This is so new to me 😷😒: My name is... - British Liver Trust

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This is so new to me 😷😒

Nonnie08 profile image
Nonnie08
β€’12 Replies

My name is Melissa. I'm a 48 yr old housewife with 5 children, 7 grandchildren, and a loving husband of 27 yrs. I was diagnosed with cirrhosis in June of 2016 after having my gallbladder removed. The surgeon got a glimpse of my liver during surgery and that's where it all began. They gave me 1-3 yrs to live because of how severe the damage was. The first year was horrible with the hospital stays and all the tests. It seems that everything was falling apart at once. My sister in law is a prayer warrier and got busy praying for me. God does answer prayers and I do believe he is answering some of mine. My liver is still only functioning at 4-7% but I am feeling better and better. I'm just looking for people that are going thru some of the same things as me. My MELD score is not high enough to get on a transplant list which is crazy. They want you to be half dead to consider you for the list. I guess I'm just waiting around for a healing or for another disease to come along.

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Nonnie08
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12 Replies
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Chelle_ profile image
Chelle_

Hi Melissa,

I was dx with Liver Cirrhosis back in 2013 when I was 32, I have a blood cancer that causes me to create sticky blood and more blood clots than normal, so essentially my liver has been suffocated in a manner of speaking. I am still working full time and feel pretty well ( I tend to ignore my body when it says slow down) I am listed for Transplant I have been since November 2016.

Whereabouts do you live I have a feeling your not in the UK? I hope you start to get on the mend soon or at least start to feel better.

Take Care!

Nonnie08 profile image
Nonnie08β€’ in reply toChelle_

Hi Chelle, thank you for replying. No I don't live in the UK but in Texas. It happened by accident that I found this site. I really like it I think. As of now, i feel better than in the past. My rbc continues to be low so I had another endoscopy and colonoscopy on Friday to check for internal bleeding. Should know in a few days. I hate the waiting game. My main complaints right now would have to be the extreme weakness in my legs and also my HE (hepatic encephalopathy). My memory was never good in the first place due to the alcoholism but is much worse now. Sounds like you have waited your share of time. How do they determine who gets put on the list there?

stephen-ormond profile image
stephen-ormond

I have cirrhosis (through drinking) I have been sober since (17 months) and so frightened to find out more

Millie09 profile image
Millie09

Hi nonnie08 , good to hear you feel better in yourself now. I have cirrhosis. 10yrs now. Was given 6 months to live ( alcohol related) i had ascites. Muscle wastage no appetite. Losing blood very tired and nausea. Dont get me wrong i have relapsed along the way through passing of my dad and other mental health issues

At present i have mild hepatic encephalopathy. Crazy sleep patterns etc.. my fibro score is 27 of which is high and end stage.

The liver is one amazing organ ..it has carried me through 10yrs i never thought i would see. How much longer i do not know . Like yourself my meld score is not high enough for any transplant assesment as yet.

The only thing i can suggest is carry on with what you are doing. Healthy eating etc.. no alcohol and be mindful of medication non prescribed. Hope all continues well for you.. 😊

β€’ in reply toMillie09

Hi Millie

How come you weren't considered for a transplant 10 years ago when you were told you had 6 months to live?

Well done on carrying on for so long though. Wish you many more years of hopefully better health.

Klodian

Nonnie08 profile image
Nonnie08β€’ in reply toMillie09

Ya millie09, as hard as it is, I need to put this cirrhosis on the back burner and focus on other things in my life. Thank you!

Millie09 profile image
Millie09β€’ in reply toNonnie08

That's exactly what i do nonnie , even thought it still lurks around whatever time i have left i do not let it get in the way .only when i know it will cause a problem. You keep smiling that lovely smile 😊

Millie09 profile image
Millie09

Hi KLODIAN.

Your guess is as good as mine. I was in liver failure, but at the time i was not aware of it.

Like you are now.. it was all complexity new to me , i had no idea what ascites was , all i know is u looked like i was majorly pregnant. Had 3 drains done in my 6 weeks in hospital; was on lots of drips containing vitamins due to malnutrition.

When i was finally discharged that is when i was told if i had not been admitted to hospital with the ascites i would have been dead in 6 months. You cant even be considered for transplant untill at least 6 months sober, thats the way it is im afraid.

Dont get me wrong, it has not been easy ; even now i still suffer with the long term affects of end stage .

All i can do is listen to any advise i am given by my hepatologist and try to get on with my life day by day. Thank you for your kind wished.. Hope things are ok with you ... Linda

Careful1 profile image
Careful1

God bless you β™‘

LorraineLouise profile image
LorraineLouise

Nonnie08,

Last year,

I too was having surgery, colon resection, when the surgeon saw my liver. He came out to my family after surgery and asked my family how much I drank? They all began laughing because I am sixty and probably have had 10 drinks my whole life. Just never cared for alcohol.

That’s when my testing began. After scans, labs, and biopsy it was determined that I have PBC.

I was put on Urso and that was a huge adjustment to my system. Took almost a year to get used to it.

I as wall feel pretty good.

I get a lot of headaches since taking the Urso but other than that no too much else these days.

My labs are still elevated and probably always will be.

I have learned to go by how I feel and not pay to much attention to the numbers.

Wishing you the same. Enjoy the time with your family and beautiful grandchildren.

I always try to remember that No One is promised tomorrow whether sick or not.

Nonnie08 profile image
Nonnie08β€’ in reply toLorraineLouise

Thank you so much LorraineLouise. I'm not sure what PBC is or how serious. I just do as much as I can to help me feel as tho I am doing my part. Not not too much though that it makes me feel as though my disease is taking over my life. I pray you are doing well. πŸ‘

Cara78 profile image
Cara78

I am so sorry to read that. Il say a wee prayer too for you. You look so happy in your picture. Read up on alternative medicine for your sclerosis if you havnt already. I know turmeric (ground in milk) is good for liver. My thoughts are with you and glad you feel better. Diet is everything now.

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