New to the site and to transplants (liver)

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.

@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

Kelly. 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 ! (---:

You 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

@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/

Like others have said, keep asking questions. there are no dumb questions 🙂

@kmlowe after my transplant I had to go to a clinic at my hospital 2 1/2 hr drive one way every week for 6 weeks and they checked me out blood work, had my nutrition Dr there and everything else I was at USC/keck , my aftercare has been great and the last year was just zoom meetings with 3 of my doctors 🥼 I still do blood work every month but I still feel like everyday I’m still recovering good luck with your recovery it takes awhile it’s all part of it

@sky86, Hi, I want to Welcome you to Connect! I think this is great way to begin your fiancee and your transplant journey. My transplant was 16 years ago.
I see that you have already received lots of support and encouragement along with reading resources.
I'd like to add some basic 'last minute' ideas for you:
Take a sweater or jacket because hospitals are always cold.
Take a notebook and a pen with your questions, and to write notes.
Take a large tote bag to carry everything: water or something to drink, snack in case there is not a place/time to eat, headache medicine with you, phone charger.

Your fiancee will not get results of scans and tests yet, but you will likely meet his pretransplant nurse who will be coordinating everything and will be your contact person throughout the pretransplant period.
I hope the day(s) go smoothly.

It's a very strict process u have to have a financial back an social backing an I wish you guys nothing but positive energy and hope they say yes. If it's because of alcohol or drug addiction then it a whole different thing. Just stay positive an Ihave faith

@sky86, checking in. How are you and financé doing?

@amandagulley90 well Tim is at fort Sanders I had to take him to er last Friday and they admitted him on palletitve care an now was just put on hospice . How crazy is it just 7days ago he was Vanderbilt trying to get a liver now they said he doesn't have a week