Caregiver to cousin testing for liver transplant: Can I get support?

Posted by emilyw @emilyw, Dec 19, 2021

I will be a caregiver to a family member who will begin testing for liver transplant candidacy. The journey begins next week. We live in southern Arizona about an hour and a half away from each other. I need help understanding how I fit in.
We’ll spend the week in Scottsdale. Can I get support while at the Mayo Clinic or hospital while my cousin is getting tested?

Interested in more discussions like this? Go to the Caregivers group.

Transplant candidacy week was a whirl for me, as caregiver, and my husband as recipient. I was able to be with him for the various consultant appointments, after the tests, and took copious notes, and asked questions we had considered pre the appointments. Just your presence at that time will be reassuring for your cousin. Covid restrictions were tight June of 2020, and I expect the same now, but on most occasions that week, I was able to wait for him,or in the cafeteria. I wish you both the best of luck. I do not believe you could be in better hands.

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Hi @emilyw, I've added your question to the Transplants group (https://connect.mayoclinic.org/group/transplants/) as well as the Caregivers group. I did this so you can get additional tips from people who have been to Mayo Clinic in Arizona and elsewhere like @danab @estrada53, @coquifoife, @tucsonguy @svezir and others.

You might also be interested in this discussion that @gingerw a fellow transplant caregiver started:
– Transplant Caregiver Advice: Got Tips to Share? https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/

Emily, what questions do you have?

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Colleen, Thank you for responding to my post. Online support is. Good place to start. Is there a live person or support group at Mayo in Scottsdale while my cousin goes through “Mayo Week”? I would like to establish a connection now, so that when the time comes for a transplant and an extended stay in Scottsdale, I have a hand to hold. My husband lost his mother and sister to cancer 40 years ago and my cousin’s liver cancer brings it all back for him.

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@emilyw

Colleen, Thank you for responding to my post. Online support is. Good place to start. Is there a live person or support group at Mayo in Scottsdale while my cousin goes through “Mayo Week”? I would like to establish a connection now, so that when the time comes for a transplant and an extended stay in Scottsdale, I have a hand to hold. My husband lost his mother and sister to cancer 40 years ago and my cousin’s liver cancer brings it all back for him.

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@emilyw, my husband was my caregiver and during the process of being evaluated for transplant (at Mayo Rochester, and at the Univ of KY) we met with a social worker in addition to the medical team. You and your cousin , will be meeting with a social worker who is going to be your connection to finding support that you will want. Sometimes the caregiver can feel slighted because so much attention is focused on the patient. And, according to my husband, the caregiver can feel overwhelmed and inadequate, so ask for help when needed.
Have you and your cousin decided where to stay while at Mayo? One place you might consider is the transplant patient lodging where you will be in contact with other patients and caregivers. Here is information about
The Convenience of Transplant Hospitality Houses
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/the-convenience-of-transplant-hospitality-houses/
With lots of time that you will spend waiting – here is some additional information about caregivers.
What to Expect as a Transplant Caregiver
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/what-to-expect-as-a-transplant-caregiver/
Advice for the Caregiver
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/advice-for-the-caregiver/
You are doing a good thing to think ahead and to begin investigating the support that you will need.
Do you have any questions that you want to ask about the evaluation process?

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@emilyw

Colleen, Thank you for responding to my post. Online support is. Good place to start. Is there a live person or support group at Mayo in Scottsdale while my cousin goes through “Mayo Week”? I would like to establish a connection now, so that when the time comes for a transplant and an extended stay in Scottsdale, I have a hand to hold. My husband lost his mother and sister to cancer 40 years ago and my cousin’s liver cancer brings it all back for him.

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Emily, there is a liver transplant support group for caregivers hosted by a Mayo Clinic social worker in Arizona. Currently, due to COVID, they meet on Zoom. I will get the details and post them here tomorrow. This is likely the same social worker you will meet in person when you arrive at Mayo Clinic. I agree with @rosemarya. It is good that you are planning ahead. Just know that you are not alone. We're here on Mayo Clinic Connect to support you as questions come up, and most importantly, you will be well taken care of at Mayo Clinic AZ.

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Hi Emily I'm a fellow Arizonian I live in Florence and during my transplant my Wife was my caregiver. Probably one of the most important jobs as basically your cousins right hand person. So the staff particularly the Social workers will help you thru the process and the Mayo portal I found was the greatest way to stay organized. But pencil and paper is also welcom for mainly question and answered. It will be quite the week so having something to refer back to very handy. I suggest even starting a journal something I wish I had done. Now I had a Heart Transplant so I don't know if the social workers will be the same as mine but im.sure a great resource for alot of those non medical questions. Like lodging, insurance what should i pack and local resources. Please ask me also about some of those areas as I've gotten very familiar with the local hotels restaurants etc. I'm only 1.5 hours away but n I found staying up there at a hotel the first few .
weeks after transplant an lot easier than driving back and forth which is actually on you as your cousin won't be allowed to drive until about 6 weeks after surgery. Again I'm speaking for me im not sure the recovery period for a liver transplant. But if I can help with other things n pleas ask
Blessings

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@emilyw, Good Morning, Emily. By my best guess you are probably at Mayo for your cousin's transplant evaluation. I want you to know that I am thinking about you and you proceed thru the strenuous schedule. If you have any questions about the liver evaluation procedures that your cousin is having, Please feel free to ask here. I remember that, as the patient, my experience with procedures was different from my husband's from the waiting room.

What have you learned about getting support for yourself during this stressful time?

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@rosemarya

@emilyw, Good Morning, Emily. By my best guess you are probably at Mayo for your cousin's transplant evaluation. I want you to know that I am thinking about you and you proceed thru the strenuous schedule. If you have any questions about the liver evaluation procedures that your cousin is having, Please feel free to ask here. I remember that, as the patient, my experience with procedures was different from my husband's from the waiting room.

What have you learned about getting support for yourself during this stressful time?

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Rosemary, Is there anyone at either campus that I can meet with? Yesterday was at Phoenix. Today is at Scottsdale.

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@emilyw

Rosemary, Is there anyone at either campus that I can meet with? Yesterday was at Phoenix. Today is at Scottsdale.

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Hi Emily, have you been introduced to your transplant social worker on campus?

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@emilyw

Rosemary, Is there anyone at either campus that I can meet with? Yesterday was at Phoenix. Today is at Scottsdale.

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@emilyw, Your cousin’s schedule of appointments should include a visit with social worker who can best direct you since you are the caregiver. My First suggestion is to bring this desire to talk to someone up to him/her at the appointment.
If the social worker appointment is later in the week, you or your cousin can inquire when signing in with the transplant dept.

And, you can always contact the chaplain office. They make themselves available. And have experience with patients, caregivers, families in all manner of stressful situations. I’ve not been to AZ, but at the Rochester Mayo there is always someone available.

Let me know how your week goes. You are doing a great thing to be a caregiver for your cousin. We can talk about caregiving whenever you want to. ❤️

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@emilyw

Rosemary, Is there anyone at either campus that I can meet with? Yesterday was at Phoenix. Today is at Scottsdale.

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Hi Emily, I have more information for you. 🙂
Generally, when patients are going through transplant evaluation the social work visit is part of the evaluation and can be scheduled at any point during the evaluation process. You can always contact the social work team by phone 480-342-1010 and ask to speak the social worker responsible for the organ group, in your case – liver. The call center will notify the social worker who will contact you directly.

Additionally, you are invited to join the Transplant Caregiver Support Group. They meet on Zoom the 1ST and 3RD Friday of every month at 11am-12pm AZ time.

The group is for caregivers, so we respectfully ask that patients not attend. This is a virtual meeting. No registration is required and feel free to come to any group you can make.

Join Zoom Meeting with this link: https://mchealth.zoom.us/j/6264429233?pwd=RG1pUy96S1lycFRNY2NLWWsvYVlvdz09
Meeting ID: 626 442 9233
Passcode: Mayo

The next meeting is on Friday, January 7, 2022

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