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It may be worth getting a referral to an MDS centre of excellence. There are a few in the UK (I think there is a link on this site somewhere).
I’m in Kent too, and I believe the two closest are one in Southampton and Kings College Hospital
Are you needing transfusions or anything ?
Apologies for slow reply.
Karen was treated on the NHS. I believe the treatment was good, we never had to fight for drugs or anything. I remember at one point she was on a drug which was around £1500 a go. I believe she was on this for 40 or more doses and the hospital never worried about finding the resources. Patient care was first and foremost.
Hope all goes well for Bill.
Dear Billy’s dad,
Have followed his story and the heartache……
it proves this is beatable.
May I wish Billy long life.
There are a few centres of excellence here in the UK.
Karen was treated at Kings College under Prof. Ghulam Mufti.
They are a very good team of haemotolgists, Prof Mufti is prbably one of the best in Europe.
Hope all goes well with Bill,
Haven’t looked at the board for ages then see this!
I’m so sorry, none of you deserve this. I hope it’s something easily treatable.
DonAugust 14, 2006 at 12:46 am in reply to: Who has done a "mini -transplant" and can help me??! #14443
Watch out for CMV. Very important!
Stem cells are generally harvested from the blood stream (PBSC – Peripheral Blood Stem Cells). Normally the donor is given some stimulant injections to cause the marrow to overproduce so the stem cells spill out into the blood stream. They are then harvested via (I believe it’s called) apheresis. If I remember rightly, the donor is hooked up to a machine and then the blood is taken from one arm, through the machine and then replaced in the other arm. Bit like giving blood.
Bone marrow however is actually drawn from teh marrow itself. i.e. A needle into the pelvis like a bone marrow biopsy. Clearly in that instance you get whatever is in the marrow – both stem cells and partially developed cells.
There appears to be pros and cons with both, but so slight it doesn’t make that much of a difference to the recipient.
Hope this helps,
Just because you have a perfect match doesn’t mean there won’t be complications.
My fiancee had a Reduced intensity conditioning transplant. She was neutropenic for 70 days when the docs decided to go with the transplant as she had aspergillosis.
The transplany grafted well, but Karen had a CMV reactivation which moved to her lungs and ultimately took her.
She was 45.
Just wanted to give a balanced view here.
Best of luck,
Hi Patti, I think they key thing here is the lack of wbc’s. Red’s and platelets can be transfused but white’s aren’t generally. Without white cells the body will pick up all sorts of infection (most likely the patient infecting themselves with bacteria that they always carry).
That could be where the doc is coming from.
Hi Esme – you should make a point of telling the docs about this I think. It sounds like Hans is not one for moaning unless he is really ill. Best nip it in the bud now. There are fungal infections that can get everywhere.
Hi Andrew, Karen was prescribed Septrin during her transaplant as treatment for pneumonia. Ican’t remember the exact strain, but pcp springs to mind.
Karen had it IV and it really didn’t agree with her. Caused lots of nausea and so on.
Hello Amya, I can talk you through my experience of my partner having one. Sadly, we didn’t get the right outcome.
Is your dad’s transplant a mini or full blown ? Allogenic or autogenic?
There are some people on the board who have had successful transplants.
There is a lady (I’m sure she wouldn’t mind me mentioning her name for these purposes) called Ruth Cuadra who has a few web pages telling her own story. If you search on her name, you will find it.
Karen, just said a prayer for you & your family.
Try and be as strong as you can.
Margaret, I am so sorry to hear this.
May God give you have the strength and courage needed to get through this.
Take care and God bless you and your family,
Margaret, may God bless you both.
You are in my prayers,