First Hepatologist Appt

[jules45]

Hi, after being under gastroenternology consultant for five years for my cirhossis, I have my first appointment at long last with a hepatologist next month. I am quite nervous and would appreciate it if any of you could tell me what to expect from this appointment. I dont know how long I will have with him, what he will do or what can he do on the day etc. Usually I just have to lie down, breathe in and have my liver squeezed and then Im out the door without much chance to speak. I had to beg my last gastro before he left his job for a scan for bowel problems which he reluctantly agreed to which revealed dilated varicies which Ive had banded thank goodness. Wishing you all well and any advice much appreciated. Ive had a swollen stomach for months now and on maximum duiretics to no avail so Im hoping he can fix that at least.

[MisterX]

This is good news. I don't think you have anything to be worried about in respect of the appointment itself.

If you don't mind doling out details where will you be attending? It's possible someone here attending the same unit will give you some better information.

I would imagine that the hepatologist will want to review your latest blood results. If you can contact the hepatologist and ask them to arrange for bloods to be taken a couple of days before so they have up to date tests to review, alternatively (if it's not possible to do it at the hepatologist's clinic) get your GP to order a set of blood tests the results of which you can take with you.

I'd expect the hepatologist to review your condition and cause of cirrhosis, get on with dealing with the complications you're facing - i.e. the varices and the possible ascites (Swelling) - and then settling you into a routine of appointments, blood tests and scans with him/her. They will probably add (or should add) regular six monthly ultrasound scans of your liver and AFP blood tests, and a schedule for inspecting the varices. On the subject of varices, if you're not already doing it do make sure your salt intake is seriously under control - it's the sodium which causes the fluid retention - so the bigger difference you can make to that the better - do ask if you need any tips on that, lots of good advice floating about.

If it helps, one thing I would suggest you do is take a checklist with you of all the things you want to deal with, have it on your lap in front of you at the appointment and then go through them at the appointment - the consultant won't throw you out but will deal with them. If you need any help I'm sure we can help construct one for you.

Hope that's a reasonable starting point,

best of luck.

[jules45 in reply to MisterX]

Hi, thank you so much for your advice. Im attending a small hospital in Pontypool where he works from for outpatients. Normally I attend Abergavenny which the liver department works under Birmingham Queens.

Nearly ended up in Queens in Birmingham a few times with my liver failures.

I have no family so am going in hospital transport alone. Ive been very careful with salt and am vegatarian which isnt great as I dont take enough protein and dont like eggs or cheese and am a fussy eater. I have a gall bladder full of stones but they refuse to operate as Im classed as high risk.

Having bloods done 17th Aug Monday at 11am so Ill take a copy of those with me. It would help if you could do a list for me and I can copy it in handwriting to take. Main concerns are fatigue, permanently pregnant looking, severe joint pain, cannot digest food so need high doses of laxative powders daily otherwise I get blockages eating solid food so I dont eat any solid stuff now and stick to porridge, mashed veg and have to take powders to eat that otherwise Im doubled up in pain. Insomnia then hyperactivity. Just realised Ive made a list already without realising it! I manage a small walk daily if I can to stop muscle wastage of legs as Ive had that before but my knees suffer carrying my stomach. Pinning all my hopes on the appointment and this support group are of great help as Im quite isolated as noone wants to talk about the illness we have, they just say 'youre fine, the liver recovers back to normal' and I end up biting my toungue.

Thanks so much

julie

[gamesmaker]

Hello Jules. I am pleased that you are being referred to a hepatologist -they are the experts in the field. I do no know the policies of the hospitals concerned, as I attend Kings in London, and have done so since my original diagnosis many years ago. I suspect that the first appointment will be an assessment of your medical history, a discussion of what has been done up until now and discussion of a future plan. They may well repeat some tests- eg blood tests, as hospitals like their own lab results. Each hospital does things slightly differently - I have a 6 monthly out patient appointment when they Ultrasound my liver, take bloods, and I see the Drs team. I get my blood test results when I get a copy of the letter to the GP. Now what to expect - they may sometimes do other investigations as a base line - eg CT, MRI - but these will probably not be done very frequently. They may refer you for other tests - eg OGD (upper end endoscopy to look at the stomach, duodenum,. oesophagus etc, or they might ask for that to be done at your local hospital and the pictures sent on to them. They might also book a special test called a fibroscan (similar to an ultrasound, and none invasive) which looks at the stiffness of the liver. To help you at the out patient appointment I would advise that you take a good friend with you (two pairs of ears are better than one!), take a list of questions which you want answering - and do not leave until they have been answered. Do not just accept any list of what they plan to do - but ask why. I would also ask if they have a liver specialist nurse who you can phone up with any queries. Not all hospitals have one. Good luck - there are a lot of us out there and we are there to support each other. Finally check out the route to the new hospital!!

[jules45 in reply to gamesmaker]

Hi, thank you for your supportive e mail. I have read it through and feel a lot happier. I'm not able to take anyone with me though as I dont have family or even a close friend having moved here only a year and a half ago. I went for bloods this morning at my doctors surgery and it was a disaster. My only remaining good vein gave in due to the nurse not being gentle with it. She had 5 attempts at different sites to get 3mm in a tube so my arms are all swollen. The usual nurse who does it gets blood everytime. I was being seen every 6 months under gastro until he left to go to another hospital but felt I hadn't been getting the proper treatment - very rarely a scan. Consultant always in a foul mood. A fibroscan would be useful to assess the damage rather than using manual examination. I know a liver speciality nurse has seen me once and she was the one that rang me with the good news about hepatologist and she said she would be dealing with me in the future alongside consultant. Luckily I know the route of the hospital as Ive been there twice for a bone density scan and I have booked transport. Have had the endoscopy when I had banding and found to have portal hypertensive gastritis so at least thats been checked. Havent got a clue about the gastritis and how that works. Nothing explained. The varicies were picked up by a stroke of luck having a scan for something unrelated to liver.

Using my pair of ears only will take your advice and ask more 'why's'. I will make a list and try and take it all in but it will be hard on my own. The problem I have is where I live - right in the middle of Wales an hour and a half away from my designated hospital and the same distance to the nearest A and E, and that thought alone can bring a bit of panic especially at weekends or if I feel ill at night. Thanks for listening to my moans and groans. I stopped Googling health queries a long time ago as this site is where it really happens from a sufferers point of view.

Thanks so much

julie

[Bolly]

The advice you have been given is fine. I would just add a) take something to read or keep you occupies, waiting times are usually long in most outpatients. b) check online if the hospital has a cafe or if not take your own snacks/water. I've had times when I have become dehydrated which makes it harder for the phlebotomist to get blood if your new hepatologist wants more!

Silly question really, but was there a particular reason you moved somewhere quite isolated when your health was already compromised?

[jules45 in reply to Bolly]

Hi Bolly, still recovering from yesterdays blood taking nightmare! Thanks, I'll remember to eat drink etc with me. Where I lived before was still a long way away from hospital but left old house due to abusive relationship lasting 12 years culminating with him feeding me with drink to keep me indoors and isolating me from everyone, including my doctors. Only managed to get sober when I moved away from him and now I can go to the doctors which I wasnt allowed to when with him and I can go for a walk now which I couldnt do before

Best wishes

julie