Questions about Rules for Transplant Caregivers while at Mayo Clinic

@booma Yes, it is an individual decision, to be sure. If I had the chance to tell your brother, I would say "Bro, you get to make your decisions. The doctors will not go ahead without your agreement to any procedure. Being informed by your team what the pros and cons are, think about it all, and where you want to be in a year, in five years, in ten years. And look ahead."

@boomer88 I found your comment so interesting. I felt the same way. Almost 7 years ago my then-medical team told me at some point this rare kidney disease I had might eventually lead me to dialysis, and I thought "oh, it's a long long way off, I'll deal with it then". I have watched my eGFR drop, and then 2 months ago my nephrologist brought up port placement, and swept the carpet out from under me!

Let me relate my husband's story. In 2001 he was told about his high blood pressure, and put on medication for it. But the damage to his kidneys had already started. In 2011 he had to go on dialysis [choosing peritoneal], and and fought that, also thinking his independence was gone. He wanted one last cross country tour on his motorcycle, wanted to do a lot of things, still working full time, etc. In the end, he took that long trip, and several others. Never missed a day of work. And didn't lose his independence; he made his dialysis work for him by working at it. He researched and built an inverter and deep cell battery set-up that eventually allowed exchanges out in the desert in a tent trailer. He has told this story to many, and is proof dialysis doesn't have to be end-of-life-as-you-know-it. He was transplanted 10/1/2016, and is doing great.

To both of you, yep, I can relate to where you are, how you feel, in my headspace and body. Write it out, your feelings. your questions to be shared with your medical team. Look for and lean on your support team. Will you do that?
Ginger

@boomer88, I want to drop in for a short visit and ask you how you are getting along. As a patient, I understand how different our emoti0ns and view of a procedure is from that of our loved ones. Both are good, don't get me wrong, but there is an emotional uncertainty and fear that was hard for me to explain to my husband when I was undergoing my own dialysis treatment. When I was scheduled for a procedure to replace my emergency neck dialysis line with a more durable temporary line into my chest, I was really bothered by the insertion of a 'foreign' thing into my own body. He never understood that.

How are you getting along as you proceed toward your scheduled procedure?

Sorry this is in the wrong place. My mother and I have agreed to be caregivers for a young woman who we recently met that would loose being put on the list for a liver transplant at mayo in Arizona if she didn't have one by the end of February. I have lots of questions and haven't figured out this site yet can you help.

@donnasuecarer Hi Donna, Welcome to Mayo Connect! You have posted your message in a perfect place for other caregivers to see.
I am a transplant recipient, and my husband was my transplant caregiver. You are doing an incredible act of kindness to step up to make a transplant possible for this young woman. I want to personally say, "Thank you."

Do you live near the Mayo in Arizona? Will you and your mother be sharing this duty? How can I assist you? What questions do you have to begin this conversation?

Thanks for responding.
We live about 3 hrs away from the hospital that will do the transplant. We live about 45 minutes from Ashley. She is the woman getting the transplant. On the 28th we go down to mayo for our first meeting with dr, nurses and social worker Ashley has been working with them for over a year.
I will mainly be at medical appointments and there for moral support for Ashley. My mom will be staying at the motel with Ashley and doing the hard work. I can't as I am disabled and suffer from a list of issues and have a husband with ftd my daughter who is 26 helps us a lot.
This just became a deal as of Friday the 11th of February. So we have lots of questions and will have lots more I am sure.
First questions would be what are the common diet restrictions after surgery what foods help the first few weeks.
As they will both need to pack ahead of time what is a good list of necessary items to have at motel. I know a scale, blood pressure monitor, thermometer,
What are people like when discharged from the hospital. I have had 6 surgery's and always gone home. So I will have to make lists so things aren't forgotten.
If there are things others wish the drs ect had told them ahead of time please share.
I will come back with more after I help my husband.

@donnasuecarer, The Mayo Clinic Transplant team will teach you and the patient everything that you will need to know about food and any dietary restrictions.

I realize that you are on a limited schedule of time, so I have selected some Connect discussions for you to review when you have some free time.
-Are there any other pre-liver transplant caregivers out there?
https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/
-Transplant Caregiver Advice: Got Tips to Share?
https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
-Packing question: What did you have ready for "the call"?
https://connect.mayoclinic.org/discussion/packing-question/
Donna, I know that you and your mom are eager to learn about caregiving, and these discussions are, in my opinion, a good start because you can see what others have found helpful. You can see that you are not alone with your questions. Your questions are welcomed anywhere.

Are you sharing these with your mother?

Yes I live with my mom so we can easily share. I worked as a cna in Minnesota for years in people's homes and than my own medical issues so the medical area is known for me. My mom had foster kids than adults so we have both done caregiving. The new things will be transplant and living in a hotel for 5 to 6 weeks with the person. Ashley will have to bring all her things and my mom all her stuff. I will be going back and forth on the days I am there because I can't afford a different room for my husband and I. So if my mom forgets things I can bring them later. I am one that over plans for things so my mind is going crazy that I have to wait tell the 28th to figure more out. I have talked with the social worker from mayo twice so far. But with my experience in surgery's I know it isn't always the way they say. For example I have been told both times from the social worker that Ashley will be discharged able to dress herself and all her hygiene herself. Ashley has also been told that yet when I listen to people's experiences more often than not they can't. For my mom and I we have no problem helping with that but Ashley may not be comfortable with that as we barely know her. I also know the more prepared I am the better I can support Ashley and the more support can help her do better.
We got involved because I couldn't watch as someone doesn't get the life saving medical care she needs because she doesn't have family that care or are capable and can't afford to hire someone plus her friends are young as she is and have young children so they can't she also has a young child. So the success of a transplant is going to affect him also. She has a lot on her plate and has managed it mostly on her own. So I know she is a fighter which will help. My mom and I want to be prepared for this so she can get home faster to her little boy. I know after care has a big impact on recovery so I want to know I am doing all I can.

Rosemary knows all the ins and outs....a Mayo Connect Angel!

@donnasuecarer Wow. You are so stepping up to this! And what a lucky gal Ashley is, to have people like you and your mom in her life! Being able to explain to her in terms she will understand what you may be expected to do, what her role is [get healthy again! relax! focus on getting home to her son!] is important, so there won't be any surprises. Let her know you are giving her all the help she will need. And you'll know where to get more info if you need to.

Asking your questions now, and getting it all solidified in your mind, will go a long way in helping you feel even more ready for this venture ahead of you. Bless you for this!
Ginger

My husband had a kidney transplant last May (I was the donor) and on release from the hospital (day 4) he was moving slowly but unaided. You can see it with everyone when you are there at 7 am getting the bloodwork done the new folks who are just 4-7 days post transplant all look a little tired and are moving slowly but it gets easier and by the end of week 2 it's sometimes hard to tell which ones are the patients. The first month after transplant you are at the hospital a lot for bloodwork and appointments often early as they need bloodwork before you take your morning meds, so my advice it get lots of books/movies to watch as there is a lot of downtime. My husband is in his late 70's but managed to shower by himself and dress himself once he was home - I just put his clothes/towels out. As your friend is younger am sure she will bounce back pretty quickly and will need minimal help with self-care. I would make sure you have lots of healthy snacks available as it's tricky sometimes to find these at hotels. Not sure if she's thought of what she'll be wearing but nothing that is hitting her waist as the incision is just below there and is stapled so you don't want anything rubbing against that.

Wishing your friend a good surgery and wonderful recovery, we are at 9 months now and every day I am so thankful that we have this new life.