Please help me navigate this process!

I had a stem cell infusion instead of a BMT, so I can really only speak to the aspects of a long hospital stay.

The hospital can be noisy (even just pumps humming and monitors beeping), as well as brightly lit, making it hard to sleep. Earplugs and an eye mask were helpful in sleeping through the night.

You might get interrupted multiple times during the night for different tests, etc. If this is problematic for your sleep, you can request "cluster care" (or various other names I can't remember) where they try to schedule all the nurses, techs, and phlebotomists to visit you at once so they don't have to wake you up multiple times.

If you're used to having some air moving around (like from a ceiling fan) when you sleep, it can be helpful to take a little 4" to 6" clamp-on fan that you can attach to the bed frame or a nearby piece of furniture.

A charger and long charging cord for your phone and other electronic devices... and if music is your thing, a comfortable set of headphones or earbuds.

Good luck with your treatment!

Hi @slingaf, You’ve come to the right place to meet some fellow BMT friends. Several have had their transplants in Jacksonville. So I’d like to introduce you to @tkidd51 @avaleir @caregiverx2 to get you started.

There are several discussions in the forum where we’ve talked about long term stays, what to expect before, during and after the transplant. Here are a few of those conversations:

My BMT transplant story, Will you share yours? https://connect.mayoclinic.org/discussion/my-bone-marrow-transplant-bmt-story-will-you-share-yours/

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Husband with AML facing a stem cell transplant
https://connect.mayoclinic.org/discussion/husband-facing-a-stem-cell-transplant/
I’m away from my computer until tomorrow and will post more information and suggestions for you. No doubt other members will pop in as well. We’ve all gone through this and know how daunting it can be. But I promise we’ve got your back and will help you along this unfamiliar path.

@markymarkfl got you off to a good start with ideas he posted in his comment above.

If you don’t mind sharing, what was your diagnosis that’s requiring you to have a stem cell transplant? Do you have a donor?

Good morning! I, also, had to relocate to Jacksonville for treatment. I stayed in an apartment about 10minutes from Mayo and it was convenient to everything. I’ll get you the information.
For me, I lost my hair before the BMT.
The social workers at Mayo were awesome and helped me navigate the financial part.
Mental health is real important, make sure you have a lot of support from family and friends. Keep your spirits up and stay positive no matter what.
It’s a journey, but the second chance at life is wonderful and I’m very thankful.
Stay strong!

Hi @slingaf - @markymarkfl and @loribmt have already provided so many helpful suggestions for practical tips so you should have plenty of great information. I can only add by offering my experience as a patient who spent 80+ days in the Mayo Florida hospital for blood cancer treatments (lymphoma DLBCL). I also went thru the preparation for the BMT but was not able to complete it due to inadequate bone marrow recovery (transplant was using my own cells). All of my blood cancer treatments were on 3 North which is where I assume your BMT will be as my 3 week hospitalization for the BMT was also scheduled there.

The Mayo Florida BMT team also provided a comprehensive list of items not allowed in the hospital room during the recovery after transplant due to contamination concerns while your immune system is recovering. This team provided a notebook with a comprehensive review of the BMT process, specific items to bring and other items not allowed in the hospital room during the recovery weeks in the hospital. They also provided an outline of the daily routine in the hospital during recovery which was helpful in understanding the process.
All of this information was so helpful in preparing for an extended hospital stay. This information is also reviewed by the BMT nurse coordinator so you should get all the information you need and an opportunity to ask questions.

As for the Mayo Florida hospital experience, I would like to say that everyone on the hematology floor, from the attending physicians, nurses, technicians, and even the daily cleaning staff, were kind, compassionate, and supportive to ensure that I had everything I needed to successfully complete my treatments and feel comfortable. These are the same staff that you should have for your BMT so you will be in excellent hands. These amazing caregivers will be a great asset in your treatment and recovery.

Rest assured that you will have excellent support and guidance from @loribmt and the other amazing members who have been through the BMT process. They can all offer support as patients who have had their own success with this amazing treatment. @loribmt is an incredible mentor to have during this treatment so you are already headed for success by reaching out here.

Wishing you all the best with your treatment and recovery!

Is 74 too old for stem cell??

I can tell your mind is going a million miles an hour! ☺️
Age alone isn’t the deciding factor for a person being eligible for a stem cell transplant. I have acquaintances who were 75 at the time of transplant and now in their 80s and doing really well. Taken into account is the patient’s overall health, consideration of any pre-existing conditions as well as the underlying condition; The type and severity of the disease being treated.
From experience, there is an organ assessment of heart, liver, and kidney function to ensure they can tolerate the transplant, along with a mental assessment.
Insurance and financial considerations factor in, as well as a patient’s willingness to follow guidance of the transplant team. They will need a full time caregiver for several months. And…a donor! Pheww…huh?
This is a discussion to have with your doctor. Depending on the mutations involved, some patients with AML don’t necessarily require a SCT. When your bmbx results are back and you have a consultation with your doctor, that would be a perfect time to inquire about the possible need for a transplant, if you would be eligible…and an alternative treatment plan if you’re not a candidate.

Good morning all Fighters here !
My husband aged 40 + diagnosed with (ALL) is going for a Bone marrow Transplant this month end in Calgary Alberta . I am his caregiver and My Son is the Donor . We have prepared our mind and Soul for all the side effects after Transplant. Still my heart beats fast thinking of any major Post reaction or Organ Failure like things .
Well with the guidance and discussion of so many beautiful people like you all hoping for a successful Transplant.
I would like to thanks @loribmt for your kind words always which makes easier for the people going for the transplant.
Thanks everyone and Best of Luck ahead.

Good morning, @anitasharma. It sounds like it’s a ‘go’ for the bone marrow transplant! I’m so happy your son was able to be the donor! What an exceptional gift to give his dad…the gift of life. ☺️
I think you and your family have done an amazing job of preparing for this next transition for your husband. Keeping in mind most of us who have these transplants have no serious long term side effects. But without the transplants, we’d no longer be gracing the planet! I’ve yet to talk to any of my acquaintances who wished they had not gone through with the procedure.

Of course, as with any medical procedure, there are some potential risks, especially with a reaction of the new cells to the body called Graft Vs Host Disease or GVHD. But most incidences are handled quickly with steroids or another medications. There are newer meds on the market that pre-empty gvhd early on. Some gvhd issues may become chronic but we learn to roll with the little inconveniences. Personally, the past 6 years that I’ve been on this planet are bonus years and I’m relishing every minute of being alive. It’s perspective. ☺️

You might find this guide from Mayo Clinic helpful. Each clinic will have their own protocol for procedure. But the basics will be similar. This guide has several parts for Caregiver, The transplant journey, etc. Your husband will be having the Allogenic transplant. So skip over the autologous transplant.
https://connect.mayoclinic.org/blog/caregivers-for-bmt-car-t-and-hematology/tab/transplant-journey/#ch-tab-navigation
Is there anything I can help you with? Any specific questions or concerns?

It is worth it. I was infused with my "Be a Match" 26-year-old donor last year at this time. I was treated at City of Hope in Duarte California. I spent 24 days in the hospital and April 2nd was my first of 4 daily doses of a chemo. I went home each day. On the Saturday i was admitted to the hospital. To Floor 6 which is the transplant floor at the hospital. One thing i did not realized that first day was that there is no "fresh air". It is controlled on that floor. The architects built lovely patios that are not used. No windows or doors are open. Our outside views were on our rooms and down a hallway that was enclosed that gave us the campus view. Hospital stays request we get up and move. Take our IV pole and move down the halls. Earn little "feet" for a necklace of achievement. The activities team has Bingo, Art, Dog visits and more to keep us busy. It was held on the main room facing the mountains on our floor. Our Blood numbers needed to be a certain number to participate. We all had masks on. Not the dogs of course.
It is an experience to live a day at a time. Lori had reviewed all the steps the COH had provided. Day 1, Day 0 and what it all means. At COH I was asked if i wanted to be in a research study before my transplant. It was in its 3rd or so phase, so a number of others had completed it. It was essentially another pill that in combination with the current treatment after transplant would possibly prevent me from having gvhd.
At nearly 1 year past transplant, I have had next to no side effects. The Melphalan Chemo to clear out our system of our cells is what caused all my hair to come out. It gave a clear pipeline for me donor cells to land, so the hair loss while a downer is my one sign today that tells me I did have a major event happen the last year.
Living such an experience like MDS, leukemia or other blood cancers requires gathering info then using that info to live this journey a day at a time. None of us will have the same journey. But on this site, what you will walk through has been walked through by one or more. Anything different you share will be something we will learn about when you share.
Medicine has come a long way.
I am day 358 past transplant.