Caregiver needed stem cell transplant while at Mayo in Rochester

Hello @bevprescott. Welcome to Mayo Connect! I’m a fellow SCT patient and coming up on my 4 year anniversary…or re-birthday as we call it. You’ll be in excellent hands with the doctors and nurses in the Bone Marrow Transplant group.
When receiving a stem cell transplant at Mayo you are essentially an Out Patient, recovery will be nearby usually in a hotel or apartment setting, The Gift of Life Transplant house, etc.. But yes, you will need a caregiver for those critical weeks.
Do you have friends or relatives who could stay with you on a rotational basis for the time? They could switch off?
Have you met with your social services coordinator yet? They may have some ideas for you in finding someone who can be a caregiver.

I just called the Concierge desk in Rochester. They had 2 suggestions. There is an established and reputable business called Quality Care who may be able to provide services for you. 507-258-4578
The assistant also suggested, if you are a member of a church perhaps there is a local church in the same denomination who would have volunteers who would be able to rotate staying with you.

Basically, what is required is someone who can get you to and from the clinic’s Methodist Hospital daily, sometimes twice daily for appointments or any emergencies. They’ll need to do any shopping, have food on hand for you and assist you if you’re weak or tired. The first 3 weeks are critical for having constant care available nearby.

Are you having a transplant using your own cells or from a donor?

Crying as I type this. Good release, right?

My original reply was lost. I am going back to mayo on June 5th. I am having lab work and seeing the doctors and the social worker I have had several visits with them and I'm hoping they say I am ready for a transplant. I have toured the transplant house I just feel that I need a nurse the first month and I have a very small family so I'm relying more on Friends to help me out. I will call Quality Care and I do not have a social services coordinator yet after June 5th I will know a lot more. My sister is coming with me to the appointment. I believe we will use an anonymous donor for my transplant. It's all the details that are so overwhelming and I don't have anyone to help me with that. My son's all live in the Des Moines area and their young professionals so taking time off from work may not work for them but possibly weekends. Thank you for replying that was very helpful information in your message I just feel so very alone.

Hi @bevprescott, I want you to know you’re not alone. There are several of us in the forum whom have had stem cell transplants from donors. It’s called an allogenic transplant.
I’m going introduce you to @edb1123, @alive and @kt2013. The 4 of us have had transplants to keep us in remission from Acute Myeloid Leukemia. I’m not sure what you blood condition is, but if you need a transplant it’s because your current bone marrow is failing on some level to produce healthy blood cells. With a new immune system, via a donor’s stem cells, you’ll have a clean new system and you essentially get a second chance at life! ☺️ The other three members I’ve listed, along with myself…and others, will hand-hold you all the way through whenever you need a sounding board or an ear to listen. We’ve all been through this and some of us have walked the same path you are right on…there in Rochester!

We’re all at varying stages of success from 3 years to 10 years! While this is not an easy adventure, you’ll be in excellent hands with the team at Mayo and Station 94. Mayo-Rochester is my home away from home and these amazing doctors and nurses saved my life.

With your first appointment for the pre-transplant you’ll most likely be visiting the lab first thing in the morning. June 5th is a Monday. So you’ll want to get to the lab 1/2 hour early before your designated time especially if you have an appointment scheduled soon after that time. That is a really busy time of day.
So if your appointment is at 7:30 and your next one is at 8:15, don’t wait until that time to show up! Show up at 7 for the blood work. And just so you don’t panic there is always a built in 15 minutes of wiggle room before your next appt. If your time says 8 AM. You won’t be seen usually until 8:15.

Mayo runs like clockwork, smoothly and efficiently. They want you to be relaxed and comfortable. Everyone will do their utmost to make sure you have a good patient experience. You’re not a number there…despite having one. ☺️

There will be a lot of information coming your way that first day. You’ll probably get a disk with information about the transplant and the process. It will feel overwhelming but I think as soon as you meet your transplant doctor you’ll feel a little more at ease. This team is there to help you in any way they can.
Do you have any specific questions about the transplant itself?
Do I you have your patient portal set up?

Hi! I read through your messages and am happy to be a part of your support team here in Rochester. And I am glad your sister is coming with you! My sister was with me when I was getting ready for transplant and she was a great help to me, just to support and listen to all the information. Feel free to make a list of questions ahead of time, to be sure all of your concerns are addressed during your series of appointments. There are no “dumb” or “wrong” questions. The better informed you are the easier it will be for the medical team to know how best to care for you. Ask for what you need.
I am single and my family and friends worked, so I asked my church family to drive me to my appointments and they all signed up on an online tool called “Sign up genius”. It is a way to set up an online schedule that people can sign up on to be your driver.
I am celebrating 10 years after my stem cell transplant for leukemia on June 20th 2023. Every day is a blessing, even when it rains 😊.
Keep in touch and good luck with your June appointments.

Oh I wish I was closer!
I'm in similar situation
Need liver transplant and after 30 yrs as a nurse I found ONE friend to help but she has too much on her to travel. I recommend Care.com.
I had 21 ppl apply so got to meet and see which was a good fit
Be specific as to YOUR needs
( including travel) to weed out the Day Sitters applying. I also worked out a deal bc it's longer term so the hourly rates dont apply

Good luck with your search and a GREAT transplant result!!!! Keep us posted!

Thanks for replying, words so encouraging. I plan on reaching out to my church & others for rides. I am feeling less of the burden on my shoulders. Everyone responding makes me feel better.

Thank you for your encouraging words.

Thank you again. I had a gf step up to help me write things down. June 5th can't come soon enough than I'll know which direction Drs are going. This gf will be at Drs appts too with my sister & myself.

That’s awesome! I’m so happy you have a friend who can be with you and your sisters. I think you’ll be very happy with your meeting with your transplant doctor. The team at Mayo is very thorough, they listen and take their time with you. Like I said, it’s my home away from home. My doctor and I have an amazing rapport and I feel more like a colleague than a patient.
There is this underlying feeling of calmness and hope when you walk through the buildings at Mayo. The buildings are all connected and it’s super easy to get around. If you need to go from one building to another, it’s easiest to be on the S level as there is no break in the floor plan. So it’s contiguous from Mayo, Gonda, Eisenberg, Methodist, etc. Every thing is well marked with easy directions. There’s an overabundance of volunteers in blue jackets to help you in any way they can.

Do you have any specific questions about your visit coming up?