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Original poster

Stem cell donation

17 replies

TinkersBells · 11/03/2021 10:31

Hello everyone. I have been contacted to say I am a potential match for someone needing a bone marrow transplant. I wondered if anyone has done this - any advice?

OP posts:

Original poster

TinkersBells · 11/03/2021 15:49

hopeful bump

OP posts:

SnoozyBoozy · 11/03/2021 15:54

No experience I'm afraid, just bumping your post again!

I'm on the register, have been for years but have never been contacted. Do you have any more information on how the process will work?

Original poster

TinkersBells · 11/03/2021 16:50

I have just had blood tests to ensure that I am the best match. Then I think it is either taken from the arm over a 5 hour period in hospital after injections tin the previous few days, or done via GA as a needle into the hip. It would be good to hear from anyone who has done it.

OP posts:

goldenshoe · 12/03/2021 12:34

I did this a couple of years ago. Nice one for signing up for this, it's an excellent thing to do.

Once they know you're a good match they will give you a medical to make sure you're suitable. I think they took around 9 vials of blood, plus a ecg and chest xray, swabs from everywhere, medical history etc. You'll be given injections each day for 5 days to stimulate stem cell growth, then on day 6 they hook you up to a machine and take blood from one arm, run it around the machine to take out the stem cells and then it goes back in to your other arm. I think it's quite rare to harvest them via your bone marrow these days but it does happen if needed.

I'm happy to answer any more specific questions if I can

Original poster

TinkersBells · 12/03/2021 20:14

Hi @goldenshoe did your bones ache? How long before you felt 100% and how many days did you have to take off work (assuming you work)?

OP posts:

Erkrie · 12/03/2021 20:17

Oh wow, I have a close relative who had a stem cell transplant. Thank you so much for doing this ♥️

GintyMcGinty · 12/03/2021 20:21

I haven't done it myself but I used to have a connection with the charity. As a result I have met many people who have donated and many people who have received transplants.

What you are doing is truly amazing. You are probably the only person in the world who can potentially save that person's life.

DaisyDreaming · 13/03/2021 00:40

I know some children who have donated to save a brother or sister. It’s a fantastic thing you’re going to do!

Original poster

TinkersBells · 13/03/2021 10:02

Thanks everyone-glad to be in the position to potentially help

OP posts:

goldenshoe · 13/03/2021 16:42

@TinkersBells

Hi *@goldenshoe* did your bones ache? How long before you felt 100% and how many days did you have to take off work (assuming you work)?

So I actually did it twice, with about 6 weeks between. The first time my bones did ache, mostly around my hips and sternum but I was a bit achy all over. I took paracetamol and was able to go about life as normal but it was noticeable.

The second time my sternum was really quite painful. If I went from a lying or sitting to a standing position I was in quite a lot of pain if I did it too fast but it would pass in a few seconds. I don't think this very common so I wouldn't worry too much about it.

I'm self employed so I'm able to be flexible about where and when I work, I didn't take time off as such but made sure to work at home.

For the rest of the day after the donation I felt a bit lightheaded but I think I went into work (using public transport to premises, not at home) the next day after each harvest, so it doesn't last long.

I have to say that the nurses were absolutely amazing, lovely people. They totally put me at ease and I actually really enjoyed spending time with them (and I am an awkward person!). If you have any worries they will go out of their way to help put your mind at rest.

goldenshoe · 13/03/2021 16:50

I should have said that I'd try and at least take a day or two before harvest off work if you can, I think they recommend taking it easy for a few days after, but I was back to normal pretty quickly. The pain from the GCSF injections did get progressively worse over a few days but it wasn't very painful at all, just an awareness that you're not quite as comfortable

BrimfulOfBaba · 18/11/2021 13:42

Hi @TinkersBells and @goldenshoe - I found this thread as I was searching around for some information as I've been contacted as a potential match, too.

OP, I hope everything went ok?

I am after some info on what the procedure was like...were you able to read a book/watch Netflix while it was happening? Were you off work for all/part of the 5 or so days?

NemoSurprise21 · 18/11/2021 13:48

That is wonderful OP, I hope it went well and it is an amazing thing to do.

My son developed severe aplastic anaemia at 3, luckily his younger sister aged 1 was a compatible donor, which saved his life.

She had a short, light GA, came round and demanded food straight away, and was discharged from her ward six hours after the bone marrow removal.

She was left with two tiny white scars which faded within a year (the bone marrow was taken from her pelvis).

My son made a full recovery, the BMT itself was just like a blood transfusion.

goldenshoe · 18/11/2021 15:27

Hi @BrimfulOfBaba hats off to you for doing this, it will mean so much to so many people

You can't move around very much at all while you're hooked up to the machine it's really only one arm/hand that you can use. Watching Netflix is easier than reading a book (kindle ok!).

The effects of the GCSF injections build up over a few days, so the first couple of days were fine and I started to ache a bit on the 3rd(ish) day. It didn't prevent me from going about my day as usual but I was more aware of my movements and my joints were a bit achey, honestly nothing awful.

In the lead up to the collection you'll need to be injected with gcsf for 5 days so you'll need time off for that. I'm self employed so was able to work around all that and see how I felt each day, if your job is physical it might be harder but if you're in an office with a nice boss who will let you take it easy you'll be fine.

goldenshoe · 18/11/2021 15:33

I say you'll be fine, but of course it's different for everyone. I haven't spoken to anyone who had extreme side effects, they were all either a little worse or a little better than me.

BrimfulOfBaba · 18/11/2021 17:08

Thank you @goldenshoe that's so helpful to know! Really hoping that I can help and that my manager is OK about it. Thank you for not only doing this yourself but helping others thinking about it!

NotMyCat · 18/11/2021 17:11

I inject GSCF weekly for other reasons and hate it but I do have a strong reaction to it! I think it's smaller doses for stem cell too
Usually back/hip pain, headache and sometimes shivery but the latter two wear off after half a day

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