@28snash, I want to welcome you to our transplant discussion group on Mayo Connect. I am happy that you have joined this discussion where you will be able to meet other transplant caregivers.
My husband was my caregiver. I received a liver/kidney in 2009. So I am always available to share with you from a recipients viewpoint. I think that you are already taking on the role be doing some preplanning and thinking ahead. That is so important because one thing that we learned is that things don't always go as planned, or according to a definite schedule.
One of the most important things that a caregiver can do is to be present/available. My husband was always 'there' for me when I needed. It even meant that he had to give up his own interests for a while. I know that it was difficult for him, and it pained me as I saw the fear in his eyes as my condition worsened over time. But then, it was a joy to see the sparkle and the smile after my transplant, as I recovered.
We took advantage of the transplant housing at the Mayo Clinic in Rochester, Gift of Life House. For 11 weeks that was our 'home' because we, too, are a great distance from Rochester. So I will suggest that you and your husband begin to investigate the transplant housing facility near your transplant center.
Where will your husband be transplanted?
Rosemary

HI @28snash! My husband is also on the liver transplant list. He was diagnosed with HCC May 30 of last year and "we" were listed on the transplant list August 3 with a score of 7. They added 21 to his score on the 3rd of the month and he should be activated this week, I'm guessing. We are also 5-6 hours from Rochester, where his surgery will take place. We were told we can stay home and drive there as we have 10 hours to report. I haven't packed a bag yet, but we do have lists hanging on our bulletin board and I've given maps and instructions of where to go to our children, as they are all grown and on their own. We have discussed the possibility of either staying at the GOL house in Rochester or possibly at our daughter's home, as she is only 3 hours from there, when he is higher on the list. We will see as time goes by what will be best for us. We are both still working full-time, but I think he may be needing to stop in the not to distant future. We shall see how his health goes. Right now his biggest frustration is the "brain fog" that causes confusion and forgetfulness. He's also very tired at the end of the day.

Hang in there! Together we can do this!! 🙂
JoDee

Hi JoDee-They told us we have to be at transplant center within 6 hours rather than 10 so that is why he is having to relocate as that is cutting it very close for us. We also found a very reasonable place to rent close to the transplant center. Thanks so much for encouragement, needed to hear that! Hopefully you guys will get the call soon with the recent exception points added. Keep us posted:)

Thanks For your response Rosemary, so good to talk to people who understand and so encouraging. He will be transplanted at Mayo in Phoenix. There is a transplant house there, but we don’t want to leave our Golden retriever behind for that long of a period so we needed a place that would allow pets.

@28snash, I'm sending my love to you and your husband. I wish you both continued strength as you continue toward transplant. When we were going thru the beginning process, and confused and frightened my doctor told me the following : "Think of it in terms of when you are getting ready to go on a big trip or a vacation. You have to pack your suitcases, and then loading everything in the van (he said station wagon) so that you will be ready to pull out of the driveway first thing in the morning." I always liked that image. I think you are doing a good job of planning and packing!
Keep in touch.
Rosemary

Thanks so much I truly appreciate it!

@28snash Sorry I've been MIA recently, we got to go babysit our grandson for the weekend! 🙂
I'm also a planner so the waiting is making me crazy. I compare it to waiting for a baby to be born, but you don't have a due date! Lol I'm glad you found a reasonable priced place to rent. We have 2 dogs, but are lucky to have friends and family that will care for them for us. I'll keep you up to date of any new news!

@rosemarya I have yet to have a bag packed, but I do have lists on the bulletin board. We went to our daughter and son-in-laws to babysit over the weekend and we did pack extra with us in case we got the call while we were there. I realized over the weekend that I can't make trips to see my family unless my husband wants to come along because it would take to long for me to get home, get him and then get to Mayo. That saddened me, but I know it's only for the short term.
We will get through this one day at a time!

@jodeej, Yes, you will get thru it. One day at a time, one foot in front of another. It is not always easy, but the rewards are worth it:-)
Rosemary