Upcoming appointment

[Millie2014]

Good morning everyone. I have my 1st appointment at the liver unit on Monday morning. I have sent ahead my 2 biopsy reports which were contradictory and Inconclusive. I'm a bit nervous as to what will happen at this appointment. I'm used to being disappointed but I'm really hoping I will soon get a diagnosis and some much needed advice. Do you know what I can expect to happen at this first appointment? I have been told I will have blood taken but not sure what else to expect. Thank you.

[carmik]

Hi

Take everything you have, i.e any test results any letters regarding your issues.

Which hospital are you going to and is the consultant a hepatologist?

[Millie2014 in reply to carmik]

Thanks for responding carmik. I am going to Kings college hospital and will be seeing a hepatologist. For many years I have been treated privately by a gastroenterologist who was unable to pinpoint what was wrong. This year I had a fibroscan showing mild fibrosis. My biopsy showed inflammation and bile duct injury but not enough for an official diagnosis.

[carmik in reply to Millie2014]

Very interesting. My hubbie saw a hepatologist for 4 and a half years ,during which time he was deteriorating, but nothing was being done. |I had to fight GP to get him referred to kings. He was transplanted nearly 8 years ago and doing fine. Have you got a diagnosis yet? If not what are your symptoms, if you dont mind me asking

[Millie2014 in reply to carmik]

Hi Carmik that's very interesting about your husband. I'm pleased your persistence paid off to get his diagnosis and treatment. My symptoms are right upper quadrant pain that goes round to my back. It is constant but often intensifys. I have digestive issues. A number of hospital admissions with severe spasms in liver area and high liver enzymes. I've also had a few attacks of pancreatitis and 2 spincterotomys on the sphincter of oddi. This didn't help in the slightest. I had high triglycerides and high cholesterol but these are being treated with a fibrate drug. My gallbladder has been removed but just showed chronic disease but no stones. Sorry it's so long......its been a long road.

[carmik in reply to Millie2014]

Kings are great I am sure they will get to the bottom of it. There are many reasons for liver issues some of which are rare and aren't always tested for,as in my hubbies case, but I am sure Kings will know where and what to look for. Keep in touch.

Good Luck

[Millie2014 in reply to carmik]

Thanks Carmik I will let you know how I get on.

[Hidden in reply to Millie2014]

I have to say in my case my Heptologist wins hands down over the Gastro man I had.

My first meeting at Liver clinic in April was short and sweet. He had his results US & Fibro. A Gentleman, didn't bite the head off me. Discussed meds and lifestyle changes. No alcohol. Then into the Nurse for a ream of bloods.

Second time we met was my Endoscopy in June, I didn't realise he was doing it. The test was clear but that's when he I had / have Cirrhosis.

[Millie2014 in reply to Hidden]

That sounds like a positive experience with the hepatologist. Hopefully it will be similar for me.

Thank you

[davianne in reply to carmik]

Hi carmik,

I am having the same problem with my hepatologist consultant, here in South Bucks. He doesn't show any interest in my cirrhosis, or the capsule pain I constantly have, he says repeatedly it's not a liver issue. I had better consultations with the gastro registrar's who were on rotation within the hospital. They showed a lot more interest in my cirrhosis than the consultant.

David

[freddie76 in reply to davianne]

Hi are you sure he is a hepatologist and not a gastro

If you have cirrhosis confirmed you should he getting regular scans, blood tests and checked for varices.

If not, it is your right to request transfer to another hepatologist. Preferably one attached to transplant unit.

Good luck

[davianne in reply to freddie76]

Hi Freddie,

Oh yes, he is definitely a hepatologist. He has reduced my appointments to yearly now, with 6 monthly US scans and bloods. He stopped my gastroscopies, because he said my varices are small and not changing. I can't seem to find another hepatologist in my NHS trust, so I might have to go outside it to get a referral. My GP thinks the hepatologist is a wizard who can do no wrong in his eyes. I think he's the only one in the trust, because they don't have any others mentioned on their website.

David

[Millie2014 in reply to davianne]

I am very surprised with your consultants attitude. Especially after your diagnosis of cirrhosis. I would definitely push for referral to a liver unit where you can be regularly monitored and supported.

[Hidden]

Good morning,

Carmik is correct - take everything you have in the way of results/ letters. Also, write down, briefly, the sequence of events leading you to this point (they might already have everything, but you never know!) and any questions you have .

Good luck, you may not get all the answers you want at this appointment but it will be a start.

regards

[Millie2014 in reply to Hidden]

Thanks so much for the advice.

[davianne]

I wish you all the best for your upcoming appointment, and I pray you get a definite diagnosis.🙏🙏🙏

David

[Millie2014 in reply to davianne]

Thank you so much David

[davianne in reply to Millie2014]

Your very welcome Millie.🙏🙏

David

[mattymoo33]

Hiya Millie. You will be in great hands at Kings. Write down all your questions and don't leave without them being answered. If there's anything you don't understand, please ask.

Keep us updated honey.

🤗🤗 Steph xx

[Millie2014 in reply to mattymoo33]

Thanks so much Steph. Will keep you posted.

[mattymoo33 in reply to Millie2014]

You're very welcome, beautiful lady 🥰🥰. xxx