New to the site and to transplants (liver)

Posted by sky86 @sky86, Oct 30 6:28pm

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.

Interested in more discussions like this? Go to the Transplants Support Group.

amandagulley90 | @amandagulley90 | Nov 12 9:39pm

In reply to @colleenyoung "@sky86, checking in. How are you and financé doing?" + (show)

@colleenyoung not good at all Tim is in fort Sanders in Knoxville and he has been put on hospice they said today he doesn't have a week left

amandagulley90 | @amandagulley90 | Nov 12 9:48pm

He is now on hospice in fort Sanders in Knoxville they said he won't make it a week

craigcraig | @craigcraig | Nov 13 4:09am

I am so very sorry. My heart goes out to you folks. Prayers out for Tim and you.

Rosemary, Volunteer Mentor | @rosemarya | Nov 13 7:30am

@amandagulley90, I want to join my thoughts and prayers to those that @craigcraig has already shared. I'm thinking of you during this difficult time. I am glad to read that Tim is receiving hospice care. My experience with hospice care is that both you and he will be provided with the support that is needed at this most difficult time.
I'll keep you and Tim in my prayers as I send a virtual hug.

liver2007 | @liver2007 | Nov 13 11:16am

All of the below info is very important. You should check other large hospital sites too. What you need is a big notebook with pockets. You need a notebook to write down every thing that they tell you and answer. There will be handouts and you need a way to file them. At the end of the appt day, go to your notebook - reread materials and file paper. So you are ready for the next time. Ask for people’s cards, so you can keep track of the Drs and other important people involved in this journey. Ask questions until you really understand. Don’t be afraid to ask again. There is a lot of info and can be overwhelming. This notebook, with your notes,questions, paperwork, separated out by appts will be a godsend in the future. Take it to every appt, before, during, and after transplant for your own records and story. Joy and Good Luck!

tiabean | @tiabean | Nov 13 12:31pm

Have go bags ready. After transplant, label pill bottle tops, get a medical alert bracelet with your transplant team emergency phone number, and ask any questions that come up. Trust me. They have heard it all! Ask him about his day besides all the health jargon. Laugh everyday. And breathe!

sky86 | @sky86 | Nov 13 12:55pm

Hello everyone! I took all of your advice. I have bags packed and ready to grab and go. I went on Amazon and found notebooks with pockets as I couldn't find any here. And we asked a lot of questions. The whole process is a bit overwhelming. I think if we prepare for the future but try to take it all one step at a time it will be ok.

Hes now taking his medicine like he should without giving me a headache about it. And I've moved on to trying to get him to eat right.

He passed the first phase!! We are moving on to stage two and all of the exams.

How are you all doing?

sky86 | @sky86 | Nov 13 1:13pm

In reply to @amandagulley90 "He is now on hospice in fort Sanders in Knoxville they said he won't make it..." + (show)

@amandagulley90 I am so sorry to hear that. I hope both of you are receiving the support and care that you need. It is a difficult road and you will need continued support in the months and years ahead.

tiabean | @tiabean | Nov 14 8:43am

In reply to @sky86 "Hello everyone! I took all of your advice. I have bags packed and ready to grab..." + (show)

@sky86 I am doing really good today. How are YOU doing?

lsheerin | @lsheerin | Nov 15 6:42am

In reply to @tiabean "@sky86 I am doing really good today. How are YOU doing?" + (show)

@tiabean
Hi!
I am so sorry for what you are going thru. My husband is just 2 years post liver transplant. It is a difficult journey, but to stay positive really helps. Have normalcy in your life. Don't make it all about the transplant all day. every day. Have friends over, if he's up to it, and talk about other things. Things you used to talk about and laugh! We went to Tamp General and they were fabulous. Always positive. I also attribute my husband's success to doing exactly what the Dr.'s told him to do and never missing an appointment, even when he didn't want to get out of bed. Just keep getting his blood work done when he's suppose to, have your bag packed, and wait for "the call". It will come. Please keep us posted. You both will be fine. Hugs