My story

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

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colin

My story

Post by colin » 12 Aug 2009 21:34

I am new to this forum and would first like to thank Nigel Smith and Sophie Wintrich for helping me overcome a technical problem of joining.I was first aware of my blood disorder after a routine visit to my local health centre in Dec 2005 when my white cell count was found below normal. In may 2006 I
was referred to my local haematology dept and monitored until in Nov 2007 whenI had a bone marrow biopsy . A diagnosis based on this confirmed that I have MDS Type RCMD 11Q -Y. I did not suffer from any symptoms of my low blood counts until Dec 2008 when I had an infection requiring antibiotics. also my red blood cell count had dropped to 7.5 . This was the start of my blood transfusions . I had 4 units then which took me up to 1st April 2009 when I had 3 units . since then I have had two more transfusions of 3 units. My white cell neutrophil count at present is around .3 ,and my platelet count around 30. I have been offered a bone marrow transplant in spite of my age being 69, by Kings college Hospital where I have received very good attention ( I have now to date had 4 bone marrow biopsies and did not find the experience too much of an ordeal.) . I am not encouraged by the success rate for this procedure at 40% and having read the booklet titled -
SEVEN STEPS , which runs through a 100 pages of potential risk I am reluctant to jump at what could be a complete cure, or the potential for long term pain and suffering and perhaps a relapse . This no doubt raises the question of is my glass half full or half empty. I am aware of the build up of iron and the other risk like
developing AML. At present I feel fairly well and able to carry out most of the things I have always done ie gardening ,archery and diy . Im on a course of Darbepoetin , which I self inject , but I will not know until the 24th Aug whether it has improved my red blood cell count. Thats it from me , I would welcome your points of view ,and would like to hear from anyone in the same age group or position as me.
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