Happy New Year to all! I saw my primary care doc yesterday for my annual exam, after seeing my Hepatologist in August.
Both said all of my bloodwork is normal, albeit slightly low platelets. 130’s-140’s.
I asked my primary care about 1) possible worsening, 2) measurement of fibrosis (fibroscan), and 3) predicted lifespan.
I found his answers to be very knowledgeable and well thought through- he said, that it shouldn’t worsen. It’s improved a lot and I am lucky. He compared it to a car that has a damaged hood. The car is still functional, but the hood is damaged. He said that there still is some scarring, but the amount and location is such that it isn’t interfering with the operation and function of my liver, similar to a car with a damaged hood.
I thanked him for the analogy. It really gave me a better understanding of how you can still have some “cirrhosis” and have a fully functional liver that won’t worsen if kept under proper maintenance. It doesn’t matter about if I have a fibroscan or not. I have struggled with wrapping my head around this, but this has helped me get a better picture of such a scenario and why.
I have read some medical information from Loyola University that describes the different types of cirrhosis and various patterns (or locations) of damage. I guess I am lucky to be in one of the more favorable patterns. Has anyone else read about this?
I just wanted to share this with everyone to provide some comfort and assurance. My doctor said that the liver is very resilient and that I have decades left in my life. I am 57.
Here’s wishing a Happy New Year to all! I have an auspicious kickoff to 2024, that it will be the best year ever !
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Greengal314
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This is a really good analogy. Sometimes you can read these forums and assume the worst based on other people’s journey or experience and can set the doom and gloom. It’s difficult to take positives sometimes but also good that forums like this don’t sugar coat the reality.
Hi Pete, I didn't have a fibroscan. That is what I asked- If I could have one. He said that it doesn’t matter what the results would show or wouldn’t be helpful. Regardless, my liver will never be completely healthy like a new liver.
The good news is that the damage has reversed substantially, and that the location of any remaining remnants are such that it isn’t affecting my liver’s function. He said some people aren’t so lucky. If any remnants of damage are in an unfortunate position, it can be much worse.
The doctor told me that if he didn’t know the history he would have absolutely no idea clinically that there was any damage. I am very thankful for that plus that I feel better than ever. Even my anxiety is gone.😁
I am still puzzled on the fibroscan...we have seen reversal and know although it is a tough one it can happen....is he opposed to the idea that you could be reversing - the fibroscan or a biopsy would show that?
Maybe it’s too soon for them to draw that conclusion (if they hopefully do). I was diagnosed last August (2022).
If it isn’t cirrhosis, I am not sure if the follow up and monitoring are protocol with standard treatment.? I don’t know. 🤷♀️ maybe they want to stay on the safe side.
Would any fibrosis be treated the same as a cirrhosis diagnosis? I don’t know if they are able to differentiate.? Does anyone know ? Would a F1 or F2 (scarring from alcohol) show up on an ultrasound?
So I am no Dr...but I spoke to the hep Nurse last week and she emphatically told me this is reversible. I would really push for a Fibroscan if I were you....our situations have a fair amount in common as we have noticed. I was a 9 kPa like I mentioned before and that if correct and they say they have a 96% accuracy rate - would put me as fibrosis 2. I also had the utrasound that stated the radiologist thought it was hepatic steatosis but he could not rule out cirrhosis due to a mild irregularity at the subscapsular. That could be fibrosis causing it, enlargement..a couple of things - I wish they were more specific!
I see what your Dr is saying as far as a moot point as to what direction or action would happen but not a moot point to assess if the fibrosis is reversing and if so by how much.
Fibrosis would show on an elastology ultrasound or fibroscan...that is how I understand it.
Either way...I am going at this as hard as I can and if I were you I would look at getting one done on your own if the Dr won't if that is possible for you. I worry that once we are labelled by one Dr we are doomed to that unless a biopsy is done but apparently the fibroscan is good enough that they trust it to say where you are at but again - that is without other clinical signs.
I am still not convinced I have it and I am going at this with the attitude that I AM going to heal this damage all the way...I hope you do too!
Welcoming news and a positive start to the New Year for you. Your Doctor has a great way of describing his analysis. Sincere wishes from a "chilly UK". 🌧️
That's great news, bet your so happy hearing that. I was sort of told that at my last 6 month appt last month...its taken me months to access my full NHS details in the app, and only reason I was asking re: fibroscan as that I the only number out of everything that's a bit high at 9kpa but I guess that's the only number that isn't going to drop, as its scoring the scarring? Let me know what you think but I've been through all my whole record and everything has come right back to normal since my 1st biopsy around a year ago. Sorry to go on lol, keep up the good work and Happy New year x
Thanks Pete! I guess I am as happy as I can reasonably be! Unfortunately, I don’t have any fibroscan readings to share. That is one thing that I was hoping to get, but even if it was a decent slightly high reading, the protocol would be exactly the same. So what is the difference ? (That’s a rhetorical question to myself ….lol)
Great job on your hard work and results! I never had a biopsy either. 😐. Just these puzzlingly worded ultrasounds! 😂
Well let's just hope for the best I suppose, I only had a ultra sound as I was put on that clinical trial at the start of the year to check results before and after the trial but there wasn't much in it. My name is still down for future trials, and I was down to start another one a couple of weeks ago but they contacted me last minute and said...unfortunately my results arnt bad enough to even get considered this time as meld score of 6. There's nothing unfortunate about that doc 👍😂
Thank you Greengal314 - question because my GP says similar - she said she has a scar on her hand that was from a burn from the oven - it is still there but her hand still works well despite it. Did you ever have a fibroscan...if so what was it? Mine was a 9.0 kPa which confuses me as to how I can have cirrhosis but I do have a nodular contour and ascites....so confusing...love the analogy!
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