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Snapshots of hope: Life on the other side of transplant.
My husband snapped a photo of me walking on a beach this morning. I was running through the surf, picking up shells, smiling and feeling on top of the world with unabashed joy for being alive and healthy. So what?
Well, it’s a photo that wouldn’t exist if I hadn’t had a bone marrow transplant. It’s a snapshot of hope!
Three years ago today I was diagnosed with Acute Myeloid Leukemia, an aggressive blood cancer and fighting for my life. Prospects of ever being able to walk a beach again seemed beyond reach.
With a lot of chemo, I achieved remission, but my only hope for a future would be a bone marrow/stem cell transplant as the cancer would likely return. Let’s just say, that procedure isn’t a walk on the beach but it gave me a second chance at life and well worth the arduous journey it took to get here!
Along this journey, I’ve been able to help inspire and give hope to others who have faced my same battle. I’m alive, surviving and thriving because of a gift of life from my anonymous donor.
When facing a transplant, whether it’s stem cells, or a solid organ, it can be a daunting prospect. I think a gift we can give, as transplant survivors, is to share our positive transplant stories with anyone who is about to undergo the procedure or is in need of reassurance in their recovery.
Show me your Snapshot of hope! What photo do you have that wouldn’t exist without your transplant?
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Hi @myfablife. Hearing a no-go for stem cell transplant had to be very frustrating. I’m wondering if your denial for the transplant is because of the liver transplant and your chronic kidney disease? The pretreatment chemo and the transplant itself can impact the liver and kidneys…both with toxicity levels and the potential for graft vs host disease.
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2 ReactionsI am sorry to hear this for you, I was dx with AML with a mutation also. I was praying I could get stem cell TP but denied by 2 facilities that would have been my best chance, now it seems I will be on chemo/pill and pray I stay in remission. I did have a LTP 3.5 yrs. ago and have ckd also I am 63yo I am in excellent health but they feel NO. Extremely discouraging.
I pray and pray for you to get your TP.😊😊
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1 ReactionI have MDS. Intermediate high risk because of mutations.
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1 ReactionFantastic!! I, and everyone else here in the group, look forward to supporting you and your husband on this journey. As @loribmt says, you will be "Mayo-naised". See her spotlight here for clarity of the definition 🙂
- I’ll take an order of Hope with a side of Mayo, please! - Meet @loribmt https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/ill-take-an-order-of-hope-with-a-side-of-mayo-please/
Hi What type AML do you have, I was hoping for stencil TP but have been told no..
Colleen within moments of the message I sent you we got a message from the transplant team. Pending the donor’s availability we are scheduled to begin the process on July 22!!! We are thrilled and grateful although mystified how this is happening without doctor’s help?
SO THANKFUL.
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2 Reactions@dwolden, thank goodness you got the call and things are moving forward in a manner of speaking. But I hear you that you are worried and disappointed. As others have mentioned, this does appear to be out of character for Mayo Clinic, especially this department.
I encourage you to contact the Office of Patient Experience to share this unfolding of events and communication breakdown. I know they would want to hear from you. Here is the contact information:
Mayo Clinic Office of Patient Experience
https://www.mayoclinic.org/about-mayo-clinic/patient-experience
Phone: 844-544-0036 (toll free)
Email: opx@mayo.edu
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3 ReactionsWell after speaking to a clinic admin we got a call from an RN who told us doctor is on vacation. She suggested we schedule a video appointment with the doctor to get our questions answered which we will of course be billed for. We agreed to do that since it seems to be the only way we will learn what the care plan is. Scheduling called immediately and the first such appointment is two weeks out. My husband and I are both very disappointed and worried.
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1 Reaction@dwolden, I want to follow up to make sure you got the call that you were waiting for from your doctor's husband and that things have been resolved. Have you been contacted in the meantime?
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1 ReactionThank you very much for this reply. It does sound very similar to our situation, only no one is telling us when we can expect more tests or if more chemo will be scheduled. Talked to transplant clinic admin yesterday he said he would have my husband's doctor call us since "these portal messages don't seem to be working for communication." Waiting for that call.
Our best wishes for you too.
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