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

I sure will!!!❤️🙏

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.

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?

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.

Hi @pgcdds Oh gosh, I’m so sorry your friend is having such excruciating abdominal pain! Severe pain isn’t usual but it isn’t out of the realm of possibility. I hope she has talked to her transplant team. They need to know this ASAP.

What type of stem cell transplant did your friend have? Was she able to use her own cells or did she have donor cells. If these were her own, the pain can be a side effect of her conditioning chemo or medication or myriad other influences. If she had donor cells this could be a sign of Graft vs host disease. Or again, the side effects of chemo and meds. Either way, this needs to be addressed very quickly to find the cause.

Let me know, ok?

Hi Lori, thanks so very much for your concern. She had an Allograft performed on 11-22-22.

With your friend’s allogenic transplant she’ll need to be very vigilant with any new or unusual symptoms. She should not hesitate to inform her transplant team. Nothing is too small to report!
During the first 100 days of transplant, small infections or irritations can get out of control quickly because of her impaired immune system. The chemo used prior to transplant is very harsh. It cleans out the marrow so that the newly transplanted cells will be able to set up ‘housekeeping’ in a pristine environment.

Chemo destroys rapidly dividing cells, whether cancerous or normal cells in our digestive systems from mouth to intestines. So, very often there is painful irritation in the mouth and esophagus and sometimes of the stomach and intestines. This can cause nausea and diarrhea depending on how deeply irritation penetrates beyond the mucosal tissues.
Conditions can become acute and trigger graft vs host disease. That’s why symptoms need reported and treated quickly.

After about the 100 day mark, the body and new stem cells start playing together better and the new immune system will not be quite as aggressive. Reactions that used to develop quickly, will generally transpire at a slower rate.

The next 2-3 weeks should be the worst for your friend. Her blood numbers will start dropping as the chemo kills off her old blood cells. Her new stem cells should engraft in about 12 to 15 days(sometimes longer) and start producing new blood cells; Red, White and Platelets. At that point she’ll start feeling better slowly as the white blood cells run to the rescue! ☺️

She’s going to feel extremely low in energy and possibly spirits until that happens. There’s no way to rush engraftment so just be supportive and let her know she’s going to get through this!! There is life on the other side of transplant and it will be worth the effort…she’s getting a second chance at life. ☺️

I’m here for her (and you) any time. There are a number of us in the forum who have had allo transplants and will help bolster her up! Don’t hesitate to reach out.

Are you her caregiver during her transplant journey?

Thanks so very much Lori.

Good morning, @pgcdds I just wanted to check in with you to see if your friend is feeling any better. We chatted 4 days ago and at that time she was experiencing severe abdominal pain. There are many medications at the disposal of her transplant team to help her get through the worst of the side effects. I felt like my team of diligent nurses were my guardian angels!
With her transplant being only 10 days old, she’s coming into the thick of things right about now. But within a few days when her new stem cells engraft, she’ll begin to feel much better. Let her know this is just temporary. It’s worth the fight! ☺️
Do you get to visit with her in person?

Thanks for reaching out. She is much improved, attempting to again eat solid food. Blood counts are improving. Apparently the pain is now manageable without oxy.

We continue to remain prayerful about her recovery.