Any Haematologists / Myelodysplastic Experts Here?

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Any Haematologists / Myelodysplastic Experts Here?

9 posts & 4 voices | Started 1 year ago by BigJohn | Latest reply from wednesday

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BigJohn - Member

My Mother in Law has got this syndrome and has been having monthly transfusions for a couple of years. She's in her 80s, suffers from all sorts of other things and has been on Exjade for a year or so.

About 2 months ago she broke her hip and has been in hospital since, and has been in poor health.

She's now having to have a couple of units every 2 or 3 days. She's fine for a day or two but her blood levels keep dropping. And I don't think it helps that they've been keeping her in a Trauma Orthopedics ward either.

What happens now? Can the NHS just keep an old lady on a constant transfusion, or will nature take it's course quite soon?

Posted 1 year ago #
foxyrider - Member

Blimey 2 units every 2 days - that's a fair loss of erythrocytes - she hasn't got a haemolytic disease? - I would have thought a myelodysplastic disease would cause her blood parameters to drop more slowly?

She hasn't got any internal bleeding?

Posted 1 year ago #
BigJohn - Member

I think they've checked for that. It's difficult to tell if the lack of information from the hospital is down to

a - On the wrong ward / bad lines of communication
b - All the consultants have been on holiday for a month
c - Deliberately keeping the family in the dark

Posted 1 year ago #
Big Dave - Member

I'm very far from being an expert but I would try and get a second opinion if I were you. It might be worth checking that she isn't suffering from something more nasty which is affecting her bone marrow. Just before my mum died from cancer it became apparent that her bone marrow wasn't functioning as it should because the cancer had spread and she needed regular blood transfusions because her own blood was such poor quality. Like I say, I am no expert (and I certainly don't want to come across as a scaremonger) but I would urge you to get the doctors to consider other causes and try to get her transferred to a medical ward.

In the politest way possible raise merry hell until you get some answers; unfortunately even the best NHS staff are overworked and sometimes don't have the capacity to be able to sit back and consider things more thoroughly, especially if the patients symptoms suggest, as they do on your mums case, that the patient is on the wrong ward.

Posted 1 year ago #
foxyrider - Member

+1 second opinion (in house) if your questions are not being answered? Sorry I was not scaremongering I am surprised at their lack of communication given 2 pints every 2-3 days? have they ever mentioned the term End Stage Myelodysplasia?

Posted 1 year ago #
BigJohn - Member

My sister in law has been there today, having overheard a registrar say "why is this woman not in Haemotology?".

But most importantly - what can realistically be done at this stage?

Posted 1 year ago #
BigJohn - Member

A respectful bump for those who've just got off the day shift.

Posted 1 year ago #
foxyrider - Member

COMPLAIN!

Posted 1 year ago #
wednesday - Member

Clearly your Mum in Law should be on a medical ward, orthos are good at fixing bones but not this.

Speak to the ward manager, or the consultant who usually cares for her and request she is moved to the approriate ward ASAP.

Ask for an appointment with the consultant, he should meet you with her and asnwer your questions.

It's not always about raising merry hell, but being persistant and clear about what you want for your relative.

Posted 1 year ago #

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