Stem Cell Donation

[Cbgds87]

Does anyone have any experience of been a stem cell donor?

I've recently found out I am a match and I am in process of arranging the medical.

The concerns I have are quite selfish and i know in the grand schemes of things are minor compared to what the donation will mean for the recipient, i am just looking for reassurance from anyone who has experience of the process.

a) Time off work - I've been told i may need overnight stay for the medical due to where my nearest centre would be, then 4 days prior to donation I will need to have injections everyday and isolate, then the 2-3 days for donation. I unfortunately don't have sufficient annual leave to cover this, what would the option be, as i wouldn't technically be sick? I am also in new job role, this would all be probation period, and I'm on Apprenticeship scheme so may impact training dates too.

b) Actual procedure - the donor co-ordinator has said donation will likely be in a London hospital over two days, as I do not live locally, I would have at least 2 night overnight stay. They encouraged to bring partner/relative along but again it would be hard for me to find someone willing to give up 3 days work and have childcare support for this. Is it manageable alone, as I'd be taking train there and back and during hospital stay, would i need support?

c) Recovery afterwards and pain from GCSF injections - how difficult it this, i have relatively physical job and i also have entered Ultra and Marathon events for September, so wouldn't want to be out of exercise action for longer than necessary.

I would talk to your work about the sick leave.

It's stretching it to describe the earlier medical check and first day as your sick leave, because you are not the one that's sick, but after the first day (when the voluntary procedure has begun) then yes it can squarely be counted as sick leave. But for altruistic, life-saving courses of action, many employers will sign it off as sick leave. Which, personally, is what I think is the right thing to do and would authorise (HR background, but quite some time ago now)

What you are doing is a wonderful thing, and I hope the admin can be sorted out to support you through it

I just wanted to thank you for registering and being matched.
As a recipient of a stem.cell donation following a leukemia diagnosis I wouldn't be here now.if it wasn't for the unselfishness of people like you.
I have also met someone who had a stem cell transplant she had MS, they said that it wouldn't reverse any of the effects that she currently had but that it would halt the progression of the disease.
I hope you get it sorted out x

My take is that @Cbgds87 is understandably trying to work out in advance how she can make the logistics work. My DH was flagged as a potential match a while back, and we had similar concerns and conversations, including whether there could be any negative impact on of the IVF retrieval we were planning (fortunately there wouldn't be, but in the end a closer match than him was found so he wasn't needed).

OP doesn't sound at all irresponsible or flippant to me. To be honest part of the charities' strategy seems to be to get as many people to sign up as possible and then hope that anyone who is selected as a match will ultimately agree to do it. Limiting the donor pool to only people who aren't concerned with the practical logistics would probably mean fewer donations.

@greenisnotserene that's out of order. OP is doing a big and generous thing for someone they don't know. They do still have their own life though, can't just get sacked from work etc!

My DM has just been put on the register and being honest, Ive only just read up on what being a donor actually means. I take my hat off to you OP, I never realised that it was such an involved process and to do that for a stranger is to be applauded. 💐

Definitely talk to work
don’t know him but lad at work story was on our internal Facebook thing about him donating they gave him paid leave

my friend is currently on treatment for blood cancer life limiting but managed
she’s been told when her current treatment is no longer effective stem cell is the next step
she’s in only in her 40’s

it’s an amazing thing to do

@greenisnotserene yes and my DH would have donated, and was quite disappointed in the end not to be selected as he felt emotionally invested, but we still had conversations about the logistics of how we'd make it work. For example he and I discussed factually how it would be easier for him to organise himself if the procedure was carried out in London rather than Sheffield, which were the two treatment centre options he was given. I really don't see how the two things (donating and having some concerns about the logistics) are mutually exclusive.

Some years ago, my partner was found to be a match for his brother, who had been diagnosed with leukaemia. I well remember the joy within our family when the match was confirmed and I am pleased to say that the transplant was successful and 15 years later, his brother is alive and enjoying life. This is what we can jointly remember about the experience:

a) Time off work
My partner wasn't due in work on the day of his donation, but says that although he would have been off on the day of the donation itself, he would have returned to work the next day. He didn't need to isolate after his injections, but clearly, you've received different advice.

As you wouldn't technically be off sick, I'd suggest talking to your employer. If they are difficult, I would ask the advice of the Donor Co-ordinator. No one should lose sight of the fact that you are potentially saving a life.

b) Actual procedure
As we live in London, my partner just went to the hospital on the day. He travelled there and back on the tube and no one accompanied him. I would imagine that they have suggested that you bring someone along as a precaution - rather like after a complex dental procedure.

c) Recovery afterwards and pain from GCSF injections
My partner didn't experience any side-effects nor any pain from the injections. He carried on with his life as normal.

The only problem that I remember is that the hospital arranged for a district nurse to visit him at home on the first day of the injections, which happened to be a Sunday (as our GP would have been closed). When the district nurse arrived, she said that she didn't know how to give the injection and arranged for him to go to a walk-in clinic. We arrived there and the doctor on duty said that he was worried about administering the injection, as he hadn't done it before. At that point, we became worried about jeopardising the transplant timetable, co called the hospital who advised him to go there for the injection. After that the injections were administered by our GP, who said that they had looked up how to do it. All went smoothly from that point.

As you have found to be a match, please, please think about the patient and their family, for whom this may be their sole chance of survival.

That's the most bizarre anecdote I've every heard @Mayim . C-gsf is a subcutaneous injection that patients inject themselves that's used extensively in cancer patients and even fertility patients. If a nurse and doctor aren't aware of how to administer a subcutaneous injection they shouldn't be practicing. Well done to your partner and glad their brother continues to do well to this day, just shows how vital these donations are.

My nephew was recently a stem cell donor, and he only had two days off work. His injections were done by a nurse who came to his home and he then travelled to the place where the donation was collected one day (it was a 3 hour drive away), did the donation the next day and came home. Back at his desk the next day.

Thanks for all the advice, its been reassuring to read, I'll discuss with my employer to get the leave sorted. I wasn't doubting continuing with the process, I'm just a generally anxious person and id rather plan any practicalities or logistical bits I can in advance.

@Mayim After the initial injection did you DH self inject the others or did someone do it for him? I was told you can do either, but not sure which would suit best.

I can’t help with all of your questions. But my work would give this as paid time off.

I’ve been taking GCSF for the last 1.5 years. I don’t experience pain from the injections. Some people do, but it’s described as an ache. You’re advised to do them in the evening so you sleep through it if you do get a bit of pain. I self administer - I’m an absolute wimp with needles but they’re really not difficult or painful.

As someone with blood cancer, Thankyou for registering. It’s looking like my current treatment might be failing which leaves me with 2 options - one of which is a donor bone marrow transplant.

Hi

I have been a stem cell donor.

My work were supportive & happy to do what I needed. I was a shift worker so it wasn’t difficult to rearrange, in the way it might be for you. However, when I was organising things the charity I donated through were willing to cover any expenses including loss of earnings.

I wasn’t local (NI to London) it was a 2 night stay, I was able to bring someone with me but it wasn’t necessary. They just kept me company & helped me find my way around & navigate the underground! I didn’t need them to look after me, I would have been fine on my own - just bored!

GCSF injections - that was uncomfortable, but quite short lived! It stung when administered & was a bit tender at the site after, but not for long. My work where fine with the nurse calling & doing them, I was able to continue my shift (care worker).
Recovery wasn’t an issue either, by the time I was on the plane home I felt completely fine. A bit tired, like getting over the end of a cold, but nothing that stopped my daily life.

I just want to say it’s a wonderful thing to do, and if I can help answer any more questions let me know.

@Cbgds87 The hospital arranged all of the injections to be administered and my partner didn't have to self-inject at all. After the first injection (which was on a Sunday), the hospital arranged for the others to be done by our GP.

@Cbgds87 Thank you for even considering donating. I can only tell it from the other side as a recipient from one of only two potential matches worldwide. What they did for me so many, many years ago gave me years. But the most important thing they did was give my loved ones many years too.

I like to think I have put these years - actually its decades - to honourable use.

I cannot tell you what it is like to donate, for I have not done so. Ignore anyone who tries to shame you into donating. It may come from a well-meaning place, but is not the right approach. Donating is a personal decision for you and you should approach it will full information.

What I can say from information given to me by donors, is that it normally a single day to give the donation, as an outpatient. They carry this goodwill for a lot longer.

She doesn’t sound flippant at all.
We all have lives , jobs dependants to consider. I looked into doing this a few months ago. After you enter your details you can see more information . I didn’t like the sound of it to be honest and decided it was not for me.
If I was undecided then your attitude would make me decide against it.

https://www.bbmr.co.uk/donating-stem-cells/
more info here

@olympicsrock I didn’t like the sound of it to be honest and decided it was not for me.

Are you able to expand please? No judgment from me, I am curious to know what was it, specifically, about your potential donation that made you decline.

No advice on the practicalities of it all, but just wanted to say what an amazing thing you are doing. I hope all goes well for you and the recipient.

I self inject GCSF for a medical condition and the injections are easy
I do have side effects but I believe mine is a much higher dose. My side effects are bone pain/achy, temperature, shivery, headache and last about 24hrs

I had a stem cell transplant using my own cells. It was a very straightforward and non-invasive procedure to harvest them. You are doing a wonderful thing and could probably be saving someone’s life so I’m sure your employer would be fine. The injections are not painful you may get some stinging and a little bruising around the injection site but that’s it.

The way you're talking I'm surprised you signed up as a donor, you seem pretty irresponsible with your excuses considering the life saving impact donating would have. I guess you've never had a family member whose life depends on a transplant, maybe one day you will and you will pray that the donor isn't someone so flippant about the whole thing.

Are you taking the absolute piss? OP has signed up to donate volunrarily and even though they risk things such as unemployment they're still willing to go ahead and are seeking advice. You cannot be serious.