Getting closer! Starting CAR-T soon and planning our stay

Posted by blewellyn @blewellyn, Nov 14, 2021

Hey everyone, it's me again! My mom is getting closer! Tuesday, the 16th is her cell harvest date. We are starting to plan for our six week stay in Rochester. My mom would prefer renting a house vs. staying in a hotel. I'm wondering where everyone else stayed and how financially reasonable it was.

My mom has some savings, but I do not want her to spend all of it on this whole process. My brother and I would like to start a GoFundMe for her to help with lodging expenses. Does anyone have experience with GoFundMe? It will be our first time using it.

Thanks in advance for your input!

-Bridgette

Interested in more discussions like this? Go to the CAR-T Cell Therapy group.

Hi Bridgette, This is such good news for your mom! Hope is on the horizon. I know you’ve been chatting with @grandpabob about his experience with Car T Cell Therapy. The science and technology is fascinating. I had a bone marrow transplant as I wasn’t a good candidate for the Car T. But my transplant doctor is very involved in Car-T so it was really interesting to learn about this amazing new treatment.

Now let’s find a cozy spot for your mom while she recovers.
Since she’ll most likely be needing daily blood tests you’ll want something nearby. Finding parking near the clinic daily is an issue, so keep that in mind when you’re looking. If you can find something within walking distance that’s great. You are able to take wheel chairs from the clinic back to wherever you’re staying for easy transport for your mum if she’s too weak or tired to walk. There are also entrances to the Subway system in various areas near the clinic which can get you out of the elements if the weather turns nasty.

Lodging around the clinic is plentiful for transplant patients. If memory serves me right, one of my fellow mentors, @rosemarya recouped at https://gift-of-life.org/

There are a number of VRBO homes nearby https://www.vrbo.com/vacation-rentals/usa/minnesota/rochester/mayo-clinic

Below are links to the clinic’s guides for hotels, what to bring, and the concierge services. Concierge is invaluable in helping to find lodging and answer questions you might have.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/hotels-lodging
https://www.mayoclinic.org/patient-visitor-guide
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
https://www.vrbo.com/vacation-rentals/usa/minnesota/rochester/mayo-clinic
Seeing that your mom is already scheduled for cell harvest she must have a transplant team. One of integral members of that team will be a social services coordinator. They’ll help with suggestions of lodging and financial assistance for your mom. Have you been in contact with a social service coordinator?

Also, depending on what insurance your mom has, they do pay a certain percentage of lodging cost. Has your mom consulted with her insurance company about benefits?

REPLY

We rented a 2-bedroom, 2 bathroom condo that is about one mile from the Mayo Clinic. We paid $90/night based on a 3-month stay. The name of the complex is Grove Condos, 921 4th Ave. NW, Rochester MN 55901. You can call Bekah @ Portico Properties for more information @ (507) 412-1490. Each unit has its own outside entry, and there are only 8 units total in a quiet residential area. We were very pleased with the accommodations!

REPLY
@loribmt

Hi Bridgette, This is such good news for your mom! Hope is on the horizon. I know you’ve been chatting with @grandpabob about his experience with Car T Cell Therapy. The science and technology is fascinating. I had a bone marrow transplant as I wasn’t a good candidate for the Car T. But my transplant doctor is very involved in Car-T so it was really interesting to learn about this amazing new treatment.

Now let’s find a cozy spot for your mom while she recovers.
Since she’ll most likely be needing daily blood tests you’ll want something nearby. Finding parking near the clinic daily is an issue, so keep that in mind when you’re looking. If you can find something within walking distance that’s great. You are able to take wheel chairs from the clinic back to wherever you’re staying for easy transport for your mum if she’s too weak or tired to walk. There are also entrances to the Subway system in various areas near the clinic which can get you out of the elements if the weather turns nasty.

Lodging around the clinic is plentiful for transplant patients. If memory serves me right, one of my fellow mentors, @rosemarya recouped at https://gift-of-life.org/

There are a number of VRBO homes nearby https://www.vrbo.com/vacation-rentals/usa/minnesota/rochester/mayo-clinic

Below are links to the clinic’s guides for hotels, what to bring, and the concierge services. Concierge is invaluable in helping to find lodging and answer questions you might have.
https://www.mayoclinic.org/patient-visitor-guide/minnesota/hotels-lodging
https://www.mayoclinic.org/patient-visitor-guide
https://www.mayoclinic.org/patient-visitor-guide/preparing-for-your-visit
https://www.mayoclinic.org/patient-visitor-guide/minnesota/concierge-services
https://www.vrbo.com/vacation-rentals/usa/minnesota/rochester/mayo-clinic
Seeing that your mom is already scheduled for cell harvest she must have a transplant team. One of integral members of that team will be a social services coordinator. They’ll help with suggestions of lodging and financial assistance for your mom. Have you been in contact with a social service coordinator?

Also, depending on what insurance your mom has, they do pay a certain percentage of lodging cost. Has your mom consulted with her insurance company about benefits?

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Hi, Lori. I'll be happy to jump in here and to share my experience with @blewellyn about the Gift-of-Life House in Rochester.
Bridgette, My husband and I spent 13 weeks in Rochester, after an airlift from ICU in my home state of Kentucky. He investigated the Gift of Life House (GOL) while I was being treated for 2 weeks in the hospital. I have to admit that his initial decision was based on an affordable and convenient place to stay for an indefinite time. He soon told me that it was so much more and he was excited to take me there after my initial hospital discharge while building my strength and waiting for a transplant. I was 'grounded' by the liver transplant team and told not to leave the area, plus I needed dialysis and other tests and procedures. This is where the shuttle to/from the Clinic are so convenient.
The GOL provides a clean and safe atmosphere where a person can hear the inspirational stories and receive support from talking with, or by observing others who are on similar journeys. It is a place where people speak softly, and respect the privacy for all. We had a private bedroom and bathroom – all beautifully decorated and handicapped accessible. All meals are self provided and there are community kitchens with everyone having an assigned closet, refrigerator shelf, and a freezer shelf. There are several dining rooms, and there are multiple quiet reading areas, TV and activity areas, as well as lots of books and puzzles. Even a computer room with printers are available. I spent most of my time quietly working puzzles or napping/reading in my room because of how I felt. My husband was able to interact with the other caregivers, so he could let me rest.
For us, the luxury of dining with others was a blessing, and even before Covid, all guests observed best practices for safety like washing hands, distancing, sanitizing common areas, etc.
I once had to be hospitalize for a couple of days, and some of the other guests inquired to my husband about me. When I returned 'home' to GOL on the shuttle, I received a spontaneous round of applause by those who were waiting their turns to get on the shuttle!.

Everyone who stays at the GOL must take a short tour and agree to the standards.

I almost forgot to add, that now the GOL and Mayo Clinic have coordinated with the phlebotomy dept and there is a lab inside the GOL where patients can have their labs drawn without having to leave the house!
Sending you my thoughts.

REPLY
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