Newly Diagnosed Parent

[MissyJ]

Hi all, Im new to the forum and hope someone can help. My father just spent 14 days in the hospital and was diagnosed with MDS. They took bone marrow biopsy and there is no conclusion as to what category he fits in. He is transfusion dependent every 4-5 days for platelets and every 5-10 days for RBC. No other medication is being administered at this point. My question is what is normal for transfusions, I know people are different but what my father is going thru seems like a lot to me. He is not a candidate for bone marrow transplant (edited). Can anyone shed any light?

Thanks

[bailie]

Very sorry for the diagnosis. The BMB results will "shed some light" on the situation. There are so many variables with MDS. How long has Dad been needing transfusions? Does he have other health problems? Age is also a consideration.

This forum will be helpful for any questions you might have. The more information you can present the better the answers you will get.

I wish your father the best.

[riccd2001]

One of the most useful things you can do for/with him is to keep an ongoing record of the details of all transfusions - temps, blood pressures, donated date, volume, pre-meds, reactions if any, CBCs etc.

[MissyJ]

bailie - Dad has been transfusion dependent now since 12/20/14. He has a laundry list of health issues - Diabetes, High Blood Pressure, Atrial Fibrillation, Plural Edema and is 75 years old. His last transfusion was on 1/6/15, he was sitting at 10 for platelet count and he rec one bag of platelets. We went back to dr yesterday and he was only at 12 on platelet count, Hemoglobin at 10.

riccd2001 - Thank you I have a detailed list started already for everything, so we have check points.

[bebop]

why is he not a candidate for bmb? I thought that was the only true way to get mds dx. my dad was on a lot of transfusions as well. prayers for you and your dad.

[MissyJ]

Sorry bebop - I meant transplant...No Bone marrow transplant.

[bebop]

oh ok hon. My dad didn't either. I am here for you any time!

Elaine

[Mseth]

Hi MissyJ,

Sorry that your Dad has MDS. My mother's diagnosis happened in April 2013, almost 2 years now, she is red cell transfusion dependent since diagnosis. We had never heard of MDS and it took long to come to terms with it. Like your Dad, she too is not a candidate for transplant, given her age, and that we are in India. Though we have never discussed in detail, transplants are done in India only upto 50 years of age, I think.

After transfusion she feels fine and is able to manage all household chores independently. The world outside can never know she receives 'blood' regularly, unless they are told. Of course, the patient and caregiver has to come to terms with frequent hospital visits.

After diagnosis, the usual treatment protocol was tried, EPO which helps several people increase their Hb did nothing for her. Depending on your Dad's type of MDS and risk category, you will receive some treatment options, or the option of supportive care, which essentially means transfusions as and when required.

Hope things will be better for your Dad and you as you go along.