Bone marrow transplant - DH is a match - Can anyone talk us through it?

[hockeypuck]

DH has been having tests since September to see how good a match he is for bone marrow - they found him on the register, we don't know them.

He had a call today to say he is the one.

Has anyone been through this? What do they do? how long does it take? how much does it hurt? Is DH entitled to paid time off work for the appointments and recovery etc?

Any advice much appreciated

All I know is my former CM did this, through Anthony Nolan and I am so proud of her, I fill up every time I think of it.

Fully aware that it does not really help, but it is a wonderful thing he is doing.

I#m very proud of him - he's only been to hospital twice in his life and only then to see me when I had to the two DCs, he's never been ill in his life at all so it'll all be a bit of a shck for him

evening bump

I am sorry that I have no idea what it involves but my friends DH received a BM transplant. Unfortunately it didn't work but she is forever in debt to the person who gave him hope. Your DH is doing a wonderful and special thing and you should be very proud of him.

Sorry no advice but just to bump for you and to say what a fantastic thing for DH to be doing. Hope he gets info and has a painless experience as possible. Wow, I'm overawed.

Not the best qualified to answer, but have just found this on anthony nolan site.

What happens in a donation:

There are two ways of collecting the vital cells needed to perform a transplant. Neither involves surgical intervention, although one requires a general anaesthetic.

The first and original method is directly from the bone marrow

Bone marrow is taken from the pelvic bones using a needle and syringe. The procedure lasts on average about half an hour and is performed under general anaesthetic. This method requires the donor to spend two nights in hospital: the majority of donors normally leave hospital the following day.

You are likely to feel tired and a little soreness in the lower back : donors are usually recommended to allow themselves a five-day recuperation period. Bone marrow removed in this way takes about three weeks to regenerate.

The second method is directly from the blood stem.

PBSC (Peripheral blood stem cell collection) Harvest, the other method, is even less intrusive. The donor receives four or five daily injections of G-CSF (Granulocyte colony stimulating factor) . This boosts the production of certain white cells and encourages blood stem cells to move from the bone marrow, where they are made, into the circulating blood stream. The daily injections are usually done in the donor's home by a visiting nurse.

The harvest itself is performed as an out-patient procedure. The donor's blood is removed through a cannula placed in a vein in one arm and passed through a blood separator machine, in a process known as an apheresis machine. This separates the stem cells from the remaining blood, which is returned to the donor through a cannula in the other arm. This process requires one or sometimes two collections on successive days: each takes 4-5 hours. Flu-like symptoms and some general bone / muscle aching can be experienced during the period G-CSF is being administered, but these resolve quickly after the collection and donors can generally resume their normal routine inside 24 hours. The donor may also experience discomfort where the needle is inserted and a temporary tingling in the body from the anticoagulant used to keep the cells from clotting.

All blood stem cell donations from Anthony Nolan volunteers take place at one of the specialised centres in London. The blood stem cells collected are carried by a personal courier to the patient?s transplant centre.

And can I just say, what a fantastic thing for your husband to be doing.

I can explain some of the jargon in that post if you need, am anaesthetist, and have some idea of whats going on.

I got about half way through this process recently. I was gutted that after all the blood tests I was deemed unsuitable, I had read up massively and was steadfast in my decision to go ahead.

I would say what an amazing opprtunity to do something altruistic and unique with no agenda.

i think it can be uncomfortable, but in the great scheme - nothing.

Good luck to him x

Not been through it, but have been reading alot aboutit recently, and as a parent of a baby who may need a transplant (we should find out tomorrow if ds3 has the same illness that Anthony Nolan had) all I can say is Thank you and well done your dh. It is a truly wonderful thing that he is doing.The Anthony Nolan website has loads of info for donors.

Haven't read thread but could reccommend

Anthony Nolan Bone Marrow Trust

and Leukaemia Reearch Fund

Reputable organisations both.

Another route would be to ring your local hospital and make an appointment with their haematology nusre specialist or consultant who should be able to talk you fully through the proceedures.Good luck xxx

Oh and The lymphoma association another good one.

Well done to your dh by the way

Often peripheral blood stem cell transplants are used nowadays but under certain circumstances bone marrow donation from a matched unrelated donor is seen as the way to go.

I am sure the recipient will be truly grateful x

Thank you so much for all that information. I'll look up that information. It certainly seems that the preferable way is the blood stem cell donation, so hopefully that will be the way forward.
He is having it done through the welsh blood service, not the Anthony Nolan Trust, so at least it can be done here and won't have to travel to London.
He has an appointment in early January so we should get a lot more information then.

hockeypuck - no advice but just wanted to say well done to your dh. My friend's 8 year-old dd is currently 2 weeks post bone marrow transplant and is spending Christmas in isolation in hospital. I know how grateful we all are to their donor.

Another well done there seems to be a run of leaukaemia in my family so have a few ideas what this will mean to the family.

Good on you.

Sorry to hear that Peachy, that must be so hard for you. Nadolig Llawen to you and your family x

I've done it to an unknown recipient vai anthony Nolan BM Trust.....but back in 1994 and I'm sure things have changed since then.

My BM was taken from my hips whilst under a GA....and I was sore for a couple of days. My work were fab about it but I work for the NHS.

Things have changed, and there are newer methods in use now AFAIK. The AN website will help.

FWIW, I was treated like royalty....lots of "final" blood tests for infectious diseases, obviously and a short stay in a private room in the Royal Free. Someone from the AN Trust came to see me, and they kept in touch as well.

The bit I did find difficult was the not knowing. all I was told is that it was for a 35 year old married with 2 DCs man and this was his last chance.....how can you not?

But that bit was difficult, I used to dream about him and his family, I even gave him a "name" to make him feel more real IYKWIM. Sounds silly now, but I was quite young and its how I coped.

I was also pretty gutted when he died (unrelated directly to the transplant) - bloody hard, but something you have to understand is a real possibility. I sent an anonymous card, and got a lovely letter from the hospital in return, which I still have.

Hope all goes well, and if I can help further, please let me know x

Thank you for that IDOANX. It is good to know about the emotions he might face going through it.

Another well done for your DH- it is a fantastic thing for him to do. I have no experience of the bone marrow donation process that your DH is now undertaking but about 5 years ago I was a possible match (through national register) for an unknown recipient in Canada. i had several blood tests like your DH but then there was someone else who was a better match. I have lost a cousin and friend to leukameia in the past so I was secretly a bit disapointed not to be a match. Good luck to everyone involved.

It is brilliant your DH is doing this - leukaemia and blood diseases are horrible diseases and very gruelling in their treatments.

I was diagnosed with leukaemia in July 2007 and have responded very well to gruelling treatment. The type of leukaemia I have doesn't need a bone marrow transplant (I didn't know there were variations)! Although I have a brother who is a perfect match in case of a "rainy day". I'm just at the end of 12 months of a 2 year maintenance therapy.

Regularly visiting the heamatology clinic it's harrowing to see patients who need/have had BM transplants and are so very poorly.

BM donations are usually done under general anaesthetic with a week's recovery period. The site from where the BM is taken will be very sore (speaking from having had so many BM tests)!! Stock up on Paracetamol (or whisky).

Well done your DH.