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New to the site and to transplants (liver)
Hello everyone!
So I just joined Mayo Connect, even though we are not at the Mayo Clinic. I hope that is OK. My fiancee goes Monday to start the examination process to get on the liver transplant waiting list. I'm a little nervous and trying not to get overwhelmed. He has hepatic encephalopathy and does not do well in communicating with doctors and hospital staff so it's up to me to get the low down on everything. And to make sure that he follows everything afterwards.
I guess, my question is this...is there anything I should prepare for? Any questions I should ask the staff to make sure he gets the best care?
Thanks everyone! I look forward to talking and encouraging you all.
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Hi. One thought is if you do make the transplant list you need to be ready to get to the hospital very quickly. Mine was AZ and I live in CO. When I made the list Mayo & my Insurance co suggested I relocate to AZ while waiting. Many/most do to make sure they are close if a liver comes available to them. We choose to remain in CO but have a go bag ready with everything needed to leave on a moments notice. We (my wife who was my main caregiver and I) got a call got a call right at midnight on a Saturday night. Was told they had a liver for me if I could make it to the hospital in AZ in about 24 hrs. We were already packed , had family ready to cover ,house, pets, etc and had a plan. Got reservations for the first redeye DIA to Phx , ubered to the airport very early Monday morning and another uber from the AZ airport straight to Mayo two hours later. Was on the operating table 30 hrs from the midnite call. Hectic and stressful but well worth it in the end. If you can relocate near the hospital that is safer. But be prepared either way. Best of luck to him (---: Prayers up for him.
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1 Reaction@sky86 Welcime - yes, scary. I was evaluated in mid-June, listed in early July, transplanted just last Sunday 10/26 and feeling overwhelmed a bit myself; however, do not despair - as @craigcraig suggests, hope you live in PHX or very near - I live in Tucson; however, many people in the community live within a few states from which they can travel.
First priority: yes, prepare for the evaluation - you will want to be made as aware as you can of his condition, your observations, your role. Start asking questions, tell them you need help, and they will help. As they are evaluating they will likely start doing some therapeutic work to manage his current symptoms as well as possible (are they being managed now by a hospital or doctor?). Be prepared to quickly flex to a test, doctor, etc, in the moment - Mayo does a great job of switching tactics on the fly to get more information about your partner’s condition and make the right determination with appropriate urgency.
Ask if you have a single point of contact (nurse coordinator) and how to reach that person if you haven’t already. You will be amazed at how much information each person you meet with throughout the week will know about your partner’s current state of health.
Reach out to the community, as you are! There are Zoom meetings each Thursday for pre and post liver transplant at Mayo, - ask a nurse for that info, or the social worker you will see - a great helper! There is also a caregiver Zoom session twice a month, I think on Fridays - again, ask.o
Start writing your questions now, ask even if you’re unsure who to ask - you will be helped! Keep a note of new questions as they come up.
Calm down, deep breaths, take care of you as much as you can. Pull in the support of friend and family, whoever that looks like for you ((which, like it or not, now includes US).
As I mentioned, I am currently in Phoenix, and will be happy to meet with you and my caregiver (sister), if we can arrange it, between me recovering, and working with a similar schedule as you while by body’s new normal trends start to emerge.
We’re staying really close to Mayo, and can meet, as I said. Right now I, it’s safest for me right there in B3 Phoenix, rather than out in the wild in Phoenix! Just let me know!
Sending positive energy and spirit!
Kelly
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4 ReactionsKelly. Congratulations on your transplant ! I have read some of your questions and posts on this site and have been rooting for you. No way I could have gone on line and tried to help people one week after my surgery last year. But am very happy they found a liver for you and you are on the other side of the transplant. Recovery can be a chore but the biggest step is out of the way. Congrats ! (---:
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1 ReactionYou have lots to learn and many will help you along the way a meld score will show the condition of the liver, I’m over 2 1/2 post transplant the recovery process is very long and diet , water , exercise all are really important that’s what helped me after losing 65lbs and I weighed 123 not good but a healthy 185 this is a great forum to ask questions
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3 Reactions@sky86, yes, you are very welcome. You don't have to be a Mayo Clinic patient to join the discussions in the forum.
Your role as the caregiver to someone about to get a liver transplant is a very important one. In addition to the helpful replies you're already received, you may wish to use the group search to find more discussions and tips. For example, see these:
- Transplant Caregiver Advice: Got Tips to Share?https://connect.mayoclinic.org/discussion/transplant-caregiver-advice-got-tips-to-share/
- Liver transplants: Caregivers? https://connect.mayoclinic.org/discussion/liver-transplants-caregivers/
- What to expect going into a transplant consult?https://connect.mayoclinic.org/discussion/what-to-expect-going-into-a-consult/
See more: https://connect.mayoclinic.org/group/transplants/?search=caregiver&index=discussions
Like others have said, keep asking questions. there are no dumb questions 🙂
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