so hard at it he would often roofie his pts. beforehand so they wouldn’t have to remember his suckage.
I’ve had bone marrow extracted two different ways. The first was the old fashioned way that’s been described by others. A local was injected in my hip to numb the flesh, then a drill-like needle was used to extract the marrow from my bones. This hurt like someone shoved a red hot needle down the inside of my leg. Fortunately, it was over and done with quickly as they only needed a small amount for testing.
For my transplant, they used a different method. I was given a series of shots for five days that boosted my white blood cell and t-cell count. Apparently, this also releases bone marrow cells into the bloodstream. This causes your bones to ache for a few days, but it’s nothing an Advil or two doesn’t take care of. At the end of the five days, I was hooked up to a machine for about three hours. Two IV’s were placed in my arms, and blood was siphoned out of one, ran through a centrifuge that separated the bone marrow cells, and then injected back in through the other IV. Bring a book or something else to keep yourself entertained while you lie there.
This was discussed on the local NPR station a few weeks ago. Their experts said the donation procedure is painless – it’s done under general anesthesia – but that donors can expect to feel some soreness and aches afterward.
A couple of months ago, I did a site visit to my local chapter of The Leukemia and Lymphoma Society. I specifically asked them about marrow transplants and was suprised to learn that it’s no longer done via the “painful drill-into-the-bone” process I had heard about, but is very different, and you can even join via online.
Now I understand. I came close to having to donate once. I had passed the preliminary matching, but when they did the more dteailed stuff I didn’t get called up, which was something of a relief as I had actually read what was involved in donating by then :eek: . Of course if I am ever matched I will grit my teeth and do it anyway. Bit of a no brainer if some poor sod’s life depends on it.
Natch!, this is the method my boyfriend went through when he was donating bone marrow for his mother. He’s not a doper, but would be willing to answer any questions if you’d like. PM me if you want his contact info.
However, it was a longer procedure for him than it sounds like it was for Goblinboy. I think he was hooked up to a machine for three hours for each of four days.
They were actually taking peripheral blood stem cells from your boyfriend; they work about the same as the stem cells in marrow. Blood is apheresed–the stem cells are removed & the donor gets the remainder back. Drugs are often given to stimulate stem cell production. The whole procedure is time-consuming but not really painful.
Bone marrow aspirations (for diagnosis or research) can be quite painful. Multiple bone marrow aspirations (for donation) are done under general anesthetic; soreness may follow.
Both types of cells can be frozen, but bone marrow can also be infused fresh.
Blood tests determine whether or not you are a genetic match. They will be ordered if a relative needs a transplant–and you’re willing. Or you can get typed by a registry, so patients without a related match have a chance. I’m listed–but there are plenty of matches for us palefaces. Minority (potential) donors are needed.
There are also cord blood registries. Since these cells are normally discarded, there’s little inconvenience.
Just to note the national marrow registry is sponsoring free tissue typing kits for Mother’s Day. The usual 52 dollar fee to register on their list has been paid for by a donation for the first 10,000 new registrations during the period of May 5th to May 19th. I signed up today.
Actually, I’d say that it’s more of a mild dull pain. You definitely feel something; that is, there’s definitely an unpleasant sensation pain as that big honkin’ needle goes in. There’s no pain once the needle is in place though, and the extraction itself is uneventful. I think that it can arguably be described as “pain,” though the years may have blunted my memories in this regard.
