Information or insight on Hepatitis (end stage liver failure)

Hello and welcome , Sorry about your dad . Jaundice is the yellowing of the skin , Weight loss and Ascites ( Fluid ) in the abdomen are part of E.S.L.D . How long he has can't be answered , Many here have been given the death sentence by our doctors and still are very much alive years later . Everybody is different with how this disease turns out , The lucky ones pass away in a timely manor and others seem to go on forever before they go in the end .
Why is he being turned down for transplantation ? I only know that my father and I had this talk long ago after he went through bad heart problems that if should lose his mind or go into a vegetative state he requested we take him off life support , I personally feel the same in my own case . If nothing can be done let me go for the sake of my loved ones , When it's your time to go no matter your health status you will pass on I believe . You need to find out why he's giving in first before you throw in the towel , He may just be depressed .


A. Ziffle

That's a shame and it may have been handled differently here in the states . Dany , One of our moderators is from Canada but resides in California now and she may have more knowledge of how if he desires to get examined here . Another moderator ( Connie ) has had Liver Cancer , hip problems and is around your fathers age . She has recently went through the transplant process . In fact we have a group of folks here that are above your fathers age by 10 years or less that have received transplants so it's not so much a age related thing , And having other complications can even increase the likely hood of transplant .
Honestly , I am sure he will be a different person when you see him . I had people who saw me daily for 10 years and didn't recognize me while I was in your fathers shape . Just be strong if you can , I think one of the worse things about this disease is that look of pity people develop when they look at you . I was already in physical pain but that look of horror from people close to me really was worse than any pain I had .



A. Ziffle

Thank you, for your insight and kind words.

Yes it is a lesson I have learned the hard way life it to short and I am more saddened for the lost opportunity, and my children will never know there grandfather.

From your knowledge or experience is there anything i can do to make him more comfortable he lives in a very small town on the eastern part of Canada and I live in a big city and have more access to holistic stores. (tea maybe different creams for his legs to ease the pain and swelling or vitamins) I am open to any suggestions.

Once again thank you for your insight and kind words.

NO, he lives in a small town of 500 people if that, the closest city is about a hour and half away. I know the Dr. gave him morphine for pain and he is on a lot of medication I would agree and I didn't even think herbal supplements may be dangerous and counter act with the meds he is taking, i was thinking more about the creams or cold/hot heating pads to help with swelling.

Thank you I will look in the other post as well to see what I can find.

Thank you Sandia,

And your right I won't know till I see him and I preparing myself for the worst and hoping for the best.

I to am very thankful I have the time to tell him that I love him, and the past is the past and that i harbor no anger or ill feelings, that we all make mistakes and I forgive him for his and I hope he forgives me for mine as an adult i could have mended the relationship a long time ago. I want him to know that I turned out ok he should be very proud of the women I have become. That in itself gives me peace of mind that i have the opportunity to give him closure and let him know I love him. I keep reminding myself things could be much worse and to be thankful I do have some time left with him to make all the wrongs right.

I appreciate the support more than any of you could know, I felt so alone and confused until i stumbled on the forum.

I wish all of you many blessings and please who ever reads this learn from my mistakes...

Hello, Toronto, and welcome to the forum. I'm glad you found us. They certainly do things differently in Canada...or maybe he just doesn't have access to a transplant center nearby. For the swelling, he should be taking Lasix ("water pill") if he isn't already. To help with the swelling in the legs, he should wear TEDs hose (compression stockings.) I am the person mentioned who is having a terrible time with swelling. I am getting IV Lasix as well as oral. My legs are so swollen, they are wrapping them with Ace bandage instead of using TEDs.

I am in my 60s, have hep C, and had a liver transplant 5 mos. ago. I also had liver cancer--twice. Being seen at Mayo has made all the difference. I should have died 7 yrs. ago with the first bout of cancer.

Your dad also should have received treatment for the hep C. But in the states, having hep C does not disqualify one for transplant. Since it's in the blood stream, I still have it after transplant, but at some point I will do treatment. I've had some complications since transplant, but am not ESLD as my new liver is doing just fine.

Since action was not taken with your dad when symptoms first appeared or even a decade later, that window of opportunity may have passed. You have to be ill enough to get transplant, but also well enough to survive the surgery. That may be the case with your dad. I am very, very sorry.

I've not been personally involved with hospice, but from what I've heard they are truly wonderful in making the patient comfortable and supporting the family as well. So do get them involved.

When the swelling is really bad and the skin is stretched to the max, Gold Bond Cream (not lotion) gives relief. Just rub it in well...legs, feet, belly...wherever there is swelling. His legs, as mentioned, also need compression.

Hugs,
Connie

77

If it weren't for this forum, I would not have made it, and I don't have liver disease.

I have friends and family, but this is unique and it is wonderful to have my on-line pals to work things through with.

Lots of good folks are helping each other...and it really helps.

Carol

77,
Welcome to the forum. So glad you are getting the opportunity to see your Dad. One thing I didn't see addressed is whether he is on an anti-depressants...or whether he needs them. We live in USA in a one horse town, my hubby has ESLD at age 65 and is not getting evaluated for a transplant (his choice). He was very depressed when he realized the gravity of it all. Without the anti-depressant that his Dr. prescribed he would have had a very hard time. He is now in a nursing home (we call it the local B & B) and with the painkillers and the anti depressants, he is doing fairly well most of the time. Little pain and pretty much happy most of the time. His Dr. only gave him several months in Feb 2011 and it has been 13 months, so no one has a crystal ball.

If you would have told me last March he would still be with us, I would have called you crazy...but no one knows the strength of will that exists in people. He kept saying he was ready to go last April, May June, etc. Finally, in about Sept or October, he would tell me,,,"well, do this for me cause I'm dying." I would laugh and say, "Not anytime soon, it appears." He thought that was hilarious. Search for a bit of lightheartedness with your Dad (if possible). My hubby always had a great sense of humor and sometimes that is what gets us through the day as we travel this rocky and slippery path. Sending you strength as you undertake this difficult journey. Post regularly,,,there are some wonderful helpful folks here.
Angie1953

Thoughts and prayers coming your way from South Florida!

With the right meds, draining and some IV this and that, he may rebound. Don't give up.

Though I think it was good for the doc to tell you how serious this is!

Hugs,

Carol

Thank you Carol and Sandia,

It was his Dr. who called me yesterday to tell me where he was at my brother couldn't make the call. Needless to stay its been a long night and I'm sure his nurses think i am nut case i must of called 100 times to check in him. Hoping and praying for something to hang on.

Tanya

Thinking of you and your father......

Tanya.

So sad. Glad you are there.

Carol