Awaiting transplant

Please post here your experiences of MDS as a patient, carer, family or friend

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Magz1968
Posts: 9
Joined: 03 May 2013 17:05
Location: Peterhead aberdeenshire
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Awaiting transplant

Post by Magz1968 » 14 Jan 2014 20:47

Hi everyone I got digonosed with mds in april 2013 and was at my spp in glasgow on wed and been told penciled in for transplant in march and found a donor ... As you would apprciate im very anxioues about it all ima woman of 45 and hate to say it im very scared of all thats to come does anyone have stories of there transplants and how there feeling now and how they felt before transplant please xxx
[color=#404000]life has knoked me downa few time .showed me some thingsi didnt want to see one thing for sure i always get back up fighting .[/color]
samuelsmylie
Posts: 1
Joined: 13 Jan 2014 18:22
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Re: Awaiting transplant

Post by samuelsmylie » 15 Jan 2014 21:27

Hi Mags I am from Glasgow as well, and I am being admitted to Beatson on 23rd for SCT, I was just told on Monday this week that I have Hypoplastic MDS.

I was diagnosed in 2006 with Aplastic Aneamia, but with further investigation since April 2013, it has been clear that I now have MDS. So in knew all I needed to know about AA, but now I'm doing "catch up" research on MDS, as I hate not knowing.

Iv been to visit the wards and have various consultations, and to be honest, yes it is scary but you wont be admitted for transplant unless it was the utter most right thing for you!

Do you have a donor then?

I hope all goes well.

Sam
Magz1968
Posts: 9
Joined: 03 May 2013 17:05
Location: Peterhead aberdeenshire
Contact:

Re: Awaiting transplant

Post by Magz1968 » 22 Jan 2014 11:00

Hiya sam

I know it is all scary stuff .. I hope everything goes well with you and your through it all fitting. Fit x yes they have founda doner .. I know its whats needed and know its the right thing if i could just switch of the brain x have you been u well fora while sam ? I got dignoised in april 2013 but before was having b12 injections for o er a year but have felt unwell for a good few years i just put it all down to not slowing down .. But after biopsy it was all reveled ( sorry for my spelling ) x is it 23 rd of this mth your being attmited x ? The wards and everything and nurses seem really nice the beaston freinds is a beautiful place so relaxing did you vivit it when you was there xx? X
[color=#404000]life has knoked me downa few time .showed me some thingsi didnt want to see one thing for sure i always get back up fighting .[/color]
Russell
Posts: 52
Joined: 15 Apr 2010 16:56
Location: Stoke Poges, Bucks
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Re: Awaiting transplant

Post by Russell » 26 Jan 2014 17:24

Hi Magz1968,

I was diagnosed with RCMD MDS in 2009 and had 3 bone marrow transplants but am now fighting fit. I was, I will admit, terrified when I was told I needed a transplant - so I fully understand your concern. I don't believe that clinicians would recommend a BMT unless it was the best, or in my case, the only route. I had a tough time, but that was the exception not the rule. BMT's now are now almost routine and there are some excellent centers. If you ensure you stick to your 'clean' diet, stay away from potential bugs, and make sure you don't miss any meds then I'm sure your treatment will go smoothly. I won't kid anyone into thinking it won't be uncomfortable but hopefully not an ordeal. My top tips: 1) Don't read too much into info on the internet - most of it is out of date, and won't apply to your age group (the stats for your age group are not too bad at all!). 2) At the sign of ANY fever/infection get yourself off to A&E and get the Hematology Consultant in ASAP - don't take any s***! 3) Post transplant make sure you have a reliable contact to refer back to if you feel unwell - again, don't take any s***!
Sorry for the language. If you want a chat contact Sophie and I'll be only too happy.

Russell
https://www.facebook.com/groups/3Marath ... ansplants/
Age 55
RCMD 2009 at age 49
1x MUD BMT 2010
1x MUD SCT 2010
1x Haplo Transplant 2010
4 Marathons
and
4 other Half Marathons, a 10 miler and a Spartan Race!
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