Blood Transfusion Frequency

This folder is purely for messages related to general transfusion issues, as well as iron overload & iron chelation treatment due to those frequent red blood cell transfusions.

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Delwyn
Posts: 15
Joined: 20 Oct 2011 11:43
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Re: Blood Transfusion Frequency

Post by Delwyn » 04 Nov 2011 11:06

janetstanford wrote:Hello good to read your post you seem brighter :)
fast heart yes when that starts i know i am on the decline and within a few days i am off for a test ....tell me what was your result and how many units did you get and yes at times takes me 2 days to adjust going from low to high

hope you had a nice tea (yesterday ) :) take care Janet

Hello Janet, My count was 81 and I had 3 units. Thanks for your reply. Delwyn
Delwyn
Posts: 15
Joined: 20 Oct 2011 11:43
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Re: Blood Transfusion Frequency

Post by Delwyn » 04 Nov 2011 11:09

chris wrote:Dear Delwyn

You should be reassured that there will be many, many MDS patients with Refractory Anaemia who will have had years and years of blood transfusions at quite frequent intervals. Sure, they will feel tired and out of sorts in the week or so leading up to the next transfusion but, as Janet says, you will get better at knowing when you really do need one. Can't understand why you would be told to try to eke them out ? Surely, if you feel rough, it's because your Haemoglobin is low and nothing you can do about it!! Refractory means resistant to treatment!!

I have copied a link here for an information page on the different types of MDS and how to assess your risk score for your particular type. Please have a look at it and hope this will help you not to worry so much. Please also see if Sophie can send you some information as suggested before.


https://live.blueskybroadcast.com/bsb/c ... 4&CAT=1604

Out of interest, does your depression lift a bit once the transfusion kicks in? Might they be linked? Please see if you can talk to somebody professionally about this as it might help you. Also have you checked out the side effects of your anti-depressants as they might also be having an effect on your fatigue levels?

Keep well

Chris
Hello Chris, Thanks for your reply. I have been on anti depression tabs for many years.

Midnight here, Friday
Delwyn
Posts: 15
Joined: 20 Oct 2011 11:43
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Re: Blood Transfusion Frequency

Post by Delwyn » 04 Nov 2011 11:13

Jayne wrote:Hi Delwyn

I think I can sympathise with your worries. I have not had any treatment as yet and feel very scared of taking that first step. I feel like it will be the first on a slippery slope. However, I know I cant keep going. So the way to keep me going is to have treatment!

I feel very sorry for you as you sound quite scared and alone. Do you have a medical team who specialise in MDS and can answer your questions and explain the logic behind their treatment and what they are telling you?

Jayne
Hello Jayne, Many thanks for your reply. MDS is rare illness, so my Haemo tells me. She is not much help and gives me very negative answers to my questions, so it is a bit lonely. I dont know anyone here who has it.
chris
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Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Blood Transfusion Frequency

Post by chris » 07 Nov 2011 16:04

Hi Delwyn

Sorry to hear that your depression is a long-term issue for you - I had wondered if it had been triggered by the MDS diagnosis but I guess it has just made things seem worse for you? There is quite a lot of controversy in the UK about the effectiveness of long-term use of anti-depressants and I wondered what the thinking was in NZ and if you had any access there to talk therapies such as Cognitive Behaviour Therapy? There is some discussion on this Forum about the availability of psychotherapy for dealing with the emotional fallout following MDS diagnosis. Do you have a haematology nurse specialist at your hospital as she may be able to offer support?

I hope you are reassured reading that others who are transfusion-dependent do have low mood preceding their transfusion so there must be a link - not surprising when your brain is effectively and regularly being deprived of oxygen!!

Take care

Chris
Chris.Trustee,Patient Support Ambassador (Essex) (F) Age 73 (2023)).Diagnosed in 2008. CMML-1. Normal red cells, low white cells & platelets, slightly raised monocytes. Enlarged spleen. Not had any treatment - active monitoring 6-monthly.
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