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Stem Cell Transplant Decision & Success
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: Jan 12 8:07am | Replies (72)Comment receiving replies
@lmkmom I’m doing ok. Everyday seems to be a new adventure in recovery. An example; up until a month ago I was taking medication for low blood pressure and then it flipped causing me to take medication for high blood pressure.
My blood counts have been depleting lately but they tell me I’m not relapsing. The issue there is fatigue caused by low hemoglobin.
Recovery has and continues to be challenging. I told my doctors a few months ago that if they would have been straight forward with about all of this I would not have gone forward with the transplant.
I guess I would just like to have a normal life again and I’m not sure if that’s possible. My normal is being able to run ultramarathons, not get tired so quickly, not having all of the joint and bone pain and actually being able to remember the things people tell me.
Anyway, I appreciate you reaching out and I’m sorry that most of this sounds negative because at the end of the day I am grateful to be alive.
I hope you are doing well.
Jeff
Replies to "@lmkmom I’m doing ok. Everyday seems to be a new adventure in recovery. An example; up..."
@jeffhampton While I was recovering from my SCT, I also thought that I would never put myself through that again. My recovery was brutal and painful slow.
I am over 9 years post transplant. I’m not in the same shape I was before AML diagnosis, but I have come to accept it as my new life. I feel like I’m a different person from the one I was before. My priorities have changed and I appreciate small things more than before. I have recovered well and have been working full time for the last 7 years. My life is very fulfilling and my cancer and transplant journey has given me a new direction in life, which makes me look at all the suffering with some sort of appreciation.
I know you are dealing with day to day pain and limitations that are very discouraging. Keep taking one step at a time towards recovery - you will get better and your life will get better!
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@jeffhampton
Thank you for coming back to post. Time is what you need. I will say I have felt good for most days, but for some reason today I am full of energy and more. What changed? A crown at the dentist? Our bodies in a transplant are adjusting. I thought MDS was not a big deal, but tread something though the City of Hope where I was treated and the American Cancer Society and found out it is rare in ways.
I found my memory remains the same way. I use my notes and calendar on my phone to log stuff I know I want to remember. Keep us updated. I hope you will build back your health to be the ultra-marathoner you wish for again. For me, I started walking every day in 2024 May after my transplant and only now started adding jogging. Running is nothing i have every enjoyed. 🙂
I believe as Lori often does, that we help each other know we share many of the same side effects. Being grateful to be alive is a gift.