Newbie from USA

[Lara86]

Hello everyone. I'm from the USA but this forum seemed like a good one so I chose it. I was just diagnosed with liver fibrosis and I'm not sure what to do now. I came here to learn. Thanks.

[fizzy42]

Hi Lara, welcome to the forum :- ) ive also been diagnsed with fibrosis mine is advanced. The main thing i believe is to have a clean healthy lifestyle. No alcohol, sugar, fat, salt, exercise as much as you are able. Hope this helps, i'm relatively new here as well. All the best Lynda x

[Lara86 in reply to fizzy42]

I'm not sure how advanced mine is. I started having symptoms about 3 years ago and was just diagnosed. Fatty liver was briefly mentioned over the years and I was told to lose weight. But my weight just kept going up. I gave up. I was NEVER told how serious fatty liver can be. I went to 2 different Gastros and neither of them ordered an ultrasound. I suspect mine's advanced at this point.

In the US each Dr sends us to a specialist and the specialist sends us to another. So there's pieces of the picture at various offices. Last time I checked I was a whole person but my diagnosis took so long because no one knew what the other was doing. Sigh. I don't know what's next.

[fizzy42 in reply to Lara86]

Bless you sounds quite complicated! being passed from doctor to doctor. I was also diagnosed several years ago with a fatty liver, i wasn't told either how it can progress. Mine was picked up on ct for another problem, showed huge fatty liver and spleen. I finally saw a Hepatologist and had a fibroscan which was 13.1, sounds like you need one of those!? A fatty liver can be reversed with careful diet, exercise, no alcohol etc, my hep doctor said the fibrosis can also be reversed at this point as well. Once it reaches cirrhosis I'm not so sure. Good Luck with it all, keep in touch

[mncold in reply to Lara86]

Lara86,

Hi, we are in the US, too. My husband's liver disease is different, but we have similar issues with doctors - tho ours includes the VA. One thing you need to do is make the different doctors' offices share info, which often requires you to sign some papers. With our GP, we often bring copies of any test results to the office and have them put them in his file. It can be a pain, but that is how we handle multiple doctors and a sometimes lack of sharing.

Best wishes to you,

Mary

[Saintgeorge]

A fibroscan would be helpful to diagnose your liver condition. Non intrusive and you get the score straight away. In conjunction with your bloods you will find out a bit more.

[Lara86]

So at this point what's my prognosis? The doctor who gave me the diagnosis just said she was ordering a CT which my insurance wouldn't previously do. I insisted on being tested for Hep b and c. She wants to put me on Metformin. She got a call and left the office. I left without the script. I didn't have a chance to ask any questions. She had not looked at the report before she came in the room. I feel like I'm just hanging in the wind. It's like a death sentence with no treatment.

[AyrshireK in reply to Lara86]

Have they formally given you a diagnosis of fatty liver?

I take it you've not had a liver biopsy to establish cause or exact nature of your liver disease. Blood tests can rule out the viral hepatitis conditions and perhaps give pointers towards so other causes of liver disease.

A liver biopsy should be able to see the liver at a cellular level and see what exactly is going on and stage your liver properly i.e. is it just at the fibrosis stage or more advanced. It can also look for some of the other causes of liver disease such as the auto-immune conditions.

You mention there has been talk of putting you on metformin so have you also got diabetes? Diabetes and carrying excess weight can be risk factors for Non-Alcohol Related Fatty Liver Disease - which is generally thought to be somewhat reversible given appropriate changes are made to diet, exercise and lifestyle.

This isn't a death sentence so don't go looking for 'prognosis'. You might be able to reverse this condition if you make some changes - sadly you should have been given this advice when you were first displaying symptoms.

Have a look at the British Liver Trust guidance on Non-Alcohol Related Fatty Liver Disease (NAFLD) at :- britishlivertrust.org.uk/li... to see if there are perhaps any changes you can make to your activity levels or diet to tackle the situation and make positive steps to improving your liver.

Wishing you all the very best,

Katie

[Lara86]

No biopsy. A CT scan in 2015, of my adrenals showed fatty liver, but no one really said anything. It was briefly mentioned in passing. My liver enzymes kept spiking but then they'd go down. I asked about Hep testing and they said no! Once I became even more distended my Endocrinologist ordered a CT scan but insurance wouldn't do it. So I had the ultrasound. Meanwhile my PC ordered bloodwork that came back borderline diabetic. My liver is too large and dense to see my pancreas and gallbladder. They said it would take 2 weeks to get an approval for the CT scan. And that's it.

[Hidden]

Lara86; I have cirrosis and learned about my health last year in August, since then I found myself overwhelmed with emotions and paperwork. Sorting out the exams, results, insurance and bills was not making my anxiety any better so now I have created my own chart for home where I keep all in order, from doctor to specialists and all I do is take it with me whenever I have appointments or tests; the doctors then look through it and copy what they need and all doctors know what is happening. Try it, you will find some relief; I am also in the USA and for the medical industry here, paperwork is wayyyy too much.

[Lara86]

So on a positive note I don't have Hep A, B or C. I was a nurse back in the 90s and again briefly in '04. Had a few exposures so I was a little worried about that. Anyway it's not that and it's not alcohol.

I do not know what stage of fibrosis I'm in and I still don't know exactly what diet to follow. I do know I won't drink alcohol, eat simple carbs or take any pain meds if possible. I will try to get some exercise but I work 40 hours and I'm so drained at the end of the day. My energy is gone.

On top of all this my stomach is huge, I have to wear maternity clothes. I'm always hot, so I have to wear short sleeves and layers. These things make exercise even harder. My BMI isn't quite high enough for gastric surgery and I don't know if it would even help.

I actually started a file of medical records that I could carry with me and I try to get copies of everything but the doctors rush me in and out. The one who gave me the results stopped me mid sentence to take a call and said she'd meet me at the front desk. Didn't even write me the script.

I want to thank everyone for the support. My head is spinning and I can't think straight. So it's nice to have people to talk to that understand what I'm going through. Again thank you all so much.

[dckimberly]

Welcome! I’m an American also diagnosed first in the US. I was told I was not a likely candidate for a transplant.

I came here to spend the end with my partner. It made more sense because of his career. So I went straight to general practioner. I gave them all my test results etc. I just saw and asked for my pallative meds. I ended up at one of the top transplant hospitals in the world. My surgeon is the only multi visceral tx surgeon in the country. He’s so humble and dedicated. I got to know him even better because of a young woman he had tried to save 2 years prior..transplanting 5 different organs. She was still living in the hospital. All the sc xI was stunned when the NHS wanted to put me on their transplant list! Well now I’ve had a transplant and it is keeping me alive while I wait on a better liver. Alas, the liver I got has tiny miniscual clots ruing through my liver. Still, overall, the way the NHS h@s been portrayed by the US is a big fat lie. It’s a big scam with health insurance and of course...big pharmaceutical.

I take a lot of meds, a lot. 6 pills in the a.m. an injection and laculose on top of that. Then another 4 medications at night and injections. Currently I’m on two antibiotics, and more recently, I have some sort of infection being treated with another antibiotic. I say all this to say I pay every three months for alllll those meds. How much? I pay only 31.00 for everything. It’s so socheap. Plus, when the new Hep C treatment came out I was given free. I was on the list for the first 500 in the country, but the Home Office was dragging its feet on my visa. Then my doctors told them to give it to me, now. They explained I was not far too ill to survive now, by air or by water.

I was still so shock d. In the US we always here that we are the best. It’s a lie. They put me the list after 3 days of testing. There are two liver wards at Addenbrookes. One is the regular ward. The other is the transplants. They have a huge team withdoctors, nurses, medical aids that can work on either ward.

And yr right...this forum is the best. Check out the informative pamphlets they have.

The forum members are not doctors and can't advise you on test numbers etc. but you can. Get support, and use the pamphlets. They are really good. Also, in the US? Check out the NIH blog. They have good info.

Don’t Google anything unless directed to by your specialist.

People always come with alleged remedies and none of them work. Ever. It’s best to not at that crazy stuff. Oh, and I have NEVER had to wait for appointments. Also another lie.

I am glad you found the forum!

Cheering you on!

Kimberly

(The other American in the room, lol )

[Lara86]

dckimberly thanks for sharing.

I know we aren't the best in the USA. Sometimes they tell us that. I've been to Europe multiple times and I've read a lot about it. I've heard how some people come here when the can't get on the list for transplants there. Because it's more needs based there and here it's more about money and insurance. That speaks for itself. My brother has been living in Paris but can't get citizenship, which would be my problem as well.

Hopefully I'm not so far gone that I need a transplant but I really don't know. Everything is taking so long and is soooo dragged out. And I've had little warning symptoms for years. My stool color permanantly changed 3 years ago and they kept telling me it was normal. Everything I googled said it could be my liver. My liver enzymes kept spiking and then going down again, so they kept saying it was ok. How much damage was done I this time? And I kept going to different doctors but they all kept saying it normal. Even when I told them I saw a different doctor and brought bloodwork results etc they took the names and bookword copies but no one ever sat down and put it all together. No one would even test for any of the hepatitisis and I asked multiple times! Finally now they did and thankfully I don't have that.

I reached out to a forum now that I know exactly one thing I have for sure, hopefully I can now get some direction. I will look up everything you told me to, I really appreciate it. How do I find those pamphlets you mentioned?

Thanks again so much, I wish you well and hope you are able to get all the care you need to fully recover.