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Old Fri Apr 13, 2012, 12:13 AM
milliken2 milliken2 is offline
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Join Date: Apr 2012
Location: Ellwood City, PA. U.S.A.
Posts: 163
E.T. - really are my husband's initials - 65 yr old

Neil;

Thanks so much for replying to me. Regarding my husband - whom I affectionately refer to as E.T. and those really are his iniials - his health has been downhill over the past 7-8 years. At about that time - 8 years ago, he was diagnosed with A.P.S. - Antiphospholipid Antibody Syndrome - or in laypersons terms - sticky blood. He was put on Coumadin for about 3 years - then had 3 D.V.T.'s in his left leg - he ultimately was put on Arixtra injections - but of course hasn't received any since his platelet count has rarely been above 40,000 for the past several months. He has actually received 82 pints of blood and 6 units of platelets since the middle of August - 2011. He also has Leukocytoclastic Vasculitis - and is currently on a maintenance dose of 5 mg Prednisone twice a day. If he get an exacerbation of the LV - I adjust his Prednisone. But - he was still able to do house things - like mow the grass, walk to the mailbox, etc. Now - with his blood levels being so low - he doesn't have much energy for anything.
We live in Pennsylvania - but have been wintering over in Florida for the past 5 years - mainly because him being on a blood thinner - the cold bothered him. I am almost wondering if the continued injections of Arixtra could have contributed to his current MDS. The hematologist we found in Florida thought Earl had MDS even before he had the bone marrow biopsy at Moffitt. He wanted to treat him with Vidaza then - but I didn't know the Dr - and I called our Pittsburgh Drs to get their opinion - and they flatly told me no - DO NOT have him start on Vidaza - so we declined treatment at that time. Then - we went to Moffitt in February, and they did another bone marrow biopsy there - and they said definitely he had MDS - RAEB 1. By that time, it was so close to our returning home that the Drs. there said we should wait till we got back here to start treatment. So - that's what we did - saw our PGH doc on 3/27 and then saw the local oncologist/hema here the following week. He also agreed with the Moffit dx - but wanted to do another bone marrow biopsy and send it to an independent lab for reading - and it too came back with a positive dx of MDS - RAEB 1. We found this out today, but the Dr. has already found out that I won't sit back and wait for treatment. When we first went there last week for his initial chemo treatment, they did a CBC and his hemoglobin was 7.9. I asked if they were going to transfuse him - and the nurse called the Dr and he told me he wanted to wait. I said a definite no - as I know how ET gets when his levels drop - and he agreed to one unit of packed RBC and a chelating agent to get rid of excess iron. A week later - this past Monday - his Hgb was down to 7.7 - and I again had to push for 2 units of blood - one just does not bring him up. We missed Easter dinner with the family since he was too weak. I am trying to learn as much as I can, and I did get some literature from their office, but will definitely take advantage of the links you sent me.
Again - thank you for your help.

Beth
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Beth - R.N., B.S.N and wife of recently diagnosed husband who has been classified at stage 4 MDS. and I can't help the one I love the most.
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