Those who followed our Journey, know this is such a painful process of grief.
Two weeks ago, the hospital wrote it would not change the factual information in my wife's chart.
In her chart it had been written she had Biopys proven Nash Cirrhosis, which led doctors looking at ultrasounds that said things like.
"Smooth Echogenic Texture", "Patent Portal vein with proper Heptopetel flow" "Slightly enlarged with mild contour changes" and looking at blood tests with perfectly normal Liver Panels to say huh.
Well, she has cirrhosis.
The Two Biopsies were done almost a year apart.
The first one said
Nash, with Stage 2/3 Fibrosis. So she had some bridging fibrosis, but retained liver architecture, and no portal damage. In the US the NASH CRN system uses a 0-4 staging system. With 4 being Cirrhosis.
And the Second one
NASH F1 minor fibrosis no bridging.
There was so much confusion sadly with the doctors as many things can look like something else if you already assume something else.
What happened, is a resident entered into the Chart NASH Cirrhosis. Even though the Biopsys said NASH Fibrosis.
If the hospital corrected the TYPO, it would put into question the entire treatment of my wife, leading to her death.
This past Friday, in the mail was a letter saying they have agreed to remove all reference in my wife's chart that states Biopsys Proven Cirrhosis and replace it with Biopsys shows Fibrosis.
It makes little difference except in my heart. We are a family of nondrinkers and have spent most of our lives trying to look after ourselves.
So people will ask what happened to even needing a Biopsy?
We had been looking after my ailing mother, and stress was hard on my wife. She gained weight and went from her normal 150-160 to around 220 lbs. Then in January of 2020 while we lived in Las Vegas (Mom was gone by now) my wife caught COVID right when it was starting and doctors had no idea what was going on.
Between January and September of 2020, she dropped to 95-98lbs, and could not smell or taste food. Doctors kept saying it was due to the antibiotics that had been used. And it would get better.
I will say in January 2020, a CT done of her Chest/Abd showed a normal liver, and her LFTs were normal except for AST which was raised due to the pneumonia.
In Sept she was diagnosed with Fatty liver, and her liver was greatly swollen, around 29cm.
In Oct her weight continued to drop. And the hospital was gravely concerned. Some markers suggest Cancer showed up. So she had a CT/MRI/US/Biopsys done, GI scopes colonoscopy... every test you can imagine. Her LFTs again remained normal except her Billi's high and low hemoglobin.
The diagnosis was rapid onset NASH due to rapid weight loss. The masses seen were fatty lesions. One had compressed the IVC, another compressed the Portal. This led to grade 1 varacies, which vanished after the fatty masses vanished. Actually, the hospital was preparing to find a way to remove or drain them to return blood flow. When poof they vanished. We had said divine intervention.
She was extremely ill though. They determined the raised bills were due to a drug-induced hemolytic reaction. And she would need transfusions for a while. Until the condition stopped. June of 2021 was her last transfusion. Follow-up CT/US showed the liver was nearing normal size. Her color was returning to normal, she was gaining strength back. Work with Physio was going well. She was not yet back to independent walking but getting there.
We got transferred back to Canada. And in July of 2022, things went bad. She had been walking from the Kitchen to the living room. Thought she pulled a muscle. Her calf was swollen and red. We thought oh no a blood clot? Called Paramedics, and they rushed her off.
Hospital said no cellulitis. They started to treat her with Cifraxone, and Vancomycin. Next thing we know she now has a Kidney Injury and needs to be admitted. A Resident comes in about a week later and tells us Margaret has Cirrhosis. And we thought? what? You guys have done nothing but blood tests not even an imaging test. We did not know, the paperwork I brought from the US, another resident had mistyped into the system what the Biopys said. And now I have learned her LFTs were normal except for raised billis. And the resident went straight to Cirrhosis. Not realizing her sensitivity to Cifraxone, which caused her last Drug-Induced Hemolytic reaction. She suddenly was third spacing, with no ascites, but was third spacing from overuse of IV fluids. They dierused, it all went down, but they caused further kidney damage. Then started to treat the kidneys. After a month came home.
In November of 2022, she threw up blood and back we went. It was due to a grade 4 esophageal erosion. No Varicies are present. She was going to be discharged when suddenly her kidneys went south. Turned out they again had used a combination of Cifraxone, and Vancomycin. The ER doctor was confused. Her US was normal, and her LFT's except Billis were normal. They shift ER doctors so often. The one who was thinking he was dealing with Hemolysis. Was gone, and the new doctor said Nope Decompensated cirrhosis. Impacting the kidneys.
Even though Vanco Trough levels were showing toxic levels, the kidney damage was now extensive. She was admitted to the Medical ward to treat the kidney damage. Up there she caught COVID again, then RSV, both led to poor nutritional intake. She was dropping weight fast. A doctor from the Women's Clinic came in to see her and said you don't have cirrhosis. You are though decompensated from laying in Hospital beds for so long with poor nutrition. She got into an argument with the attending doctor who said no she has decompensated cirrhosis, with HFpEF. She said no she does not have HFpEF, She said look at the Dopper we did normal heart, the MUGA normal heart. You guys have screwed up her kidneys. He disagreed.
In January the next doctor started to push fluids like crazy he said I need to hydrate her kidneys... and she blew up like the michelen man. Another Specialist came over, said OMG, your drowning her Stop the fluids. She had no heart issues, but now she does due to the amount of fluid !! So they started to dieruse again to get it off. But she now had an ESBL infection and an Urinary tract infection. Went into septic shock. Ended up in the ICU. She spent 3 days in ICU, was discharged her system was responding well. Was back up on the Medical ward. A little old doctor came in ... looked at everything went to see her... said "Well Jelly bean there is NOTHING wrong with your liver... but we sure have made a mess of your kidneys" You hang in there we will fix this, it will be a bumpy road but you will be home in a few weeks.
The following week, she was off oxygen, and her blood work was looking perfect. She said Dad look I have chicken legs again !!! And they were going to send her to a rehab hospital to get her mobile.
That afternoon she would code with a mucus plug, and her lung collapsed. He got that fixed and figured 4-5 days on high-flow oxygen. And then back on track. She then caught Hospital Acquired Pneumonia and was doing well fighting that. When suddenly she turned bright red like a lobster. The Resident had no idea what was going on. We now know this is red man syndrome caused by the misuse of Vancomycin. As the student nurse and resident struggled, she started to third space again, BP was dropping they pushed bolo's she third spaced more. Not realizing the Vancomycin had put her in renal failure. That Monday she would pass in her sleep from Renal failure.
I sit here and read about everyones experience. And think wow... prior to September of 2020 she did not even have a fatty liver. So I asked Doctors Okay let us assume your right. In fact, in August of 2022, she suddenly developed cirrhosis. What are the chances you develop as you say early cirrhosis, then by November suddenly decompensated? And dead in January? It can happen if you don't look after yourself. Really I said... she was here being treated by you. And Between August and November of 2022 at home following the diet you guys gave her. While doing Physio 3 times a week. And seeing the Doctor every 2 weeks for progress checks?
Why the lengthy post again?
It has been 7 months of fighting to fix my wife's record. To fight to get the hospital to understand, she died due to mistakes at the hospital. Not due to her liver. A 58-year-old woman does not come to the hospital with Grade 4 esophageal erosion and die 65 days later.
I am now running for office, as an advocate due to mistakes the systems make.
Always have an advocate, always get second opinions.
We are all humans we all make mistakes.
My Heart is eternally broken.
Wife passing from decompensated cirrhosis complications
Answers at last and amazing good news!
Need help understanding
Cirrhosis’ of the Liver
Hello everybody, I am hoping to get some insight about varices.
