Liver Disease: Investigating my wife's passing
My wife passed away on Jan 30th 2023.
But, I am trying to understand what happened to her. There is still an investigation going, but she became physically decompesated while they tried to figure things out. Got COVID, RSV, caught a horrible ESBL UTI, eventually passed away after a nurse set an IV wrong on a vancomycin drip, and she got 4 times the max dosage, was toxic and passed from renal failure due to toxic vancomycin.
But the doctors kept arguing on did she have cirrhosis? not have cirrhosis was she in liver failure… it was horrible.
Anyhow while in Las Vegas they did two biopsies, as she had a mass on her liver. Left LFTs were all normal, and her CT showed fat infiltration and a slightly enlarged liver with a cyst compressing the IVC vein. MRI same fatty liver, PET fatty liver. Ultrasound said fatty liver with smooth contour, patent portal vein with proper blood flow. Portal vein pressure normal.
She had a hitial hernia, no varacies but the GI showed gastropathy? a very bad mucus lining. The GI doctor said due to portal hypertension even through the portal pressure was normal. Another doctor was saying the mucus was damaged from the acid reflux of the sliding hitial hernia.
The biopsy of the mass on the left lobe showed fibrosis grade 2, with ballooning. The other biopsy from the nonmass showed normal liver with no issues.
Her billis bounced all over the planet from normal to 2-3 times above normal. Doctor thought it was due to the AKI from the ESBL.
Her Albumin levels would bounce around a lot from normal to below normal.
All her liver panels showed normal, except GGT which was just a point or 2 above normal.
We WBC was high, her RBC low, and her Hemoglobin bounced around a lot, from just below to just normal. Every time they would give her blood or albumin her Billis would jump. She had a slightly enlarged spleen. A test showed she had abnormally high immature red blood cells and a high death rate of red blood cells.
Her INR stayed normally in the .0 to 1 range, but since she was hospital bed bound for nearly 3 months, they had been giving her heparin and her INR climbed for a while maxed out at 2, then dropped back down to 1.
She had a positive hep a hit.
An old Doctor had come in the week before she died and said your wife does not have a sick liver. I do not know how these nuts prognoses decompensated liver disease. She is severely malnourished from not eating proper at the hospital. And we need to put a feeding tube in. But her blood panels are GREAT. He said I suspect since your wife has an auto-immune cant remember the name it affects the thyroid and salivary glands he said it can impact the gallbladder, and imaging shows a lot of sludge and slightly dialted ducts. So I suspect her GGT elevation is due to that.
But on that Thursday she was great, then coded with a mucus plug from pneumonia… was pulling out like a champ, she was on optiflow, and was down to 38% they figured one or two days and she would be back on room air. On Sunday she looked really weak and had trouble talking over the optiflow.
They only had a resident on the floor that night. And she said she will be okay her numbers are good. She is just weak.
I came back Monday morning and she was gone, initially, they said sepsis, then said renal failure from Toxic Vancomycin levels.
But the one doctor keeps saying she had cirrhosis due to gastropathy.
After all that typing can a person have damaged stomach mucus from hypertensive gastropathy? While having normal portal pressure? She did have Grade 4 esophageal erosion with no bleeding.
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When I see this my tears come to my eyes. Being a post liver transplant patient, I am not sure how the prognosis took place.
Liver disease does not happen just overnight, it is a progressive mechanism and it takes time for one to know and feel liver failure. Typically, the face gets jaundiced and the stomach gathers plenty of fluid which needs to be syringed out especially in a Hospital setup. By the time once reaches this status you are already going through the process to find out the next step, which usually the hospitals responsibility.
I sincerely hope you will find some answers and hope for the very best.
My wife in the last few weeks had jaundice come and go. Her bilirubin would top out around 55-60umol/l but most of the time was in normal ranges. Her AST/ALT/LD/AKP always remained in normal ranges. It seams all the focus on this was due to what they thought was portal hypertension.
But the first sign of Fatty liver occurred in Sept of 2020. Her check in Jan of 2020 was clear. I can see no way a person can go from fatty liver diagnosis in Sept 2020 to dead Jan 2023.
She had a cyst compressing the IVC, but it then vanished.
Her major issue was her RBC and Hemoglobin which were always trending on the low side. There is a medical examiner investigation going, on due to the overdose of vancomycin.
In the 3 days, the IV was running at such a high level you could see her platelet count just drop off the map, and her UREA and Creatine levels skyrocket.
She was only 56, and prior to covid healthy… and like I said we are a non drinking family… so when the ER doctor kept going on and on about Cirrhosis.. I confused.
We did finally figure out what happened.
Jan 2020 normal liver, she was in Henderson Hospital. She was really sick (was covid) but they did do an ultrasound as her billis were above normal with normal LFT's and found a normal liver slightly enlarged 16.9cm
Sept 2020 she has now dropped from 214lbs to 115lbs not able to eat due to covid. Cant smell test, everything tastes horrible. Can't keep food down. Diagnosis fatty liver, liver is at 24cm.
Dec 2020 St Rose Hospital they now say liver cancer, with portal hypertension, 30cm liver. Masses vanish, Pet shows no cancer just an extremely fatty liver.
June 2021 Varacies have all vanished, portal hypertension gastropathy appears to be reducing. Liver function still norma.
August 2021 HSC in Winnipeg. Liver is at 21.9cm, high billi normal liver function. GI shows no Varacies.
November 2022 Grace Hospital Winnipeg. The liver is at 19.8cm high billi with normal liver function, no varacies. For some reason, they still think Cirrhosis. Even though Ultrasound and CT both show fatty liver.
She died due to chart issues, overdosing of vancomycin in a scenario of a VA-AKI leading to renal failure.
But what she had that confused so many was Aggressive non-alcoholic steatohepatitis following rapid weight loss and/or malnutrition. St Rose missed it, as she was not a bariatric patient. So did not go down this path.
She was though lucky and was a person who recovered from that. It seems it takes 2-3 years for the liver to fully recover from this.
I remember Dr. McDougal here in Winnipeg. She came out of the ICU, and he said Charles, your wife's liver panels are perfect. I think she burnt all the fat out of her liver, and it's now returned to normal function. Sadly he only started to work with her in the last 2 weeks of her life. He finally figured it out.
But the decompensation from being bed bound so long, having multiple ESBL infections, RSV, and Pneumonia, even though she was clawing back from all of that. The mistake with the vancomycin took her kidneys out.
3 months today, I walked into the hospital to a nightmare. The Doctor thought she would be going home in a week or two. And in a few hours, I would be calling a priest and asking WHAT HAPPENED????
I know sympathy from a stranger can offer little comfort at this time. But I will offer it and hold you and your wife in my prayers. Please be rest assured that she is now cradled in the loving arms of our Lord and Savior. She is at peace. God bless and keep you 🙏