Mum’s MDS

Hi All,
Hope you’re all ok!?
I haven’t posted for a while my mum is still battling low risk Myelodysplastic syndrome (MDS), in June she was diagnosed with liver cirrhosis, she remains the most stoic person i have ever met! Which does not help with trying to ascertain how she feels daily! But she hasn’t had to have blood now for 7 weeks her hgb is steady at 85-90 this has happened twice now with a bag of blood inbetween her consultant (every 4 months by phone) just says ‘well thats the anemia’? she has lost loads more weight her feet/legs and ankles are swollen daily, her health generally has declined she was diagnosed with heart failure aswell back in March 2022 i was wondering if anyone has experienced going from weekly blood transfusions to long periods without it? She had a b12 test last month which found she has too much b12 but we haven’t heard anything back from her consultant regarding this?

Thanks for listening to me!
Lucy x


Hi @Lucy1,
Thank you for sharing this. It sounds as though it’s been a difficult time for you and your Mum recently. I’m sorry to hear her health has been declining- that must be so tough for you to see. You’ve raised some really understandable questions, and I wondered if you had the contact details for your Mum’s Clinical Nurse Specialist, if she has one? It can be difficult waiting for results and it’s also very reasonable to want to know the rationale behind her care decisions, so I’d encourage you to reach out to her team if you can so they can go through this with you. It’s very individual with regards to issues such as frequency of transfusions although I’m sure others can share their experiences personally.
Please do give us a call, Lucy, if you need any support or want to talk anything through- 0808 2080 888.
Best wishes,


Gosh @Lucy1 you and your mum have gone through a lot since you last posted.
It cannot have been an easy time for you seeing your mum and not being able to make it better.
@TanyaBloodCancerUK has given you a brilliant response which I will not repeat.
Please do keep posting and I hope others will be able to help with their experiences.
Look after and be ever so kind to yourselves
Your mum is so lucky to have you.

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