Thinking about it, I have a couple of other things I’d like to say. The first is to emphasize that joining a register really is very easy - in the UK if you give blood you can just mention it when you arrive at the donor centre and they can take an extra sample for the initial typing at the same time as your other samples (no extra needles).
I believe to join the Antony Nolan register you aske them to send you a pack, fill in a questionnaire (to make sure that you don’t have any health problems tht would affect the safety of you or the recipient) and take the sample tube they give you to a doctor or nurse (eg your GP’s practice nurse, no need to see the GP) to have the blood taken.
The Antony Nolan register (elsewhere stated to be the biggest register in the UK) has 360, 000 people registered on it of a population of approximately 60 million. The worldwide organistation it shares matches with has about 6 million members. That really isn’t very many at all, so if you feel you could cope with the donation proceedure (and I do understand that for many reasons many people can’t) please join!
Secondly, a relative of mine received bone marrow transplants while undergoing chemo for cancer. Sadly he died anyway, but I know his family very much appreciated the extra time and quality of life the transplants gave him as well as the improved chance that he would recover.
Thirdly, nocturnal tick, I’d always believed that the old fashioned method of donation gave you pain for much longer than the apheresis, but that the donor didn’t get much choice in method as it was to do with the medical needs of the recipient, so you’re fought my ignorance. FTR I’ve been on the register about three years but never had even
Damn, too early in the morning. I’ve been on the register about three years but never been called for anything, so far I haven’t had even an initial match, but I’m glad the potential exists, even if it may not be very convenient if it does arrive.
Also, nocturnal tick, have you tried asking if you could recieve the injections somewhere other than the hospital? It could be that if they’re fairly straightforward they could arrange for you to have them done at your local hospital or GPs surgery.
I’ve had a stressful day and about 20% of it was just trying to get my plans sorted for Friday. I had to phone for half the day to have the times and places faxed over because I didn’t recieve the letter a week ago. This is the plan according to the letter:
Counselling session with the Doctor followed by samples of my blood being collected.
Then a medical examination involving blood tests, a chest x-ray and an ECG.
Then they take even more of my blood to be returned to me after the “harvest”.
:eek: their words, not mine.
I’ll tell you how it gets on Saturday.
Well I’m back. I’ve either been squashed into trains or stuck with needles for the past 8 hours now.
So first things first…
I arrived at the Doner Centre just in time, got led into a room where a nice nurse put a big fat needle in my arm. Maybe it was because I was watching it go in but that needle looked twice as big as any other I’ve seen. After they took some samples I was given a consulation with the doctor. She basically went into great detail explaining both procedures, the logistics of both and the pros and cons. I’ve decided to have it extracted from the bone marrow rather than from the blood. This way I have the Christmas holidays to recover (they recommend a week off work afterwards). If I had taken the option of using the growth factor for blood extraction I would have had to start the injections on the day I move out of my Uni room for holidays which would have sent me into a stress fuelled coma. (Oh it’s been a stressful week)
The date was also set: December 21st. I go into hospital the night before and come out the night after. Not too bad. And a hotel room and all my expenses to date are to be payed for so I can bring along a friend, or rather my worrying mum.
After the consultation I made my way to another hospital for my medical exam. A poke and prod later I was deemed physically fit. They took some more blood, which they will have the results to next week. They told me if I don’t hear from them it’s a good thing. Then I went for my ECG (no chest x-ray though ) but they didn’t tell me what to do after that so I got lumped with finding the doctor to give him the ECG printout. Kind of a anti-climax if you ask me.
More updates, and maybe some pictures coming soon…
If anybody’s interested in donating in the US I’ll tell you guys what I’ve found out by trying to get on the damned register - I called the local Red Cross as instructed by marrow.org. The lady I spoke to said that unless you’re a minority, getting your samples drawn and tested or whatever will run you $70 unless you go as part of a drive. (Granted, that might just be here.) Many drives are private for one company or another, there dosen’t seem to be a public one I can make it to until after Christmas. She gave me the name and number of my local marrow coordinator to call, which I haven’t done yet.
In other words, it’s a bit of a pain in the ass (not just the hip ) - I’m going to do it, partly because of this thread, but it dosne’t seem to be anywhere near as smooth and easy a thing as giving blood is. Just a heads up to anybody considering doing it - I was surprised, as it seems that otherwise the Red Cross has figured out that it’s hard to get people to do something unselfish if they have to work at it. I’ll be calling my local coordinator today when I get off work.
Well I registered when I first gave blood, for free. No fuss at all. Is it that much more difficult in the US?
BTW, well done Zsofia for doing an amazing thing.
I forgot to add yesterday. I’ve got a bunch of information to the process, going into detail of both methods, the pros and cons, the logistics of each, the anonymity of the patient, the insurance etc. etc…
If you would like some of this information then by all means ask.
I’ve never given blood because until quite recently I was under the weight limit, but my mom who gives blood and platelets regularly says they don’t push the marrow thing at the blood drives but they do when she gives platelets. (Maybe because those people are already okay with pherisis?) Anyway, they never asked her if she wanted to donate, probably because she’d have been close to the cutoff date of 60 when she started giving and she’s over it now.
I’ve always wanted to sign up for the registry, but never really knew how. I think I am going to research it and do this. I feel like it’s a wonderful thing you’ve done, Noctural, I would love the opportunity to help someone in this way.
I gotta say I think it’s pretty crappy that it costs someone $70 just to get tested. That’s not a HUGE amount of money, true, but many people who would like to be on the registry can’t spare it.
Marrow.org says costs for testing may vary from place to place - $70 is what they told me at the Red Cross, although I’m not sure if I was actually talking to somebody local or not. In other words, I don’t know how universal the $70 is, but it’s definately a barrier to donating. It’s free if you go to a donor drive, sure - but I was all ready to get in my car and hit the Red Cross that day, and now I’m waiting for a drive. A lot of people might not wait. Maybe it just needs to be a more visible charity and then more people might donate to defray the costs. I mean, it’s gotta be expensive to test all the blood they get at blood drives, but it’s paid for somehow, right?
They do it because platelet donors have already been tissue typed. (Tissue typing is the lab test that costs about $70.)
Because the blood bank already has a platelet donor’s tissue typing results on file, joining the NMDP (the U.S. national registry ) is then simply a matter of getting the platelet donor’s permission and sending us the tissue typing results and other information (really only age, sex and race).
Yes, racial and ethnic minorities in the U.S. most often do not have to pay the approx. $70 to join the NMDP Registry. We have some federal dollars to pay for that. Why is this? It’s because our registry, like all the registries around the world, are predominately filled by the majority race in the country they serve.
Why is the racial and ethnic composition of a bone marrow donor registry even a concern? Because an individual’s tissue type is inherited, a patient is more likely to find a matching volunteer donor from within his or her own racial or ethnic group. It’s not unheard of for a black patient, for example, to find a matching donor who’s Asian, but such cross-racial matching is somewhat rare.
Thus, to increase the chances that a minority patient will find a match on our registry, the NMDP is doing the best it can to recruit racial and ethnic minorities.
I’m fine, honestly. Just been inactive for a while.
Umm, where to begin…
Arrived late the night before and spent a good couple hours wandering between departments trying to find where I had to go. Nice private room. Got woken up at 7.30 next morning to check my blood pressure and pulse. This gets done about every three or four hours before and after the operation from morning to night. Apparently I have a really slow heart rate (58-60 BPM). Got taken down to the operating theatre, which was really quite small and disappointing in the silly paper apron and paper underpants which are quite transparent. Then I was attached to a heart monitor and given oxygen. I thought I was going to be given GA as a gas but it was an injection. For anyone who has never had it, the feeling was freaky!
They tell you what is coming but it still surprises you. They inject you in the hand and the anaesthetic travels up your arm as this cold numb sensation, you can actually feel it move up your arm like your dipping your arm in cold water, but inside out. I wondered how long I could fight it before falling asleep, while simultaneously wondering why the ceiling was wobbling. Needless to say I didn’t finish my train of thought. They had to put a tube in my throat to help me breathe and so I woke up with a mouth as dry as a desert. There was no discernable pain in my back, just some discomfort which was mainly due to the huge dressing that covered my entire lower back. They fed me well albeit sucky dry hospital food which I couldn’t swallow at first. I did throw up which I think was a side effect of the anaesthetic but straight after I was dandy. My mouth was so dry for so long that simple conversation was difficult for longer than two minutes, not because of pain but because my lips kept sticking to my teeth. I found it quite funny. I had a friend come see me so the stay wasn’t really boring but I still had to wait until noon the next day to be discharged. The most painful part of the experience had to be changing the bandages. It was like getting my entire back waxed, all at once.
Yee-oww-chh :eek:
Just before I left they told me the transplant went well, and it was for an adult in Germany. So that was a pleasing result. As for recuperation I walked like a cowboy leaving the hospital, but I was walking. It felt bruised for a couple days but a week later and I’m totally fine. The consultant phoned me to check on me, and they’re sending me a card which is nice. I’ll get one more phone call and a blood test and then it’s all over.
I think that’s it. If there’s any other questions feel free to ask.
I knew I would forget something. My entire expenditure was just less than £200, which will be fully reimbursed, but obviously I needed the money at hand. If there is one thing to considered is the organisational skills were something less than perfect. I had to travel to places I had never been before and often things went wrong, both in planning and in “just life” stuff. It’s not catastrophic but definitely an inconvenience. It takes a lot of commitment which I was more than willing to provide. It was still a fun ride though.
) but they didn’t tell me what to do after that so I got lumped with finding the doctor to give him the ECG printout. Kind of a anti-climax if you ask me.
) - I’m going to do it, partly because of this thread, but it dosne’t seem to be anywhere near as smooth and easy a thing as giving blood is. Just a heads up to anybody considering doing it - I was surprised, as it seems that otherwise the Red Cross has figured out that it’s hard to get people to do something unselfish if they have to work at it. I’ll be calling my local coordinator today when I get off work.