Bone Marrow Transplant Advice

[PJ1972]

Hi everyone i am new to this forum, i am due to have a unrealeted bone marrow transplant at Kings college hospital in London.
I have had AA for 21 years , 5 lots of ATG, Campath and every other treatment for this illness. Is there anyone else due to have a bone marrow transplant or have had one recently. I am very nervous and would like to know other peoples experience and advice please.
I have had lots of different treatments so im also happy to lend a ear.. Take care all .... Paul

[Neil Cuadra]

Hi Paul.

Wow, 21 years with AA. As a long-term AA survivor you might want to read Andrea Pecor's story. She's had AA for 30 years now.

Please look around the forums for the experiences of others who have had (or are about to have) transplants. The thread by squirrellypoo has been an especially well-documented transplant experience.

[PJ1972]

Hi Neil , thanks will check them both out .....

[cheri]

Hello
There is a wonderful blog about a young father going thru the treatment from start to date....called tom's transplant journal...check it out at:
www.tomstransplantjournal.wordpress.com
It will give you the first person account of someone with AA who chose the transplant option. Best to you!

[squirrellypoo]

Hi Paul.

I saw your other posts but I'll answer them here to make this more "your thread" (everybody needs their own thread IMHO! ).

It's so nice to have our fourth (as far as I know) Londoner here! I had my transplant for AA/hypo-MDS at King's last summer, and I cannot recommend them highly enough. Profs Marsh and Mufti (she's AA, he's MDS) are spectacular, the outpatient client, DMU (the dedicated BMT ward) and Davidson (the specialist haematology ward) are utterly fantastic. My whole experience has been nothing short of world class (except the food. Ugh, selling off the NHS catering to private companies was the worst policy change ever). Oh, and one thing I should've done immediately is ask HOP about getting free prescriptions - you're eligible now, and the meds prices REALLY ad up fast, even at £7 each (my first post-transplant pharmacy run was well over £100!). And they've got benefits advisors there, too, which you need to sort out before you go in, because you'll be off work for at least 6 months (seriously!).

Have you got any news on a possible donor or timeline yet? And have you met with Cyril or Janet? They're the pre-transplant nurse specialists at King's and they're so lovely (as is Michelle, the post-transplant nurse specialist). I know so many of the Kings haematology nurses and health care assistants by name, but they all rotate between HOP, Davidson, DMU, and the Chemo unit so I never know where they'll be at any given month.

And where do you live in London? I only ask because we had to sort out the travel logistics post-transplant and it meant we had to go and buy a car, because I wasn't allowed on public transport for a few months afterwards, and cabs weren't advised, either, because you never know what illness the passengers before you had. So my husband (then fiance) had to drive me back and forth to Kings a LOT, which was hard on his work schedule, too. So if you're not close by, you'll want to do some thinking about transport or if you should stay somewhere nearby once you're discharged (HOP have info on cut-price accommodation nearby for patients).

The only other thing that I can think of to tell you right now is silly - the DMU has really terrible mobile reception for some reason (enough to send and receive texts, but calls were pointless) but the paid-for wifi is fantastic (around £12 for a month). So emails and skype were much better ways for my family to keep in touch.

If you've got any questions at all, feel free to ask!

melissa

[PJ1972]

Hi Melissa thanks for your advise and reply.
I am due to see Prof Marsh tommorrow Wed 3rd Nov , i am sure i will find out more then. My donor is coming from the US and thats all i know, but again may get some dates tommorrow. I did see the ward last time i was at Kings , both units. Also met some very nice nurses but cannot remember there names. My god 6 months off work, really that long?? I know you have to be carefull post 100 days and was thinking 4 months i guess. Anyway what will be will be , im so worried about GVHD , infact im worring about everything ha ha .... When you have had this illness for so long you know everything about it, maybe not a good idea to know really, but im one of them people who look up everything there is to know..
Its really nice to hear from someone that has had an unrelated donor at Kings and is doing so well. I have read your whole blog and thought it was fantastic , really gave me encouragement and feel more positive because of you.. Anyway i will post on hear when i have more news. Take care Paul