My Bone Marrow Transplant (BMT/SCT) story: Will you share yours?

My close relative had a Stem Cell Transplant 5 days ago. Today she is experiencing “ excruciating “ abdominal pain. Is this severe abdominal pain a normal post operative problem following a Stem Cell Transplant?

My thanks to all who respond.

Good morning Debbie! @maguiregirl. You’re fortunate to live fairly close to your Mayo Clinic in Arizona. That will make followup appointments a little easier for you. You’re having what’s referred to as an allogenic stem cell transplant because you are not able to use your own cells. So that will extend your stay near clinic a little longer as the transplant team needs have you nearby for observation.

Mayo bone marrow transplant patients are essentially “out patients”, so we aren’t confined to the hospital itself for extended stays as in some clinics, but are required to remain near the clinic for 100 days. Being 40 miles away, that may allow for you to be home at an earlier exit date when your team feels you’re stabilized enough.
Usually, barring complications, the next day after transplant we’re released to our long term lodging (in the hands of our caregivers). Mayo has statistically found that patients recover faster with less chance of infection risk by not staying in a hospital setting. That way we’re free to walk around in our apartment, walks outdoors, go to the kitchen and grab food, etc. We return daily to the clinic for blood work.
So, lodging nearby will be most important for you and your husband. I’m not familiar with Scottsdale but for convenience you’ll want to find a hotel, apartment, etc, with a kitchen to make life easier.

You asked how long I was in the hospital after the transplant. https://connect.mayoclinic.org/comment/777770/
On my 3rd day of 5 days conditioning chemo, I was admitted to the hospital as is standard. There’s a day of rest after the chemo and then it’s day Zero when I received my donor’s cells. Since my infusion was at 11:30 PM, I stayed overnight but was released the next day in the early afternoon. It’s so anticlimactic! For months our lives are about ‘getting a bone marrow transplant’ and then it happens and we’re like…huh. 😅

The few weeks to a month, can be a bit rocky with nausea and side effects of the chemo and meds. I was readmitted a week later, to the hospital for 7 days with a few little issues but the transplant teams are ready for any contingency and I was well taken care of…it was amazing.

Each one of us is different in what we experience. Usually, fatigue and nausea are the 2 most prominent issues. But again, trust your team to get you through it. Let them know if any new symptoms develop. They do need to know if you have tummy issues, pain, nausea, skin rashes, etc. Our bodies go through a great deal when the foreign stem cells are introduced.

With a BMT, there are always a few surprises so I laughingly tell fellow transplant friends that it’s important to keep a sense of humor and a sense of adventure. You’ll get through this! And it sounds like you have a really great support team and that makes a huge difference too.

Have you found a place to stay yet?

Very happy for you. DX (diagnosed July 11th 2021, thought doctor was being humorous because we
where joking around while talking to one another. Rare leukemia, known has killer cells short name for it.
Transplant in August 2022 feeling good, had black lines on my nail- beds before I even had transplant, went away. Just got my appetite back lost for 2weeks, Since I have been in hospital for day. On IV Abt(antibiotics) , heparin (blood thinner) NS(normal saline) . I was told after one year celebrate, however every day I am alive is reason for celebrating. Praying for everyone . Christ has been sending people who will allow "HIM" to work through them. So grateful, humble for everything, I will be that living testimony that's how I see my out come no matter what hurdles I go through it's OK for me to weep because Jesus Christ wept. This is my own belief.

I sure will!!!❤️🙏

Ohhhh my gosh! There a zillion reasons to smile in this post!
Having a private jet ride home is like the icing on that cake for sure!
You look fantastic and healthy. Don’t force the recovery…it takes time. Fatigue will be your friend for a couple of months. So listen to your body when it says it wants a nap. They’re guilt free at this point. LOL.
But I also understand the frustration when you’re feeling great and just want to get back at living life to the fullest!
Thank you so much for posting these pictures and your positives report after your autologous stem cell transplant. We never know when our stories will help out someone else going down the same path!
Keep me posted on your recovery, will you? ☺️

Hi Lori!
You have a great memory!
I’m Day +30. I was released from the hospital on day 18. A friend of mine flew to Rochester in his private jet and took me home!!
I’m doing pretty good. Trying to regain my strength and general fatigue are my biggest issues right now. I have a good appetite but don’t eat nearly as big of portions as before.

I did have a rough 5-6 days during nadir period and was readmitted to inpatient. I had bad mouth sores but they started to heal as my blood counts began to increase.

I go back mid-November for my 100 day check up. Thanks for checking on me!❤️🙏

Good morning, @hopefuldaughter How is your father progressing with his heart issue? Will he be able to follow through with the stem cell transplant?

Good morning, @capthondo
Nosy me popping in to see how you’re doing. By my reckoning, your about 1 month post transplant. Are you home or still at the clinic?

@becky1024 Thank you for responding. I think a “strong will to live” is often overlooked when assessing one’s outcome, but I firmly believe that strong will is certainly a FORCE to be reckoned with! …and it certainly sounds like it has served you well, as you’re still here fighting. I shall definitely share your well wishes with my Dad and also ask him to channel his WILL to work for him! Thank you. Sending you wishes for comfort and strength in all of the days ahead!❤️

I don’t know if this is any help but I was born with a rare defective heart. I also have MCUS with a precancerous condition, which is progressing into a Non Hodgkin’s Lymphoma. After 3 heart attacks triggered by the defect, I received a stent in my left Atrial Chamber. My problem is this after talking to my Oncologist Hematologist, I could be severely impacted on what treatments could be administered to me once the cancer fully develops. She was honest with me and said any treatment she might give me could kill me. What she did say was that any procedure done on the heart is very hard on it. My only opinion is do nothing and let the cancer kill me or use the safest treatment she can use and hope it doesn’t kill me. I guess my strong will to live will make the final decision. I hope all goes well and he survived the procedure. Good luck, @becky1024