Stem Cell Transplant Decision & Success

Jeff, don’t count out what your body can do. Yes it’s a challenge but keep your goals high, keep pushing hard, eat healthy, get sleep, workout and keep your mind in a positive direction. I got hypnotherapy to power my mind. I had AML in 2023 and then a bone marrow transplant. I am 70 y.o. And after all that treatment to save my life I was so debilitated and weak I sat on a curb to rest and couldn’t get up without help. This year I attained my goal to hike to the summit of a 14000 foot mountain which I did, Mount Bierstadt, in Colorado. I can row 10K meters on the rowing machine in the gym. Don’t underestimate what level you can reach in your recovery. Time and grit, you can do it. A famous Sherpa said “the mind gives up before the body”. I wish you all the best!!

I am so happy to hear about your positive recovery. As you know, we need this type of encouragement as we weather the recovery storm.

Speaking of Colorado, I received an invitation to run the next Leadville 100. That may be a dream at this point but I was very appreciative to receive it.

Thank you again for sharing. I wish you all the best.

@jeffhampton I just posted a new discussion this morning with you in mind. You’re going through a metamorphosis right now during your recovery from your BMT.
Symbolically, the monarch butterfly became a theme, post-recovery for me. Takes a while to dry those wings off though after emerging.
The first year post transplant can be a very tough year…physically and emotionally. For those of us who were over achievers before-hand, we’ve had to learn the art of patience during recovery. It just simply can’t be rushed. There’s a mourning period to pay respect to maybe some activities we’ve lost. But it’s also a time of reinvention. Our bodies were designed to heal…time, and perseverance and sometimes meds! ☺️

Here’s the link to my new discussion. I hope you’ll join me there. Also tagging, @g4c whom I know has reinvented himself!

Post Bone Marrow Transplant changes…rebuilding your identity!
https://connect.mayoclinic.org/discussion/post-bone-marrow-transplant-changes-rebuilding-your-identity/
We have within us a Spirit of Endurance which is seriously tested during this process of healing. The frustrations are real but the rewards can be many…especially our 2nd chance at life. Hang in there, Jeff, this gets better! What are your biggest challenges right now?

@loribmt thank you.

My biggest challenges currently are joint and bone pain, endurance, fluctuating blood counts, and memory loss.

@jeffhampton. Good morning, Jeff. As a marathon runner, experiencing the joint issues, bone pain and lack of energy have to be incredibly frustrating for you. You mentioned in a previous comment to another member that your blood numbers are decreasing. Are all your numbers, including lymphocytes down? What is your chimerism? Do you experience any GVHD?

@loribmt my hgb, wbc and plt are the primary counts declining. Lymphocytes are a little low at 0.92 but have been steady for months.

I am 97+% engrafted and not experiencing any GVHD.

@jeffhampton
I assume that you have tried Claritin for the bone pain, that really helped me

@jeffhampton Curious if your doctor has discussed the possibility of a DLI (donor lymphocyte infusion). This is an infusion of lymphocytes from your donor which may give an extra nudge to a sluggish immune response if there is a mixed chimerism. Sometimes that’s all it takes to get the numbers (and chimerism) where they need to be.

I know you’re feeling so discouraged right now but hang in there, Jeff. It gets better! Like I said before that first year can be really challenging…tests one’s mettle for sure! Especially having a lower hemoglobin and being a marathon runner. But give yourself some grace. Your body has been through ‘heck and back’ and it takes time to heal from that level of trauma. So as frustrating as this break from running is, this is the time to do down time maintenance on your body. Rest, recovery, healthy foods, plenty of water, low to moderate exercise, and more rest. Let your body, mind and soul recover while setting future goals. Do you think, even if you can’t enter the race, you’ll still attend the Leadville 100?

@g4c, yes. I have taken daily for two years. It has never worked very well for me.

@loribmt thank you. I probably won’t attend Leadville. We have other trips planned. If the doctor lets me we plan to head to Europe in the spring.