Experiences with Stem-cell/Bonemarrow Donorship?

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Posted: Tue Apr 07, 2009 10:05 am

Hi all!

I'm a medical student and at this point we're treating the human immune system as well as it's possible deficiencies. One of the possible problems is that your hemopoietic stem cells (the stem cells that grow out to form blood cells) start malfunctioning, this can lead to either the impaired production of functional red blood cells or to disfunctional white blood cells, in which case you have a severely compromised immunity...
These diseases of the stem cells can be cured by stem cell transplantations, what they effectively do is kill all your own stem cells and then inject stem cells from a donor. As the donor's HLA (google/wiki that if your interested) practically needs to be an exact match to yours matching donors are hard to find. During one of our classes the prof mentioned that you could sign up to be a donor (I originally thought that they only looked for matches in your familiy, but there appears to be a worldwide database of donor).
So I decided to look into this. In my country the statistics say that there's a 2% chance every year that you'll be called in for additional research and a 0.2% chance that you'll actually be asked to donate. But donating stem cells is something that happens under narcosis and it appears to be quite unpleasant afterwards...

I've more or less decided on signing up anyway, but I'd like to hear your experience with bonemarrow donorship first, if there's anyone here who's ever done it before...

Baiting Guru Joined: 19 Apr 2007 Posts: 3123

Semi-related, it's about donating body parts anyway Laughing

I'm an organ donor, and I am in support of making it mandatory. What use do WE have for our organs when we are dead? There could be a needy soul out there who gains from our death. It should be that you need to register NOT to have your organs harvested.

When you die, that's it. Kaput. No need for a rotting heart/liver/kidneys in you.

Posted: Tue Apr 07, 2009 10:25 am

Yes.. that's a good point and resembles my view exactly (about 1-2 hours before the opening post I signed up to donate all my organs after death. But that's after death, I really couldn't care less what happens with me after that..

The point is that bone-marrow donorship is something they do while I'm still very much alive (at that point not alive AND kicking, as they'll have me fast asleep)... Now I already donate blood, but that's minimally invasive unlike bonemarrow transplantation...

Baiting Guru Joined: 19 Mar 2007 Posts: 2628

There's two main types of bone marrow donation.
One is taking marrow from the pelvic bone under general anaesthetic, the other is rather like donating blood, just a bit more involved
see Anthony Nolan Trust

I've been on the register in the UK for years, though I believe if I was called for a donation it could go worldwide. Nearest I've been so far was a call for a second tissue typing.

See http://www.anthonynolan.org.uk/ for more details
They're always looking for more donors
Its not like you're donating an organ, your blood will regenerate and you could save a life.

Posted: Tue Apr 07, 2009 11:12 am

Quote:

hemopoietic ?

Your professor says you need to stay over after lectures and do 100 lines.

Wink

Posted: Tue Apr 07, 2009 11:16 am

I know it's not like donating an organ..

Still I rather dislike the blood-donation-like thingy because for that you'd have to use a certain growth-factor to have the stem cells migrate into your bloodstream, and that growth-factor seems to put you at a small risk for a serious abnormal growth of your spleen, which I don't really like..

Baiting Guru Joined: 19 Mar 2007 Posts: 2628

True
I read up on it quite a bit before joining the register and still reckoned it would be worthwhile
As I say I have never got as far as an actual donation but I know my daughters pal wouldn't be alive without receiving bone marrow from a stranger.

Posted: Tue Apr 07, 2009 11:38 am

I just want to add support for Craig007's post up there.

I'm on my first kidney transplant that, according to the experts, probably has only about 5 years (if I'm lucky) left and then I'll be on the list for a second.

SIGN UP! BECOME AN ORGAN DONOR! Especially if you're in an opt-in country.

Posted: Tue Apr 07, 2009 11:41 am

@ Kate.. whooops... I'll be doing those lines if I've got some time left somewhere, if not I'll have a lad do them... Could you please specify what line I should write hunderd times, I know I've deseved it.

@Nanny: I've quite decided I'll be signing up... I'll go for the needle-stuff though, I'm not too keen on that growth-factor thingy and I'm also not too keen on putting stuff back in my body that's been taken out of it first (they take away whole blood, then filter the stem cells and put the rest back...)

ETA: @Otterfan: Good luck with that kidney... Something really needs to be done about the donor-shortage... I'm ever more strongly in favor of making donorship an opt-out business...

Posted: Tue Apr 07, 2009 11:55 am

Hematopoietic stem cell transplantation.

Sorry for being a smart arse - google is everyones friend and I make enough spelling mistakes myself, so have no cause to point out someone elses.

Besides I am merely a lowly waitress at a greasy spoon cafe.

Wink

Posted: Tue Apr 07, 2009 11:57 am

^ That's only 4 words... It's a bit short for punishment-line-writing, don't you think? (Especially if I were to have a lad do it...)

Posted: Tue Apr 07, 2009 12:10 pm

^

OK yep needs to be a bit longer. mmmmm

Just overheard a convo between some lorry drivers, something about;

Quote:

Through a series of careful studies of cultured cells—often cells with mutations found in leukemia patients or cells that have been genetically altered—investigators have discovered many key growth factors and cytokines that induce progenitor cells to make different types of blood cells. These factors interact with one another in complex ways to create a system of exquisite genetic control and coordination of blood cell production.

Hope that will do.

Wink

Elite Baiter Joined: 16 Jul 2008 Posts: 1407

I joined the American Red Cross Data Base for bone marrow donation years ago in college.

I was once called in for secondary testing, as I was a potential "match". After that procedure, (they drew A LOT of blood samples) I was not a "match". I was actually a bit depressed, as I would have really liked to help someone out.

I haven't gotten any calls or letters since. I think at this point, because they have gotten such a detailed exam of my bloodwork I would only be called if I was an exact match.

Posted: Tue Apr 07, 2009 1:41 pm

@ MOP

Please forgive me I sometimes tease too much.

Embarassed

I also study and agree with you, it is very worthy cause and warrants consideration and discussion.

Posted: Tue Apr 07, 2009 1:49 pm

Cathartic Kate wrote:

I also study and agree with you

Wow.. It really is a small world. But now that I know that you study with me I'll have your RL id found out in no-time Wink

EDIT: I've decided I'll be signing up... The chance of actually being a matching donor are so slim that it's a very real possibility that I'll never have to deal with this at all... And if I am found to be a matching donor, the possibility of saving a live by making a very small sacrifice (compared to the (quality of) life you'll be giving back anyway) will probably help me overcome any doubts I may have at such a time...

Posted: Tue Apr 07, 2009 1:57 pm

<shakes head>

I AM your professor.

Wink

Posted: Tue Apr 07, 2009 5:16 pm

I took an independent study in immunology in undergrad and took the Biology GREs for shits and giggles and scored a 99 percentile. Yeah, I know I should have taken English instead. The point is that I knew a little about bone marrow transplant in 1995 when I was approached by a volunteer to register. I borrowed a calculator and figured my odds of matching 5/5 plus a few of the subs of the HLAs at three million to one. I figured the odds to be about the same as winning the lotto. I returned the calculator and was going to go on my way when I realized that to a person looking for a BMT a few million dollars was meaningless and registered anyway. In those days it meant submitting a blood draw and I was concerned about the pain and who was going to pay for the $150 for the tissue matching. The registration process moved to a needle stick and now uses four cotton swabs on the cheek.
In the spring of 2000 I was called in for confirmatory testing with lab work ups and a physical in the summer and a liter of bone marrow taken out of my iliac crest in the fall. Did it hurt? Nope, I didn't feel a thing. Why? General anesthesia. Recovery relied upon Reprob8's vitamin of choice and a lot of steak dinners. To those that say it hurts, I would suggest that they refrain from talking about something they do not know about. It scares the potential donors.

A bit on odds- When the regional director of the Red Cross asked me if I had any questions, I asked what my HLA markers were. Its useful in determining if I have any genetic predispositions for disease. We got to two and as she was scanning my records, she was scanning the recipient's. By the third one, she was in complete tears, blustering about how she had never seen such a non match in her 18 years. We matched two markers and I have a universal donor third set. That made for 3/5 or the equal to a $5.00 lotto winner. I asked the supervising surgeon what he felt the patient's odds were to live a year. He said historically 0.45. I asked that he consider the quality of the match. His eyes got really big as he compared charts and he told me it was in the low 30%. After spending over a year in hospital my recipient eventually went home to his wife, two kids and his job and is still alive. He suffers from some infections and Graft vs Host, where my goodies attack him but like Dorothy said about Toto in The Wizard of Oz, "He got away!"

There are thousands of people looking at the international registry for hope in their hopeless cases. My guy had an incurable genetic disease (Philadelphia Syndrome) probably caused by a nuclear weapon dropped on his mom. If you are white, sign up, your chances of being called in for further testing are thousands to one. Your chances of going past confirmatory testing are 69:1. If you are a person of color, your chances are even smaller, but the chances of a minority searching the registry are almost zero at this time. That's why registration is the key to possibly saving a life.

Posted: Tue Apr 07, 2009 5:29 pm

Connie L. Gus wrote:

and a liter of bone marrow taken out

Thanks.. That really sounds comforting Wink

So no real side effects/pain or other nastiness afterwards?

Posted: Tue Apr 07, 2009 5:56 pm

The amount taken out and the methods used are dependent upon the patient's needs. I had lunch with one girl that donated two tablespoons to an infant twice. Unfortunately the child eventually died but she was there. She said she went back to school the next day and the second time, she went back to work the following workday. I had a problem because I was taking "Kirkland Multivitamins with Ginko". I wrote a thesis on anticoagulation but was just as clueless as the doctors about ginko. I think I leaked out 4 liters and they had to put one back in.

To answer your question MoP, I did stop going to the gym everyday after the surgery. There are guidelines on BMI for donors. Actually there are a ton of protocols put in place to protect the donors. Since I had warning, I gave up drinking, stopped all smoking, took vitamins, got under the weight rules and was working out daily for the sake of a person I never met prior to the surgery. I now know I should have been doing this for me, my spouse, and my family.

I blame the procedure on making me old, fat, stupid and ugly. It also cost me a lot of money. When my son was in high school he wanted to do an internship at the bone marrow registry. Its a very difficult and dangerous commute so we bought a new $20,000.00 car for him. I could not live with myself if we bought a beater and he got killed in it. Same thing with an econobox. What kind of savings would that be if we had to pay for a casket. The girl saw the amazing things the boy got to do so she went there too. She used the same car but made and edited videos for them. They looked great and they should have with the three chip digital cameras and video studio we bought for her.

I bike 100 miles a week, have dropped 22 pounds since Feb 4th and am going down the Colorado River on Thursday with the spouse by canoe. Still working on the stupid and ugly.

Posted: Tue Apr 07, 2009 6:14 pm

Hmmm... You also seem to look very furry, has that got anything to do with the procedure or is there another reason for that?

Posted: Tue Apr 07, 2009 8:44 pm

@ Connie.

Quote:

my recipient eventually went home to his wife, two kids and his job and is still alive

Kisses and hugs babe - that is a wonderful and very worthy thing to have done.

Congratulations, proud of you.

Posted: Tue Apr 07, 2009 9:02 pm

I remember asking if they were going to shave me while they were preping me. I guess they've heard that one before because it didn't even get a chuckle. I remember when they injected the Versaid into a line and my remarking that my vision was undergoing a raster pattern but I was not feeling any euphoria, what cheap drugs. I was told later that I was talking with people for the next ten minutes but don't remember anything twenty seconds after the injection.

Of all the experiences in my life, donating bone marrow to someone ranks only behind getting married and having kids. Its higher than graduation from college, the first solo and the first trophy.
Thanks Kate.

Adamu's soulmate Joined: 23 Nov 2007 Posts: 337

All I can tell you is that my niece had leukemia and her life was extended by receiving a bone marrow transplant - sadly she died at less than 4 years old but the transplant gave us months we would otherwise not have had.

As family members we expected to be the most likely donors in terms of a match but that wasnt so. I know there is a great shortage of donors and particularly so in the afro caribbean community.

I also know that bone marrow transplants have a high success rate overall

Posted: Tue Apr 07, 2009 11:56 pm

^^^Sorry about your niece. Sad

Connie, If we all were like you, the world would be a better place. Wink

Adamu's soulmate Joined: 23 Nov 2007 Posts: 337

^^^^^ I very much agree

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