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

Hi @katgob.
You’re curious about the outpatient protocol of Mayo Clinic. Here’s why…Mayo Clinic’s BMT program has found that people in an Out-patient environment have a lower risk of contracting infections related to a hospital stay and they are more likely to be out of bed for longer periods of time, which can help you keep your strength. On the practical side less hosptial time is less expensive. And outpatient services allows access to bone marrow transplant care for more people because hospital rooms are less used.

When I first learned that my BMT would be as an outpatient I was a little hesitant. Something this big, why am I not in a hospital? But honestly, as it turned out my husband and I both felt it was really a healthy and a more advantageous environment for us to live in our ‘home away from home’ which was a 2 bedroom/2 bath hotel suite with full kitchen. I was able to walk around more during the day (and night) instead of being confined basically to a room. I really felt that allowed me to feel less like a patient and my recovery moved steadily along. I had access to food at all times in our fridge where I could get up and find snacks myself when I had a fleeting moment of an appetite. Didn’t have to wait for ‘meal times’. Nights weren’t disturbed with routine vitals checks. Plus, I wasn’t in a hosptial environment which, no matter how tight the infection control protocols, they are germy places. Infection control is vital post BMT. But it is possible to do that offsite a hotel or apartment, etc.
In my career in the field of Dentistry, I was also the Infection Control Coordinator. My training gave me a head’s up in the world of germs. LOL I honestly felt I had more control over my environment in my ‘own’ suite than in any hospital. ☺️

This is how we kept germ free…We moved into our suite 2 days before I was scheduled to start the week of testing. We came armed with our own sanitation supplies. So my husband and I sanitized that apartment from top to bottom. We requested new shower curtains in the bathrooms which the hotel staff was quite accommodating. We’d brought our own toilet brush and cleaner so my husband did MY bathroom daily. Maid service did the cleaning in the rest of the apartment but my room was off limits. I had a clean sheet from home on the sofa so I could sit there if not in my room, even though we had Lysol sprayed soft surfaces. I wore a VOG mask except in my room where the door was closed often. My husband would mask up if we were together. This was before Covid…

It was basically the same as if I were living at home. If I needed to return to the hospital (which I did for 7 days) it was simple a phone call and I was re-admitted. I returned to the clinic daily for labs and infusions/fluids, etc.
My insurance paid for everything except the lodging. Had I stayed in my home state of Wisconsin, my insurance would have paid a stipend of $10K for lodging for my husband at a hotel. But we were insistent on Mayo where we were together in a suite offsite and I wasn’t confined in a room for a month. I’d been in my hometown hospital 5 weeks initially. Then a subsequent 3 weeks. 8 weeks of being in a hospital was enough! So by the time I had my BMT, I was quite happy not to be stuck in a bed all day. LOL.

Wishing you an ‘unremarkable’ visit with your hematologist at the end of the month! ☺️ Did I tell you I no longer have any local hemo-checks? That was a big moment of departure a few months ago. Had a lovely talk with my hematologist whom I had the past 7 years. I gave him a few grey hairs along the way…he told me. LOL. Anyway, he said there is no clinical reason for annual checks with him anymore more. The AML isn’t returning and the BMT was successful. So we hugged and he said “I hope I never have to see you again.” I sat in my car and cried happy tears but with mixed emotions. I still have my annual BMT followup though at Mayo.
Good luck with the measles vaccine. That one let me know I’m still alive! 😂. Ice up, baby!! Ice up! I’m so happy that your journey has been immensely successful, Kat!

@loribmt
Thank you so much for this info. My sister in all her hospital stays got one infection then another infection. I got my pap smear results back, negative. Yahoo. Now I need the results from the Guardant reveal test!

I think City of Hope built that hospital for this purpose you laid out. Sadly, finding someone for 30 more days or the whole hundred would have been tough!! God had his plan for me.
Your career!!! I had my first dentist say i looked like a young Kathryn Hepburn. Noone said things like that to this redhaired young girl. So, tons of procedures over the decades, I had my 2 bottom wisdom teeth out by an oral surgeon. That went as it said with the procedures. I bet you were a comfort to all. Knowing so much about germs is valuable too.

Your husband was a true blessing. I love ready of that support. Having the 2-bedroom unit sounds so wonderful. Being stuck in a hospital with vitals 4 times a day every day is not good for recovery.
It also was not normal as you experienced early on. All the sanitation was because of all the people and objects in the hospital and community rooms. Geez. In an off-site room i could have laundry and linen daily. I loved hearing all you wrote. Someone else at Mayo will come to find that is the same for them.
Did you have the pole with the bags of infusion items? Sounds you only got them going back to the hospital daily.
I know i moved to 3 months, so i will see if it moves to 6 months. I need that measles vaccine to get traveling again!!
Sadly, I wanted to be O blood like my donor but at 2 years i am still A+. I asked my Dr. said are you feeling good? Your blood numbers are all in line. No worries. I had 100% chimerism, so I supposed July 31st will give me an update.
Thank you, Lori, for all your encouragement.