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

@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

@loribmt what was the name of the hotel you used . Do you remember cost per night for this ? Could you cook at that hotel ? Did you consider the care house ?

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.

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?

@loribmt what was the name of the hotel you used . Do you remember cost per night for this ? Could you cook at that hotel ? Did you consider the care house ?

@edb1123 Hi Elaine, you and I have spoken before so it feels like we’re old friends. Thanks for being the first to respond to this new posting. There are very few of us on the transplant site so I’m hoping with time we’ll get some great dialog going between BMT/SCT patients and caregivers. We all have such unique stories of how we got to this point. Nothing is ever totally predictable; so many variables with each of our bodies and our new immune systems being introduced. Keeping a sense of humor, a sense of adventure and a positive attitude are the keys to getting through this!! LOL.

Our stories started a year apart, almost to the day in January, with both AML stories more drastic than the transplant. My epic adventure started a day after my 65th birthday when I woke up with a tickle in my chest. “ Ugh, please, I don’t want a cold.” To this point I’d been perfectly healthy, energetic as always and had no inkling what bomb was about to drop. Daily, the cough progressed. It was unproductive but steadily growing worse. We were to leave for Florida in a week and I wanted to feel better by then!

Went to my GP. She listened to my chest, wasn’t concerned and said I had bronchitis, even though I’d not had a cold or any symptoms. Recommended we “get in that car and head to Florida. The sun and fresh air is what you need.” I told that to my husband and we both agreed, we’re not going anywhere! This cough was nasty. Over a 3 week period the cough worsened. I became weaker, my skin developed a pallor and I had a sustained fever of 102. I visited my doctor 2 more times and she still maintained I was ‘just fine’. By the 3rd visit I’d developed pneumonia and she was reluctant to take blood tests, citing that we now have a diagnosis, the doxycycline will take care of it. My husband was persistent and blood tests were run. At this point I no longer cared. I was ready for a veterinarian to put me down! I could barely walk on my own. That afternoon my doctor called me and said the blood results are in, that she received a call from our local hospital where a room is being held for me in the oncology/hematology department, that I needed a transfusion and oh, pack an overnight bag. Apparently you have leukemia. Boom! That’s how I found out.

In the hospital room that night, Feb 6, 2019, I remember this super sweet oncologist (one of five I’d have on that team) sat holding my hand. He was telling my husband and our 2 closest friends who saw us through the past 2 weeks, that I had AML. It would need to be hit hard because this is very aggressive and depending on the mutation, is difficult to treat. A week later, my chemo started. I had the standard 7+3 induction and was in the hospital for 5 weeks. The first BMX at 30 days showed an all clear so we were relieved but still required another week of chemo every 28 days for the next 2 months. During that time, we learned that the 3 mutations which had caused the leukemia made it necessary to have a bone marrow transplant, as it would most likely return with a vengeance and become untreatable. Our choice for transplantation was Mayo Clinic.

June 2019 my husband and I relocated to Rochester for about 4 months so that I could undergo the transplant. This was before Covid, so having my husband as a caregiver with our daughter filling in periodically, gave my husband a break. They could be with me all the time. An allogenic donor was found for me in May and the end of June my transplant took all of 20 minutes. It was very anticlimactic considering all that takes place beforehand! And all the anxiety from the Stem Cell Transplant looming out ahead of us beforehand!! The unknowns! The day after the Transplant I was ‘back home’ in our lodging. A hotel conveniently connected to the clinic. The usual post transplant exhaustion, recovery from the conditioning (chemo) with the nausea, sore mouth, and weakness. Thankfully I was spared any intestinal issues and really nothing else.

There have been a couple GvH issues. They were handled readily with medications. But truly, this has been a most remarkable journey and in 4 months it will be my 2nd Rebirth day! My husband, daughter and I can’t say enough about the absolutely stellar BMT teams at Mayo-Rochester and the collaborative interdepartmental team approach. During my 2 episodes of GvHD issues, besides my super-hero transplant doctor, we had specialists from a number of departments working on my case as well. The first being the need to call in a rheumatologist for severe tenosynovitis in both wrists.
The other, a bit more dramatic because who doesn’t want to be a drama queen??!! LOL. Christmas week. 2019 I spent in the hospital at Mayo having lost feeling from waist to toes. MRI showed inflammation on my spinal cord. Not being sure if it was GvHD or a return of the AML, a virus, etc., a lumbar puncture was ordered. A neurologist was on the spot to assess my damage. Since the inflammation was on my spine, hefty IV steroids were needed to cross the blood brain barrier. Well, that was a wild ride!! But within 2 days I was up and walking again unassisted. Better living through chemistry!! But that level vexed my liver so now a liver specialist was called in to address that issue. Anywhere else we’d have waited weeks for these consults! Their dedication to detail, the compassion and complete patient focus is unparalleled.

Now we just need to get past this pandemic so life can go forward without restrictions!! Though we were all ahead of the game with wearing masks before they became fashionable. LOL. Lori.

My transplant is July 8 and since it is allogeneic I have to be there 100 days after the transplant. I look forward to keeping in touch with you.
Lorie