@animesh, I want to welcome you to Mayo Connect. I am happy to meet you and I am happy that you joined our discussion. I am also sorry to hear of your wife's diagnosis. She will get good care at Mayo. I can feel your fear because I also had a condition with transplant being the only option.

My husband was my caregiver. I received a liver/kidney in 2009. I think you are already being a good caregiver by thinking ahead.
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.

We stayed at 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. It is a home away from home for transplant patients and caregiver. You will meet others like yourself. You will make friends. You will be a part of caring and support while you are miles away from home. http://gift-of-life.org/

Once your wife is a transplant patient, she will have a care team that also includes a nurse and a social worker who are available for both of you. They will be be providing information and resources to you, also.

There is an active conversation by others who are caregivers. I invite you to take a look.
https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/

Come back to us with questions. We will be here.
Rosemary

@animesh

Question - How to be the best caregiver?
Answer - Love.

@animesh I am sorry to hear of your wife's condition. I too got the to the point where transplant was the only option, and that was done in September of 2016 at Mass General Hospital.
I hope all goes well for you at Mayo. Had I not gotten the transplant center when I did I would have dual listed at Mayo. Boston, like CA, tends to transplant at higher MELD scores due to the demand. Due to convenience I hope you will register too at UCLA medical center, they also have a very good transplant program. For me convenience was the deciding factor in staying in Boston, I live in southern NH, but I could not have been happier with the program there. If your wife's blood type is B or A, or AB, the transplant will likely occur at a lower MELD than if she is O type.
My husband was an excellent caregiver, sometimes a bit too solicitious, but overall he was really good. I am sure you will be too.
JK

Thanks JK for guidance about MELD and registration. Will do what needs to be done.
We don't want to rush into it and hoping that there is non-invasive cure for PH1 (Primary Hyperoxaluria, Type 1). Maybe being expecting some miracle.

Thanks @rosemarya

@animesh, I believe in miracles!

Have you looked at the Transplant Pages section of Connect? Here is the link - https://connect.mayoclinic.org/page/transplant/
Or you can access "PAGES" at top of this page. The Newsfeed section contains many "Miracle" stories as well as up-to-date reliable information presented my the Mayo staff.

There is also an active conversation among other new caregivers who share your concerns and fears about caregiving. https://connect.mayoclinic.org/discussion/are-there-any-other-pre-liver-transplant-caregivers-out-there/

Rosemary