Bone Marrow Match

[kalenakai]

Sorry if this isn't in the appropriate forum, but I post here the most anyway. I just received a phone call this morning from one of my relatives, stating that I am a possible match for a bone marrow transplant for a young girl with leukemia at Stanford. Wow, I'm just beside myself, there are so many things running thru my head. I can help save someone's life. I remember typing my blood and filling out a short questionnaire maybe 4-5 years ago, and to hear back from them now, at 6:30am no less, is... wow. I'm gonna call back the number I was given and get more details...

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[indo]

They're going to stick a pipe-sized needle into your hip!!

 

[AxlxA]

This can save the girl. I would do it.

 

[indo]

she could get aids...i wouldn't do it.

 

[titoincali]

Sorry if this isn't in the appropriate forum, but I post here the most anyway. I just received a phone call this morning from one of my relatives, stating that I am a possible match for a bone marrow transplant for a young girl with leukemia at Stanford. Wow, I'm just beside myself, there are so many things running thru my head. I can help save someone's life. I remember typing my blood and filling out a short questionnaire maybe 4-5 years ago, and to hear back from them now, at 6:30am no less, is... wow. I'm gonna call back the number I was given and get more details...

That happened to me once also. I went through further testing but then it turned out that the possible donor recipient was too ill to go through the process. I actually felt sad that I wouldn't be able to help in the end.

Let us know what happens!

 

[kalenakai]

indo, thanks for the "encouraging" words. and to everyone else, thanks for words of advice.

so i called back the number to the stanford bone marrow registry and got more details about the process. like indo mentioned, there are 2 ways of donating: thru that long needle in your upper pelvic bone, and the other thru a blood filter/transfusion. but before this proceeds any further, the patient will need to undergo further testing, and i will need to complete another high-resolution testing. nothing's finalized yet, but i really want to help this girl.

i'll keep you posted.

 

[indo]

Good luck to you and her!

 

[DrMike24]

she could get aids...i wouldn't do it.

???

 

[mustangsally65]

They're going to stick a pipe-sized needle into your hip!!

Aw come on. That's no big deal. If your best friend needed a transplant and you were the only match, I bet you would do it too.

I've always wanted to join the registry and become a marrow donor, but I really don't know how to go about it, or what it entails. How much time do you miss from work/ school to have the procedure, and if you're in New York and there is a match in California, do you have to pay for the transportation yourself?

It's a great offer, though. Are there any restrictions (like in giving blood) that keep you from becoming a donor? I need to do some research.

 

[Anastasis]

I would love to do it too. I know the fact that I lived in the UK limits giving blood but I wonder if it has the same consequences for bone marrow donation. I'm sure it does. Sucks so much! I don't even eat beef!

 

[tigress]

I've always wanted to join the registry and become a marrow donor, but I really don't know how to go about it, or what it entails. How much time do you miss from work/ school to have the procedure, and if you're in New York and there is a match in California, do you have to pay for the transportation yourself?

It's a great offer, though. Are there any restrictions (like in giving blood) that keep you from becoming a donor? I need to do some research.

There are often bone marrow drives going on in various places. I actually helped run a bunch in New York when I was in college. Actually signing up to be on the registry is really easy: you just go to a drive, provide either a blood sample or a buccal swab, and sign up. It's really rare to actually get a call to do further testing to match for somebody. If you do, everything is paid for. If you get the bone marrow taken from your hip, the recovery can be a few days. More and more, though, they are filtering stem cells from your blood, which just means you're hooked up to a machine filtering your blood for a bunch of hours.

As far as restrictions, there are some. I can't be on the registry, for example, because I have a history of rheumatoid arthritis. Any autoimmune condition will keep you from donating. A history of cancer will as well. I don't know all of the restrictions, but they aren't too bad.

My husband got a call a few months ago that he was a preliminary match, but he never heard back from them. It was pretty exciting when we thought he might help somebody out.

edit: I remembered my husband said that the person who called said that if you get the blood filter method, they give you a medication to make more stem cells go into your blood, and that medicine can make you feel really tired and achy. So that's another side effect. And I don't know about a weight limit.

 

[jebus]

she could get aids...i wouldn't do it.

Wow, I hope you're being facetious. That's a silly reason.
When my brother needed a kidney transplant this spring I got tested. I would have done it but I have hypertension and nary a hospital in the country will take a kidney from someone with hypertension. Oh, and when my brother's first transplant from my father failed, some 15 years ago, my dad was bed-ridden with depression for months and that didn't deter me. Thankfully his father-in-law donated one during the spring and my brother is back to training in championship cockfights. Er, I mean embryonic stem cell research.
It's easy for me to say "Do it! Donate the marrow!", but ultimately it comes down to love.

 

[gluon999]

I agree with the hi-res testing part. I work at a BM lab and we get a few of these cases every week.

For those who want to join BM registeries, google Dana Farber or Caitlin Raymond. These are the two major ones that pay for BM typing, which is quite expensive indeed.

 

[gonadotropins]

http://www.dana-farber.org/how/donatebone/

 

[MoosePilot]

A friend of mine donated bone marrow just about a year or two years ago (I know he's coming up on a milestone, because he can contact the recipient after a year or two, whichever he's approaching). He had some complications, which included his hair falling out in clumps, but he sounds like he would do it again.

Me, I'm not sure I could do that for a total stranger. I don't want to raise someone's hopes and then not go through with it, so I won't even get typed. It's a pretty altruistic thing to do. You're a better person than I.

 

[shivalrous]

A friend of mine donated bone marrow just about a year or two years ago (I know he's coming up on a milestone, because he can contact the recipient after a year or two, whichever he's approaching). He had some complications, which included his hair falling out in clumps, but he sounds like he would do it again.

Me, I'm not sure I could do that for a total stranger. I don't want to raise someone's hopes and then not go through with it, so I won't even get typed. It's a pretty altruistic thing to do. You're a better person than I.

Your friend is a good soul.

 

[DrMom]

Any autoimmune condition will keep you from donating.

I've not heard that one so I went looking on the national marrow donor program website. Now they say that they aren't listing all of the guidelines, but I'd think that autoimmune conditions would be a biggie.

Can you give me a link to where you've gotten that info? I'm on the national registry & I have a confirmed autoimmune disorder (and the likelihood of 2 others that I'm not investigating further).

http://www.marrow.org/HELP/marrow_eligibility_guidelines.html

Eligibility Guidelines
Age:
All donors must be between the ages of 18-60 and in good health.


AIDS:
If you have or are at risk for HIV (AIDS), you cannot become a marrow donor.


Asthma:
Serious asthma (poorly controlled, requiring hospitalization, etc) is not acceptable.


Back problems:
Back problems (sprains, strains and aches) are common and may not interfere with a marrow donation. Serious back problems, particularly those requiring surgery, may be a cause for deferral. If you have significant back problems, consult your donor center.


Blood pressure:
Elevated blood pressure (hypertension) is acceptable if controlled by medication.


Cancer:
Cured local skin cancer (only simple basal cell or squamous cell) is acceptable. Cervical cancer in situ is acceptable. All other forms of cancer are unacceptable.


Diabetes:
Medication-dependent diabetes is not acceptable. Diabetes controlled by diet is acceptable.


Epilepsy:
More than one seizure in the past year or multiple seizures are not acceptable. Epilepsy controlled with medication, when there has been no more than one seizure in the past year, is acceptable.


Heart disease:
Prior heart attack, bypass surgery or other heart disease is not acceptable. Mitral valve prolapse that does not require medication or restrictions is acceptable.

Irregular heartbeat not requiring medication is acceptable.


Hepatitis:
Hepatitis B surface antigen is not acceptable. Hepatitis C antibody is not acceptable. Any other hepatitis history must be evaluated early in the actual search process. Hepatitis vaccine is acceptable.


Lyme disease:
Asymptomatic Lyme disease is acceptable if the donor has been treated successfully with antibiotics. Chronic Lyme disease is unacceptable.


Malaria:
Malaria more than three years ago is acceptable. If the volunteer finished a full course of antimalarial drugs more than six months ago, he or she is acceptable.


Obesity:
Body Mass Index is used to evaluate weight. Donors may be deferred if obesity presents donation risk. See the Donor Weight Guidelines for more information.


Organ or tissue transplant:
Heart, lung, kidney, bone or other organ or tissue transplant recipients are deferred.


Pregnancy:
Marrow cannot be collected at any time during pregnancy. Women who are pregnant are temporarily deferred.


Sexually transmitted diseases:
Any history of sexually transmitted diseases must be evaluated early in the actual search process.


Tuberculosis:
Active pulmonary tuberculosis within the last two years is not acceptable.


Immunizations:
Immunizations are acceptable, excluding investigational vaccines. Some immunizations require a waiting period before joining the Registry.

 

[tree2005]

wow. reading about other ppl's interviews/secondaries were stressing me out until i got to this thread.

as a cancer survivor, i received an autologous bone marrow transplant (basically, a transplant with my own stem cells). even tho it's suppose to be easier, it was still a tremendous challenge. i was fortunate that i could use my own bone marrow. i cannot imagine how it would feel to be waiting for a donor, waiting for someone who could give you a chance at life.

it may be too altruistic for some to be willing to be a donor, because it is a natural tendency for all of us to focus on our own lives. what we need, what we want, where we want to be, what med schools we want to get into. however, i believe life is more than all that. sometimes it's about what we can offer others. if you are able to save someone else's life, isn't it worth the try despite the slight discomfort that you may experience? after all, isn't the gratification of being able to change someone's life one of the main driving forces for us med school applicants here (at least i hope so)?

anyways, just my thoughts.

 

[Avenue Q]

That's really exciting kalenakai! Unfortunately, the initial screen is less extensive than the next phase, so there is a good chance that you may not actually match, but hopefully you will! It is so unlikely to get called, it is amazing that you were.

Bone marrow/Stem cell transplants are some of the most anticlimatic proceedures and simultaniously horrific experiences. If you have ever seen a transplant, it is so straight forward and simple and dull - it looks just like a blood transfusion, and the donor generally experiences very little pain or discomfort. But other than the transplant itself, they are a hellish experience for the patient, from high dose chemo and radiaton, to isolation and long term hospitalization, to graft verses host disease (rejection is the opposite than other transplants since it is the immune system being transplanted), and dangerous infections.

For the donor, they experience nothing remotely close to the receipient - in fact, their experience is similar to the "check-up" bone marrow biopsies reciepients get months and years after the transplant. it is extremely minor, and the outcome is potentially saving a life.


Just to address some things:

They're going to stick a pipe-sized needle into your hip!!

Yes, the needle is big relative to one for a blood draw, but you are either heavily sedated or under. It is done as an outpatient proceedure, and the pain afterwards is notthat bad, normally like a deep ache. Recovery is quick, most often getting over the anastetic is worse (someone I know who was a donor said getting her wisdom teeth out was a far worse recovery than donating).

like indo mentioned, there are 2 ways of donating: thru that long needle in your upper pelvic bone, and the other thru a blood filter/transfusion

The second method (pheripheral stem cell donation/transplant) is becoming increasingly popular. Like Tigress said, they do premedicate, and stem cells are collected similarly to platelets.

if you're in New York and there is a match in California, do you have to pay for the transportation yourself?

the marrow travels, not you.


Here is the website of the national marrow donor program:
http://www.marrow.org/

 

[Flopotomist]

In 2002, I was notified that I matched to be a donor. I didn't even realize that years earlier while in the Army I had consented to be typed. The giant moral dilemma for me occured when they asked if I was gay. This automatically would exclude me from being possibly the only donor, even though I did not participate in any high-risk behavior. I did not struggle too long before realizing that the greater good would be for me to lie, and donate. unfortunately, the recipient died before I could donate though.

 

[kalenakai]

In 2002, I was notified that I matched to be a donor. I didn't even realize that years earlier while in the Army I had consented to be typed. The giant moral dilemma for me occured when they asked if I was gay. This automatically would exclude me from being possibly the only donor, even though I did not participate in any high-risk behavior. I did not struggle too long before realizing that the greater good would be for me to lie, and donate. unfortunately, the recipient died before I could donate though.

I think I'm in the same boat as you, Flop. Things have certainly changed since 2000.

Anyway, the lady was supposed to call me back at noon to conduct the health history interview, but she never did. I worried that I won't get past the first screen and that the child will have one less possible match for a donor. Don't get me wrong, I really don't mind the donating procedures, like the blood-making boost or the large needles... my heart really goes out to the recipient during all of her pre- and post-ops. I guess we'll see when the registry calls back.

 

[tigress]

I've not heard that one so I went looking on the national marrow donor program website. Now they say that they aren't listing all of the guidelines, but I'd think that autoimmune conditions would be a biggie.

Can you give me a link to where you've gotten that info? I'm on the national registry & I have a confirmed autoimmune disorder (and the likelihood of 2 others that I'm not investigating further).

http://www.marrow.org/HELP/marrow_eligibility_guidelines.html

Well I didn't actually read that anywhere. When I was volunteering in bone marrow drives in Manhattan I naturally wanted to be on the registry. I was told by numerous people in charge at the drives themselves that I could not join due to my autoimmune condition. They could very well have been wrong. It would be great if they were, because I would love to be on the registry. This also might have been based on the medications I was taking at the time, although that wasn't the impression I got.

I just called the registry but I had to leave a message. We'll see if they call back

edit: They called back and said that I cannot be on the registry due to my autoimmune condition (rheumatoid arthritis).

 

[Anastasis]

edit: They called back and said that I cannot be on the registry due to my autoimmune condition (rheumatoid arthritis).

I'm sorry But you are a good person for trying!

 

[kalenakai]

I'm sorry But you are a good person for trying!

Ditto that!

 

[mustangsally65]

I'm going to have to sign up for this bone marrow registry. Thanks for starting this thread, and for reminding me that this exists and that I need to look into it.