Hypoplastic mds

Please post here your experiences of MDS as a patient, carer, family or friend

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AlanF
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Re: Hypoplastic mds

Post by AlanF » 11 Feb 2013 16:55

Spoke too soon. Back in hospital 7th Feb with another infection, fortunately in through day care and not A&E.. Don't understand because neutrophils have risen to 0.9. Still with no energy, waiting for culture results to have specific antibiotics, looks like at least another 7-10 days. That will make a total of 95 days in just under a year!!
Alan
chris
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Re: Hypoplastic mds

Post by chris » 11 Feb 2013 19:24

Dear Alan.

Oh dear. So sorry to hear that. That's a lot of time spent in hospital. Poor Theresa and with an improved neutrophil count too - though I think there are issues around quality of cells as well as the straight numbers of cells? Glad that your access to treatment was better though. At my local hospital I was given a specific ward to ring in the case of a sustained neutropenic fever. And I guess it may not necessarily be a bacterial infection? Hopefully the culture will show up whether antibiotics are needed. I think the infections must also contribute to more fatigue while the body is fighting it.

Hope Theresa feels better soon.

Best wishes

Chris
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
chris
Posts: 624
Joined: 01 Dec 2009 21:52
Location: Essex
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Re: Hypoplastic mds

Post by chris » 25 Mar 2013 12:55

HI Alan

Am posting this reply which was on Gavin's topic back on Theresa's topic as otherwise have hi-jacked Gavin's one! Sometimes difficult to know which thread to follow!

Glad that Theresa is feeling a little better and having fewer transfusions. That must have freed your time up enormously - not having to make such frequent treks to hospital! Yes, hope you can get some time away - it will do you both a power of good to go somewhere beautiful.

Also so glad that the pension and arrangements for Theresa stopping work have come through OK - something less to have to fight for and worry about.

Are there parts of the world where French -Indian heritance is more common - presumably French protectorates? A friend of mine lived on La Reunion in the Indian Ocean. My guess is they don't have huge donor banks there but the donor bank international system for re-visiting sounds as though it is effective. Can only keep hoping somebody will turn up. Is a haplo-identical transplant ( with a child as donor?) a possibility - they seem to be doing more of those lately with increased success.

Best wishes

Chris


Hi Gavin
Theresa has been on the register since last Feb but with no success. This is basically because her genetic make up is rare, her maternal grandmother was half French and half Indian. She has what they call HLA antibodies (described as little flags on her cells) which also makes a match harder to find. I understand there is a sort of computer sweep every 3 months of all new and existing donors registered which I think is around 14 million worldwide. If you are lucky enough not to be too out of the ordinary I think you should have a good chance. They won't consider much less than a 10 out of 10 match as the risk of GvHD is more acute on lower matches. Theresa is at present not too bad with platelets now just one bag per week, she went 3 1/2 weeks between blood transfusions this time (but Hg was down to 8.3 by then) neutrophils at around 0.8, early days would indicate that the ATG has given her some improvement in being less transfusion dependant.
She has also had the green light from her pension trustees and they are going to pay her early on the grounds of ill health. Her employers are going to release her as the consultant has advised she is highly unlikely to ever be well enough to return to work? As long as the infections don't return (difficult when you've got a Hickman line) we are looking to have some days away. Been a long year.
Regards Alan
Chris. (F) Age 69 (2019). MDS diagnosed in 2008. Sub-type CMML-1 but with anomalies! Normal-ish red cells, low white cells and platelets, slightly raised monocytes. Enlarged spleen. No current treatment - active monitoring 3-
monthly.SE Essex
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