@jodeej Thank you for sharing with me. I also meditate and pray. Our transplant clinic has a physio program for both pre and post op transplant patients. I attend every week and work out at home. This does help but every now and then the anxiety sets in. Did you ever get scared closer to the operation? Not of the outcome but the surgery itself?

@gaylea1 the anxiety still hits at our house too. My husband is the one on the list and we are still waiting. We don't talk much about the actual surgery. We talk about getting the call, but not about what happens after the call. When we toured the floor we go to I know my stomach was in knots.

His MELD is a 28 but will go up to 29 or 30 in May. He gets exception scoring due to having HCC. He's still working full-time but it is getting too be more of a struggle. I'm not sure how much longer he'll be able to do it.

I have my schedule for the evaluation at Mayo Jax and will be a busy lady that week. My caregiver situation is interesting and I will need all the help and suggestions you all have.
Here's the deal...
I live with a 83 yr old man with a pacemaker as his caegiver companion. Been here 4 yrs. We have friends and fun. And, he is in great health. Now I am the one needing care. Im 67 divorced with 3 children. I have asked my daughter 43 to come from NJ to FL for this evaluation. She is trying to get off work and doesnt really understand what we are in for. I am trying to educate her without freaking her out. Other children are raising small children and cant be of much help.
My go to guy is a brother like friend who has already been to Mayo and will go for the time I have to be tested. He promises to be there for me forever . Sounds
like a romantic novel...NOT...lol
I am not worried about coverage...I have 3 friends who are nurses and have they have offered help. I am fortunate to have a whole network of friends who will help.
My concern is how to impress upon my family the seriousness of this journey without putting unwanted pressure on them.
Thanks for sharing your thoughts...

Prayers for an angel....you are stronger than you think

@jeanne5009
You will be a busy lady the week of your evaluation. My observation is that you already are a busy woman and have a very proactive and positive outlook on life. I also suspect you are an expert 'manager' of your time and events!

You can be assured that when you go in for your evaluation, that you will gather a lot of useful information in addition to the physical part of the testing. You will learn about how everything applies to 'you' as well as the 'How to" and 'What to do'.

You are already way ahead of the plan with your network of friends who have offered to help.
It is my own experience that family members and friends do not realize the seriously complex situation that you are facing. In reality, this is the part that is not shown on those crazy (incorrect) tv depictions of transplants!

I want to share with you and all of our members and visitors, the Transplant PAGES. In this section of Connect, there are materials for transplant recipients as well as living donors. No matter where you are in your transplant journey, you will find information and support.
https://connect.mayoclinic.org/page/transplant/
jeanne5009, Here is something that I wrote and I think you will see how I found my strength and support along the way.
https://connect.mayoclinic.org/newsfeed-post/staying-positive-while-waiting-for-a-transplant/
Rosemary

@jeanne5009, I want to share a 'secret' with you, because I am seeing your encouraging posts to many of our members. I know that they won't want to miss them.
-When you want to direct your message to a particular individual, you can either key their @name (correct spelling is a must) or you can do a copy and paste of the @name just like I did for you.

Thank you for what you are doing for all of us - You are hope and encouragement.
I look forward to hearing more from you. I (We) welcome any and all questions and conversation.
Rosemary

@jodeej, @gaylea1, I was scared of the surgery. In fact, I did not even want to talk about it. One day I built up the courage to have a 'sit down' conversation with my girlfriend who is a nurse and had even spent time on a transplant floor. She was able to answer all of my questions and to provide me with some understanding of what I could expect during surgical recovery. Later when I was a patient at Mayo, I was so impressed with the compassion and the skill of the entire team, that I actually began to feel comfortable with the idea. But would have preferred to avoid it if possible.
I told my surgeon about my fears, and about my feelings of inadequacy to deal with this whole thing - she told me that I only had to show up. That they would take care of everything, and that I did not even have to look at the incision if I didn't want to....and that is exactly what happened - I showed up, they took care of everything. I woke up when I heard my son saying, "Mom, you aren't yellow anymore!"

Sometime prior to the surgery, it hit me hard and I wanted to call the whole thing off. We had gone out for a treat (bowl of soup and a dish of ice cream) and I suddenly broke into tears. My dear husband very lovingly took my hands and with confidence said (something like) "We have to do it. That's how we will begin the next chapter of our lives together."

I am happy to share if you have any questions for me.
Rosemary

@rosemarya and @gaylea1 coincidentally my husband's brother has been through this (total coincidence, not a genetic thing) so we know what to expect up to a point. We gave him access to hubby's patient portal and he normally tells us how things are going rather than the other way around! Lol I find that helpful, but it is so different when it's you and not someone else! Like I said we still get anxious or the jitters. I think what I hate the most is our family putting their lives on hold until this is over. Our son got engaged and they aren't setting a date until after the surgery. All 3 want to plan vacations, but don't dare because they want to be here when the call comes. It is what it is and we just keep going. And praying. Always praying.

Prayer is GOOD.

@yuppaal, Yes it is! Thank you for your message - hope and encouragement.

I would like to welcome you to Mayo Clinic Connect. We are here to share our experiences and to ask, answer questions, and to support and encourage each other along the transplant journey. As a volunteer mentor, I try to connect our members to conversations that might be meaningful to them. I invite you to take a look at any of our discussions groups and to join in wherever you want. Also know that you are welcome to begin your own discussion conversation.

Would you be comfortable to share a little about your self? Donor? Caregiver? Recipient?
I look forward to hearing from you.
Rosemary