[MDSPerth]

Hi, my name is Sandi. The 17 July 2012 - a day we will never forget - my partner (of 25 years) Paul, who by all accounts appears to be in good health, was diagnosed with MDS. Paul went for what he thought were routine blood tests on Saturday 14 July. On Sunday 15 July he received a 9.00am phone call from his doctor to advise that he had anomolies in his blood counts and that he would like him to go see a haemotologist. Paul very nicely advised that sorry 'no can do for a couple of weeks, we are off on holidays to Bali'. The doctor very promptly advised 'oh no your not I will be getting you into a specialist as soon as possible'. So on the 17 July, at 9.00am Paul found himself in the office of a specialist being told that he had a bone marrow biopsy scheduled at 10.00am as he suspected from his readings that he had AA or MDS oh, and by the way go home and cancel your trip to Bali as your Neutophil count is at 0.35 and there is no way you would be able to resist any infections. To say we were in state of shock is an understatement and we continue to be in constant disbelief.

Life since then has been a series of blood tests and visits to the haemotologist. To put it shortly we have been advised that because of Pauls -7 and +8 chromosome abnormality and because he has the 3 cytopenia (in his favour, he has low blast cell count) he is in the lower side of high risk category. Because of his low blast cell count he is not a candidate for hypomethylating drugs such as Vidaza etc. Currently he is using EPO and G-CSF growth hormones and several anti-fungal/anti-viral tablets. His white cell count and neutrophils (risen from 0.35 to 6.9) have responded fantastically, however sadly his haemoglobin (94) and platelet count (24) continue to drop.

Paul has been advised that he is to proceed to a BMT sooner rather than later if a match can be found. He has a brother and sister living in England and we currently await the results of their testing results. Unfortunately for us, the Australian government says that until your siblings are outruled, the BM register cannot commence the search on the international register. So, we are keeping our fingers crossed for a donor match somewhere.

I have read the Marrowforums and found it very interesting to read other patient/carers views as, it is very rare to find anyone that has even heard of MDS let alone have the disease. It is so confusing also in that there are so many variations in the disease. I read about RA, RARS etc but the haemotologist that Paul is under advised that he did not fit neatly into any one of these categories?

We would welcome comments, chats, feedback from anyone out there that can spare the time and maybe help dispell some of the confusion that surrounds us.