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

Thanks Lori. We are so impressed with the amazing work now that we are here in Rochester for care. Everything is so well planned.
We feel that David’s care is in the best hands and now are reassured that this team will help us every step of the way.
Rochester itself is beautiful and our apartment is a perfect home away from home. Getting used to apartment living after years in our house in the woods is an adjustment, but we are grateful to be in a very nice place close to the clinic/hospital.

Thinking of you and your husband this week as he starts all of his testing! Daunting schedule isn’t it? But you’ll be amazed at how smoothly it all goes. I hope all goes well so he can finally get on with this transplant! Sending an air hug!

dwolder,
Thank you for letting us know. Having you there with your husband will let you keep notes or ask the list of questions you have thought of. It has been said but worth saying again to do this a day at a time, and soon enough the time will go by fast. Maybe longer for you but assisting your hubby and maybe taking short walks will help.
Your beautiful attitude and spirit will help too.

Thank you katgob. We are in Rochester now rented a studio apartment. Pretransplant process starts tomorrow.
We are in a good place literally and metaphorically. Strong together with many friends and family pulling hard for us from home.
Your story continues to give us hope as we move forward.

Hi Marylou! So many of us know that feeling of being excited and scared at the same time while waiting for that stem cell transplant. I found actually having a confirmed date helped me switch mindsets from having a little fear of the unknown to finally being able to plan for the event. I’m betting it will help you too.

Sounds like you are all set with lodging. It helps to have that ‘home base’. My transplant was also as an outpatient. It was nice to be out of a hospital setting right away and into our home away from home. My husband would have small meals ready for me in the fridge so I could get up and grab food whenever I felt like eating. I took walks, naps, watched tv, did a little writing, reading, watercolors. It felt less like being a patient when I wasn’t confined to a hospital room all the time. There were daily returns to the clinic though for blood draws and infusions so I never felt apprehensive about not being admitted.

Here are some of my favorite links. They cover most everything. But each person has their own ideas of what to bring as well. Remember that this is your home away from home so if there are little things that you routinely have at home you’ll want them with you in the hotel suite.

This link to Mayo Clinic’s Caregiver guide is fairly comprehensive as to the needs of the patient for safety with food, living conditions and guidelines for getting through some of the earlier challenges.
Dana Farber will have their own protocol to follow but these are basic general guidelines that will be similar.

When you click on the link, check the headings and the menu listings. You’ll see:
Welcome. Caregiver support, Transplant Journey and More
Also, make sure when you look to the “Transplant Journey” that you scroll down to Allogenic Transplant segment.

https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/support/#ch-tab-navigation
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Another great guide for the Post Allogenic patient care is from Memorial Sloan Kettering. https://www.mskcc.org/pdf/cancer-care/patient-education/leaving-hospital-after-your-allogeneic-transplant

This link has some repetitive information but it also has detailed lists of what to pack for long term. I posted this a couple months ago to a newer member who just went through her Allo transplant, @katgob. She’s doing fantastic and just passed her critical 100 day point!

Let me know if there’s anything else I can do for you!

Hi Lori,
I just got my dates for my Stem Cell transplant at Dana Farber in Boston. I will be having my Central line placed on August 29. I am having it done as an Out Patient procedure. I will get my new stem cells on September 6th. My unrelated donor is 37 year old female with a 10/10 match.
I will be relocating to Boston for a Month and staying at a Homewood Suites with my husband as my care taker. I am excited and scared at the same time.
Any insight you can provide would be greatly appreciated.
Also I remember reading a list you had about what to bring for the month long stay. If you could provide the link it would be helpful.

Thank You
Mary Lou

dwolden,
Please keep us posted. Never let a day go by without keeping your RN informed. The pretransplant is a perfect place to start. The RN's help each and every one of us. I have written their names down to give them thanks through "Daisy Awards" we get from their work so patients can say they have been a blessing. With my last VAD appointment, due to my PICC line coming out, I am noting the nurses that helped me with questions answered and thoughtful advice and help. I wrote names down, but just in case i am checking the board with the faces of all the nurses in this department. Friday is my last day getting their help.
I pray your husband walks through it a day at a time and you beside him will be his blessing. And i hope, you have not and will not go in the room and watch a bone marrow biopsy. I have been told by family that watching was tons worse than getting one. If you must, look away. 🙂
Your kind words have made my day.

Hi @katgob! Whoo whoo! Tomorrow will be the big 100 day CELLebration! I know, it feels like a magical number so far in the future when you’re at Day 0!

You’ve done remarkably well and I’m so proud of how you’ve persevered through this entire process! It wasn’t easy to get all your ducks in a row with not having one designated care giver. Your sheer determination had you going to great lengths to make this all work out! You have a wonderful support system with friends and family. I am so profoundly sorry for the loss of your sweet little kitty, Hazel, though. That was unexpected and very tragic. That will somewhat mar you return home. But knowing your spirit of survival, you’ll find a way to cope with her loss and find a new rhythm to your home and 2nd chance at life.

I giggled with your 26 year old who resides with you! Hahah yes, I have a 20 year old in my bones…well, now he’s 25. 😉 I swear my donor gave me the gift of youth, besides the gift of life. At 70, I feel like I’m in my 20s with the level of energy I have. Though I haven’t had any desires for greasy pizza or cheap beer and I don’t wear AXE pit spray or body wash. LOL.
I’m also so grateful for all the updates you’ve been giving along the way. We are all part of the proverbial “village” that takes care of everyone else. We never know who will be reading our stories of what we’ve gone through and overcome, and then making it their own survival guide!
By sharing our experiences we can offer hope and encouragement to countless others about to embark on this odyssey! Wishing you continued success and keep posting these updates!
And Welcome Home, Friday! Be it ever so humble, there’s no place like it. ☺️ Sending an air hug!!

I’m learning so much from your posts. My husband is scheduled to start pretransplant testing for allogenic stem cell transplant next week. I’m so glad to hear about how beell things are going for you, it gives me hope and I’m telling my husband all about it.
Please keep posting.

I am at my 98th day after transplant. I saw my doctor today and he super thrilled with my progress. My numbers remain steady, and he is working me off Taco with two days this week and 1-day next week. My other anti-rejection pill has a last day this Thursday. He is checking on that for my Friday visit. My VAD nurse Christian asked when I was getting out my PICC line. I asked the Doctor, and he said if I do not mind getting stuck once a week for 3 weeks and once every 2 weeks after that then his NP will remove it Friday. I think he is more excited by my continued recovery than me. One more patient they just may have saved. My creatinine again is a bit too high. A result mostly from the Bactrim i am taking. Hard on the kidneys. So today he said he wants me to get hydration. I got it in an open bed in the children's oncology unit. Geez. Two young kids i saw and two teens. Then one in remission going to college. I can see their attitude is what keep them going. My RN says the younger ones do better as they just do what is asked her and they make friends with the staff very easily.
I chatted with my RN and found she lives in my town. She adopted a dog from the rescue in my town. It was a nice one hour.
I plan to go home on Friday. Crazy. I have been their 4 times in the last 3 weeks, not ever thinking my little cat Hazel would not be there to greet me. That will be something to walk through one day at a time.
With MDS- Myelodysplastic syndrome, I did not have the added weight of cancer cells to fight at first. Yet, every hematology doctor in the cancer department is looking for ways to sure. They will have a treatment plan if you have cancer or the effects of. I feel like my last 3 years have swirled by with diagnosis in June of 2021 for one cancer and up to today, with a bone marrow transplant 98 days ago because of MDS. I still have some tiny nodules; 2 in my lungs they are going to watch. I am not thinking cancer, and i figure the doctors reading the scans every 6 moths will now what is what. I have not had any breathing concerns as of now. a 3rd little spot has been in my lungs for 30 years. For today, other things are in my path to do.
This Thursday is my 100-day bone marrow biopsy. Having such good blood numbers nearly the whole 100 days i hope my body has remained free of the old me blood cells and let the new guy make it home. He is 26 and we want him in our bone marrow. So, for now, I hope all of you that are posting are doing well and taking it a day at a time. To those who do not post, keep reading to give you courage to possibly post.