So much confusion so much pain

[Wolivere]

I tell you I struggle every day. I look at pics of my wife from this time last year, 2 years ago 3 years ago.

My wife was never a drinker. We had a glass of wine at Thanksgiving and Christmas.

Every now and then, maybe once or twice a year. She would have a drink at our friends.

When we moved to the US and stayed with her brother. She drank with her brother on the weekends. She would pour a stiff shot, take a sip... pass it to me to dispose of.

She had a bad toothache, and was waiting for the dentist... so for a week would take a shot before bed.

But in January of 2020 she got Covid. A CT of her Chest Abdomen showed Pneumonia tied to COVID. Her liver, Gallbladder, Kidneys, Spleen came back as unremarkable. Blood except AST/AP wad normal. AST sky-high and AP was just a touch over normal.

Billi Albumin was normal.

After discharge, she struggled to eat, nothing would taste normal. She could not smell. everything smelled and tasted like rotten eggs.

Back and forth to the Doctor and hospital.

Her weight plummeted. And in Sept of 2020 she was diagnosed with Fatty liver. She walked into and out of that hospital.

In Oct 2020 she was back in weight continuing to drop lots of pain, unable to have a bowel movement.

We were told Liver Cancer.

After MRI's/CT/ECHO/PET they came back severly inflamed liver with Bridging fibrosis. Her liver was at 30cm. With 4 masses, but with a normal echogenic texture, normal portal blood flow and pressure. But one mass was compressing the IVC, and Portal vein.

She developed varacies from the Portal Thrombosis. There was a precautionary banding done, while they figured out how to return proper blood flow.

While reviewing the options. The mass vanished, the varacies vanished. We thought it was divine intervention.

During this time her LFT's all remained normal. Although her Billis was on the touch high. AST/ALP/LDH/AP all remained normal.

Over the next 6 months, her liver would slowly return to normal size. The doctors thought it was sudden on set sever nash from massive weight loss.

In July of 2021 we returned to Canada. And things went sideways.

She went to a hospital. A doctor misread her biopsys which said F1-F2 Fibrosis. And wrote in Biopsys confirmed cirhosis. A CT/Echo done at the hospital showed normal liver. Her LFTs were normal. But she had high billis.

She came home, went back in, in July of 2022 with cellulitis. Suddenly was admited with an AKI, and bad anemia. We now know it was due to a combination of Ceflaxone, and Vancomycn. Which can cause an AKI, and Hemolytic Anemia.

She was in hospital for 3 weeks came home. But was wheel chair bound due to bed sores.

In November she went back in. She had grade 4 eshaphugeal errosion. Was going to be home in 2-3 days.

But suddenly had an AKI and Anemia? yup same drug combination. Over her course she would have vanco troughs over 40.

Doctors were confused, she had cirrhosis? US shows nothing? Normal LFTs? high billis?

Then they said she has HFpEF, MUGA doppler showed normal heart. More confussion.

FInally on January 30th she passed away from Renal Failure.

I sit every day reading the reports trying to understand how someone could go from Normal to deatlhy ill so fast.

To me, it seams that the hospital caused the issues, with the combination of meds used. Then she caught covid in hospital, then RSV, then HAP... it was one thing after another.

I cry every day trying to understand how this happened.

[AyrshireK]

So sorry to hear your story and I know you have posted it before here. Sadly, other than sympathy you are unlikely to gain much help with your quest to find out exactly what went on with your wife's health. It sounds very much like she had so much going on her body eventually became over whelmed. Covid in the early days was leaving a great % of patients with multiple organ issues and no doubt it played it's role in her sad and untimely death.

You are going through the natural processes of grief just now, questioning and anger are part of the process for yourself. Have you sought out any sort of grief counselling for yourself? It might help.

Here is what they say about Grief and it's many stages.

Who developed the five stages of grief?

The five stages of grief model was developed by Elisabeth Kübler-Ross, and became famous after she published her book On Death and Dying in 1969. Kübler-Ross developed her model to describe people with terminal illness facing their own death. But it was soon adapted as a way of thinking about grief in general.

Do the five stages happen in order?

The five stages – denial, anger, bargaining, depression and acceptance – are often talked about as if they happen in order, moving from one stage to the other. You might hear people say things like ‘Oh I’ve moved on from denial and now I think I’m entering the angry stage’. But this isn’t often the case.

In fact Kübler-Ross, in her writing, makes it clear that the stages are non-linear – people can experience these aspects of grief at different times and they do not happen in one particular order. You might not experience all of the stages, and you might find feelings are quite different with different bereavements.

What are the five stages of grief?

Denial

Feeling numb is common in the early days after a bereavement. Some people at first carry on as if nothing has happened. Even if we know with our heads that someone has died it can be hard to believe that someone important is not coming back. It’s also very common to feel the presence of someone who has died, hear their voice or even see them.

Anger

Anger is a completely natural emotion, and very natural after someone dies. Death can seem cruel and unfair, especially when you feel someone has died before their time or you had plans for the future together. It’s also common to feel angry towards the person who has died, or angry at ourselves for things we did or didn’t do before their death.

Bargaining

When we are in pain, it’s sometimes hard to accept that there’s nothing we can do to change things. Bargaining is when we start to make deals with ourselves, or perhaps with God if we’re religious. We want to believe that if we act in particular ways we will feel better. It’s also common to find ourselves going over and over things that happened in the past and asking a lot of ‘what if’ questions, wishing we could go back and change things in the hope things could have turned out differently.

Depression

Sadness and longing are what we think of most often when we think about grief. This pain can be very intense and come in waves over many months or years. Life can feel like it no longer holds any meaning which can be very scary.

Acceptance

Grief comes in waves and it can feel like nothing will ever be right again. But gradually most people find that the pain eases, and it is possible to accept what has happened. We may never ‘get over’ the death of someone precious, but we can learn to live again, while keeping the memories of those we have lost close to us.

Sadly, you may never get fully satisfactory answers as to why your beloved wife died so quickly but somehow you need to regain the strength to carry on. One thing is for sure I bet your loved one wouldn't want you wallowing for an eternity but would want you to life the full life she's been denied.

Thoughts and best wishes with you.

Katie x

[Wolivere in reply to AyrshireK]

I truly appreciate the words. It has become more painful when two weeks ago the official report came in. And listed the cause of death due to misuse of Diuretics, and Vancomycin at the hospital leading to renal failure.

Which has had me look back over the past two years. Being her admission to St Rose, the confusion.

Her final consult with her liver specialist in July 2021. Who was happy as her Fibrosis score had dropped to an F1. He told her when you get back to Canada, follow up with a GI doctor but you should lead a full life. Just need to get you mobile.

It is so critical to have access and read your charts. It is so easy for someone to make a mistake. The report called that out. That a resident misread the Biopsy's report, which showed Bridging Fibrosis with an intact liver architecture, that was not impacting the portals. Gave her a Score of Ishack 2-3? Near the bottom it says the Report uses the NASH CRN scoring system. So the official diagnosis was fatty liver with Bridging Fibrosis. The resident wrote in NASH Stage 3 which in the US would be Fibrosis. So even though she had that wrong, in the US it would still have been considered Fibrosis. In Canada NASH stage 3 is cirrhosis.

Which led to so much confusion.

I cant do anything to save my wife. If I had seen her chart, I would have been able to correct that. But I can tell others to review your charts. Get second opinions. A simple typo can have massive impact on your treatment.

We all know you don't go from no Fatty liver in Jan 2020 to fatty liver in Oct 2020, to cirrhosis and dead in 2 years. The third-party reviews of the CTs and Ultrasound can find no evidence of cirrhosis...

Which makes this so heartbreaking. Some say the doctors should not have trusted the chart, and when they saw things like normal LFT's and Normal US... but it says biopsy-proven cirrhosis... that they should have called for a copy of the Biopsy to double check it.

It will take a long time to heal. This has spurred me to run in Politics here in Manitoba, Canada. To try and fix what is going on with our health care. There is no reason, our medical system should be using paper charts and fax machines in this day and age.

[isi123]

I am so sorry for your loss my condolences. At present we continue to have enormous problems that have an accurate diagnosis and follow-up. The situation you describe terrifies us, because many times we find ourselves immersed in it.

[Livmar]

OMG, I am so terribly sorry you lost your soul mate. There are so many things that can go wrong so quickly…medications, diet, environment, medical negligence.

Please take comfort in knowing that you loved her and were there for her. Sending you the most warmest sincere hugs 🫂.

Please look after yourself 🙏.

[Tucson1]

I am so sorry for the loss of your wife. What a terrible ordeal you’ve both been through! I lost my wife to end stage liver failure at the age of 55. She had no symptoms of liver failure until she developed ascites and confusion, almost overnight. My wife was a moderate drinker but never went to the doctor in 26 years. We were both blindsided by her emergency room diagnoses of decompensated liver failure. She died 4 months after her diagnoses. She may have made it to the transplant if she had developed c.diff. I often question some of the the meds they put her on which left her susceptible to a c.diff infection(Proton pump inhibitors and cephalosporin antibiotics). It has now been 18 months since she passed and I can tell you it will get better with time. I still cry everyday! She was my best friend and soulmate for 30 years. I see a therapist every week and live very close to my parents and siblings who have been a big source of comfort for

[Tucson1]

Sorry. This is a continuation of myreply which I accidentally cut off. Time has helped with my healing. I know your circumst were different to mine and my wife’s, but it seems as if we both lost our soul mates somewhat unexpectedly and are going through the same grieving process. It is painful and I miss her dearly everyday. Don’t let anyone put a time limit on your grieving. I’m now 54 and it’s been 18 months since my wife passed. I have cycled through the stages of grief. Depression is the worst and acceptance for me has still yet to come! Hang in my friend🙏

[Readlots]

I’m so sorry to hear about your wife. I was a member of a bereavement group for a while and people often said how the second year and second anniversary was harder than the first. After that you seem to live around the hole a bit less uncomfortably.

Can you object to the death certificate or write to the hospitals involved to complain. Would that make you feel better or worse? Do what you feel you need to do. If that’s politics, maybe some good will come of a tragic situation.

[Wolivere in reply to Readlots]

We have, there has been a long investigation. They have concluded she did not have Cirrhosis. But had NASH Fibrosis Grade 2-3. They say 2-3 the Biopsys done in Oct of 2020, showed Bridging Fibrosis with no septa, and retained architecture. The second Biopsys done in June of 2021 showed no Bridging and they downgraded it to an F1.

But the Doctor here was still believing she had cirrhosis. He was looking mainly at INR, her GGT was just 1-2 points consistently over normal. But her Billi's were high. Hovering close to the point that Jaundice would become visible. And her INR fluctuated between 1.1 and 1.7.

The report said those numbers are not in a range that would be considered Cirrhotic. More so that they kept going up, then coming to normal.

The found though in July of 2022 when she came in for Cellulitis on her left calf. She was given a combination of ceftriaxone vancomycin, on the same Y line. Which your not suppose to do. And ceftriaxone was given at 2g per 24 hours for 3 days and vanco at 1g every 24 hours for 3 days.

Judging from her blood smears the ceftriaxone caused a Drug-induced Hemolytic reaction, which is why her Billis jumped up. The ceftriaxone vancomycin combination caused her BP to crash, and the vancomycin dosage was to high. And caused an AKI. Which is what they admitted her for. The Kidneys began to improve. And she came home.

Then went back in November and they gave her the same combination. So the day she was to be released she crashed. The one ER Dr must have realized what happened. And stopped the Medications and started pushing fluids to try and clear it. But with the Kidney damage she third spaced and blew up like a blimp.

Then it just turned into one thing after another. The report says the cause of death was misuse of Diuretics and Vancomycin leading to Renal Failure. Causing a collapse of the cardiovascular system. She died peacefully in her sleep.

But, the report also stated the Hospital. Which is one of the 3 critical care facilities in my city, the lack of the hospital's access to dialysis equipment played a part. And the hospital should have transferred her on the Friday to a nearby hospital for dialysis. And she would have recovered. I was in shock to learn this modern huge hospital has no dialysis equipment.

Does it make me feel better? No, I cry every day. This time last year on her first hospital Visit her and I were sitting outside. She was feeding a grasshopper a donut, and we were enjoying a hotdog while sitting in the sun. I had no idea that the hospital had badly damaged her kidneys.

[Readlots in reply to Wolivere]

I’m so sorry. Nothing we say is going to take away your pain but I hope that talking about it on here helps release the pressure a bit. Sending you a virtual hub and passing the tissues

[MePo]

I just wanted to say I am so sorry for your loss and pain, and send you my love 😘

[jimbobfrisbeefreak]

Deepest sympathies for the loss of your partner Wolivere. I can't imagine the sadness and grief you are experiencing. I do understand the confusion and ruminating that plagues you now as I have some experience with it due to a similar experience that devastated me and left me wondering how I could lose all three of my children at once.

The truth is that your probably right. There likely is some culpability on the part of the doctors, medicines and testing that your lovely wife endured that ultimately took her from you. But you will run yourself ragged trying to figure it out and if you do...no one will likely believe you. Or as in my case ..I finally found the evidence I was looking for that led to me losing my 3 kids after 8 long years being immersed in the investigation. I finally had the evidence in hand. And in that moment I realized that I no longer cared to continue my relentless pursuit of justice. I no longer wanted to get at all the truth surrounding my loss. Because on that 8 year long journey I lost myself. And then I suddenly found myself again. And I no longer wanted to be concerned with what took them or who was responsible... they are gone. Nothing will bring them back. It's terrible. It's painful. It's depressing. It's tragic. But it's also life. I know it sounds trite...but it's true. You have a choice to make. You have a path to choose going forward and that path is going to affect your ability to be happy in the future. I hope you can choose to be happy. If that is your choice all you have to do is start doing things that make you happy. Do them as much as you can. As many different things as you can. For me its cycling, freestyle frisbee, flying drones and playing music. I do them every day. I wear myself out by riding 50 miles daily. I started doing it so I could sleep. Because I having difficulty sleeping was having a profoundly negative impact on my health. So I started riding. I got my sleep and my appetite back. My mood started to improve slightly also. My smile has yet to return and I have yet to laugh..but I look forward to the day that I do smile and laugh again and I like to think that my kids do as well. I'm pretty sure you understand what I'm trying to say.

I'm so sorry for your loss.

Best regards from San Diego.