Hi
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 support@bloodcancer.org.uk 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.
Still in hospital. Due to be discharged tomorrow as hes classed as ‘clinically well’ because there’s nothing acute. Currently no temperature, low infection markers, bp ok, oxygen level ok.
Infection, not able to be isolated, has responded to meropenem but it took approx 12 days. Back pain, unidentified, treated with short and longtec. MRI and brain scan show no cause of infection or confusion. Petachie/purpua rash not addressed even though he didn’t have it before he went in. Still low rbc (73), now on 3rd transfusion in as many weeks. Doesn’t often remember my name or my children, can’t remember who visited hkm the previous day. He will be coming out worse than going in. Will see what the physios say today, he’s not even sat up for 3 weeks. At a complete loss. Photo to show part of rash.
Hi @Chadders you are obviously so worried about your dad and the plan to discharge him tomorrow.
Perhaps be pleasantly assertive and raise your questions, concerns and practicalities with your dad’s physio and medical team.
Also perhaps ask for clarification on your dad’s rash.
Please do let us know how you get on.
Please do look after yourself as well as you are trying to look after your dad.
Hello @Chadders
Thank you for posting on the Forum - I hope you are okay and getting some support too.
I would guess that the rash in the photo is related to your Father’s platelet count being low. Do you know what his result is?
The normal range is 150 - 400, however patients with Myelodysplastic syndrome (MDS) can have counts as low as 10 (or even less). Has your Father had a platelet transfusion before? I am sure his Haematologist will best advise around his blood counts.
Just to let you know I have also sent you a private message.
Honestly, no pressure to get back in touch at all, I know you will have lots to think about.
Do take care, we are all here if you need us - best wishes, Heidi.
Thank you both for your replies and words of support.
I spoke at length with his Haem Specialist Nurse yesterday and rasied all the concerns above. They saw him yesterday briefly approx 5 mins in which time my dad said he felt great and wanted to go home. I tried to explain that this is such a short amount of time to judge how he is because it’s certainly not the person I see when I visit him. At 5.30pm yesterday he was groaning, repeatedly saying he’s poorly, that he’s going to be dead in the morning. Raised this and havent heard anything since. He can’t answer his phone because he is confused and asleep almost all of the time. The ward nurse said hes ok and had a wash (HCA) He can’t remember if he’s eaten or anything.
I know his platelets are around 40. He has been significantly lower and required a platelet transfusion but this was approx 2 years ago.
The current plan is because there’s nothing acute, there’s nothing to treat so he would be no worse off if he were to be at home. The next step is another blood check next week to see if his rbc needs topping up, which would mean him going into hospital via transport (wheelchair- can’t walk or transfer) so potentially another full day for him which I don’t think he can manage. I’ve expressed this but it’s met with, ‘we will have to see’, if he doesnt his prognosis would dramatically change but as it currently stands he has absolutely no quality of life.
He does have equipment at home, a hospital bed and walking frame. We pay for 1 carer 4 times a day but this is increasing to 2 carers each visit because of his incontinence and lack of mobility needs, but i still dont think we will manage with this. Before being in hospital when he was more lucid, he categorically refused to go into a care home.
I guess my question is, are we nearing the end? Why won’t anyone say? Why isn’t anyone seeing what I’m seeing? Does he need hospice care?
Thank you again so much
Oh @Chadders - I am so sorry you are having to process all of this. It sounds such a tough and frustrating time. There is so much to say and comment on throughout your post, and I would hate for things to get lost in translation, so if you feel up to it please do call us - 08082080222 . It may be much easier to discuss things over the phone. We can give you some ‘buzz words’ for discussion with the nurses/Haematology team.
Keep in touch. Heidi.
Oh @Chadders it must be so, so hard for you yesterday hearing your dad say such contrasting things within a few hours.
Perhaps all you can do is keep raising what you are seeing and hearing from your dad and also ask about your fears and practicalities as they are what are playing on your mind.
Please do look after yourself, you have so much on your plate and keep posting