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Hello from a new one

had0171 Total Reaction Points: 3
Hi Everyone, just thought after much reading of this great forum I would drop a line to say hello.

I have myleofibrosis - have had it for quite a few years now - and now we are at the end of the line regarding medication - which can only control symptoms anyway - so I will be having a SCT at the end of July.

Naturally I am rather nervous - but also very excited at the thought I might one day get to all those things I've had to park - run marathons, climb mountains - that sort of thing :-)

I look forward 'chatting' with you all over the next few weeks. months - probably years :-)

Comments

  • Dieseldrinker62Dieseldrinker62 Total Reaction Points: 254
    Hi there and welcome to the forum, I'm one of the community champions and here to support you along with the other patients. I had a transplant over 4 years ago for Leukaemia so am an old hand at this by now.

    You'll find lots of us here that have had transplants or are at various stages of transplant for a variety of reasons and with the number of us on the forum now there is likely to be someone who has experienced something you might have a concern about. Whilst we are all unique and have different reactions and issues relating to our transplants, the process is generally the same for us all so you will find lots of support that will reassure you that you are not alone and what is happening to you is often normal.

    A transplant is a big thing and no doubt probably the most worrying thing we will experience in our lives, but this forum is testament to the fact that the process is successful and that we do get back to normal lives - eventually! I say eventually because we often underestimate the length of time it takes to get back to 'normal' and that status might end up being a little less than we were before treatment so I often use the term a 'new normal' which we have to adjust to. However even with those lower capabilities it is better than the alternative!

    My best advice is to go into the process feeling positive for the outcome and whilst you know that you will feel poorly during the process, focus on getting better at the end of it and set yourself a goal. You mention park runs and mountain climbing and there's no reason why you shouldn't get back to that. At the start of my treatment I set myself a goal of climbing Snowdon a year after I was first diagnosed and I'm pleased to say I achieved that (though I couldn't walk for a week afterwards!), however that is something I'd never done before so I guess I overachieved. I've done it again since and being two years later it was a lot easier but still hard work.

    Best of luck for your treatment and for your transplant and please stay in touch and let us know how you're getting along.

    All the best,

    Steve
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