Blood Transfusion Frequency

[Delwyn]

I am now having transfusions every three weeks, last time one of the nurses said to try and last longer before the next one. As Im new to all this, it scared me, I am now 24 days after last one and feel very sleepy most of the day. As the transfusions get closer does this mean Im going to die soon.
Regards Delwyn

[janetstanford]

Delwyn

no no no it means your hb is getting lower which means less oxygen time for a blood test i think soon ....

i have transfusions approx every 3/4 weeks 2 units but on tues i had 3 units this happens some times ( maybe because of match , age of blood ect )
i was told a couple of years ago to try and go longer / manage the transfusions i did.....

you must remember hb contains iron and this can cause issues ...i take exjade every day do you take it or similar medicine

i think you should talk to /contact sophie (as chris also suggested ) she will help which in turn will help you be more positive ...and of course you can talk to us by posting mind not sure if we can help
take care be positive we are here Janet

[chris]

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

[janetstanford]

Hi Chris and Delwyn

yes chris as hb lowers my mood is quite low as well i can be tearful at times so delwyn this may also be a reason you feel down i do agree that there may be side effects from your tablets may be an idea to have this checked
Chris the reason they tell you to eke them out or last longer is because of the iron overload in the past i for example have had symptoms i go for a test and the result is 9.1 i have had to go back the following week and by then i fell rough so they gave me 3 (more iron) .....as my hospital transfuses under 9 ..but about a year ago a light bulb went on looked at all past results worked out i use/loose 0.7 units approx a week so if i go every 3 wk 4 days or 3 wk 3 days i would be around 9 and get 2 units except on the 4th in the cycle when i would get 3....it works and i do not drop to such a state i can hardly climb the stairs...i discussed this with the doc this means approx 8 units less a year seems a lot of hard work but less iron .....
Delwyn i would advise you contact Sophie she can help
i would also suggest if you have the symptoms you go for a blood test this way you will learn to listen to your body and know when you need a transfusion
and take the advice chris has given have your meds checked out

both take care hope to hear from you both soon Janet

[Jayne]

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

[Karen]

Hello Delwyn

My Dad has 2/3 units every two weeks, otherwise he gets very lethargic and breathless. The doctors have not said that this signals anything worrying. Obviously his iron levels will need to be monitored to avoid overload.

A month or so ago he was in for his transfusion and he met a man with MDS who had been on a programme of regular transfusions for 14 years.

It's difficult not to be scared or down about dealing with this condition, but for many people it can be managed.

Karen x

[meerkat]

Hi Delwyn

I would totally agree with those comments made by others in this thread. Things are clearly very difficult for you at the moment, but I'm sure the passage of time and increased knowledge and understanding will help you get your head round what's happening to your blood and how it affects your mood and energy levels.

Like Janet my mood definitely lowers as a transfusion approaches. I describe it as being perpetually under a black cloud at that time. I know its there but I can't shift it!!

I'm interested in comments about trying to 'last' as long as possible before the next transfusion. I was advised my by hospital doctor to ask for blood before events like an active holiday, so that my energy levels are good enough to enjoy it. This has worked well, though I haven't abused the requests.

I have used desferrioxamine infusions in the past to remove the excess iron, and found the system worked well and was not that intrusive.

Keep reading and learning about MDS. Hang in there and try and stay hopeful. Things will get better. Honestly

Take care.

[janetstanford]

Hello all

Meerkat can i ask when do you get your transfusions how many units ect how long have you been getting them I am glad that low mood seems to go along with low bloods...i do have a transfusion before holidays so i am fit to go ....but the eke it out bit is on a normal basis transfusion to transfusion basis (did i just type normal )

Delwyn i know New Zealand is 12 hours ahead of the uk its 5 a.m there but do hope you will post soon its so good to see posts from both karen and meerkat as well chris jayne and i do hope they have helped

All take care Janet

[Delwyn]

Many thanks to you all. I am not on any medication, managed to hold on for 28 days but felt very bad (fast heart rate, just lay around the place. After transfusion I feel tired for 2days. Its good to find a forum and hope to get to know everyone soon. It is 5pm here, and nearly time to cook. I will keep in touch.
Regards Delwyn.

[janetstanford]

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