Most know the story. Something I can't... - British Liver Trust

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Most know the story. Something I can't figure out.

ceward204 profile image
10 Replies

Most people here know my wife's story and went to the hospital with Eshauphageal erosion, but a typo on her Chart (Fibrosis vs Cirrhosis) had a dramatic impact. Doctors thought they were dealing with Cirrhosis vs NASH with Fibrosis. That was tracked down to a dictaphone error.

In reality, two weeks before, she passed the US, and Blood work showed she did not even have a fatty liver any longer. The suspicion was that her time in ICU burnt out whatever fat was left in the liver.

But her frail state and fighting so many hospital-born infections coupled with a medication mistake were too much.

I can not yet understand one thing, and I am not asking for a doctor's opinion or help to look in the proper direction.

You see, my wife, for the majority of her life, was very fit, a gym member who only gained weight during pregnancy, and depressed when we lived with my mom helping mom through her Stroke from 2015-2017.

In 2017, my wife fell on ice in the driveway and injured her hip due to the amount of pain. The hospital did a CT/US to see if there was an issue hiding with the liver or gallbladder spleen, etc... that could be radiating pain to the hip. And it came back normal.

My wife was a nondrinker, a nondrug user, and not obese; her blood work was always 100% perfect except for her thyroid: no sleep apnea, no type 2, no cholesterol issues, nothing.

In 2018, her hip was not getting better, so we went to another hospital. They ran the same gambit of tests, and everything came back normal.

In 2019, we moved to the US, and she saw a new doctor and had a full workup; everything but her Thyroid was 100% normal.

Right around New Year, she complained about an earache, then in January got sick.

The third week of January, we were rushed to the hospital. They said double lung pneumonia with an unknown infection (turned out to be COVID)

Her blood work showed normal liver function except for an elevated AST, but she also showed as having severe sepsis without septic shock. So they ran a ton of tests, imaging... A CT showed consolidation in the base of one lung, and the Liver, Kidneys, gallbladder, and spleen were normal.

In Feb and again in March, we returned to the hospital as she was complaining that everything tasted like paper; she couldn't taste or smell anything. At the time, they told her it was the Antibiotics they used. And it would get better over time. Between March and September 2020, she lost 18kg.

We went back to the hospital in Sept of 2020 concerned over the weight loss. A CT/MRI/US was ordered. They said Fatty liver, but LFTs and liver size were Normal. With a follow-up with the GP.

2 weeks later, she was constipated and not feeling good. We went back, and a new CT was ordered, and they came back saying she now has NASH, and her liver is now at 30cm. Spleen normal size. LFT's normal. They suspected cancer.

She spent 8 weeks in the hospital, more CTs, MRIs, Pet Scan US, you name it, they did it. 4 masses had formed 1 compressing the IVC, the other the portal.

She was discharged with Rapid-onset NASH. We returned in December as she through up some blood. A GI found no bleeding but found Grade 1-2 vacancies.

She was readmitted with a concern the compression of the IVC, and Portal from the masses were causing odd blood flow issues causing varacies. They were coming up with surgical options on how to treat the issue. A few days before surgery a CT was run, and all the masses had vanished. Biospsy showed NASH with grade 2-3 fibrosis, retained architecture...etc..etc. GI showed all vacancies had vanished.

A follow-up in June showed a normal liver (CT/US) back-to-normal size, no GI vacancies, and biospsy showed a fatty liver with grade 1 fibrosis. Her only issue was her hemoglobin, bouncing all over the planet. And slightly elevated Billi, they at the time felt it was a reaction again to the various antibiotics.

What no one has been able to figure out or at least tell me. How did a person with no predisposition to Fatty liver, with no hits on Hepatitis? Go from a Normal liver to a greatly inflamed liver 30cm + to normal in a year? Has anyone ever heard of a situation that can make a liver do that?

I often wonder? Was it COVID? Did covid do something that caused her liver to go crazy like that? Or was it all the super-powerful antibiotics they were hitting her with? We now know she was sensitive to Ceftraxone, which was causing the hemolytic reaction. But that does not impact the liver?

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ceward204
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10 Replies
AyrshireK profile image
AyrshireK

They said early on that Covid was impacting body organs in all manner of mysterious ways including the liver. There are people who have acute Auto Immune Liver Hepatitis that's been triggered by Covid and caused damage to their livers. There are numerous scientific studies on line about Covid and it's impact on the liver.

So many people died of / with covid and since few autopsies were done on Covid patients we won't know the full extent of what it did and didn't do to other organs of the body. You've also got the problem in that folks with other issues largely got lost and no doubt people suffered because of the hospitals being overwhelmed during the pandemic.

Sadly I feel you will never get 100% satisfactory answers about the very sad death of your beloved wife and whilst I know you are desperate for the answers at some point you do have to put it to rest and concentrate on living your own best life.

Wishing you all the best in the world and I do hope you can start to move on.

Katie

RugbyMama profile image
RugbyMama

Agree with Katie's comments here, there is more evidence coming out about the effects of covid on specific organs, I found out recently for example that they are attributing a sudden rise in adults with late onset type 1 diabetes to covid. I realise this wasn't part of your wife's scenario but just as an example.

I have seen your posts a few times and I am so sorry to hear your story, its clear you loved your wife so very much. I completely understand trying to make sense of something that feels nonsensical but please consider is this what your wife would have wanted for you, poring over the details of her death to the point you cannot move forward? I don't know all the ins and outs of this but have you considered some grief counselling? I highly doubt you are ever going to get clear cut answers about what happened to your wife unfortunately but accepting that you did all you could to get the answers could be the first step towards healing for you.

Take good care - sending you my very best wishes.

busy946 profile image
busy946

I'm so sorry for your loss. In 2020 Covid turned me from completely healthy to in hospital with jaundice and Dr's mentioning transplant. My Covid-19 symptoms weren't terribly severe compared to many people's, but I suffered a drug induced liver injury which the Dr's put down to Covid-19 infection damaging my liver as some viruses can cause this and I had not taken any drugs/ medications that could do this much damage.

I'm hopefully recovered, but I know that the situation could have gone either way at one point. I'm so sorry that your wife could not be saved.

Kate

Confused-one profile image
Confused-one in reply to busy946

Hi Kate, this is interesting. Please see my reply below. Reply or message me if you have any questions as our experiences sound extremely similar.. M

Roy1955 profile image
Roy1955

Some very nice responses from other members and I sympathise as well.What caught my eye was your mention of hospital acquired infections.

What were these infections?

Did she catch C.Diff?

ceward204 profile image
ceward204 in reply to Roy1955

The progress went like this, She was admitted on Nov 20th. As she threw up some blood. A GI was ordered, and they fond no bleeds no varices, but she had grade 4 eshaphugeal erosion. The GI doc ordered 3 days of PPI bid and home.

The ER doctor noticed on her chart is said "Biopsys Proven Cirrhosis" that was the Dictaphone error she had Fatty liver with Fibrosis grad 1-2.

He ordered 2g of Ceftriaxone, and 1g of Vancomycin for 3 days. Within hours her BP crashed, blood worked showed she was now critical on HGB, with Palettes crashing, and her Bilirubin and Creatin skyrocketing.

A liver Panel was ordered it came back normal. Beyond Bilirubin. He ordered a US thinking there as a gallbladder issue. It came back normal except for Sludge in the Gallbladder.

He ran a Hemolytic test discovered she was in a hemolytic reaction, stopped the Medications, ordered blood. A nurse got confused, and a bag of blood meant for the patient in the stretch next to her, was hung. Wrong blood type.

She went into multi organ failure.

He rushed Fluids and BOLO's pushed Albumin, her kidneys had stopped. He BP was crit. ICU was called, they said she is to critical to admit. I did not know that could happen.

But beyond miracles her kidneys started to respond. And 24 hours later she was recovering.

After 72 hours she was stabilizing, but now she has contracted an ESBL infection.

She is extremely fluid overloaded from the bolo pushs with non functioning kidneys. Now the rush was on to get fluids off, and I did not know this hospital had no dialysis. So they are pushing as hard as they can with Diuretics on fragile kidneys. While administering blood products to try and compensate for the Hemolytic reaction.

A week later she is moved to the Medicine ward to continue fluid removal and then home.

But on day 2 in the Medical ward, a woman who was COVID Positive, was mistakenly moved into her room. And she then caught covid.

They started her on remdesivir while continuing to remove fluids. After two weeks, the fluids are off, she is off Oxygen doing pretty good. But a Resident administers another medication its intended for people with fibermyagla. Margaret has a bad reaction goes into a coma.

Took two weeks they pulled her out of the coma, but now they are in a panic at her frail state.

Another doctor takes over, he says your wife does not have cirrhosis, nor does she have heart failure. He ran numerous tests Heart Doppler MUGA, Ultrasound. But she is having a bad hemolytic reaction. He wants to keep her to keep giving blood to allow the reaction to come to an end.

Since she had been in a coma, they had pushed heparin to prevent clots. It caused the Erosion to bleed on Dec 19th. For one reason or another it was not noted in her chart about the reaction to Ceftriaxone. She had a GI done, they found no bleeds beyond a little from the erosion. He halted the heparin ordered 3 days of PPI BID. And for some reason 5 days of 2g Ceftriaxone, and 1g vancomycin. Within hours her HGB crashed, her kidneys fell off the planet again.

The Doctor came back furious that they had started Ceftriaxone. He stops it starts pushing fluids and blood product. She develops a horrible thrush infection, catch's hospital acquired Pneumonia. Develops another ESBL infection.

She recovers by Jan 3rd she is stable.

They switch Doctors she gets a new doctor and he ignores the previous doctor who said do not push fluids due to her kidney condition. Pushed Fluids, he said to hydrate the kidneys. She third spaces again, is like the Michelin man. He panics starts to try and find ways to get the fluids off. She develops Pneumonia and RSV, then goes into Septic Shock on Jan 15th.

ICU steps in rushes her down. After 3 days in ICU, she recovers. She is still fighting an ESBL infection, they believe its from the Folly.

She is moved back up to the Medical ward on Jan 19th. Within a few days she is doing great off O2, starting Physio, they believe in 2 weeks she will be home.

By Jan 26th she is off IV fluids medications, she is doing good. The morning of Jan 27th they are so happy with her recovery. By 10am on the 27th she codes, a mucus plug collapses her left lung. ICU rushes up starts her on High flow oxygen she stabilized out at 100% Sat, and they begin to Wien her down. Unknown to her doctor they hang a bag of Heprin. apparenty it was part of the Code Blue Protocol. He rushes in screams at the team for not reading her chart stops the Heparin drip. She develops a bleed, GI shows no Varacies by the healing Erosion started to bleed again.

Again as part of procedure on a bleed with someone who they believe is cirrhotic.. even by now Cirrhosis has been removed from her chart. They administer 2g Ceftriaxone, and 1g of Vancomycin. Within 24 hours the doctor finds out stops the Ceftriaxone, orders blood albumin and fluids. Unknow to him a student nurse has set the IV machine wrong, and she is receiving vancomycin to fast. On the evening of the 29th they rush in stop the machine, and hope she pulls through. That evening she goes into renal failure and dies in her sleep.

It was a horrific cluster.

Confused-one profile image
Confused-one

I am sorry to hear this. Some of the core elements of your wife's problems sound similar to my experience. I had a medium-severe and particularly prolonged case of covid in March 2020 where I was ill for 6 weeks and completely wiped out for months thereafter. In May I came downstairs and my son yelled in horror as I had gone completely yellow from jaundice. This progressed rapidly to ascites as well.

My bloods were an absolute car wreck and I was diagnosed with decompensated cirrhosis. With a low salt and abstince diet, the ascites and jaundice passed in a couple of months. My specialist told me the books said it wasn't possible to return from decompensated to compensated but he had seen it once or twice. After six months my bloods were normal. I had rough ecotexture around my liver in ultrasounds and scans but no one could ever answer what I wanted to know which was what was the extent of the damage and how long might I have as a decompensated person.

After 12 months he sent me for a fibroscan (NHS England so more their choice than mine). The result was a 6.7 finding which he said he said was probably an erroneous finding given the damage and symptoms above. I asked for a repeat and at 2 years after diagnosis with a second result of 7 based on 30 plus readings, my diagnosis was reversed, as I far south of the clinical level for cirrhosis of 15.

For over two years after my covid experience, I helped run a covid forum. In that time we answered many thousands of queries and became familiar with literally thousands of people's cases. What has become clear both from my specialist and from my experience in the forums is that covid, particularly the early variants, caused a ridiculously large number of different impacts on people. As well as the obvious deaths, numerous people received permanent damage to an organ and there were many examples with liver, kidneys, and/or heart. For some, as perhaps your wife, this very sadly put them in a position where it ultimately became fatal.

A key is that covid was/is particularly norotious for exacerbating pre existing weakness and adding on its own damage. But then also it is random. I know people with no previous issues but who suffered damage to a specific organ where there is no rhyme or reason or even really a medical explanation. We do know that much of the damage covid causes is often connected to extreme inflammation damage. It can also cause the body's own immune response to go haywire and continue to attack healthy cells way after the infection has gone, crippling people's health. This is leading theory for the cause of many cases of Long Covid.

Loss of taste and smell would have been suspected to be antibiotics back then when little was known about covid but it was of course a classic covid piece of damage and long lasting for some.

The range of outcomes for people who had this sort of organ damage issue was very broad. There is a small cohort of liver sufferers who had very severe temporary damage which then reversed in a way which continues to confound my specialist but which he accepts and is pleased for me about. I have been extremely lucky. I am sorry for your loss. Everything you've written is highly consistent with many stories I came across in those two years.

ceward204 profile image
ceward204

An update: closure for me is nearly impossible. I am working on it. But losing my wife at 58 when she had been healthy her entire life is mind-boggling.

Anyhow, there is a lawsuit, but in Manitoba, under the Fatalities Act, there is a 35k cap on damages. So it's a slog as it's not about money but trying and fighting to get doctors more help.

That said, three doctors were brought before the board, 1 lost his license, and 2 are under review.

The Health Authority opened up a critical incident review. And preliminary findings came out.

1) Misdiagnosis

2) Charting Errors

3) Lack of Skill and Empathy from the responding doctor

4) Lack of timely intervention

5) Lack of proper equipment to deal with the situation

I said to them, all I want to hear is Sorry.

Removed all identifying data
YummyBear profile image
YummyBear

Oh such a shock, I only read on Ayrshire's response. I hadnt seen any mention that your dear wife had passed away. Condolences and blessings to you.

BritishLiverTrust11 profile image
BritishLiverTrust11Moderator

Hello

We're so sad to read this, and very sorry for your loss

With best wishes from all at the British Liver Trust

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