Blood Transfusions every 3 days and Platelets every 4

[Jerrys Daughter]

My Dad was diagnosed with MDS in August 2010. He is now getting blood transfusions every week sometimes 3 times a week HGB and PLTS every 4 days. I am worried his disease has progressed but because his platelets are so low they will not do a bone marrow. Will they stop transfusing him because he is having so many or what does this mean.
Thank you in advance for your help!

[Hopeful]

Hi,

I am really sorry to read that your dad is requiring such frequent transfusions. This is not a good sign. Does he have any other symptoms?

How much of an increase in counts is he seeing right after a transfusion?
Are they doing antibody screening/HLA matching for both his RBC's and platelets before each transfusion?
How long has he been getting transfusions?
What is his age?
Has he been tested for PNH?

If his clotting factor is good, they may be able to do a BMB right after a platelet transfusion. I use to have them when my platelets were in the low teens with no incident. However, if his platelets are much lower, there may be an issue.

I hope they can quickly find the cause of this. Be strong!

[PaulS]

Hi - I'm sorry to hear about your father's struggles - I'm sure this is very difficult for you.

You didn't mention you father's age or if he is a candidate for a transplant or if they are trying any other therapy -

In my experience having lost both parents - and as a father with a life threatening condition - I offer this advice.

While its natural to want to keep fighting and hope for more time - its important to make sure the time you have left together is meaningful and filled with love - ask any questions you want to ask - don't forget to tell him you love him - often. Focussing on doctors and treatments can be a distraction (sometimes welcome) but its not necessarily how much time you have left together - but making sure the time you have is spent well.

Best wishes,
Paul

[Jerrys Daughter]

Thank you for your kind words. My Dad is 78 and has had MDS since 2010. I enjoy every minute with him. Even if it is spent at a hospital. I do all the driving to and from appointments and so we try to use this time to talk about any and everything that is a good memory. I am sorry about your parents. I appreciate your reply.

[Jerrys Daughter]

My Dad is 78 yrs old and was diagnosed in 2010. His blood is not holding very well. It says around 7.1 and has been as low as 5HGB PLTS 7 to 10 seem to be the average and he requires them 1 to 2 times a week. His blast were 12 but after the first Vidaza treatment they went to 3. Vidaza did not work for any of his other counts so they took him off of it. He had trouble with his bladder and now has a catheter. He has been hospitalized 6 times in 8 weeks. MRSA virus-cured-Fungal Pneumonia-treating it now with Antibiotics-doc says it is small but is in both lungs. Every week it seems like something new. His white count is 1.8
Yes they do Antibody screening as his blood is now rare full of antibodies. Hard to find and takes a day to locate it. No test for PNH
Thanks for your reply. I feel like we are at the end of his disease and I just don't know what to expect or how long I have left with him.

[Hopeful]

Your dad has been through a lot. The constant infections are probably not helping things.

I think Paul offers excellent advice...Shower him with love.

My thoughts are with you and your dad.

[bebop]

I am sorry you are going thru this. At this point my Dad's dr said transfusions were no longer working and stopped all transfusions. Both blood and platelets. He had to have the anti body blood as well. Dad lasted just over a year from diagnosis. Again I am really sorry. If you want to pm me please feel free to hon.