Wife passing from decompensated cirrho... - British Liver Trust

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Wife passing from decompensated cirrhosis complications

Tucson1 profile image
34 Replies

My wife and I were moderate drinkers for many years. My wife, like many people, had a phobia of going to the doctors and had not had an annual check up for 26 years! She was incredibly healthy. Hardly ever had a sniffle and on no meds. I am a clinical pharmacist and am well aware of signs of liver failure. My wife hit the vodka really hard after her brother passed from lung cancer in home hospice in our family home. My wife and I were on vacation in July 2021 and I notice swelling in her legs and she was very fatigued. She never had jaundice or confusion. That same weekend I notice her belly enlarging from ascites. Got her straight into ER where she was diagnosed with decompensated liver failure. She was admitted into ICU with a critically low sodium Level. She battled with with encephalopathy on and off for 3 months. Her liver swelled up so much that she looked pregnant(they would only drain 1 pint of fluid every 2 weeks). I couldn’t believe her liver could get that large. She was so fatigued, she became bedrridden and couldn’t participate in physical therapy. She passed due to complications of a c. Diff infection. My wife was coherent and alert in hospital. The following day I visited her, she was in kidney failure couldn’t swallow and was moaning. Was the worst day of my life. Cirrhosis is truly a silent killer. My wife was 55! I struggle every day with grief. I’m still left with questions as to how she could have no symptoms until It was too late. I think she could have made it if she didn’t have septicemia from The C. Diff.

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Tucson1
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34 Replies
redpoint72 profile image
redpoint72

My sincere condolences fellaAn extremely difficult time for your self,hope fully in time, you will remember all the good times you shared.

Chris.

Tucson1 profile image
Tucson1 in reply toredpoint72

Thankyou Chris! Time and good therapy is helping me heal. I see your responses on this site and you very kind😊

Readlots profile image
Readlots

I’m so sorry for your loss. My husband and I are 54 and I can’t imagine how I’d feel losing him so young. I’ve been told by various professionals that livers are notoriously unpredictable so it’s hard to spot even if, like you, you’re a clinician. I think beating yourself up, and looking for reasons (c dif) are all part of the grieving process. It is a real roller coaster of emotions. Take care of yourself. Kirsty

Tucson1 profile image
Tucson1 in reply toReadlots

Thankyou Kirsty! My wife and I were married for 29 years! We were blindsided by her liver failure. I wish you and your husband a happy and healthy life!

Millie09 profile image
Millie09

Oh I'm so so very sorry 😞.. my condolences on the loss of your wife .Please take good care of yourself at this difficult time

God bless.. Linda x

Tucson1 profile image
Tucson1 in reply toMillie09

Thanks Linda! It’s been almost a year now since my first post. I know you responded then and now. It’s nice to know that people going through similar health issues can be of emotional support on this site

Millie09 profile image
Millie09 in reply toTucson1

Your most welcome, Yes I've been on here for 6 yrs now don't post very much but im always here for any support .

Take care x

Sophia1968 profile image
Sophia1968

I am so so sorry to read your sad post, this is such a hard situation to deal with and if not already grieving enough I think we all beat ourselves up at times like this because for some reason we want to hurt ourselves even more than we already are…… please be kind to yourself, your wife would not want you hurting, try to focus ( if you can ) on the good memories that you have, these memories will be what help you to cope going forward, when we hurt so badly it is because we loved that person so much, but remember that no matter how much it hurts , the good times still out weight this pain, please take comfort in knowing that you did your best, you got the help she needed as soon as you realised, (it was not your fought) also you were there with her when she needed you most and that would have been her great comfort, I am sending you a big hug and my condolences at this very sad time xx

Tucson1 profile image
Tucson1 in reply toSophia1968

Sophia, thankyou for the comforting words. You touched on almost everything I’m going through. I enjoy reading comments on this site because I hear of so many success stories. Thankyou again!!

isi123 profile image
isi123

My deepest condolences. One day we will beat this disease.

pushthrough profile image
pushthrough

I’m so sorry to hear this. It truly breaks my heart. I was 38 when I was diagnosed. Never in a million years even had cirrhosis cross my mind. It really is a silent killer and our media and health organizations need to start talking about this and educating people. This forum has been vital in my recovery.

You will be in my thoughts and im so sorry for your loss! 😢

Dinah48 profile image
Dinah48

My deepest condolences for your loss. Cirrhosis news is so difficult to deal with and such a rollercoaster. Please take good care of yourself now, you have been through so much. I do think it would help if if was talked about more, especially the risks which are higher than I imagine most people think.

Treeclimber62 profile image
Treeclimber62

So sorry to hear that I don't post much on here but that touched me .try and stay strong easy for me to say I've been very lucky but to loose your soul mate in life must be hard for uou .take care and all the best 👍

Mango5cm profile image
Mango5cm

my thoughts are with you at this sad and difficult time . I hope all your happy memories of your love and life together bring you soon comfort in time . Sending love and sincere condolences. Carol x

AnxiousPete profile image
AnxiousPete

So very sorry to hear this and sincerest condolences on sudden the loss of your dear wife.

Cirrhosis is truly a silent disease that goes undetected in so many until decompensation occurs.

More needs to be done to screen for this, as standard 'normal' LFTs can mask damage as many of us sadly find out either by accident in other tests or when it is severe.

kindest regards

Peter

Nip1 profile image
Nip1 in reply toAnxiousPete

So sorry to hear about your loss. My Deepest sympathy to you x🙏

ThreeSmiles profile image
ThreeSmiles

So sorry to hear about your very sad loss, Tucson1.

Kayseylou profile image
Kayseylou

My thoughts and prayers are with you at this very difficult time.

God’s Blessings

Tess 🙏

Chittychatty profile image
Chittychatty

such a sad story. This is a lessen to a lot of us. Thank you for sharing . Condolences on your loss.

Tucson1 profile image
Tucson1

I want to thank everyone for your heartfelt replies. It truly brings me to tears. I really enjoy reading the success stories on this site. I have a brother in law who was told he had 3 months to live after liver failure and four years later is almost living a normal life! I just hoped my wife could have pulled through...I drink very little anymore as I now know the true risk! Thankyou my friends, Frank(Tucson1)❤️

each day that passes will be a little easier and I’m sending you strength to endure.

teletonetapper profile image
teletonetapper

So sad upon reading your story. Our lives, unfortunately, are thrown into confusion periodically and we always ask the question "Why". You must give yourself time and allow yourself to grieve. I can tell you had a very happy life together and will have built up some very precious and warm memories. You will learn to live and come to terms with the loss but also reflect on your treasured thoughts of your wife. Do take care.

Tia2021 profile image
Tia2021

So sorry for your sad loss, sending virtual hugs, my deepest condolences. xx

kyia profile image
kyia

So sorry for your loss.

Yum-Yum profile image
Yum-Yum

So sorry for your loss, stay strong and remember to look after yourself.

Aotea2012 profile image
Aotea2012

I’m very sorry to read this. Please accept my sincere condolences.

Sallyderek profile image
Sallyderek

I’m so so sorry🧡

Roy1955 profile image
Roy1955

Sorry for your loss.I know quite a lot about C.diff.

It sounds like a hospital acquired case.

Have you asked for a copy of her hospital records?

MrsWorried profile image
MrsWorried

Sending you my deepest condolences. I lost my husband to cirrhosis 4 weeks ago and it is very hard. X

Chick_atee profile image
Chick_atee

That is so very sad. Condolences. It is amazing that you have found strength to be posting here and good to hear therapy is helping. Well done you for being proactive and helping yourself on this difficult journey.

Keep going.

jacqueline121 profile image
jacqueline121

Hi Tucson1 I’m so sorry for your loss. I imagine it’s the hardest thing in the world to go through. I hope you are getting all the support and love you need to help you through this dark time.

I don’t think it really gets easier with time we just learn to live with it.

I’m going through this too with my partner of 23 years. He had diabetes type 2 and now has end stage non alcoholic fatty liver disease. A palliative doctor spoke with us a couple of weeks ago so I’m guessing he doesn’t have long left.

He sleeps most of the time and has encephalopathy and ascites. It’s so sad to see.

Wishing you love and peace.

Tucson1 profile image
Tucson1 in reply tojacqueline121

Hi Jacqueline, I don’t check this site very often, but I just saw your reply. I am so sorry to hear about your husband. My wife, for the last 2 months of her life, battled with encephalopathy. She spent more time in hospital than at home. It’s been 17 months since she passed and it still is so painful. I’m lucky that I’m surrounded by friends and family to get the through! I will keep you and your husband in my prayers🙏

ceward204 profile image
ceward204

I saw this, and in some ways its the similar issue with my wife. Over time we were pretty much non drinkers. My wife was 56. So we may drink once or twice a year at events maybe 1 or 2 drinks.

In 2019 I was transferred to the US, and my wife drank moderately 2-3 drinks a night for 2 weeks with her brother while we got our own place.

In Jan 2020 she got covid really bad. Struggled to smell and taste, and eat. Dropped weight like crazy. Went from 219 pounds down to around 140 pounds in 5-6 months.

We took her to a hospital in Vegas in Sept, they told her she had fatty liver, her liver was mildly enlarged (20cm) her LFT's were all normal.

In Oct we took her back to a different hospital. Her liver was now just over 32 cm in size. She had portal vein thrombosis due to cyst. Developed a varacie, they banded it in precaution while deciding how to deal with the cyst blocking the portal vein and IVC vein.

They took another CT in preparation to put in shunts, and the cyst(mass) vanished, and blood flow returned to normal. A upper scope showed the varacies had vanished. We thought divine intervention.

But after 6-7 weeks in a hospital bed she was weak. They did a liver biopsy and found moderate pericellular fibrosis. Some bridging but, with an intact liver structure.

She had consistent follow ups and over the next year her liver went back from from 32cm to just under 20cm. Her LFT's remained all in the normal range.

But struggled with 2 more bouts of covid both caught in hospital.

She looked like a cancer patient she was so weak.

We moved back to Canada, and she continued work with physio, and was slowly slowly getting better.

In November 2022 she threw up some blood we thought a varacie, but it was a bleed from acid erosions. She was going to only be in for 2-3 days. But then a doctor said no she has decompensated cirrhosis.

He believed this since her billirubin was high, even though all blood tests for liver function were bang on perfect. (She showed to be iron deficient, with hemolytic anemia) Which was the reason for elevated Billi's

She caught covid in the hospital, then RSV, then HAP, and ongoing ESBAL infect, then sepsis, septic shock, survived all of that got a second bout of Hospital Acquired pneumonia, a collapsed lung. Was making it past all of that. But what I did not know, is 4 times she went toxic from use of vancomycin to deal with the infections. And although the doctor was convinced she would make it, she died one night after I left from renal failure. (Jan 30th)

In the end what had happened? The rapid weight loss from COVID overwhelmed her liver with free fat. COVID some how triggered her underlying autoimmune causing the hemolytic anemia.

Burnt out exhausted doctors confused the bilirubin with liver failure. While in the end her kidneys were slowly dying from the ongoing AKI, and then the hits from over use of Vancomycin.

Now I sit and say how did this happen? MRI/CT/Ultrasound all showed an enlarged fatty liver. How did the doctor think it was liver failure and get so focused on that. And not pay attention to the fact her kidneys were slowly getting destroyed.

So now I and our teenage daughter sit at home and say how?? How did this happen.

There are simple non invasive tests for liver disease. A Fibro scan, if you can get one get it done every year.

Tucson1 profile image
Tucson1 in reply toceward204

Hi Ceward204, I am so sorry for you loss! It’s heartbreaking to lose someone so young! I too sit around scratching my head, wondering how and why this happened. It’s been 17 months since my wife passed and I I still grieve every day. I can tell you though, that staying occupied and being surrounded by family and friends helps. I also see a therapist every week who has been very helpful. I just hope and Pray that she’s in a better place🙏

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