Hi, I’m new here and looking, like everyone I suppose to cha5 to people in a similar situation
My father is 83 has Myelodysplastic syndrome ('MDS') and is currently receiving blood transfusions every 4 weeks
He is sleeping more and more in between and is now sleeping up to 18hours a day
Isthisnormah
Hi @Sammi and welcome to the forum.
I was sorry to read about your Dad’s diagnosis.
Never good news to get a blood cancer.
There are many different types of Myelodysplastic syndrome ('MDS') as I understand it.
If your Dad is getting 4 weekly blood transfusions I’m thinking that his Haemoglobin level (red blood count) is on the low side.
When I was diagnosed with Myelofibrosis an Myeloproliferative neoplasms ('MPN') back in 2023 I had Blood Transfusions periodically.
Tiredness and fatigue definitely common issue for many of us dealing with blood cancer in my experience.
It’s definitely worth reaching out to your Dad’s Haematology Team for specific medical advice.
This link provides more information about Myelodysplastic syndrome ('MDS')
You might also want to reach out to the @BloodCancerUK-SupportTeam and the @BloodCancerUK_Nurses.
They can be contacted using details below
Call us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
Hope that helps and best wishes to you, your Dad and family
Thanks for reply and advice
Dad has had Myelodysplastic syndrome ('MDS') for a few years now but even when transfused his hg doesn’t go above 95
He can’t have chelation therapy due is kidneys not being great so the monthly transfusions aren’t ideal … I’m just so concerned about the amount of time dad spends sleeping and his mobility is also poor
I will speak to his haematology team tomo but when I saw dad earlier I did think that this amount of sleep can’t be good/ normal
Hello there @Sammi, welcome to the forum. I’m sorry to read of your dad’s diagnosis with Myelodysplastic syndrome ('MDS'). Sounds like he’s been living with that for a few years, but your concerns about his sleep show how caring you continue to be. Lucky him to have you join the forum to support him further.
I see dear @DuncanB has shared the same links I would offer you, and I would second his suggestion of calling the Blood Cancer UK nurses. They are experts in all of this so can offer medical advice, point you towards other resources, and are just really lovely and supportive. You’ll see them around the forum too, but you can take your medical queries directly to them if you’d like, just give them a call.
While I live with a different type of myeloid blood cancer to your dad, I think many of us recognise the sheer fatigue we feel as our bodies and minds deal with these disorders and their treatments. I read early on after my diagnosis with Polycythaemia vera ('PV') that something like 80 % of us living with blood cancer will experience cancer-related fatigue (CRF).
I experienced pretty disabling fatigue after I started my treatment, for what it’s worth. Fatigue is very fatiguing! Here’s some information which also includes some tips for offsetting fatigue: Fatigue | Blood Cancer UK
I’ll also share here some information from Blood Cancer UK about Myelodysplastic syndrome ('MDS'), including its different types, which may be of interest: What is MDS? | Blood Cancer UK
And may I just say from my non-medical but lived experience that your dad as an older person living with blood cancer sounds like he’s doing pretty well! If I can reach 83 and can sleep well I will feel like I’ve achieved something. Not to minimise what your dad is experiencing of course—do pass his fatigue by his haematologist, and perhaps even the BCUK nurses.
Do please let us know how your dad and you get on @Sammi.
Hi @Sammi
If your Dad’s Haemoglobin is at 95 even after Blood Transfusions then he is going to feel tired, especially when the levels drop.
Hopefully get some good advice from your Dad’s Haematology Team
Hi @Sammi,
DuncanB and Duncan have given you a lot already, but I wanted to come back specifically on the sleep and mobility changes you’ve described, and you were right to want to flag it rather than assume it’s just part of him getting older. I’ve asked that our nurses take a look at this thread so they can give you a proper clinical view on what’s worth raising with his haematology team.
It sounds like you’ve already got that call with the team in hand, but if anything changes before you speak to them please don’t wait, get him seen at A&E.
Do let us know how you both get on,
Ceri - Blood Cancer UK Support Services
Dear @Sammi,
Welcome to the forum. I am sorry to read about your Dad’s diagnosis of Myelodysplastic syndrome ('MDS') and how much he is struggling with fatigue. We would be very happy to talk things through in more detail if that would be helpful, you can reach us on 0808 2080 888.
It sounds like your Dad’s quality of life is really effected by his fatigue and I would encourage you to raise this with his haematology team. They may wish to look at the frequency of his transfusions, sometimes this needs tweaking to hold the haemoglobin better. Does your Dad have a clinical nurse specialist (CNS) you can call?
I would suggest reaching out to the CNS asap to let them know how things are but aside from this can I ask if he due in clinic to see the consultant any time soon? It sounds like a clinical review and re-assessing the plan would be helpful.
Do let us know what they say,
Take care,
Heidi J (Support Services Nurse)
Thank you for taking the time to reply
I took dad for a double appointment with his gp yesterday and gp has run a very comprehensive blood screen to see if there’s more going on that we are not aware of … he also suggested a mild antidepressant as dad is very emotional 
.. so hard to watch
He has a good transfusion booked for next week … his haematologist doesn’t want to increase frequency of transfusions due to the excess iron and dads kidney function
I’ll see what gp bloods come back with and go from there
Hi @Sammi
It must be very difficult for you and your Dad right now.
It’s good that your Dad’s Haematologist is being careful on frequency of blood transfusions as there’s impacts of them.
Fingers crossed for GP blood results and as you say you can plan from there.
Take care
Hello @Sammi, how are you and your Dad getting on? Did you get those blood test results from your GP?
Take care,
Ceri - Blood Cancer UK Support Services