Hi Colleen,
Thank you for the connections. I'll read the links.What is causing me the most stress? Tough question. I'm not sure if it is the uncertainty of the call for surgery, the planning for the trips back to Rochester for the check-ups or my husbands encephalopathy. I think it is the combo of everything. It just gets so over-whelming and all consuming.

Well those three are a good place to start. I think talking about the uncertainty, logistics and how the changes and ups and downs of your husband's medical status affect you are all good things to talk about here on Connect. Members of the group have been there and you can lean on the knowledge and experience of people who have walked the path before you.

When will you be returning to Rochester? Have you ever used the free concierge services to make travel and accommodation arrangements?

We go back in April for his 3 month check-up. He was diagnosed last May and was officially put on the list in July, so we are relative "newbies". We have been staying at one of the Gift of Life houses when we go, so I just give them a call when we know when we will be coming. That can be a bit stressful as you don't know if you'll be able to have a room until the day before. We've only had to stay in a hotel once due to a lack of room, thankfully.

I hate the uncertainty of if or when he will get a liver. Our youngest daughter and myself have tried to be donors but our liver anatomy wouldn't work. Our son is going to have a work-up, but I highly doubt it will work as he is also smaller than my husband. I feel guilty sometimes when we talk about wanting a deceased donor liver because that means someone has to die in order for him to get one. It's such a hard thing to wrap your head around.

I've been praying for someone to come into my life near by that I can get together with just to talk. (and maybe cry. Lol) We do have a couple from church that immediately came up to us and asked what they can do to help. Thankfully they are also dog lovers, so they have been dog sitting for us when we are gone. I've been thinking about asking her if she'd like to go for coffee or supper after work some time.

We are so thankful that my husband can still work and is feeling quite well so far. There are little things like he gets cold quickly, his appetite has changed, (food is another challenge...what will he eat today) and his concentration and reasoning are struggles for him. God is certainly working on my patience!!

Sorry this is so long....it's just great to be able to bring this up with people that get it.
Have a great day!!
JoDee

@jodeej
JoDee, Three month check-up is pretty much a standard schedule. It can be modified as needed.

I am a firm believer in prayer. I would suggest, since you mentioned your church, that you request prayers for your husband and yourself during this trying time. My husband and I attend 2 separate churches, and each was most generous in their prayers, and emotional support. And a real hit to our egos, was that we had to learn to ask for help. I think you should ask that lady out for coffee - soon.

Getting cold, changing appetite, concentration issues all sound familiar to me. I imaging it is hard for you, just like it was for my husband. You do not have to be a Super Woman Caregiver! Just help him to follow the doctors directions and be available for him and spend time with him.

I want to share what my pastor told me about waiting for a deceased donor: "That person is not going to die because of you. That person is going to die anyway, any he/she has made a decision to give you that gift. That's why you should not feel any guilt."

I hope some of my chatter will give you a little bit of help.
Hugs,
Rosemary

Thank you Rosemary! That was what I needed to hear / read today. We are on the prayer list at our church, my dad's church and several others. I even had a Spanish speaking client that comes to our office put my husband on the prayer list at her church! One of my co-workers had told her where I was when we were at one of our appointments at Mayo. I didn't know about it until the wife of the minister there, who is a former client of ours, was talking to me and asked about him. Our prayer support is AMAZING!

I will ask the lady from our church out for coffee. She does understand what we are going through as her husband was diagnosed with lung cancer soon after they were married. That was 15 years ago! 🙂

I love what you pastor told you. I will remember that.

Thank you again,
JoDee

@jodeej,
My girlfriend with ovarian cancer was the source of inspiration and support for me. She alone did not shy away from difficult conversations, and we could talk heart-to-heart, soul-to-soul. We also shared much laughter in between. Another support girlfriend was a nurse who was available to talk to me in a relaxed atmosphere about some of my own personal medical fears.
Rosemary

My son worked until the day of his transplant. He has a desk job. He also has three young sons that played sports and needed a dad. He did very well with his liver surgery-the liver was split betwwen him and an 8 month old baby. On day 5 he left the hospital taking the elevator down 18 flights, walked across the street to the parking garage, and to the car. He needed no physical therapy. I think it was because he worked at keeping his life normal. Once a month he had an outpatient procedure to tie off varices and every two weeks had fluid drained from his stomach. His liver disease seems different than mine. Instead of varices I have recurring esophageal strictures. I am up to 9 in two years. This last procedure didn’t go as well as the others. My platelet counts are dropping faster-now about 60. The doctor said everything went well but there was blood on the sheets. Well he said there was some bleeding so he didn’t know if he could do another one. I asked him what that meant for eating—his answer soft food. For your husband on the reasoning etc tell the doctor. It could be a sign of HE starting. My first sign was during a card game where I was keeping score-in the middle of the game I forgot how to add. I was ashamed so I lied and said I had a headache. As a patient at times you want to protect your loved ones, other times because of frustration you treat a caregiver harder than you would a stranger. I have seen the before and after—the after is really worth the struggle.

Thank you for giving me some hope. I am having a terrible time with my meds and my stomach. I am pre-op on a list (8 months now). How did you deal with the stress of waiting?

Hang in JoDee....you have a long path and your talking about the struggles you are having is actually helping me
I was diagnosed 2 years ago and am trying to get listed.at Mayo in Jax. Lots to learn and yes my caregivers are just as eager to learn more.
This is a wonderful group and even if you dont write in..it is helpful to read what others are facing.
Good luck ...be strong.

@gaylea1 I just saw this, sorry! I deal with the stress by exercising and prayer. Talking to God really helps me and gives me strength. The people on here are great, too. I hope this helps!