Can anyone share their bone marrow transplant caregiver experience?

Hi @cupofsunshine. Well, as I learned with this whole AML/BMT process is that we don’t know how strong or brave we are until it’s our only choice. ☺️

A huge key to survival is by implicitly following the direction of your transplant team. And one of the primary goals is to avoid situations where you’ll be exposed to infections.

You’re already thinking like a transplant patient. ☺️ I’m with you about not staying at the transplant house. I know a number of people who have been very happy there. It wasn’t for me. My husband was my caregiver and we’re just not ‘joiners’. So using a communal kitchen wouldn’t have worked well for either of us. We also wanted to be in complete control of our environment. We stayed at the Marriott Residence Inn and got a 2 bedroom, two bath suite so that I had my own room and bathroom.

Losing the immune system is our biggest threat. We have to be incredibly cautious for bacteria, fungal infections and viruses. Masking, sanitizing, etc., is critical. So if you’re needing to eat several times a day, sharing a kitchen may not be your best option. You may do better with hotel room with full kitchen, air bnb, an apartment rental, etc. That way you can have your own kitchen and space! Your caregiver can have food made up and ready for you to go much when needed.
Keeping in mind, your caregiver needs to be with you for several months so make sure you have space for them.

No matter the transplant allo or auto, we lose our immune systems with the conditioning chemo. Autologous transplants with patients using their own cells has a little easier and faster recovery period. They don’t have to worry about graft vs host disease because their stem cells already match up with the body they’ll be returning to. The marrow will have been cleansed but their stem cells will return to a comfy, familiar environment.

An Allogenic sct using a donor’s cells is more arduous on several levels. Doesn’t matter what the cancer or condition was that led to the transplant, the potential side effects are the same. However, the healthier a person is when they go into transplant, recovery seems to take place a little more robustly.
I think I covered everything? The gist is, yes, ‘stranger danger’. LOL. The more privacy the better.

My husband was diagnosed with multiple myeloma in October 2022 and had an autologous transplant in February 2023. He was in the hospital 9 days in October, 5 days in December, and 8 days in February. (We were able to take advantage of the advanced care at home program and go home the day of the transplant, but had to go back to the hospital when he got a fever.) I stayed with him the whole time, because that’s where I wanted to be.

There was a folding couch at both hospitals that slept pretty well. I took a very thick blanket to use as padding and my small travel pillows. I was not a lite packer. There was a medium sized cabinet with three shelves for our use in both hospitals, and room to store bags under a counter at Mayo.

At both hospitals there was the option to buy a companion tray for meals. At Mayo Jacksonville it was $10. I also had non-perishable groceries there.

When admitted for the transplant, I was not allowed to use his bathroom. I set up a schedule for family members to stay with him while I left to shower. That was for my peace of mind. I know the hospital staff can take care of him when I’m not there, but there were times when he could barely tell me what he needed. It was helpful to him for me to call for help on his behalf.

If you don’t live in the town of the hospital, check out the hospitality houses on site. We stayed at the Gabriel House of Care in Jax during his transplant prep and were very pleased.

Message me if you’d like to connect via phone.

Hi @cupofsunshine. Well, as I learned with this whole AML/BMT process is that we don’t know how strong or brave we are until it’s our only choice. ☺️

A huge key to survival is by implicitly following the direction of your transplant team. And one of the primary goals is to avoid situations where you’ll be exposed to infections.

You’re already thinking like a transplant patient. ☺️ I’m with you about not staying at the transplant house. I know a number of people who have been very happy there. It wasn’t for me. My husband was my caregiver and we’re just not ‘joiners’. So using a communal kitchen wouldn’t have worked well for either of us. We also wanted to be in complete control of our environment. We stayed at the Marriott Residence Inn and got a 2 bedroom, two bath suite so that I had my own room and bathroom.

Losing the immune system is our biggest threat. We have to be incredibly cautious for bacteria, fungal infections and viruses. Masking, sanitizing, etc., is critical. So if you’re needing to eat several times a day, sharing a kitchen may not be your best option. You may do better with hotel room with full kitchen, air bnb, an apartment rental, etc. That way you can have your own kitchen and space! Your caregiver can have food made up and ready for you to go much when needed.
Keeping in mind, your caregiver needs to be with you for several months so make sure you have space for them.

No matter the transplant allo or auto, we lose our immune systems with the conditioning chemo. Autologous transplants with patients using their own cells has a little easier and faster recovery period. They don’t have to worry about graft vs host disease because their stem cells already match up with the body they’ll be returning to. The marrow will have been cleansed but their stem cells will return to a comfy, familiar environment.

An Allogenic sct using a donor’s cells is more arduous on several levels. Doesn’t matter what the cancer or condition was that led to the transplant, the potential side effects are the same. However, the healthier a person is when they go into transplant, recovery seems to take place a little more robustly.
I think I covered everything? The gist is, yes, ‘stranger danger’. LOL. The more privacy the better.

Hello @papad i'm very sorry about the multiple myeloma. I dont know much about that one, is he doing better now? You guys must have been living really close to the hospital, because from my understanding, the transplant procedures are the same across the entire country (and rules and requirements like living within five minutes away) . May I ask which hospital? So far, I havent had much luck with my insurance type (Tricare Select) and any advanced care at home programs. One thing i wished i would have known was that some of the hospitals allow transplant patients to stay in the actual hospital the first few months, (like MD Anderson). I think that initial barrier i had to finding caregivers would have been alot less burdersome a few months back. Anyways, I'm forced to share a bathroom with my caregiver at the transplant house. these are all great things to hear and know about!!! Best best wishes to you!

@loribmt I was wondering if the transplant house bends the rules for bmt'ers. Because bmt is not like a heart transplant (and or lung transplant...do those patients loose their immune systems?). Well, if the doctors say i need to eat in my room for several weeks, im wondering if they allow it. Because i did hear that they have to make exceptions. I'm getting the big part of this that needs to be prepared to follow very very precise rules and avoid infections of all kinds. I'm a very good patient. I just dont want to get up there, be in the transplant house and then try to move elsewhere halfway thru because its not working out. I rather go get an apartment in town, if needed. And your advice for the hotel was excellent (i'm calling them as we speak).

@loribmt Yes, i was wondering why these are using a Jakafi type inhibitor on me when im not even jak2 positive. (i'm Calr + Axl1 mutations) And i was wondering if I'm already immuno compromised (just with my condition alone). It looks like i reported my bmt matching donor results wrong. They just had'nt told me yet because i guess i had'nt asked. Today I found out they actually have a potential 9/10 donor but wanted to see how closely my brother might also be my match. Thats going to be exciting to find out about. ☀️🌻🤗

I really have no experience stay at the transplant house in Rochester. Are you talking about The Gift of Life Transplant house? Fellow mentor @rosemarya may be able to give you some first hand information. She had a liver and kidney transplant at Mayo Rochester and stayed at the GOF house…

Tissue transplants patients don’t lose their immune system like we do but they are on strong immunosuppressants which can seriously compromise their ability to fight infections. So it’s equally important for them to be safe as well.
I wasn’t aware that there’s no eating in the rooms? From my experience I can tell you there were times it was difficult dragging my old bag of bones out of bed to shuffle to our kitchen 5 steps through my bedroom door in the hotel. And I sure wasn’t fit for public viewing in a common area! 😂

Can’t remember if I mentioned this or not but you will be required to go to the clinic…Station 9-4 in the Methodist hospital daily. Sometimes more than once. So you’ll want to be near the clinic if possible and not having to find a place to park each time.
If you opt for a hotel, since you’ll be there for more than a month ask for a lease rate. That way you won’t have to pay county room tax. ☺️

Quite a few of our cancer meds are used for multiple conditions. Conditions tend to overlap.

Most of us with a blood condition tend to be immune compromised. Especially if our white counts are down. If you’re on treatments, they also tend to lower our ability to fight infection.

That’s fantastic news if there’s been a donor match. Ideal doctor’s would like a 10/10 match, but 9/10 will work fine!
A sibling is also a great match so finger’s crossed your brother comes through. The medication he’d have to take is a very small price for helping his sister. It’s not that big of a deal! My donor did it for a perfect stranger! I still don’t know who this kid is but he was only 20 at the time. I know you’re not real close with your siblings but c’mon…he could save a life by doing this. Giving someone a second chance at life is a priceless gift!! 😍

Be The Match foundation is who Mayo uses to procure donors. https://bethematch.org/

You won’t be able to find out who your donor is for 1 year if from the US. Europe, I believe is 2 years.

Quite a few of our cancer meds are used for multiple conditions. Conditions tend to overlap.

Most of us with a blood condition tend to be immune compromised. Especially if our white counts are down. If you’re on treatments, they also tend to lower our ability to fight infection.

That’s fantastic news if there’s been a donor match. Ideal doctor’s would like a 10/10 match, but 9/10 will work fine!
A sibling is also a great match so finger’s crossed your brother comes through. The medication he’d have to take is a very small price for helping his sister. It’s not that big of a deal! My donor did it for a perfect stranger! I still don’t know who this kid is but he was only 20 at the time. I know you’re not real close with your siblings but c’mon…he could save a life by doing this. Giving someone a second chance at life is a priceless gift!! 😍

Be The Match foundation is who Mayo uses to procure donors. https://bethematch.org/

You won’t be able to find out who your donor is for 1 year if from the US. Europe, I believe is 2 years.

Do you know if there are other places to procure donors...other databases they can search, even overseas? Right now, my whites are holding out. my hemoglobin is beginning to lower (9's), but bounces in the 9 and 10s, my platelets are the lowest ive ever seen now in my entire life, @ 140 range. the other things in my blood look like a complete disaster, but then i tell myself, that must be the blueprint of PMF. My spleen is at 9 cm, like last month. Its not really shrinking anymore. They have me on half the regular dose of Pacritinib (for a reason). And my transplant doctor up at The Mayo said that they have the new medicine called Momelotinib. That will help reduce the anemia portion driven by the PMF.
My family is slowly coming around (my mom and brother), but not my sister. They reacted so irrationally out of fear. And I cant blame them. really. They want to see a cure, as do I. They rather i wait for a cure and not do the transplant.
Talking about finding cures...we all know these scientists and researchers are working hard at it every single day. And, actually, I think they are close to finding one. If my disease would only hold out until they found the cure, wouldn't that be fantastic!!! Heres to extremely positive and hopeful thinking.... we can dare to dream too. 🌌🌟🌠