Good News/Bad News: I heard absolutely... - British Liver Trust

British Liver Trust
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Good News/Bad News

Radnor
Radnor

I heard absolutely nothing for the past year regarding my liver, I had no clue how serious fibrosis is until I attempted to book holiday insurance. The gastroenteroligist I had seen did no follow ups, no further fibroscan either as I was advised would be done in October. I spoke to my GP about it and asked him to refer me to Liverpool Royal Liver Centre. I wanted to see a liver specialist. I went today and the difference is remarkable! Yes it took an hour to get there, in awful weather, but whatever my doctor wrote ensured I was seen in 7 weeks and in a clinic that specialises in liver disease. It was so well organised. I had my weight/height checked. Next a fibroscan. I have learned so much from this site so as the numbers were read out to a nurse to added instantly to my records, I realised my liver had gone downhill. I was then sent to see a consultant, a Professor no less. All the information was in front of him. I was helped out too by my Nurse Practitioner from Salford Dermatology. Even though she was on leave she replied to my email and had every letter emailed to me, all my fibroscan results, ultra sounds etc. I used these to explain my history. I explained I was just told to lose weight!!!! Bad news was I now have Cirrhosis. I have psoriasis and had been on Methotrexate for 7 years. I was shocked when he said that psoriasis alone can cause fibrosis! I said apart from my body temp being haywire I had no other symptoms. This is the case, its a silent disease. I was then sent for extensive blood tests and go back in 7 weeks. He advised a carb free diet too. I have lost 1.5 stones cutting down but I have lost weight previously on a high protein diet. Exercise is out as I'm full of arthritis, but weight drops without it. I cant stand alcohol since having EBV in 2003. Viruses can also cause liver damage said this Prof. He said if I lose weight I stand a good chance of being around in 20 years time! Looks like a full roast chicken a day is my food from now on. Good job I love meat I guess.

10 Replies
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Hidden
Hidden

It's good to hear that you've finally getting the treatment you deserve. There does seem to be a slapdash attitude by some members of staff, but I'm glad to say that these are rare. Your in safe hands now, which is good.

At the end of the day it's about YOUR health that matters. And we have to stand up for what we believe is right. I am so glad that you have shown an interest in your condition and have researched for more information. Never be afraid to ask questions. Most healthcare professionals are grateful that you have shown an interest, and are more than willing to assist. Good luck.

Radnor
Radnor
in reply to Hidden

Thank you Richard.Finding this site has been a massive help. What concerns me a lot is the people who can't speak up for themselves. I know I am overweight, I have lost some but now I know that I must banish carbs in my diet I know it will help prevent further decline in my liver. I'm sure that an advertising campaign would hit home far better if cirrhosis was made top of the agenda in a hard hitting campaign. Cholesterol was the major focus, it has now been scientifically proven that all these low fat foods are dissed. Butter, is healthier for example. The biggest obstacle for many to cut out carbs is likely to be the cost and having to cook. I am fortunate that I know this diet works, I may grow feathers and a beak from eating a lot of roast chicken!I am also lucky that I have a wonderful family. Both my daughter and son in law said they would happily be living donors if compatible. That alone makes my resolve strong. One of the reasons my BMI has increased is the fact I have shrunk by 2.5 inches. Ladies in particular are susceptible. Made a start today , reduced my sugar in tea by half. I also need to order a bp monitor, as the Keto diet drops BP. I will be removing all carb foods tomorrow. the local food bank will get a donation.The Prof I saw gave me a very positive prognosis, Lose the fat and you can live another 20 years!

Hidden
Hidden
in reply to Radnor

Hi

So pleased you got to see the right specialist, it must have made a huge difference. My consultant said I'm not poorly enough to be referred to Leeds, yet. He needs to be in my shoes for a day!! Not that I would wish it on him!! Love and hugs Lynne xxxx

Radnor
Radnor
in reply to Hidden

I live between Manchester and Liverpool so under choose and book I went to the place I felt sure I would get answers. I hope to be able to lose weight , and I go back in 8 weeks. If you dont feel right ask your GP to refer you to Leeds.Peace of mind is priceless Hazelx

Hi Hazel. It sounds like you had a good consultation and now know where you stand. I did low carb/ highish fat starting in January this year and lost three and a half stone in as many months. I was able to stop injecting insulin which was the best thing. Unfortunately since being diagnosed with cirrhosis and the months it's taken to see the hepatologist I took my eye off the ball and have gained about 10lbs. I finally saw the hepatologist yesterday who is veering towards a diagnosis of autoimmune hepatitis and is planning on doing a liver biopsy. He's not sure whether he's going to do it trans jugular or through the abdo. I'm going to get back to doing low carb properly as I know it's the only way I can lose weight. I had started to eat bread again which is probably one of the worst offenders. I just found low carb boring. I'm not a big meat eater but would happily (and unhealthily) live on carbs. Good luck..we'll do it together. Deb

Radnor
Radnor
in reply to GrandmaDylan

Its great that you too are now being seen by the right person . It makes such a difference especially when you dont just get told to lose weight. I have done this diet before and know it works brilliantly. Its only in the last 18 months I have developed a sweet tooth. I would chose steak over chocolate anytime lol. I am just investigating BP monitors as this diet can reduce BP , Less meds if it does. My cupboard will be well and truly bare, everything with carbs is going. My daughter thought the Prof was brusque, I said he has thrown down a gauntlet, I will always rise to a challenge, being positive is the only way we can get through this, I'm sure you will drop those pounds in a couple of weeks. Hazelx

Hi. That's great you've had such a positive experience with the specialists. A good rapport with the doctors must be a big bonus in going forward. I think I'll ask about a referral to Leeds, it was suggested before. I will have to tackle my diet as well as it could be better. I really didn't eat much before so eating more is a an improvement. I asked to see a dietician at the start of the year as I was losing weight despite the fluid. That didn't happen so I will ask again.

I am hoping to go away next year, maybe abroad (Will be first time flying) Do you think it would be wise to talk my gp first and did your condition affect your travel insurance a lot?

I was really interested in what you had to say about psoriasis as I suffer from it to. I have had it quite badly and pretty much constantly for most my life. My consultant has never mentioned it. He is aware as it's usually quite visible. I also spoke with him about it a couple of years ago as the steroids I was taking then

(For crohns) were having a rebound affect on skin, clearing up briefly and coming back worse than ever. I tried to research this a while ago but found nothing. It would be interesting to know more.

Take care. Bye for now.

Radnor
Radnor
in reply to Coralsun

I discovered on Wednesday that psoriasis can cause fibrosis of the liver. I have been under Salford Royal for over 30 years, . PUVA worked but it has to be lifetime limited. I started Otezla on the 28/10. As soon as I took 2 full dose tabs I had pain equivalent to labour pains, but no beautiful baby at the end. Im on 1st name terms with some of the consultants,l . I asked if I could wait until I know exactly what is happening with my liver, which they agreed. I do have the latest skin cream, Enstillar. Its very costly for the NHS but it does ease redness and itching. I will soon have an ology on Ketogenics lol. I ordered a quality BP machine tonight too. Years ago cortisone was prescribed freely ,however it thins the skin and like steroids, once you stop psoriasis returns with a vengeance. I read the Keto diet is also good for crohns? My cupboards will soon be bare, everything with carbs is going. Not started on the freezer yet or the fridge. I imagine it being harder for people with a family at home, I can be saved from temptation as I am on my own. Being told to lose some weight is a pretty broad statement. Being told to remove carbs from my diet is specific. I had to cancel my trip to Mallorca in September. I only realised fibrosis was serious when I got quotes for just 12 nights. 8 to 9 hundred pounds!!! The lowest was £315 . More than the cost of my holiday as I stay at my friends's apartment. There are some companies listed by the Liver Trust who specialise in liver disease, but I was told I needed a comprehensive diagnosis before they could quote. I have gone to the sun once sometimes twice a year, mainly to sort my skin. I know some psoriasis sufferers cant do sunshine. Im fortunate to have olive skin, so never burn. Only people on here understand , A lot of people likely see us as hypochondriacs .I dont look crocked, people always say how well I look. Insist on going to Leeds. you need to know exactly so you can adjust to stop getting worse. God luck and stay positive.Hazelx

Bazh
Bazh
in reply to Radnor

Just quick mention regarding travel insurance. Euro Tunnel will cover existing conditions, as long as your GP confirms you are fit to fly,very reasonable prices. Although they only supply cover for mainland Europe, not the islands.

Thanks Baz, I have booked for Krakow in April, so will give them a try. Good health cover on E111 there and I will be with my family. Said if I croak donate my body to Medical Science. Im considering this in any case. Im listed as an organ donor too. My friends brother did this . He had cancer and wanted his body to be left to help others in the future.He had a living wake, celebrated his life Not for everyone, but every dead body I have seen hits home, the person's shell is there, the spirit/soul/being has gone to a better place hopefully. If it helps research into health conditions, to me its its worthwhile. Might be fight over my remains, supercrocked lol

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