I’m so happy for you! And for the recipient!
You can get paid to donate? I thought donations were supposed to be…well…donations…
So, anyway tick, when’s the big day?
I think in Canada it is illegal to sell human tissue. It has to be a donation. I’m not even sure about the expenses thing… I would assume I’d take time off to do it.
How does the system work in the states if organisations have to pay for donations?
I worked at Fred Hutchison Cancer Research Center in the late 70’s At that time we were one of only three bone marrow tranplant centers in the country. (there others were Sloan-Kettering in NY and M.D. Anderson in TX)
Physically, one can donate again in 45 to 60 days. Back then, when we had only related donors, we had a few patients whose first transplant didn’t take and we brutalized the donor a second time.
I’m not sure how the harvesting procedure is now, but back then it was not a fun ride.
Have they explained it to you yet, nocturnal_tick? I won’t describe it in case they haven’t. I’m pretty sure the process has improved in 26 years. :eek: How the heck did I get this old?
BTW, I cared for the first ever recipient of non- related bone marrow. She did great.
Good luck! You are a hero!
Whoooaaa… lot of questions now.
I guess the multiple donation question has been answered. As for how the bone marrow is extracted, they can do the “apheresis” method like I said whereby they give you drugs for a week to boost “goodness” levels in the blood. I cannot remember what the “goodness” is though. Then after a week they attach you to a machine that basically takes all the blood out of your body, sieves the good stuff out and puts it all back in. This is simultaneously of course, they don’t just take it all out at once. 
You can get money for it? Heck, I’d be happy if I at least got paid expenses. So far I have had to pay the cost of travelling across the country. Luckily I have the best mum in the world who drove me for the compatibility check and I’ve arranged to meet up with friends during my consultation.
Here are the plans to date:
I have my consultation with the doctor on 10 December in North London, as well as a second medical examination by another doctor on the same day somewhere in Central London. (King’s Hospital I think) I plan to give the donation on 22 December. Don’t know where yet and depending on how I’m allowed to make said donation it could start a week before that. I will be asking plenty of questions on that first day which I will definitely post the answers to.
Thank you all so much for your kind words of support. It means a lot.
The parents were very generous with their thank you, she wasn’t paid for the actual donation.
They have told that, like organ donation, they keep the recipient’s details absolutely confidential. I don’t know how strictly they abide to this rule but I guess I’ll find out soon enough.
Oh go on picunurse. Give us the gory details.
Well, before they began using phoresis (that’s the machine that spins your stem cells)
The drew the marrow directly. The donor got a general anesthesia, positioned face down on the OR table. Two , sometimes three doctors, using drill/needles I think they were called cutter needles. They were about 1/4 the diameter of a soda straw. The doctors repeatedly stuck the needles into the hip bones of the donor, drawing out about 5-10ccs of liquid bone marrow. The number of sticks varied froh 50 to hundreds, The had to obtain 500 ccs of fluid for an adult recipient, less for a child. If they were able to get larger volumes with each stick the number of punctures would be fewer, but The one I watched (we were required to watch at least one, during orientation) they stuck the woman 518 times in the 1hour and 45 minute procedure. The risk wasn’t great , except the risks surrounding general anesthesia. The donors walked very slowly and bent over, we called it the donors dance. Many would have black eyes from their faces being dependant for that long. But when you compared the donors shuffle with what their recipient went through, no one saw it as much of an imposition.
nocturnal_tick, So what you will be donating is indeed the same cells that we were pulling out of our donors, but you won’t actually be give bone marrow. While I worked there, they had just established that stem cells are present in perepheral blood. They are, however, rare there.
The way the phoresis works is pretty cool. Your blood will be drawn out of one arm, pumped into a spinning drum. Since each of the components of blood have different weights per given volume. The drum is variable speed, so if they wanted your platelets, they dial in the speed that platelets would be pulled out. (That would take about 1 hour to draw off the same volume as is available in 6 units of whole blood.
Your donation will take longer, because the stem cells live, mainly in the marrow, but a few spill over into the circulation.
Its like trying to catch a one inch gold fish in a swimming pool, with an aquarium net. You shouldn’t be at all uncomfortable, but take a book.
That’s as gross as I’ll get. I tend to forget that blood, guts and gore aren’t polite dinner conversation. So I watch myself
nocturnal_tick, If you E-mail me your address, I’d like to send you a small gift, because heros don’t get enough prezzies.
If you’re involved in the ornament thread, you’d be getting an extra one. 
Its a little ani-climatic, After the donation is complete, the bag of what looks exactly like blood, Its then infused in to the recipient just like a unit of blood.
Prior to the actual donation, the recipient has to be prepared, That part is pretty scary. Their own bone marrow has to be depleted so their T-cells won’t attack the new ones. They have to have total body irradiation at a dose level that, without a successful transplant, death is guarantied.
We would give them the option of shaving their head so it wasn’t so messy falling out.
The main reason for not allowing donors and recipients to meet, is survivor’s guilt. If the outcome isn’t positive, the donor often feels at fault. I know if both families want to meet, they may be allowed to after a year.
Well, whaddya know.
I just happen to work for the National Marrow Donor Program, which is the national registry of volunteer bone marrow donors here in the United States. That’s the organization whose Web site **bup ** linked to in his post (http://www.marrow.org).
You’re a good person, nocturnal_tick. I hope your donation goes smoothly. The vast majority do – it’s a serious, but very common procedure.
The drug they will inject you with each day (5 or 6 day course) is Filgrastim, which will cause stem cells in your bone marrow to move into the blood stream. As you mention, these stem cells are filtered out during a 3-4 hour apheresis session.
Be prepared for bone pain. The most often reported side effects of Filgrastim are bone pain and fatigue. You will probably have aching bones peaking at about day 3 or 4 – bones that you never even knew you had!
But I don’t mean to scare you off! It’s uncomfortable, but the vast majority of people getting Filgrastim do fine with a little help from over-the-counter pain meds such as ibuprofen or acetaminophen. Pain levels sharply decrease (within a day or two) as soon as the Filgrastim injections stop.
Also, the more traditional route, an actual donation of bone marrow, is accomplished by the procedure described by a couple of previous posters. Donors are anesthetized and several small incisions are made in the butt above the pelvic bones. Long, hollow needles are then inserted into the incisions and are pushed through the pelvis and into the marrow cavity. Then the bone marrow is suctioned out at about a teaspoon at a time.
These days, donating peripheral blood stem cells (your procedure) is becoming more popular because the recovery time is much shorter and the potential for long-term complications is much lower. But you’ll be comforted to know that none of the 25,000 plus donors who have donated through the NMDP has ever died!
(And I’m sure that the Anthony Nolan Trust registry has a similar stellar track record. )
nocturnal_tick, am I correct in assuming that you’ve joined the London-based Anthony Nolan Trust registry? The other registry in the U.K. is the Welsh Bone Marrow Donor Registry. I guess which registry you’ve joined depends on where exactly Limbo is and how far to the left of it you are.
I think both U.K. registries follow the same general guidelines that we use here in the States. Donors don’t know the identity of their recipients, and vice versa. After a year post-transplant, if both parties agree, they can learn each others’ identities.
The need for anonymity before donating is quite essential. Can you imagine if a leukemia patient – who would otherwise die without a bone marrow transplant – found out the name and location of his/her one and only matched donor? Desperate patients and their families would then be tempted to pressure said person to donate, if the donor got “cold feet” and decided – after studying the specifics of a donation – not to donate.
But you should know the *general * characteristics of your potential donor, such as sex, age and disease. You should also know the general location of your recipient, whether he/she is in the U.K. or is in another country.
And finally, donors are not compensated, which has already been mentioned. All countries developed enough to have volunteer donor bone marrow registries also have anti-organ trafficking laws …
Spiff, on the NMDP Registry since 1997 – and also never been called (you’d think I’d have a inside track, but noooo …)
Thanks for the link!
Spiff, Maybe you could give a quick over view of how to become a donor. I’m no longer on the Registry, well, in fact, techniquely, have never been. My tissue typing was on an informal list prior to the bone marrow registry. After all, we’d just done the first non-related transplant. I left Hutch just before the HLa labeling changed, so I’d have to be re-typed. However, I think I’m too old now to donate 
Unless the age limits have been changed too. I’m 58.
Well according to this website, it’s the British Bone Marrow Registry.
I would still like to have it done the “traditional” way, simply because while it will be a longer recovery time I have the Christmas holidays to recover, whereas taking the Filgrastim will mean having to make daily trips to the centre which is a lot of pressure on my parents since I don’t have a car myself, not that I would be in any fit state to take myself from the sounds of the side effects.
First and foremost I’ll consider the patient. If the “drug” route is more beneficial to the patient I’ll do it, but if not then I would want the “traditional” route, if they still offer it. There are a lot of ifs and buts so far so I’ll let you all know what gets decided at the doctor’s office. Just gotta keep myself healthy now.
Awww shucks, I’m not a hero. I just like to do things for others, that’s all. If you want to send something send me a Get Well Soon card. That’ll cheer me up nicely.
Ah yes, I forgot about the British Bone Marrow Register, the third of the three U.K. registers. The Anthony Nolan Trust is the largest of the three and the one that our organization deals with the most.
I’ve actually been to the Royal Hospital in London, on Baker Street if I recall, to pick up bone marrow donated through the Anthony Nolan Trust and courier it to a U.S. patient.
Which donation method is better for the patient is still up in the air. There are trade offs to each choice. Peripheral blood stem cells (PBSCs) seem to engraft more quickly, so the recipient’s new immune system (courtesy of the donated stem cells) begins to operate sooner. That means that, in theory, there will be fewer infections to deal with.
However, there are some studies showing that PBSC donations may be associated with more chronic graft-versus-host disease (GVHD) and/or chronic GVHD that is more difficult to treat.
nocturnal_tick, please keep us informed as you go through this process. I don’t think I’m alone here in being curious about hearing first hand about how the process is perceived from a donor’s perspective.
And picunurse, you are not too old – in the U.S. you can still join until your 61st birthday. But we will purge your record from our donor file on your 61st birthday, so there’s very little reason for you to join at this point.
An overview of joining the NMDP Registry can be found here. Other registries have other rules and procedures, of course, but the basics of the process you’ll read about at this Web page are pretty universal.
Fair play to you, nocturnal_tick.
You posting this thread has prompted me to sign up, which I shall do as soon as I get to the UK.
Best of luck, and again, nice one.
That means a lot to me, the fact that a thread that is quite standard could produce such a valuable decision speaks volumes.
picunurse please, if you want, sign up for the register. You could be called quite quickly like I was and your joining could help someone in need. Not that I’m pressuring you at all, please take all factors into consideration.
This is a piece of advice for anyone considering donation. I went into it quite quickly (on my first blood donation to be exact) because that’s the kind of guy I am. I expect that others aren’t the same. When I was called for compatibility testing I pretty much had to re-arrange all my plans to suit it and pay all expenses for the trip (which is hefty for a student) and I was willing to do that. I have also been called across the country for the consultation and medical exam. These are things you must take into account. Giving bone marrow is a very special gift. I would hope everyone takes the opportunity to look into such an act but understand completely the fact that it doesn’t suit everyone but hope that those people can still find a way to help.
Will do.
I did not know that the Nolan Registry was the biggest. If my details are on the BBMR, do they go to all the registries in the country or should I start asking for my registry in all of said organisations? Can anyone clue me in to this?
Yes, I am on the same registry (joined at the same time as a blood donation, like you) and I asked when I joined up.
From the Anthony Nolan website :
And by the way, I’d like to say I’m impressed that you’re not only giving up your time and putting yourself through this to help someone, but encouraging other people to think about these things and possibly sign up.
A few weeks ago, I had an interview for a job at the Anthony Nolan Trust. While I was there I took the opportunity to register as a donor. No calls yet.
I misspoke here I took care of the first Non Severe Combined Immune Deficiency Syndrome unrelated. SCIDS kids were much easier to treat because they didn’t have the rejection problem.
I took care of the girl in this article
This was the list I was on.
Well done Nocturnal. I’m on the Australian bone marrow donors’ register. I’ve once been asked to give additional blood samples for the second level of screening, but the percentage match of my marrow with that of the patient was not sufficient.