What happens next

[angse]

Been on first consultation at kings liver unit had ct scan a week later have cirroshiss, and portal hypertension, does anyone know what I should expect next. Angse

[gamesmaker]

Hi angse. I am also a patient at Kings. I also have cirrhosis and had oesophageal varices. These were banded about 4 weeks ago and I am currently having 2 weekly upper endoscopies to keep a check on them - currently no sign of any more of them.. If I had oesophageal varices I must have some degree of partal hypertension. No two cases are the same. My original diagnosis was NASH - which then progressed over time to cirrhosis. I asked my consultant if there was a specialist nurse service for patients to access there and ask questions of - but I was told that they only have these for infective hepatitis. (inequalities in the NHS?). Over the recent 6 months I have had MRI's, ultrasound, and a fibroscan as well as blood tests of course. I had a liver biopsy a few years ago. We really need a support group and / or a specilist nurse service. (they have specialist nurses at Birmingham but I am not certain about other liver units). Good luck - keep us informed

[angse in reply to gamesmaker]

Hi games maker. Thanks so much for your speedy response, your story has helped me a great deal sometimes you can feel so alone with this disease, they do think its an autoimmune disorder, recent blood work will confirm this at kings, I already tested very positive for it in Kent where. I live but no treatment was offered to me, I am under professed john 'Grady at kings somehow I trust him, let u know what happens and keep me updated on your progress good luck angse

[gamesmaker in reply to gamesmaker]

Hi again. You are not alone Angse - there are a lot of us out here, but we are scattered across the country -we must support each other. I have a different liver consultant to you at Kings, and live in Bedfordshire - so not near you unfortunately, or we could meet up! Keep in touch via these pages.

[Bob3131]

Hi Angse sorry to hear about your news the first thing I must say is everyone is different I will give you a rough idea what happened to me I was diagnosed with Alpha 1 Antripsin deficiency which quickly led to chinos is of the liver the first time I new anything about the condition was when my doctor sent me for a blood test and I was feeling not myself by no means the first thing that happened was that I had a liver biopsy which was done through the neck artery not the mst pleasant thing the outcome was that my liver was failing fast so I was referred to Kings college hospital in London where I stayed for 1 week for assesment which was avert busy and upsetting week you are bombarded with different procedures and blood tests MRI scan Ct scan ultrasound fitness test which sounds strange but you have to be fit and able by the end of the wee they come to their conclusions and I was referred for a liver transplant but before I wa put on the waiting list you have to attend an educational for a day once you have completed this you are then put on the transplant list I was very lucky and was given a liver within 2weeks I am 3years down the road I still have to attend Kings outpatients every 6 months and am nw feeling great zi hope this is some help to you if you have any further questions please do not hesitate t contact me

All the very best Bob

[Bob3131 in reply to Bob3131]

Sorry about my spelling mistakes But hopefully you understand what I'm saying...

Bob

[angse in reply to Bob3131]

Hi poolebh 123 yes I understand perfectley thanks for your story, it has helped me a lot, I now am am a lot clearer on my condition and am trying to keep my health strong as long as I can. I see professed john 'O'Grady at kings for my second consultation with him he will give me results of ct scan to discuss how severe my liver is damaged, I will know this Aug 19th I will let you know what happened, its great to discuss this with others who understand, also I am so glad things turns out well with your new liver, keep going strong, I now have hope, angse

[Bob3131 in reply to angse]

Glad I was some help to you John O Grady team are very good and also the surgical team are great and don't forget the transplant co ordinators are at the end of the phone if you needed help and yes I would b interested in how you get on and keep strong

Bob

[gamesmaker in reply to Bob3131]

The transplant coordinators at Kings can only be contacted if you are accepted for transplant or are being considered for one - and the specialist nurses only if you have an infective hepatitis.

[Bolly]

Hi angse. I would guess you will be put on medication for the portal hypertension and monitored to see how you are, probably by blood tests and scans. Depending on what has caused your liver disease, what happens next is a mix of care from your medical team and self help from you. By self help I mean nutrition, exercise etc, all the things we know we should do to look after our livers but tend to put off til its critical, lol!

As gamesmaker says, you may not get a specialist nurse to answer your questions along the way - I have viral hepatitis and autoimmune hepatitis and cirrhosis and am on a treatment plan, but don't have a specialist nurse. That's why forums like this and the fab people at the British Liver Trust are a good source of information about how to look after your liver.

I recommend that as from now you ask for and keep in a file copies of all your blood tests and any scan reports plus copies of all letters between your specialist and your doctor. That way you will stay fully informed about what they plan to do in the way of treatment or monitoring, and can see via the blood test results how your health is. All the best

[gamesmaker in reply to Bolly]

I always ask my GP to print out copies of any blood test results which are carried out at the surgery between hospital visits - they will always do this for me and I take them with me for my next OPD at Kings. When I had OGD and banding of my varices, I automatically got pictures taken at the OGD and the full rpeort which was sent to my GP. My home liver file is getting very thick now!!! There is sometimes a delay in gettign my copy of the letters to the GP after my OPD appointment - but if so I telephone the secretary and ask her to send it to me.

[number1]

hi all. Im a post transplant patient (was done at kings in december 2010) as an emergency (hence my name) as I had 8 hours to live and johns team is fantastic. Kings have a LISTEN SUPPORT GROUP at the end of every month apart from xmas. Im part of that and its the last thursday but it would be great to see you there - there are a mixture of patients to talk to (such as pre & post and just listed) Its a very good support group

[gamesmaker in reply to number1]

I think that this must only be for transplant patients? I have been given no details of any support groups at Kings even when I asked a direct question of the hepatologist.

[number1 in reply to gamesmaker]

well just google Listen at Kings and the group is open to anyone thats pre or just listed or post. Who was your doctor???

[number1 in reply to gamesmaker]

hi me again

listenatkings.org/?

LISTEN is a patient-led support network established in March 2006 at Kings College Hospital, London. It aims to provide a source of information

Good luck and let me know

[gamesmaker in reply to number1]

Thanks. I will look into this. It is sad that I was never told about it when I asked a specific question!

[gamesmaker in reply to number1]

Hi. I have looked at the web pages. Unfortunately I am not able to access this group as my hepatologist has told me that I will not get a liver transplant as I am a diabetic which will make my chances of survival less than if I was not diabetic. I would ideally like there to be a support group / specialist nurse service for all liver patients at Kings (whatever the cause of the liver disease) . The hepatologist told me that the specialist nurses were only for patients with infective hepatitis. Yet other patients carry on feeling alone and unsupported apart from these pages. Sometimes we just need somone to talk to and ask questions of. I have NASH cirrhosis. I have lobbied my MP to see if there is any funding etc available for this - but no reply as yet!

[angse in reply to gamesmaker]

Hi games maker, sorry to hear no liver due to diabetes, why s this? What reason did they give you. Angse

[gamesmaker in reply to angse]

They said that the have to 'guarantee' a five year survival after transplant (because of the shortage of livers) - and with the co-morbidity of the diabetes that would be unlikely! .... (I would fight the decision making process if it came to the crunch though as my diabetes is very well controlled on the insulin and tablets and diet - my hepatologist said my diabetic control could not get much better than it is.). I am not sick enough to need a transplant at present furtunately, but have NASH cirrhosis and have had oesophageal varices banded. Currely my liver is 'coping'.