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Stem Cell Transplant & Recovery
Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 9 hours ago | Replies (10)Comment receiving replies
Thank you, @loribmt
Fortunately I live within 35-40 minutes of Barnes Hospital here in the St. Louis area. I am very lucky in that regard. I am also fortunate to have my wife, one of my sisters, and two of my 4 daughters local and willing to help whenever necessary and needed.
One of my daughters is my donor. She is a half-match, whatever that means. It was originally going to be my brother who was a full match but a health issue prevented him from donating.
I really appreciate you and others taking the time to respond. I have read through some of the experiences of other members from the links you shared last week. Honestly this is the first time in my life that I have feared anything. I have ran 50k races and, hopefully will run some ultramarathons again, competed in many other athletic endeavors and have never felt fear or intimidation. But this transplant is a huge cliff and it has hit my fear of heights, so to speak.
Thank you again for the guidance.
Replies to "Thank you, @loribmt Fortunately I live within 35-40 minutes of Barnes Hospital here in the St...."
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Jeff, I’ve mentored many people through their transplants in the past 5 years, in Connect and locally. I also follow a number of organizations who are great sources of information, hope and inspiration for BMT/SCT patients and caregivers. So I’m aware of the stories others share of their successes.
Many of us are able to pretty much resume our normal lives after a year or so of recovery time, though it can be impacted by pre-existing co-morbidities. Granted, we’ll never be 100%. Our immune system, though new and functioning, will never be as robust as our factory installed model. But generally we can be healthy, active and resume much of our previous life activities. I know several people, a year or two after transplant, have participated in 100 Mile Bike trips, run full marathons and 1 guy jumped right back into his triathlon training. He did have to take a year off after realizing that you can’t rush recovery.
I was 65 at the time of my transplant. 3 weeks prior to being diagnosed with AML, I had still been walking 10 miles daily. I’m now 10 days away from my 71st birthday and still walking about 8 miles daily. I could do more, but a couple hours of my time is now spent on Connect. ☺️
The healthier we go into transplant the easier our recovery seems to be. I walked 4 miles daily around the bed tower in my hospital, while undergoing cancer treatments for AML. I was an inpatient for a week, every 28 days. Walked as much as I could with the transplant too. Though, honestly the first couple months are devoted to resting and gaining stamina.
Here are two of the links to which I was referring earlier. They’re both great informational sources:
National Bone Marrow Transplant Link https://www.nbmtlink.org/?fbclid=IwY2xjawHquylleHRuA2FlbQIxMAABHWxqcOwKbY4Hi4UykaRZDGJLl56FKNtNy8cEOLeWuehiVebmELb76LuMtg_aem_dvtr5gJs4Yqd7yoacNguBw
And: National Marrow Donor Program
https://www.nmdp.org/
I think as you prepare for your transplant, getting all your ducks in a row and start the pre-testing, you’ll find you just go with the flow. You’ll learn to trust your transplant team as they become your new family for a while. This isn’t their first rodeo and they will do everything in their power to keep you comfortable and safe through the journey. You’ll learn a new vocabulary, you’ll gain an appreciation for the science and technology making this possible, you’ll gain a new fascination for blood chemistry and how miraculous our immune systems are…and, you’ll get through this…coming out on the other side, feeling rather super human. ☺️
I’m here any time for questions or concerns.