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Advice for my mother with Mylodysplasia

Posted: 27 Feb 2017 22:48
by snowcrew
Hi all,
My 81 year old mother has mylodysplasia and is now blood transfusion dependent - having two units of blood (occasionally just the one) every 14 days. We try to maintain her HB at around 9.3. She is taking daily exjade in an attempt to keep the iron overload at bay but not great at moment as her iron overload is around 2000. Just a few general questions as she is normally an anxious person but her anxiety is terrible now and she is exhausted all the time despite her HB being maintained around 9.3. If she is healthy she normally drops 0.7 per week unless she has a cold or is ill when her HB drops significantly. Her breathlessness is bad but her oxygen levels are good - still don't know if this is due to the MDS. Feel like we are kind of in the middle of the care between her GP and the haematologist at the hospital (never see the same doctor). She just looks so exhausted all the time now. Just wondered if anyone else has same exhaustion despite maintaining HB with the transfusions??

Re: Advice for my mother with Mylodysplasia

Posted: 28 Feb 2017 14:31
by ClaudiaRichards
Hello, I'm sorry to hear of your mother's diagnosis and the fact that she's suffering from anxiety as well as struggling with her symptoms. Being diagnosed with a rare condition can in itself be stressful, particularly if those treating you aren't making it manageable for you. You don't mention how long she has been having transfusions or whether she has other health issues which may contribute to her breathlessness and fatigue - both these factors can have an impact on our wellbeing. By the way, have you downloaded the Fact Sheet on fatigue from the website?

I have been transfusion dependent for over 7 years and have been undergoing chelation for nearly 5 of those years. My ferritin levels were around 4000 when I started chelation, but I feel a lot better and am less fatigued now that the iron overload is more under control, so perhaps your mother might also feel more benefit once her levels reduce somewhat. However, in my experience, my Hb level doesn't necessarily reflect how I feel! If I haven't slept well, for instance, I can feel rotten. In addition, we all experience symptoms at different blood counts - so at an Hb level of 9.3 one person might function quite "normally" while another will feel exhausted!

I don't feel I've really answered any of your queries, but we are all so different in terms of how MDS affects us that it's somewhat difficult to generalise. If you haven't spoken to Sophie in the MDS UK office and/or your Mum hasn't had a referral to a Centre of Excellence as yet, one of those options might be your next step.

Best wishes, Claudia

Re: Advice for my mother with Mylodysplasia

Posted: 28 Feb 2017 16:15
by snowcrew
Hi again

My mother was diagnosed probably around 15 years ago with mylodysplasia but did not need transfusions as she had the daily injections in her stomach. Unfortunately, I understand, that due to her having an undiagnosed cancer the injections then aggravated the tumour and it grew massively and she had to have half of her liver removed ten years ago BUT is no longer under the oncologist, which is wonderful. So the injections could no longer be given so she had to opt for transfusions, back then it was probably only 1-2 units every 8 weeks. So over 9 years, her iron overload has increased as the transfusions have become closer and more frequent. Now its pretty much two bags every 14 days unless she succumbs to a bug or something in which case it has gone to three bags. She does have osteoporosis but it is under control. Having had everything else checked recently, it does appear that it is now the mylodysplasia that is taking its toll on her well being......... she is tired all the time.......... out of breath a lot ......... doesn't have restful sleep really any more. It is horrible to see her decline and I completely understand why, if she is, depressed due to her absolute fatigue. The exjade may or may not be helping now but her levels of iron overload are gradually creeping up - not ever reducing.

I just wondered if anyone else suffers from this absolute FATIGUE - malaise - sleeplessness etc?

What happens next? What can I do to help??

Her haematologist basically said she is in the later stages of the disease and she must just try and enjoy life - thats easy for him to say!

Any pointers would help

Re: Advice for my mother with Mylodysplasia

Posted: 04 Mar 2017 10:35
by ClaudiaRichards
Hello again,

Since your poor Mum's symptoms are so severe and it seems they're all due to the MDS, I would really advise you to have a chat with Sophie (0207 733 7558) about whether there are any other options for supportive care for her particular MDS sub-type. MDS UK issued a report a few years ago specifically focusing on the care of elderly MDS patients as, sad to say, their needs are so often overlooked. Being seen at a hospital where there is expertise in the disease can really make a difference. I hope you can soon find some better advice.
Best wishes to you and your Mum

Re: Advice for my mother with Mylodysplasia

Posted: 09 Mar 2017 13:25
by meerkat
I haven't posted on here for a while as my health circumstances have changed, however with a healthcare background and requiring regular blood transfusions for MDS, I did, at the time, fight my corner to maintain a reasonable Hb level. Obviously age is just a number and there are huge variations of 'wellness' in people of the same age. However I argued that MDS was/is a chronic illness and I needed support to maintain a quality of life to enable me to work, maintain a household and have a social life. I argued that it made no difference to blood supplies etc whether I was regularly transfused from 7-10, or from 9-12 (haemoglobin level). But this would make a big difference to my quality of life and indeed my ability to function. I found my clinicians were very supportive after that discussion. Whilst I don't know the abilities or 'wellness' of the lady, it may be worth discussing with her doctors whether a trial of maintaining her levels at 10 or 11, would make a difference to her fatigue and overall quality of life. If that were the case then levels could be maintained with the same number of transfusions. I recognise that blood products are a scarce resource and should not be 'wasted' however maintaining people's quality of life should be considered whether they are aged 40 or 80.