Liver transplant - Let's support each other

Hi, @jeanannd. I want to welcome you to Connect and to say that I am happy to meet you here in this liver transplant support group. I would like to start by wishing you and your husband a very Happy Valentines Day! You do have a unique way to celebrate the day and to hopefully begin your journey to a successful transplant. 🤍
I transplanted at Mayo Rochester in 2009. My pre transplant period/before listing lasted almost 8 years while my disease Primary Sclerosing Cholangitis (PSC) slowly destroyed my liver. I remember very early when I was diagnosed, my local GI told me to - eat a healthy diet, - stay active, - to avoid alcohol and over-the-counter meds. That is pretty much the same advice I received when I was listed and waiting for my transplant.
Over the course of time and interaction with doctors, nurses, dieticians, I learned that I really didn't have to begin a new eating routine because I learned to adjust our favorite menus to lower salt, fat, sugar, red meat, etc. Think of a heart healthy diet. Unless there is a specific food or allergy for your husband, you will likely be able to be as creative as you want to be! One thing that I will mention is that over time, your husband's food choices can change and something that tasted good yesterday, will cause nausea today.

Here is a link to Healthy Lifestyle from Mayo Clinic.
- Nutrition and healthy eating
https://www.mayoclinic.org/healthy-lifestyle/nutrition-and-healthy-eating/basics/nutrition-basics/hlv-20049477
When I was at Mayo during my treatment, I saw and purchased the "Mayo Clinic Book" because it is a great guide for healthy eating and healthy living. I recommend it because of the encouragement and healthy tips.

Has your husband received his appointment schedule? Please let me know how I can assist you along the way.

Hello everyone, my husband and I are starting our journey of possible liver transplant. We are starting all the testing on Valentines Day in Jacksonville. Excited to be staring so quickly as we only found out of his condition Nov 1st. I’m reaching out because we of course don't know what to expect and we want to be as prepared on the home and health front as our Doctors will be on the medical front. My husband is healthily as far as he is active and still works out on a regular basis, tires easily and naps a couple times a day, I’m told that’s to be expected. So as far as how I can help will be more on the nutrition and support side of things. Is there a blog for healthy cooking? What foods are easily absorbed vs ones we should stay away from as far as liver health. Being new to this I/we would like any help and guidance any of you can assist with. Thank you all in advance.

Yes to everything. He has full insurance with the VA and is going thru the testing process now. Thank you I will share the information about the Ensure and ice cream.

@scooterbill, Advice - I have none, but here are some thoughts.
My first is a question: Is his doctor following his health situation, or has he shared what is going on? Since he if feeling so poorly, he might need someone to contact the doctor. A doctor can only act of he/she knows what is happening. Your son's current nausea. not eating, sleeping, and general downward curve are indications that his doctor should be kept informed.

Does your son have insurance that would cover him in a non VA setting? If he does, that could be a resource to tap into. There should be a patient rep or ombudsman at the his VA, Has his wife spoken to them for resources?

Scooterbill, Your son needs nutrition. When I had nausea my GI suggested tat I try Ensure or similar nutritional drink. Yes, I had a gag response, but drinking it cold with a scoop of ice cream helped me to get it down.

Bless your heart. Well I hope u get a response soon and it is helpful to u. Liver disease is a sneaky disease u feel fine than all of a sudden u r very sick. I hope u do not have it and they figure out why u r having these symptoms.
Take care😊💚

Good afternoon- I emailed my MD this AM regarding my itching, lack of appetite and lack of sleeping, nausea, ad irregular blood pressure results for the past 2 weeks and waiting for a response.

Actually all of the above. He is married but his wife works 5 12 hours shifts at a hospital. All he is doing now is sleeping all the time. He says he is to tired to talk and doesn't want me to mention his illness to anyone outside of our family. A little history for you: He has been going to doctors for over 3 years trying to find out what was wrong with him. He started out not being able to eat without getting sick and feeling bad. But he continued his life working and not looking like anything was wrong with him. Approximately 3-4 months ago he got Covid and then it turned into pneumonia. That put him into a downward curve. He went to the VA and they ran test and found out the problem. He is not doing well and my daughter is a RN and wants to get him somewhere that will work faster than the VA. I feel like my hands are tied and I do not know what to do. Can you give me some advice please?

On January 15, 2023 my husband was given a chance for a new life, he received a liver transplant the the Mayo Phoenix Campus. Overall, he is doing very well. The support and kindness we have been shown can not be measured, at times it is overwhelming. We promise that when we can, we will pay it forward.
Now that he no longer has cirrhosis he is no longer in need of the dreaded lactulose.

@scooterbill, I want to extend my personal welcome to the Liver Transplant support group. I am a transplant recipient and I am sorry to hear that your son is very ill. As a parent, I can understand your fears and concerns about him waiting to be eligible for a transplant.
I had my transplant in 2009, when I received a liver and kidney transplant at Mayo Clinic in Rochester. My husband was my caregiver. My pre transplant disease and progressing illness were like a nightmare for both of us, but as I sit here writing this today, I am in good health and ready to assist you and support you on your journey.

Scooterbill, Are you looking for support as a caregiver? Or do you want information about the evaluation process for liver transplant? What questions would you like to ask?

I hope they don’t either. I am trying my hardest to stay healthy to.