Introduction
Hi my name is Ray (64 years old)
about 18 months ago I was diagnosed with Eosinophilic Leukaemia and mastocytosis,which meant I needed a stem cell transplant.This was being managed with Hydoxycarbmide and steroids and blood thinners which we were hoping would keep me going until the transplant in the new year but unfortunately at the end of October I suffered a heart attack and stroke.Once I was stabilised my next aspirate showed my leukaemia had progressed to AML so I was given some strong chemo called Flag treatment and unfortunately I ended up in ICU with a type of pneumonia.I got of ICU just before Christmas and was sent home intent on trying to get fit enough to be considered for transplant, my elder brother had recently been confirmed a positive match.After a lot of training/exercise I was given my brothers stem cells 0n the 26 th march.This has been a rollercoaster journey for me and my family with lots of dark moments along the way.I am now trying to find myself again which is proving quite hard especially in regard to my physical ability.
Before my diagnosis I was running marathons and half marathons and was getting into triathlon, these all seem unattainable pipe dreams now but I am trying to find a way back towards it.I'm finding understanding my feelings of fatigue particularly hard to understand and manage and would appreciate and views or advice on this.
thank you for taking the time to read this.
Comments
Hi Ray,
I'm Rachel- Lead Nurse here at Anthony Nolan.
Thank you for sharing your experience, it sounds like it's been a tough few months and understandably it will take time to recover from all you've been through. I'm sure other patients on the forum will identify with what you've talked about and offer advice but I wanted to take the opportunity to mention a couple of support resources that we have at Anthony Nolan, that you may benefit from.
We work closely with a partnership organisation called Working to Wellbeing- they have a variety of professionals who can support patients following transplant with improving physical health/fitness and also emotional support. If this is something you'd like to know more about you can look at the website:
https://www.anthonynolan.org/patients-and-families/get-support-us/telephone-emotional-support
or you can call our helpline 0303 303 0303 and one of the team can explain more and put you in touch with Work to Wellbeing, if you'd like.
Kind regards
Rachel
Hi Ray and welcome the the forum. I'm one of the online community champions here and had a stem cell transplant in 2013 for ALL. Thank you for sharing your experience. It sounds like you've had quite a journey and still have some way to go. You are still quite early in the recovery process at around 6 months post transplant so more time will hopefully help.
I don't think any of us appreciate how hard the stem cell transplant process is, or how long it takes to recover. I do hope you're able to recover to a level where your marathons and half marathons are still possible. I know of stem cell transplant patients who have recovered sufficiently to do that and hope you get there too.
I can understand your feelings of anxiety around fatigue and its something that we all experience. It does take a long time to recovere our fitness and even now, almost 10 years since my transplant, I get tired more easily. That said, I do feel as able as I ever did regarding my abilities, although I was never a marathon runner by any means. Since my transplant I have climbed mount Snowdon three times in the past 10 years, something which I'd never thought about doing before my transplant.
Rachel has signposted you to a couple of areas of support which will hopefully help, but in the main it is a matter of taking time to recover and build your strength and stamina back up. Hopefully others will be able to comment with their experiences, though I'm not sure if there are any marathon runners amongst them.
All the best,
Steve
Thankyou Steve and Rachel for you replies,i think I am beginning to understand that my recovery is not going to be linear and that I will need to listen to my body a bit more than I have done in the past.I shall certainly be looking into Work for Wellbeing.
Best wishes
Ray