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Bone marrow transplant caregiver

ShannonS
Posts: 3
Joined: Dec 2003

My mom had a allogenic bone marrow transplant in September. We have been staying about an hour from home for the last two months to be close to the Dr. and cancer center. She is sleeping all the time and I have to push her to eat anything and to take her pills which there are a lot of. I am constantly worried about every single thing, her blood counts, is she experiencing graft vs. host disease, how vain get yet to do her mouth rinse, etc. it is a lot and it takes every bit of patience in me at this point. I love my Mom but sometimes I just want to yell at her to get up, take her pills and eat something! I am not in her shoes so I really have no clue how she feels because she has a hard time articulating, has anyone bees caregiver to a transplant patient?

I would live some common stories or experiences to know I am not crazy!

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

Shannon,
I got married in May and in July found out my new husband has Stage IV BOT cancer. He is in treatments, but things are not going according to the rule book. He has been hospitalized multiple times and has high calcium levels. He eats from a PEG tube and I have trouble getting him to turn it on to take his meds and food. He sleeps all the time and I have to worry about everything involved in his treatment, my job (which I took a medical leave from, but they still are putting pressure on me) and life in general. I have always been seen as the strong one, but now I feel so weak and helpless. I want to scream out why me? I know it's not his fault, but this is not how I wanted to spend our first holiday together. That and the fact that I might not have a second set of holidays with him terrifies me.

leprechaun2
Posts: 73
Joined: Jul 2011

My hub had an autologous bone marrow transplant. These are easier than the donor ones. It knocked him out for a while and it took more than a year for his counts to come to WNL, within normal limits. His hair fell out and his tastebuds were gone for months. I still have to give him his meds, his diagnosis was PCNSL. But his BMT has kept him cancer-free since 7/7/10!!!!

Let me know how you are doing. It is a rough road but so worth it!

VivianLee5689's picture
VivianLee5689
Posts: 546
Joined: Aug 2012

My husband was diagnosed with primary plasma cell leukemia on 11/26. He has been in the hospital since that day. We got word today that he will most likely have to go to a long term treatment facility because he needs so much care. The doctors are saying with treatment he may live several months. That is not comforting.

leprechaun2
Posts: 73
Joined: Jul 2011

So sorry that you both are in such pain. You are in my prayers.

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