[debra]

I am probably going about this the wrong way but I am exhausted sad and confused so I am going to give this a shot. I apologize if this is infringing on anyone else’s “post” but I could not figure out how to begin my own post. I am writing about my dad. He was diagnosed 18 years ago with MDS low risk. Has done really well until about 3 years ago and is now transfusion dependent. He is 82 years old and getting 2 units every other week and even then hemoglobin hovers around 6 (at best). We were told today he has shifted to high risk and they want to do another BMB (last one in 2011) and possible start him on Vidaza. I absolutely cannot see putting this man through what appears to be an incredibly time consuming, physically brutal regimen at his age. And he is not in great health otherwise. I need honest opinions. I read horror stories where people say if they had known how rough it would be they would never have let their loved one go through it. They would have just gone for quality of life over quantity. My dad highly values my opinion and at this point I do not know how to advise him. Thank you to anyone who can help.

[debra]

Hi Cristy! This is my very first post as i just joined last week. My Dad also has MDS. He was diagnosed at 61. All I really know is he is low risk. He has refused another biopsy since the original one where he got the diagnosis. We were devastated when we got the news and me and my sisters thought he would quickly develop leukemia and be very ill. Fast forward 21 years to today. While he has become transfusion dependent in the last year, he still works, hunts, lives alone and is fully functional and self sufficient, tho he does everything a little slower. I think the biggest piece of advice I could give is to always treat each day as if it could be the last and let your dad stay in control as long as possible. A few years ago my dad drew up his will and healthcare power of attorney stating what his wishes are. He is ready to go when God sees fit to take him and we fully support his wishes. No one can tell you how the course will go with your dad, everyone is different. A great source of info is the FB page called MDS Caregivers. Ask to join the page. Best of luck to you and your dad.

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