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

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

Oh gosh, this is a bump in the road you weren’t expecting. Hopefully it doesn’t interfere with his SC transplant. He’s anticipating an auto-transplant using his own cells so that may pose less of a risk because he won’t be dealing with any rejection issues. But I do know some of the pre-transplant tests have to do with the heart’s ability to meet the rigors of the transplant and pre-conditioning, which is a round of chemotherapy. I’m glad to hear he’s doing well with his VRD treatment. Unfortunately, exhaustion is part of that equation.

Let’s see if some other members will have some input of having stents prior to a transplant. I’m sure you and your parents are so anxious and want to get transplant underway! Hopefully you hear back from his doctors soon with news that it will all go along as planned. Keep me posted, ok?

Today my father learned from the cardiologist that he’ll need to have a stent placed within the next couple of weeks. I’m really hoping this doesn’t keep him from being a SCT candidate in November. His VRD treatment is going well and other than exhaustion, he’s tolerating it well. Has anyone else had cardiac issues(-his may be completely unrelated) and if so, were they still able to undergo the SCT? I’m certain we’ll hear back from Drs regarding his ability to receive the transplant but thought I’d reach out to hear from this community as well. Thanks.

@rosemarya Thank you so much for reaching out to me. The Gift of Life Transplant House was just mentioned to me by an acquaintance as well. What an incredible endorsement on your part, as 11 weeks away from home under any circumstances is a long time. I truly hope that your kidney and liver transplants were a success and that you’re enjoying continued health! I really appreciate you taking the time to share your experience in order to help point my family in the right direction. ❤️

@hopefuldaughter, I want to jump in here because I see that your mom and dad will be going to Mayo Rochester. I was at Mayo Rochester for a liver and kidney transplant. My husband and I spent 11 weeks there. Our home is in Kentucky. We stayed at the Gift of Life Transplant House. I suggest that they look into it. It was perfect for us.

Fantastic! Congrats on passing with flying colors. That week of testing is a blast, huh? My husband and I called that being “mayo-naised”…like a medical blender of tests, procedures and classes!
It’s great everything is going smoothly so far! That’s a big step getting the cells all stashed away for next week! A relief that’s over and they’re secured. ☺️

Keep me (us) posted! We have a new member who’s heading to Rochester later in the fall on the same journey so sharing is really helpful.
Did you find lodging near the clinic?

☺️ I can totally empathize with the anxiety you and your family are experiencing. The entire situation, from the diagnosis to treatment can feel so overwhelming. Being away from home for 5-6 weeks while undergoing treatment seems daunting but it’s important to have that level of consistent care and to be near the clinic. And once they’re situated with lodging, it does start feeling like home.

Serenity house is a good source for finding lodging. Also the Concierge desk at Mayo Rochester is very helpful as well if your other leads don’t pan out. Here’s a link to the Concierge service.
Five Ways to Contact Mayo Concierge Services

Phone: 507-538-8438
Live Chat: https://www.mayoclinic.org/patient-visitor-guide
Email: concierge@mayo.edu
Web form: https://www.mayoclinic.org/patient-visitor-guide/minnesota/becoming-a-patient/concierge-travel-services
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Keeping in mind while you search for lodging for your parents that your dad will require daily trips to the clinic. The SCT process is mostly outpatient, except for a few days in the hospital on the transplant floor (Methodist Hospital, not St Mary’s). So that means a lot of back and forth trips to the clinic and parking can be a challenge. So finding a place to stay where they’re near the clinic, either attached via tunnels/skywalks or a rental/transplant house, etc., that will have a shuttle service is very handy.

Another member who recently had her auto-SCT at Mayo-Rochester is @countrygirlusa. Her story is a little different than your dads. She didn’t have MM but another challenging disease which required the SCT. This is the story she shared of her experience. https://connect.mayoclinic.org/comment/716285/

You mentioned coming to help your parents out during your dad’s transplant. From experience those first 2 weeks post transplant are probably the most challenging as your dad will be very tired and possibly nauseated. He’ll need frequent trips to the clinic and may even require a wheel chair if he’s feeling weak. (Wheelchairs are readily available all over the clinic) So those 2 weeks might be when mom will need your help the most. And possibly when they set up housekeeping? We can talk more about that later after you’ve found lodging to see what they’ll need. ☺️

Take a breath! This is all doable. There can be some less than pleasant days but they pass quickly and this journey is worth the effort! Will your parents be driving or flying to Rochester?