I’m new to the forum.
My dad was diagnosed with Myelodysplastic syndrome (MDS) with excess blasts in Jan 2020. He has multiple health issues anyway and in March 2022 he was diagnosed with Chronic Heart Failure with an ejection farc of under 35%. He had been having regular azacitadine injections (14 or so cycles) and some blood and platelet transfusions. He’s had no injections since July 2023 after a fall that caused severe neuropathy and incontinence.
In terms of his Myelodysplastic syndrome (MDS) it has ‘stablised’ until very recently where his RBC have dropped significantly from about 105 to 76 and he required blood transfusions. He’s had 2 in the last month. He’s just had a blood test after his last BT 2 weeks ago and now his RBC are even lower at 67. Could anyone tell me what might be going on here please? He wont be restarting the azacitidine.
Many thanks in advance, just tryjng to understand what might be going on.
Hi @Chadders I am so glad you have found us, welcome.
It sounds as if your dad has a very complicated medical history and you show so clearly that we are all very individual people with unique medical histories and the medical people looking after his care are the only ones that can answer your questions.
However your dad is really the one to ask these questions, unless he gives his permission for you to talk to his team.
You obviously care so much about your dad that it must be a worrying time for you.
Please do try to look after yourself as well as you do your dad and keep posting
Thank you for your reply, it is much appreciated.
I am heavily involved with his medical care but trying to contact his team is difficult as they are so very busy. He doesnt attend consultations face to face anymore either as his mobility is so poor and being out of the house completely drains him.
I guess as you say it is all individual. I will try and contact his nurse to see if we can understand what is happening.
Hi @Chadders it is not an easy situation for you .
Contacting your dad’s nurse sounds a really good step to me too
Please let us know how you get on.
Take lots of care of yourselves
Hi @Chadders how are you and your dad doing? Did you manage to talk things through with his nurse? We hope you’re doing okay, please do get in touch with us on 0808 2080 888 or firstname.lastname@example.org if there’s anything we can do to support you.
Thank you for checking in. Shortly after my post, my dad went for another blood transfusion and they kept him in due to an infection (cause unknown) and kidney disease stage 3- severely dehydrated. He has since developed severe back pain and petechiae all over his body (trunk, arms and legs) They are treating the infection and looking into possible causes of his back pain. It has been helpful as he is being monitored closely but still noone is answering why the blood transfusions arent improving his rb count or symptoms. He is currently having another transfusion by his hospital bef as his rbc is 72 not even a week after his last transfusion. They are also upping his Eprex injections.
Thanks for the update @Chadders, I am sorry to hear that your dad is not well and in hospital but I think as you that perhaps he is in the right place and being monitored and treated.
Please do keep us posted and perhaps this is a good opportunity for you to ask all your questions.
Please also take some time for yourself to be able to recharge your batteries and keep posting.