Are there any other pre-liver transplant caregivers out there?

@steffib, I hope that your appointments went smoothly for you. I want you to know that we are here, if you need us. Rosemary

Dear friends thru transplant,
Just now, I have scrolled thru these 9 pages of conversations, and I am amazed at the journey that we have been on together. We have learned much together and shared valuable information from our own experiences. I hope that you (caregiver and patient) are getting thru this process.
I know that this road is full of bumps and sharp turns, like a wooden roller coaster. As a recipient, I clearly remember just hanging on!

@rose999 @gaylea1 @jeanne5009, @jodeej @yuppaal @contentandwell, @chevynova67 @mauraacro, @gaybinator, @28snash @marynlogan @bamagirlgina
How are you doing? How are things, in general, going in your lives?
What information might you pass on to a new caregiver?

Strength and Hope to all of you.
Rosemary

@rosemarya my life in general is going great! Our youngest daughter graduates with her Master's in social work this weekend! We are so excited and so proud of her. This also means that we will have all our kids together, which is rare now that they are all grown. My heart is full!

@rosemarya et al, Overall, I would have to say that life is good. I must admit, I do occasionally feel an immunosuppressant "burnout" due to some side effects I have, and also due to not being able to use various medications that would be more effective than what I can use. I of course still go on though, taking them and really just being grateful that I am here, thanks to my transplant. I would very much enjoy a glass of wine with dinner too.
I would just tell a new caregiver to be patient, particularly if the afflicted person has HE episodes. Initially, before I knew what was going on, I was very difficult for my husband to handle. We did cross swords a few times. Most of the time though, even when I was having an episode, I could suddenly look at myself and realize how irrational I was being! Unfortunately, sometimes I did not. To the caregiver, remember that the person going through this is in a great deal of pain and anguish when they do not have full control of their faculties. I literally woke up every morning praying that I would not have an episode that day. Thankfully my episodes, overall, were not frequent and I went many months, almost a year, after getting on xifaxan without any episodes. They are really scary. Even now, just thinking about them, I have tears in my eyes.
Each of us seems to have experienced cirrhosis differently, some have no HE episodes, but have other symptoms that I did not have. I did not have ascites until very shortly before my transplant, and I only got bad edema when we traveled. I presume that was from the long flight and then eating foods that were more highly salted than I generally have at home. We went to Italy, before I knew I had cirrhosis, and my feet got HUGE. I had to buy some very cheap sandals that closed over my instep with velcro.
I hope and pray for all the patients and their caregivers that they will see an end to this affliction soon, and that they too will be graced with a transplant. I still think about it and it's almost surreal to me, but I thank God that I was given this gift.
JK

@jodeej Have a great weekend with your kids together, I know how special that is. We generally have a brief period of that in the summer and again over Christmas. Even though our daughter lives in NYC, about 4 - 5 hours from here, we don't see her nearly as much as we would like. I think I am going to go visit her soon, take a train there.
Congratulations to your daughter. Our two are also both on the cusp of changes. Our daughter starts a new job on Monday, a "corporate" type of job, so she is nervous. She is not really a corporate type of person but it was too good an offer to turn down. Our son is also possibly changing jobs, either that or he will get a nice incentive to stay where he is, so both of them are entering new phases in their lives. I love that they include us in all of this. I am very proud of how well they have done. As I have often commented, "the jury was out for a long time", but thankfully it came back with a good verdict.
JK

@contentandwell, Thank you for the beautifully worded message. My response is, "Amen".

@rosemayra
Im doing well..planning for my eval in June. Have to orchestrate getting my daughter down from NJ and me from near Sarasota with another caregiver to MAYO JAX . Not staying at the Gabriel House this time as I think it will be too stressful for them.
Have to connect with insurance rep to see how they are covering lodging and travel expenses. I can see how extremely unnerving this can be. I am ever so thankful to have a most caring person in my life that refuses to allow me to do what I do best...worry. Im covered and that is a blessing that gets bigger every day.
Im at the beginning of this chapter and as with all I've faced so far in my life it is guaranteed to be difficult. God has prepared me though and He knows already that I will need Him more than ever.
Im not an overly religious person but I know God watches over all of us.
He gets it!

I too have a very loving supportive husband/caregiver. Before I went on the Lactulose, there were days when I said I wouldn't want to be married to me. But he never wavers - I knew that he wouldn't - and always looks to care for me and make me feel special. The are ups and downs in everyone's lives, so I try to just take it day-by-day and look for the best. I am a glass artist/hobbyist and have not been able to work in my studio for the past couple months. I miss the creative side of me but it seems buried right now. Luckily, I can still appreciate the beauty I see, so for that I am grateful.

@amyintucson, My husband and I used to describe the pretransplant period as our "In sickness and in health" part of our marriage vows.
I want to invite your husband to take a look at out Caregiver discussion if he is interested to hear what other caregivers are saying.
https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/

Rosemary

@jeanne5009, It good to hear from you. I am glad to hear that you are getting the plans worked out. My husband took charge of all of that. He is the organizer in our house! I think your choice of word "orchestrate" is a perfect one to use!

I was assigned an insurance coordinator by my insurance company. She took care of working with the hospital to get the necessary approval for all things transplant. She even called me periodically to make sure all was being handled to our satisfaction. And to ask about how I was doing.
I know that you will reap the benefits of the advanced planning that you are doing. And then, when you have your appointment, you will be able to listen and concentrate on that part of your journey.

You are, like you say, in good hands!
Have you received your appointment schedule yet? It is amazing how thorough Mayo is in their testing.

Rosemary