How long can I go with stage 4 cirrhosis

[canadaliz]

In Jan 18 I was diagnosed with breast cancer and the treatment, combined with NAFLD, left me with stage 4 cirrhosis. I will need a transplant but have to be cancer free for at least 3 years. March will mark 1 year. I am decompensated but doing well on meds. Had one bout of ascites but that's about it. Anyone out there gone 3 years with decompensated stage 4? I just want to live.

[Hidden]

Hello there,

Sorry to hear your story and welcome here. I was end stage decompensated cirrhosis. Initially I was misdiagnosed but after 8 months, I had the correct diagnosis. It then took the doctors 10 months to get me well enough be assessed and subsequently listed. Obviously I had made some wise lifestyle changes.

The downside was my blood group, it meant a wait of over 19 months for a donor organ to match. It was a daily struggle but I followed all the advice and well, stayed positive. It was frustrating but I got there and was transplanted 6 months ago. I am now doing well.

Good luck with the hard journey ahead and stay positive, easy to say I know.

Mark

[Smyally]

So sorry to hear your story. I first became decompensated in February 2016 through bleeding varicies. The first year was really tough whilst they got my medications right. Was in and out of hospital but you get through it. Once the medications are right things do calm down and with a healthy lifestyle you can lead a moderate life. I am now on the waiting list for a new liver but as I’ve had a liver transplant before and because of my rare blood group I have been told to expect a long wait. I wish you all best going forward in life x

[Hidden in reply to Smyally]

Aw Smiley ☹️ How long after your first liver TP did thingsstart to gowrong pease? And what were the symptoms, please - if you don’t mind me asking?

[canadaliz in reply to Smyally]

I'm A+ and both of my sons are a match and want to donate. As I have had cancer I am not eligible for a cadaver donor liver so a live donor is my only option. But again, I can't have a transplant until I have been cancer free for a minimum of 3 years.

I am focused on health, diet, exercise and faith. Prayer has for sure sustained me plus making sensible changes to my diet.

Cheers, Liz

[Smyally]

Miles it’s long story. Will pm you. Hope you’re keeping well x

[Hidden in reply to Smyally]

Smyally,

Do you mind if I ask about your blood type, I am a B+ and that comes with certain issues when it comes to donors?

Mark.

[Smyally in reply to Hidden]

I’m B+ too. I’m not sure what issues it causes apart from the fact it is a rare blood group. My issues are down to the amount of surgeries I’ve had. Would be interested to know though

[Hidden in reply to Smyally]

I will send you a PM.

[Hidden]

I'm sorry to hear of your struggle. As I sit and get ready to go visit my husband in home care i think of his state and can't believe how long one can go with stage 4 liver disease. It's going on 3 long suffering years we've fought it. And it's been a terrible 3yrs. He's fought death literally 2x..now as i think about his state today i believe it's as far as he can go. He is now barely eating 10 bites a day. Cannot talk due to his throat. What's happening there due to the disease of course. He uses Depends as he doesn't get up at all and is skin and bones. He was drained again a week ago but is once again filling quickly. Last night he slept throughout our visit which is a first. Is a coma coming next? I believe that's the final act. Only God knows. Many times i thought that was it but along came something else has had to struggle through. As they say each story is different..i pray you dont have to go through what we did..hell. Many times i prayed he would go home but along came more suffering and many times when he was able to talk and function somewhat he wanted to take his life it was so bad. But because of our beliefs he didn't. Should he stay asleep today during my visit it will tell me the inevitable..coma. God be with you.

[Hidden in reply to Hidden]

I did state my husband had stage liver cirrhosis..get this the specialist said..Aboriginal people NEVER get transplants..so we left it as that. We've also been to the hospital too many times to count for various complications so now we've quit fighting the inevitable about 6 months ago. To go to the hospital deals with the complications but not the inevitable and my husband just got tired of going back to the hospital to prolong it.

[Brett11 in reply to Hidden]

Is that true about Aboriginals? I’ve never heard that. It can’t be true? If it is, it’s bloody wrong! I’m angry now!

Cheers,

Brett

[Hidden in reply to Brett11]

I couldn't be more honest..

[Hidden in reply to Brett11]

Now it got me going. .. think I'm going to call him and get him to clarify that but record it

[Smyally in reply to Hidden]

So sorry to hear that your husband and you are suffering so much. My thoughts are with you x

[canadaliz in reply to Hidden]

Thank you for your thoughtful reply. Can I ask what the cause of your husband's cirrhosis was? I can't believe there is that degree of prejudice against Aboriginal people--that is awful and needs to be brought to the pubic forum. I'm a bit worried about what is ahead. I am only 55 and it all seems so unfair. My thoughts are with you as you navigate the end of this horrific journey.

Yours, Liz

[Hidden in reply to canadaliz]

My husband drank a lot but only stopped when diagnosed. And yes those were the exact words of the specialist "Aboriginal people dont get transplants" ...why is that I asked "I dont know, they just dont"

[Hidden in reply to canadaliz]

How did you get to stage 4?

[canadaliz in reply to Hidden]

I had breast cancer and a mildly fatty liver. The two combined took me from a healthy liver to stage 4. So frustrated. 2.9% of women will have that result. Liz

[Hidden]

He is only 59..at our visit tonight 2 nurses came in to change him and before they left one took my hand and said softly "you need to be strong"

It ended terrible as I walked out of the doors of the care home they were putting a wrapped body in a hearse. It was all I needed. I could not look only break down. I thought I was prepared for everything. It was a slap in the face..how far death is, at our doorstep.

[Hidden in reply to Hidden]

Hi stage4liverdisease,

So sorry to hear about your husband and his condition.

You did mention in other posts that your husband would stop taking his medications after he got home from the hospital - it is my understanding that most transplant teams strongly feel that a transplant should go to those who have shown their willingness to take the medications they will need to take after a transplant for years. That might be the biggest reason your husband was not put on a list. Then there could be issues with finding donor livers based on blood type and antibodies and other things that would give him the best chance. Frankly, I think you had a lousy response from that doctor - if he didn't know he should have told you he would find out and I think he should have known to begin with that [things I didn't know until I came here] blood type, antibodies, other medical conditions such as what canadaliz has run in to, abstaining from alcohol for a specific length of time, and possibly other things.

My husband was hospitalized in acute liver & kidney failure in Nov 2015, he thought I was his sister for 2 days, he was told if he kept drinking he would probably be dead in 6 months to a year. He quit while in the hospital and has not started, we see the liver doctor every 6 months and he takes his meds twice a day even though he bitches about it. He regained muscle back and putters about like he did and is mostly back to his old self except for a really bad ankle he's had for years and his high blood pressure.

I could wish things were different for you both, but I send you my best wishes and deepest sympathies.

Mary

[Hidden]

Hi canadaliz,

Wishing you the very best,

Mary