Living with MDS

I had been a nurse all my life then 1 year before retiring I started becoming extremely fatigued. Following referral to a haematologist and bone marrow biopsy I was diagnosed with intermediate Myelodysplastic syndrome (MDS) and given a booklet to read and told they weren’t sure whether it was something that had been slowly developing over a few years or whether it was something that had developed suddenly and would escalate quickly.
After reading the book I suddenly was in shock after realising the seriousness of what was going on as were my family. Initially I was on watch and wait as at that time only my neutrophil count was low.I kept reasonably well apart from the chronic debilitating fatigue which I found hard to deal with. I had to accept that when I needed to rest I had to. Family understood this but friends kept asking but surely if you’ve got blood cancer you should be getting treated. Many of them still don’t understand Myelodysplastic syndrome (MDS) and I’ve felt very isolated at times.
My Hb then started to drop so I was started on Eprex injections. They didn’t really make much difference so GCSF was added. After a year these were stopped.
I felt helpless and thought I was just going to be left to die I asked my consultant why I couldn’t be considered for a Stem Cell transplant as I was otherwise fit and healthy. She said would you consider one? To which I added if that was my only chance of getting rid of Myelodysplastic syndrome (MDS) then of course I would.
I was referred to the transplant team at Leeds in March 22 for an initial transplant consultation and was told they’d start the search for a donor.
It’s been an absolute roller coaster living with Myelodysplastic syndrome (MDS).For the past year I have been on 2 weekly blood transfusions as my haemaglobin drops quite quickly. I keep going as best I can but do get times when I feel really down and frustrated that I can’t do the things I’d like to do.
I’ve recently found out that they have found a donor but it is a mismatch and that it probably wouldn’t give me a good outcome for success so they are still searching for a better match.Every day I pray that a better donor can be found.
The transplant process fills me with dread but if it’s going to give me the chance of a normal life again then it will all be worth it. Till then I wait. It’s been good finding this forum as I feel I can chat to people who all have problems. It’s good to know I now have the telephone number to talk to someone on the bad days and I can’t thank you enough.:slightly_smiling_face:[date=2024-02-20 timezone=“Europe/London”]


Hi @Ros a great big welcome you are now part of our forum family, I do not know if it helps being a nurse or not.
I will send you the link to the Blood Cancer UK website about Myelodysplastic syndrome (MDS)
Myelodysplastic syndromes (MDS) - what is it, symptoms, treatment and prognosis | Blood Cancer UK
The thoughts and feelings you have experienced sound so sad, lonely, scary and isolating and a real rollercoaster. I think the unknown is,
I attach the Blood Cancer UK support line number 0808 2080 888.
If you would like to contact the Blood Cancer UK nurses they are on @BloodCancerUK_Nurses
I hope others will be able to share their experiences
Please do keep posting and be ever so kind to yourself


Aw thank you so much Erica for your very prompt reply. It feels good to know that I can now share my blood cancer journey with like minded people experiencing similar problems. Thankfully I have the most wonderful supportive husband and family who I know are with me every step of the way. I do feel for them as well as know they worry about me. I think we all know that it isn’t just the patient who goes through it all as it so impacts on family and friends too.
My thoughts go out to those on their own personal journey and their families and I really do hope they have positive outcomes.


Dear @Ros
I wanted to reach out and see if we could help support you through this uncertain time. It is understandable that you are concerned about the transplant process, may I ask if anyone has talked you through this? Do you have a Clinical Nurse Specialist that you can discuss this with? You are very welcome to talk this through with one of the nurses on the Support Line and I could always arrange a scheduled call with you if that would help? Our booklet Blood stem cell and bone marrow transplants booklet | Blood Cancer UK Shop is also a great resource for those being considered for Stem Cell Transplant which you can either download or order for free.
Are you receiving any treatment whilst the donor search continues? How are you feel symptomatically just now?
Apologies for all the questions, please do give us a call or email Blood cancer information and support by phone and email | Blood Cancer UK
Take care


Hi there Gemma many thanks for your email and concern.
Initially I had Eprex and GCSF for a year which unfortunately didn’t work. I now have 2-3 weekly blood transfusions to support me this means me having to take Exjade daily to lower my ferritin levels.
I received the booklet you mentioned some time ago when stem cell transplant was first mentioned round about January 22 I think. I do have a haematology specialist nurse who liases between Hull and the transplant team at Leeds.
They have said they are still actively searching the donor register for a suitable donor. So hopefully in the not too distant future I’ll get lucky. Thank you again for your help. Kind regards Ros :slightly_smiling_face: