New member with ESLD

Hello Hyde1 and welcome to HealingWell. So sorry that you have been diagnosed with ESLD. But you have come to the right forum.

Please read our educational thread in the Hepatitis Resource folder near the top of our forum. It has lot's of very good information in it about Liver disease. Also we have talked about every subject and then some concerning liver disease. So there are posts already probably about anything you want to know. You can type in say.....ascites in the google bar at the top right hand of this page and hit search and it will bring up all the posts concerning ascites.

Have your PCP refer you to a Hepatologist. They are the experts on Liver disease.

What caused it if you don't mind my asking. What ever the cause though you need to baby what's left of your healthy liver to slow the progression down. Which it appears that you have been trying to do. But each person's journey has is similarities but also have their differences. Some patients seem to stay around along time while other go relatively quick.

Have you had any CT scans or MRI's? Doctors don't really like to do biopsies when the patient gets to the end stage. Too risky.

Again welcome and we are glad you found us.

Oh by the way........I gave your post a title so that none our wonder members would miss you.

Thoughts and prayers ......

Thanks Pink. Alcohol was the cause and Nov 3rd was my 6 month sobriety date. I asked my Dr. while in the hospital what would have happened if I didn't go to the ER that day and he looked at me with stern eyes and said "you would have died". My kids popped into my head, I started to cry and haven't had a drink since.
I did have an MRI and CT scan while there. I didn't think I needed a biopsy with my condition. Maybe they are just trying to determine the severity. They have told me there is scarring and most likely need a transplant but they don't seem too concerned about time.

Dear Hyde1, I too am a new member here but you really have come to the right forum. The people here are the greatest, they totally understand where you are coming from as far as feelings, fears, hopes, disappointements and just about any and all issues about Cirrhosis. My husband seemed normal (we had signs along the way, tremors, dizziness) until he had a bleed at the end of Sept. The signs along the way were poo pooed by the doctors. Now he is at ESLD. He hardly drank, maybe a beer every six months but he does have hepatitus C. He has to go in this coming Friday for more banding, I have more questions for the doctor then. Doc said his only hope is a transplant. I hope you come here often, these are good people, WE will benefit from their wisdom. Take care, Pat

Hyde1
Welcome, glad to hear from you. So sorry to hear you are ill. And going through a divorce with kids. Wow, you sure have a lot to deal with, but you do have youth on your side. Glad to hear you quit drinking...that is a BIG step. My Hubby has ESLD from Hep C and he was doing fine for 20-25 years with Hep C, then diagnosised with cirrohsis in 2007 and finally Feb 22 was really really sick and diagnosed with esld. He has lived with a number of complications over last 8 months, but quality of life and pain is is getting worse. Symptoms are being handled with meds and diet, but he is now on morphine for pain. Liver specialists have been the greatest even though he may not seek a transplant (he goes back and forth). He was given a pretty grim time frame in Feb, but has gone 8 months now. (But I have been very strict with meds and diet.)  So..in answer to your question..my hubby has been able to stay fairly stable for 8 months without a transplant.
Hope that your problem can be totally controlled with meds and that will give you some time. I really hope that you continue to refrain from alcohol, as everyone says you will get more time by not drinking. (Aside: I don't use salt on our food, I sprinkle everything with Thyme and joke to my husband that he gets "more thyme everyday.") If possible, humor will  help, but it took us a long time feel anything was funny.

Wishing you the best...I guess none of us know "how long" we or our significant other has..we just try to make the best out of each day (sometimes there are bad days, though). Take care. Thinking of you. Post often, even if you just need to vent. Welcome.
Angie1953

Post Edited (Angie1953) : 11/7/2011 12:24:22 AM (GMT-7)

Hyde1, Welcome to Healing Well!! I found my home here about a year ago when I was at a very low place in my life. My husband was diagnosed with ESLD in June of 2010. His was from HEP C and alcohol. He drank moderately, but with HEP C, that is a no no!! He stopped drinking, and smoking to get on the transplant list, and in Oct. 2010 was turned down for evaluation because his MELD score was not high enough. I was devastated!! Everyone here welcomed me and let me know that things would change. I learned how important diet was, what the different meds do, remedies for symptoms, but most of all everyone caring gave me hope. In July of 2011, he was evaluated and placed on the list. He is listed in Pittsburgh PA, through the Veterans Adminsitration. If my calculations are correct on the waiting list web site, he is about 6 months from Transplant!!

Good advise to you is to read the information in the resource thread. Learn the terms, meds, and procedures. Follow a strict low sodium, no red meat diet. Get your bloodwork info, and keep an eye on sodium and potassium levels. Cramping and itching are a few of the side affects of the diuretics/lasiks and toxins in your blood. Calculate your MELD score. Educate yourself so you can understand your doctors and communicate with them.

And last but not least . . always remember we are here for you.

Keep us posted!!

Debbie

Jeff, you asked about why a person might not want a transplant. My Mike went back and forth at first. He didn't feel worthy of transplant, since he caused his own ESLD with alcohol and Hep C. But in his AA program he began to feel differently about him self, began to see the value of life and turned it around. Some find they don't want to stop drinking alchohol. That was Mike long ago..."I'm just dying here, might as well go out happy." Well ESLD has few happy moments. You get really really sick. So he gave that notion up, of partying himself into an early grave, sobered up, and got his life back.

He is a man in his early 60's, not young like you. You may have lots of time. Let's hope this was a giant warning for you and you are not that bad (yet).

One of the posters mentioned the MELD score. This is a calculation from various blood tests uses to see how ill you are in the eyes of the UNOS folks, the folks who dole our donor livers for transplant. They have a fancy methodology to make it fair. Look that calculation up on Google, then put your own values into the calculator. MAYO has a good sight for that.

Folks generaly feel ill about MELD 7 or 8. But are not truly truly sick sick until their are in the high teens. Connie, who you see posted about had a low score for a long time, but came up with a tumor in her liver and they give you extra points for that.

Most centers transplant about 22 - 26 MELD. Mike had a 22 when he got his liver. Connie was about the same.

With good diet and proper medical management and NO BOOZE, you could have a long life.

Do you know your Hep C status? Many with liver disease have that too..acquired by transfusion (but not so much in recent years), tatoos (from uncleanly practices...often in prision were they tatoo themselves), inhaled drug use (shared straws and irritated nasal membranes), and the biggie...shared needles with IV drug use. Some here were infected during the Vietnam war in medical situations where blood is all around and it is difficult to protect yourself.

Keep is apprised.

Best, Carol

Hyde1,
Why does my husband "go back and forth" about a transplant? Good question. Depends on the day. Somedays he is afraid he won't make it past the surgery, afraid he won't get accepted for transplant, afraid he won't get a liver if accepted, We live 350 miles from the transplant hospital and I have a job here and livestock to care for. We can't afford it. He will not be able to work after the transplant anyway. We can't get to the transplant hospital fast enough if they call him. He doesn't like the transplant Drs telling him he will have to comply with what they tell him to do. He's afraid of all the tests for the evaluation, particularly the colonscopy. He's lived a full life and is ready to go. Those are a few of the "reasons" he has given for not having a transplant. He is more interested in a transplant the sicker he gets. I believe he thought that the Drs could be wrong and he could get better and go back to work. This is a constant source of tension between us. I was prepared to have an evaluation done this summer and lined up Medicare and medicaid and took him to the transplant Drs twice (total of 1400 miles)and each time he wouldn't commit. He finally told me to quit bugging him about a transplant, he didn't want one, so I did and now 2 months later he wants an evaluation, but I am back to work and winter is upon us. Picture 700 miles in a convertible through snow and ice with a very sick man, so that's the "back and forth' of it.
Angie1953

Post Edited (Angie1953) : 11/8/2011 12:36:31 AM (GMT-7)

Angie
Wow, it must be very difficult for you guys and commuting. Sounds like you have a very caring heart and a lot of patience. Your hubby is lucky to have you. I can only imagine what your hubby is going through.
Kierstin,
Do you still have routine visits or are they starting to get more spread out?

> Do you still have routine visits or are they starting to get more spread out?

Hepatatologist, about once every 3 months plus yearly and bi-yearly tests such as a MRI. General Practitioner every 6 months, he handles my pain management and other non-hep issues that are a result of the side-effects (itching, sleeplessness etc). I recently had my varices bleed (vomiting large quantities of blood is not fun, not to mention life threatening) and had to go to the hospital to have them banded and some follow-up visits but I am back to the 3 month schedule.

-K