Mayo Clinic Connect
My 37 yr old son will need a liver, I’m 64 could I be a good candidate as a live donor?
I appreciate this information. Can late stage cirrhosis have the improvement potential you mention?
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HI, I am still in evaluation, but when I was first diagnosed ended up in the ICU severely decompensated. I went in for an infection in my leg where I had injured myself. When the Dr. told me I had ESLD(laennec’s cirrhosis-alcoholic) and the ramifications of such a diagnosis,, all I could think was that this was the end. But when I was discharged I knew I didn’t want to cash out. I am only in my 40s. So the first thing I did was realize that alcohol was what would kill me, so I quit. This has to be the number one priority! It was a little tough for a while,but as time passed I lost any desire. I have a saying that you will never quit anything unless you really want to.My desire to stay alive was greater by far than my desire for a beer.It has been a little over 3 yrs. The other thing you have to make yourself do is take prescribed medications as directed. This was difficult for me as I had never even taken aspirin before, so the nausea was terrible. It took about a year before I could handle it. Diet is also difficult. As a mechanic and parts man all my life .most of my meals came out of a paper bag and were eaten standing up while working. Breakfast was a coffee and a bagel with about 3 cigarettes for a chaser.(P.S. quit smoking the same way 10 yrs ago, just decided I really wanted to) But After multiple visits to the nutritionist I have about got that handled.I said all that to say this, I still have ESLD. However, with the changes I have made in my lifestyle I am doing OK., all things considered. I still need a transplant, and the disease is still progressing,,but not as fast ,I think. I still have problems that sometimes land me in the hospital.,But the upside is sometimes I feel almost normal for a couple of days here and there. I am pretty sure I would have never made it this far if I hadn’t changed my ways. As a matter of fact I can say with some certainty that I probably would not be here.If you listen to your Hepatolagist and follow their instructions, you can slow down the progression in most cases, and feel a little better than you did.You probably won’t enter any triathelons, but it’s nice to have enough energy to get to the mailbox and back .Like I tell people, vomiting a couple times a week is still better than everyday. Also,let me apologize for this rambling reply Never give up! Good luck I am hoping the best for you.
Liked by Rosemary, Volunteer Mentor, ellgi
Thank you for your insight I greatly appreciate
Your welcome! Anytime.
Dear Crew ,
Good note ,,,, good luck
Keep up the hard work and get yourself listed at mutilple liver transplant centers …!!!!
Go to Florida Mayo in Jacksonville……
The are very good
DG 5 years and counting
thanx. I am already a patient at Mayo Jacksonville. I agree they are excellent! Far and away the best hospital I have ever had the need to visit, and there have been a few.
Let me first say what a great job!! I am so happy that you have been able to make these positive lifestyle changes. I totally agree that our choices in life can make or break us.
Keep up the great work and it will continue to pay off!!
I truly wish you God’s speed:))
Lifestyle changes have an affect on some patients with fatty liver disease. Changes in salt intake and reductions of red-meat can lessen stress on a diseased liver, but it is my understanding that there is nothing that will revers end stage liver disease.
Liked by Rosemary, Volunteer Mentor
Hi Patti, welcome to Connect. Thank you for adding to this discussion about lifestyle affects on the liver.
If you’re comfortable sharing more, we’d like to learn more about you. Do you have experience with liver disease? What brings you to Connect?
Hi Colleen. For whatever reason, this website popped up on my feed this morning. I thought, “Why not?!” We actually came very close to listing at Mayo Jacksonville for my husband’s liver transplant in 2012. To say that our journey has been a bit different from most would be an understatement. He went from diagnosed to critically ill in the ICU at Scripps Green LaJolla in the space of about 18 months. He went from a MELD of 19, to 30 in about two weeks. He then went to 39 and actually had to be deferred from the list for a bit until he was stabilized. He was so critical, they let me know we would not be coming home without a liver. Just about everything that could go wrong, DID go wrong. After 3 months in the ICU and six months in the hospital, he was finally released from Rehab. He was transplanted in April, we came home in August. Since then, I have been very involved with the Liver Transplant Caregiver support group at Scripps. While the experience was terrifying, it was also tremendously educational. We were surrounded by staff who were more than happy to help me understand what I needed to know. They actually refer to him as their “2012 Miracle”. We were blindsided by nearly everything. Thankfully I have a background in Hospital Management and Systems. So I wasn’t at all intimidated by jargon or equipment. What we expected was the “normal” experience: diagnosis, screening, listing, phone call, surgery, week in the hospital and recovery. The biggest surprise was Hepatic Encephalopathy. We only had one episode, but it landed him in ICU in restraints for 4 days until the ammonia cleared. It is the single bit of information that I have found to be woefully lacking in the process for patients who do not have liver cancer or PSC. We have had what is seems is the ‘normal’ course of events when it comes to skin cancers as a result of a predisposition and immunosuppresant medications. It’s one of the things I constantly remind post-tx patients about. That’s pretty much it…..
Liked by Colleen Young, Connect Director
@justpatti Thank you for sharing your story about your husband’s and your journey to transplant. I am happy for both of you for that he is doing well. I had PSC, so my knowledge is pretty much limited to that disease. I appreciate your additional information. I transplanted liver/kidney in 2009)
A support group for caregivers is wonderful resource. My husband would have liked a support group when we were in the process. (there is one now) With your prior hospital background with your own caregiving experience I know that you are a great resource for those who are caregivers.
@justpatti, It is good to meet you. I invite you to look at some of our other transplant discussions and I welcome you to share your story and experiences to support some of our other members.
Rosemary, we are so fortunate to have a transplant center that is very much pro-active with patients and caregivers. There is a monthly meeting for patients and caregivers (liver, kidney, pancreas). There is a speaker for the first hour with Q & A, then a break-out session, by specific organ. There is also a monthly meeting just for caregivers. It is one of those wonderful and bittersweet experiences. There are so many success stories, but of course, some sad stories as well. One of the most remarkable things about the caregiver group, is that two of the women who have lost their husbands, still come to the group occasionally. There is no such thing as “too much” support or too much information.
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