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Hi everyone,
Following information from UK Government and the publication of NICE guidelines, we have updated our advice on the coronavirus for people who have received or are waiting to receive a stem cell transplant to treat their blood cancer or blood disorder. Read our coronavirus guidance here: www.anthonynolan.org/coronavirus

Introducing myself to the site

Hi there, just like to introduce myself, i was diagnosed with MDS in nov 2012 - which quickly developed into AML, luckily for me ANT found me a donor and on April 24th 2013 i had my SCT. Everything was going great for the first week, then i became unwell, compromised blood flow to liver and kidneys, ended up full of fluid and yellow, couldn't walk properly or do anything for myself as i was so full of fluid, then my spleen burst, ended up going to emergency where they drained 5 litres of blood from abdomen, then was nursed in ITU on a ventilator for 3 weeks, eventually was transferred back to transplant ward, but then ended up having a brain irratation was in a coma for 2 weeks, during this time became unwell with pneumonia and ended up in ITU again for another 2 weeks on a ventilator, anyway ended up being in hospital from April to the beginning of September - couldn't do anything for myself, had to be washed by nurses, had to have daily physio as couldn't walk, eventually i learnt to walk with a frame, then a stick and i was over the moon when i could climb a flight of stairs, that meant i could go home. Once discharged was hard as i didn't have the strength to do what i wanted to, my mum came every day to help me in the shower, felt constantly sick and totally lost my appetitie, dropped from my initial weight of 12st 10Lbs to 8st, but i was determined i was going to get stronger and fitter. In January this year everything just seemed to turn around and click into place, i got stronger, was eating more, started to put on weight and on my 1st RE-BIRTHDAY in April i had a charity event and raised £1,300 for Bright Red a north east charity for blood cancers - most of the funds go into ward 33 at freemans where i had my SCT. In June i completed a 5k fun run - although i walked - which was a massive achievement for me. Now i am as fit as ever, doing lots of walking, even bought mysel a cross trainer to keep my fitness up. I am 18 months post SCT now and when i've reached my 2yr mark i hope to hold a bigger charity event, this time for ANTHONY NOLAN and BRIGHT RED. If it wasn't for Anthony Nolan i wouldn't be here today - I would love to meet my donor, because i have got so much to thank her for - MY LIFE - now that i have been given a 2nd chance of life i want to do as much as i can for these great charities as i need to give something back, i also want to get back to the career i love so much NURSING - so just want to say to those who are waiting to have a SCT or just had a SCT, it's a long-term recovery, some people get there quicker some not, but its important to look after yourself, don't overdo it, take little baby steps, if you are unwell, not to worry its just a little blip, just keep positive cos if i can get through it anyone can ****

Comments

  • Hi Claire and welcome to the forum, your story is really interesting and pleased i'm that you are making a recovery now. You certainly have had a rough time but it's stories like yours that I think are helpful to others and offer hope for the future.
    You seem to be doing all the right things and I wish you well and hope you can resume your career soon.

    I too had MDS, diagnosed early 2012, with no obvious symptoms but because of the seriousness was told a stem cell transplant the only cure. I had my transplant in May 2012 from an unrelated donor found on the Anthony Nolan register. Lots of ups and downs following transplant including pneumonia and admission to CCU, I had a week in there and like you unable to move a muscle and then returned to the transplant unit for 3weeks recovery. Once mobile, I was discharged home. Since then I have had the usual infections which have always been dealt with.

    I'm fine now but without the same energy levels but am able to go walking twice a week, do my garden, and bits of maintenance about the house. We look after grandchildren too and get away when we can usually for a few days at a time. I was also able to retire after transplant.

    I kept in touch with my donor after transplant and actually met him just a couple of weeks ago, it was a great experience and something I was glad I did.

    I do a little voluntary work for Anthony Nolan and get a lot of pleasure from it, they are always looking for volunteers and at the moment they are looking for people to join the Patient Panel.

    I'm sure others will find your experiences interesting and I hope you keep in touch.

    Best wishes Peter

  • Hi Claire,
    Wow,what a story!
    You certainly had a roller coaster of a ride through your illness.
    So glad you made it and that you had the strength and determination to keep going,you must be destined for great things having survived all that!

    Best of luck for the future and hope the return to work happens soon ,

    Una
  • Hi Claire,

    Wow it sounds like you've been through the mill, probably more than most of us have. I'm glad you're doing well now though and well done on the fund-raising front - that's brilliant!

    All the best,

    Steve
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