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

Hi @loribeyerlein, Welcome to Mayo Connect. My bone marrow transplant was 7 years ago, requiring my husband (caregiver) and myself, to relocate to Rochester for 100+ days. We stayed at the Marriott Residence Inn which is two blocks from Mayo. It’s connected via the tunnel system which made it easy to go back and forth to clinic daily without parking issues.

We had leased a 2 bedroom/2 bath unit with full kitchen. (If you stay any place longer than 30 days. See if you can lease the room. That way you may avoid county room tax). I don’t remember what it cost per day but I do know room prices shot up over the past few years. (You may also check with your insurance. Many companies pay a stipend for lodging while being treated…ours wouldn’t because I opted to go out of state for treatment).

Each of the units at the Res Inn has a kitchen. All have a Full-size refrigerator, at least a cook top if not a complete range, microwave, dishwasher and disposal. Makes it easy to set up a home away from home.

But there are other lodging options in Rochester besides hotels. There are duplexes, apartments, condos, Air BNBs. But many of the hotels do have kitchens or mini kitchens to allow for cooking. The Gift of Life Transplant house is another option if you’re having a solid organ or bone marrow transplant. That wouldn’t have worked well for me or my husband. We’re more private, so the independent living worked better for us.

Here is a conversation that has an extensive list of long term lodging in Rochester. Hopefully you’ll find it helpful! https://connect.mayoclinic.org/comment/1242265/

Mayo Clinic has a free Concierge service which can aid in finding suitable lodging. Here is their contact info:
Concierge services
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
By phone 7 a.m. to 6 p.m., Monday-Friday: 507-538-8438
Email: concierge@mayo.edu

Since you’re new to Connect would you mind sharing a little more about yourself? Will you be having a bone marrow or stem cell transplant? What is your underlying condition that has brought you to needing the transplant?

You might check out Hyatt House. Their suites have a small kitchen. We are in Gift of Life House for the community support but if you want more privacy HH may be a better for you.

@loribmt thank you for the information , much appreciated . I am 65 yo and I got diagnosed with CMML myelodysplastic-type
CMML (MD-CMML)
A couple of months ago . I live in eugene Oregon and in 2 1/2 years no one here or even in portland could diagnose me . I had skin sores ( bumps ) I bled easily and bruised easily . My dermatologist basically saved my life by encouraging me to go to the Mayo Clinic ( he knew a colleague there and got me an appt ) . He said he could not diagnose me .
I went to Mayo for a week and after two weeks they called me to get a bone marrow biopsy because my cells looked odd shaped + within a couple of days I was diagnosed. A few weeks after that I had my follow up over phone with Mayo hematologist and they told me because of my type of mutations it raised it to urgent and I needed to have a bone marrow transplant . Quite shocking at the time because my drs here were saying it could be easily managed for years . I am going to have the transplant at Mayo the dr is shooting for beginning of Sept but they’re still in the process of finding a donor . My son can be back up , which is a relief .
My husband is still working so I’ll have a bunch of family -+ friends coming in to be caregivers too .
I just want to find a hotel backup in case I have to move out of the care house .
Thank you for the information

@lorieliebrock thank you

@loribeyerlein
When we stayed in Rochester we rented a furnished apartment at The Park. It was close to clinic and grocery store etc. Manager was great.

Lori and all,
I went for my yearly gyno today. Two weeks for pap smear results. My NP told me City of Hope now does the offsite with patients at the hotel they built on site. No more floor six!! I would have needed someone to live with me for those first 30 days. I am sure lucky i got to have the experience on floor six. My insurance paid, but all the care of nurses, food i could order whenever. I know wonder how offsite you stayed germ free. Maybe it was not as necessary as i thought. Let me know Lori how offsite you protected your immune system.
I also told her i was wanting to go back to DR. Patel who moved to Cedars. She said do it. She is the best.
July 31st i have my hematologist follow up and my 1st live measles vaccine.

@loribeyerlein
Hi Lori, It’s always a comfort to have a backup plan! There’s no shortage of hotels and lodging in Rochester if you need to move from the care house. Of course, the closer they are to the clinic they go up in price. But there’s convenience in that many of the hotels within a couple blocks of Mayo are connected to the subway system so no worries about parking. It’s easy to walk to the clinic.

The early days for me I needed a wheel chair because of fatigue. Even walking 2 blocks was like climbing a mountain. LOL. Mayo allows patients to use their wheel chairs to take back and forth to the hotel! Made the daily trips really easy for my husband to just chauffeur me over to the clinic and back. ☺️

It’s incredible how your story unfolded! Kudos to your dermatologist for referring you to Mayo! Otherwise…wow, this could have been another story! I’m so relieved for you because I know you’ll be well taken care of there.

Fingers crossed for a quick donor search! My daughter was also my backup in case an unrelated donor couldn’t be found. Either way, you’ll be covered. Sounds like you have a great support system too! Keep me updated on your progress, ok?

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!

@katgob @loribmt
Hello friends!
So good to hear you are both doing well!! Congratulations to you both on amazing health milestones!
I wanted to jump in and tell you that my husband, who had his BMT on June 12, 2024 recently had his MMR and had no reaction whatsoever!
We had his CD4 (helper cells measuring his immune system strength to build antibodies) tested before he had the immunization and it was in the safe zone over 200. Then he just went for it! Now he is all done with his childhood vaccinations. Bonus is that his most recent biopsy shows 100% chimerism, no blasts, and MRD negative. Amen and hallelujah, it’s truly a miracle.
In fact, the day we visited his hematologist to discuss the results and confirm he no longer needs maintenance chemo, we walked into the waiting room afterward and a guest musician was singing “I Can See Clearly Now”…..

Well, we both teared up right there, turned to each other and held on for a long time. It was quite a beautiful moment.

For me, amidst the best news we could possibly ask for, I find myself having some PTSD, with memories of the intensity of the whole experience, from diagnosis to treatment, the fears, anxiety, constant vigilance, and all consuming nature of caregiving. I think I’m just now allowing myself to process some of that. And of course, you are both familiar with the low level anxiety that will likely always remain with us as we face each day and the prospect of relapse (God bless you Lori for the grace and hearing the words from your doc that AML is not coming back!).

Thanks for being here, listening, and supporting so many of us. We belong to a special club of humans. ❤️
Wishing you both a safe and beautiful holiday weekend.

Mary

@mary612
Hi Mary and Dane! Because I know what you’ve both endured through Dane’s incredible medical adventure, I’m tearing up right along with you this morning. The news of his 100% Chimerism and MRD-neg is fantastic! We become like family here and when there’s good news like yours to share, it encourages all of us! 💕

I’m especially moved with your both hearing “I can see clearly now…” at such a poignant time after Dane’s appointment! Wow, huh? If that’s not a sign…and that song will forever be an underlying theme song in your hearts…the song of liberation! ☺️ Music can be so impactful on multiple levels! I have four songs that highlight 4 memorable times in my odyssey. As soon as I hear any one of them, I instantly recall the moment and milestone.

Dane, you’re a lucky duck for not having any issue with the MMR. I have to say, out of all the vaccinations…and you know how many that entailed…😳…the MMR knocked me on my butt for a couple of days! It’s good to be finished with those!

You brought up such an interesting discussion topic. The PTSD surrounding having not only AML but also the subsequent BMT. Well, actually any medical event can have its share of traumatic recall. It’s a heckuva a lot of emotions to process! Our bodies as well as our minds go through incredible trauma that’s hard to shake. You’re right, Mary, at the time of the event, you don’t have time to process what’s going on. You ride along a roller coaster of emotional highs and lows, with little time for self reflection. It’s like running on autopilot in stress mode for a couple of years! So all of those emotions get buried. Now, with the immediacy and intensity of the past few years behind you, there will be bubbles of trauma occasionally rising to the surface. Don’t be afraid to talk and reflect about what you’ve both been through. It is helpful for incremental healing. I still have moments that strike me out of the blue and it’s been 7 years. In fact this past week, because it was another anniversary of my BMT and journal entries are popping up in my online journal, I think of the enormity of what was endured, survived and overcome finally hit me like a ton of bricks. Had a couple of days where even Dishwasher soap commercials had me crying! ☺️
I looked at my husband, shaking my head, ’How did we even get through this?!” But we did! And you and Dane did and countless other families. We do what’s necessary to survive so that we can have this amazing 2nd chance at life. Ah, Chimeras and their families. Giggle.

Have a lovely holiday! Love and congratulations to you both.