Liver transplant - Let's support each other

Hi, @gammie8, and Welcome to Connect.
I am a transplant recipient and I can assure you that your husband is not alone with his fluid build-up. It is one of those bothersome symptoms that comes with advancing liver disease and cirrhosis. I had fluids (ascites) accumulation before transplant and it increased over time, and made walking and movement difficult for me. I also needed paracenteses procedures to drain the excess fluid. My transplant was 13 years ago, and i can still remember the relief after having a paracentesis procedure. I had to wear x-large sweat pants when I entered the procedure, and had to cinch the waist when the paracenteses was finished!
After a while, I was not able to sleep on my back. but always needed to be propped up in a semi-seated position with pillows. (It would be unfair if I didn't add that I also had kidney failure and needed dialysis which might have made my fluid retention worse)
My paracentesis procedures averaged 6 to 8 liters of fluid every 10 days before transplant. I did not need any after the transplant surgery.

Is your husband having the pre-transplant evaluation as an outpatient or is he an inpatient? It is a strenuous schedule, isn't it?

Hi Rosemary, my husband is seeing the transplant team as an outpatient at this time. He does all his bloodwork locally but we travel to Houston Medical Center every 2 to 3 weeks. Yes the process is very grueling! At times we don't know if we are coming or going. Ha! But with all that we have been through from what I have read and heard if he can get relief with a new liver, it will be so worth it. My husband is 74 years old and most people are younger that have transplants. His health is getting worse because of the swelling and all the doctors tell us is that he will be better after transplant. I am so hoping so!!

@gammie8, I want to comment both of you for building a relationship with the liver care team. These are the experts who will guide you through the entire process. Before/during/after the transplant. My girlfriends tease me that I am so lucky because I have so many doctors nd nurses looking out for me and monitoring my health.
I am 73 (shhh!) now and got my transplant when I was 60. I was extremely ill before transplant due to suspected cancer in bile ducts and the unsuccessful attempt at my regional transplant center to make a diagnosis. I was inactivated from transplant list. and referred to Mayo MN. While I was waiting for the trip to Mayo, =my kidneys failed, and things got real complicated...I did get flown to Mayo from ICU and did not have cancer, and was reactivated on the liver transplant list - and evaluated for a kidney, too. I was bedbound and wheelchair bound, and with PT progressed to a walker. I worked hard, and followed doctors directions, so that I could be strong enough for a successful surgery. My surgery went 'without a hitch' according to my surgeon. I felt better immediately after the surgery. I was rolled to my room from recovery in a wheelchair while sipping on a vanilla milkshake! I spent a week in the hospital, and then 2 weeks as an outpatient before discharged to return home (Kentucky).
And you know what? My doctors said the exact same thing to me when I was feeling so bad, "You will feel better after the transplant". They were right!

I have a couple of discussions where transplant patients with different organs and different locations, have share messages of Hope. I think you will be inspired.

Snapshots of hope: Life on the other side of transplant.
https://connect.mayoclinic.org/discussion/snapshots-of-hope-life-on-the-other-side-of-transplant/
Organ Donation and Transplant: What is Your story?
https://connect.mayoclinic.org/discussion/organ-donation-and-transplant-what-is-your-story/

I was wondering if anyone has gotten HCC back after Liver Transplant. My husband 6 mon mi showed hcc in 1 lymph node in the gastro hepatic ligament Weve read resection with all the lymph nodes removed is the only possible cure .Has any one received any other potentially curative treatments .We were also offered SBRT but picked resection surgery .We read surgery is the only definitive cure if it hasn't spread already .Right now it's in 1 node so it's localized so he was offered surgery.

My husband just had TIPs done 5 days ago to help reduce his ascites from cirrhosis . His procedure took longer than expected - almost 5 hours but doctors are happy with his progress so far and his abdominal fluid seem to be minimal the last 3 days. He is still in hospital as they are monitoring him in preparation for his inguinal hernia repair tomorrow). I have a few questions: 1)For how long after should he rest and take things very easy? 2)Should he follow any special long-term diet/nutrition? (hospitals and clinicians are not great at strongly recommending nutrition ). They have scheduled a CT scan in a month to ensure the shunt is in place and working well but we just want to make sure that he is doing the best thing for healing slowly but surely.

@marinab, I hope that you have already been able to chat with your husband's doctors or nurses to learn the answers to your questions. Perhaps they will give you the information when he is in recovery.
My reading tells me that there are two general types of hernia operations —
Open hernia repair and Minimally invasive laparoscopic hernia repair. I also read that with both, it may be a few weeks before you can get back to your usual activity level.
https://www.mayoclinic.org/diseases-conditions/inguinal-hernia/diagnosis-treatment/drc-20351553
I am tagging members - @melody12, @jackie421blfdgurl, @gaylea1, who have been active in the following discussion-
https://connect.mayoclinic.org/discussion/incisional-hernia/
@marinab, Will your husband be spending night in hospital?

@rosemarya . I hope to speak with one of his doctors on the phone tomorrow (the government hospital here doesn't allow visitors due to covid restrictions). But I also wanted to get some feedback from patients who have gone through TIPs. He had open hernia repair without mesh as the senior doctors at the hospital did not want to risk any future infection with mesh in case his ascites continued. His hernia was huge. They will be keeping him in the hospital for 2 more days just to make sure things are ok since he had his TIPs procedure last week. I will also check out the hernia discussion from your link. Thank you!

@marinab I'm 3 years post transplant and just had surgery for 3 incisional hernias late May. Due to the fact of their position and size they had to cut through layers of scar tissue to implant the mesh. It was supposed to be a day operation but I was hospitalized for a week with severe pain. I'm about 6 weeks in and I still experience a lot of pain and am not near to normal activity. I'm hoping in another 2-3 weeks I'll be able to move about a little more freely.

@gaylea1 thanks for the feedback. I hear that it can take up to 2 months after hernia surgery to get back to normal, so hoping you are on the last phase of this and will be pain free. I know from watching my husband, how painful and uncomfortable hernias can be.

I made it. I just donated my left liver lobe. June 29th, 2022