My father was diagnosed with Myelodysplastic syndrome (MDS) in March and due to his age has been managed on fortnightly blood transfusions alone. He has recently been admitted to hospital with infection of his knee and then a week later with a GI bleed (black stools). Otherwise he has been well and mobile following his blood transfusions although he is noticeably tired as he is coming up to when his next transfusion is due.
The haematologist has now said that the recent problems are a sign that his condition has progressed to leukaemia that will worsen and that the blood transfusions are no longer of benefit so they are stopping the blood transfusions and my father will have end of life care at home - no future treatment in hospital.
He was given a final blood transfusion before being discharged home 2 days ago. He has been alert and well since and now we are questioning why the blood transfusions are being stopped. My father doesn’t accept that the blood transfusions are no longer benefitting and wants the decision to be revoked. I will contact the haematology team tomorrow to discuss continuing the blood transfusion and wondered if anyone else had experienced this and any advice. Can the haematology team refuse?
This has been very distressing for my dad and family - whilst we accept that my father is approaching end of life, is that sufficient rationale to stop the blood transfusions at this point when my father feels so well after receiving?
Oh @crv874 I am so glad that you have found us at such a distressing time with your father. I cannot imagine what you are going through.
Have you been contacted by the end of life team?
They might be able to answer you and your fathers questions.
Perhaps it is worth you both writing all your fears, questions and practicalities.
I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Please do keep posting as we are here for you both and the important thing is that you both look after yourselves and make lovely memories. Personally I regret not asking more questions about my parents lives.
Be kind to yourselves
Thank you @Erica - appreciate your kind words and your copying in the Blood Cancer UK nurses.
The palliative care nurse is visiting tomorrow and we will discuss with her. We want to ensure that my dad’s wishes are fully considered. Thank you again.
Hi @crv874 I will be thinking of you both today and yes, it is so, so important that your dad’s wishes are fully considered and you all talk honestly.
Please do let us know how the meeting goes, it is not going to be easy for any of you so be kind to yourselves
Dear @crv874,
I am so sorry to read your post, I can only imagine how difficult this time is! I am glad you found us!
I think it is really important that you raise all of this with the team. How did you get on today with the palliative care nurse? Have you got contact details for your Dad’s Clinical Nurse Specialist (CNS)? It would be worth calling them and explaining Dad’s wishes, also explain how much he picks up with the blood. These decisions don’t need to be final and situations like this often change so do reach out to them.
We are very much here for you, please do reach out to us if we can help or support you, all of our contact details are here - How to contact Blood Cancer UK | Blood Cancer UK
Take good care,
Heidi (Support Services Nurse)
Dear @Erica and @Heidi_BloodCancerUK
Thank you so much for your support - has given me the confidence to call the CNS team and put everything in an email to the consultant. Just received a call back - we have an appointment to see consultant on Monday for a full discussion and a blood transfusion booked for Wednesday.
Am grateful for the opportunity for my father to express his wishes.
Thanks again and have a lovely weekend.
Dear @crv874,
I was so glad to read your comment this morning! What an amazing advocate you are for your Dad! I do hope the discussions go as well as they can today but ultimately that they continue to support your Dad with transfusions until there is a change. Do keep us posted and know we are here for you!
Make sure you look after you too!
Best Wishes,
Heidi (Support Services Nurse)