Portal hypertension, oesophageal varices and liver hematoma patients

[shonarrr]

Hi, I am new to the site and would love to hear from anyone about this condition as I have never met anyone with the same thing. I look forward to hearing from you.

[gamesmaker]

Hi. I have the portal hypertension and the oesophageal varices - but not the liver haematoma. Mine are from NASH. What treatment are you having? I had my oesophageal varices banded - one small one left which is too small to band - they are keeping a watch on this one.I have my next liver unit appointment in 3 weeks time so iI am waiting for the 'what next' in the treatment line. Good luck!

[shonarrr in reply to gamesmaker]

Hi, its so nice to hear from you. My phov is not related to alcohol as I was diagnosed at the age of eleven. I have had my varices banded 14+ times during endoscopies. how long ago were you diagnosed? No treatmentreceny just loads of tests! Which specialist hospital do you attend?

[gamesmaker]

Good to eharfrom you. i attend Kings College Hospital. . Mine is also not alcohol related - must be inherited as my sister has the same diagnosis - but she attends a different liver unit. .have you had a fibroscan amongst all your tests. I just wish threre was a specialist nurse attached to the unit who i could contact when I have queries. I agree - lots of tests along the way. Mine was nto diagnosed until I was in my 30's but I had had pain symptomes since being a teenager.

[shonarrr in reply to gamesmaker]

Do you find you have good care at kings? I'm getting very frustrated at the moment as nothing seems to be getting done, just tests with no answers. I had a spontaneous liver tear with bleeding in june with a liver infection. Then it reoccured after a month. I have recieved no treatment for it yet though but there must be something they can do as now I have a collection of veins in my liver that are prone to bleeding and is affecting my everyday life. I could be lising my job if I have another episode of absence due to my condition.

[carmik in reply to gamesmaker]

Hi

Have you been tested for Alpha 1 Antitrypsin deficiency. This could account for both you and your sister having liver problems.

My husband attends Kings but he is now post transplant. Was diagnosed with Alpha 1 before we transferred to them.

There is a clinic at Queen Elizabeth in Birmingham who will send you the relevant test kit if you are interested. The Clinic is called ADAPT they are researching the effects of this deficiency which also causes lung problems.. Some get both others may only get the one problem.

Carmik

[gamesmaker]

Hi Shonarr, I have been happy with my treatment at Kings - my main grumble is the lack of specialist nirse support - there is just no one there to ask if I get a query between my 6 monthly appointments in the clinic. I was told that there was specialist nurse support if I had an infective hepatitis - but nothing for other kinds of liver disesase. The questions always arise when there is no appointment for a few weeks! Also there is specialist nurse support for transplant patients but I have been told that as I am diabetic I would not be considered for a transplant. It is a very busy unit. An example was when I had my fibroscan - there was no one I could ask about what the result meant to me in real terms ! As is happened, my result was very high but my appointment was not brought forweard until I pushed for this to happen via the secretary. I live over an hour away from Kings by train (no liver unit in my county) - but I would happily travel for the ability to see a specialist nurse to discuss problems between visits. Other illness groups have specialist nurses so why not liver units! Sorry to go on about this!!

[Dagame747]

I have a similar thing to what you guys have. i was diagnosed in 2004 and over the years i have had several endoscopy's. My spleen was enlarged due to the blood not being able to flow through my liver properly and at the start of the year i had my spleen removed.

[gamesmaker in reply to Dagame747]

has the removal of your spleen improved things? It sounds like pretty drastic action! My spleen is also enlarged - but I think they would not remove my spleen because of the diabetes and the concurrent risk of surgery. I have never heard of this as a treatment though. Which hospital are you attending?

[Dagame747 in reply to gamesmaker]

Instead of the constant endoscopys they found this to be the best option. Plus my spleen was enlarged to a dangerous size and any knock that I received in this region may have caused it to burst. Yeah I feel ok, I have to take penicillin every day but I don't have to take propranolol anymore. I am attending the university hospital of Cardiff.

[Tinabean]

Gamesmaker, im shocked that there is no specialist nurse at kings, i thought that was the main place for liver disease. My husband goes to northern general at sheffield, he has a specialist nurse, with her direct phone number, he can call her at anytime xx

[gamesmaker in reply to Tinabean]

yes I really feel really strongly about the lack of a specialist nurse. I even lobbied my MP about it (the one who was 'in the jungle' in the TV series - but I never even got a reply. It seems so wrong that other life limiting diseases have specialist nurses but not liver diseases. !

[SunnySideUpDawn]

I am post transplant at kings and had experienced enlarged spleen, varices, etc as well. I didn't have a specialist nurse before transplant, but I had a local gastro/hepatologist that I saw every month or two to make sure I was ok in between the 6 monthly kings appointments. When I needed to see kings I would phone my consultant's secretary--but I must admit it was just a case of waiting and trying to be patient. After I was listed for transplant, help became more readily available.

[shonarrr]

Have any of you guys suffered from a mass of veins in your liver prone to bleeding? I am I going through this as we speak, I have had 3 bleeds since june. I am at Queen Elizabeth hospital Birmingham and feel like I am just tested on all of the time without any action. I have had loads of time off work due to these bleeds and I'm about to lose my job if it happens again as it is a reoccurring illness. I am on the lookout for options to help me and to share experiences with others!

[angse]

Hi everyone

Talking about diabetes and transplant, never knew you could not have liver transplant if needed, I have type Diabetes type 11 for six years, never needed medication kept it in control so far, have cirrohiss of liver, Portal hypertension, with one massive bleed in Feb 2013 am on propranolol iron pills, and lansomprozole to keep acid down, at present feel OK, I to attend heptologist at Kings every six months blood tests scans, I have my six monthly endoscopys at hospital in kent where I live, I to wish there was some kind of nurse to speak to, as I to have enlarged spleen and a massive vein on liver, I keep asking about that but all they will say when the time comes we will discuss it, that's my gastroenterolgist at Medway hospital, must ask this professer at kings I'm under, it just scares me no transplant if I need one due to diabetes, they never bothered to tell me that, keep well Annette

[AyrshireK in reply to angse]

How is your diabetes controlled Annette?

I don't think there is a blanket 'no' for transplant with diabetes. The issue arises because transplant will potentially make diabetes worse - many people actually develop diabetes after transplant so those with an existing diagnosis (especially insulin controlled) need careful treatment. They certainly don't say no to every diabetic since, many liver patients especially those treated with prednisolone can become diabetic pre-transplant purely due to the steroids.

Each person's pre-existing health is carefully assessed during the transplant assessment, if risk of transplant outweighs potential benefits then sadly people can't be listed, however, diabetes itself isn't an out and out bar to transplant. I wouldn't write yourself off, your diabetes is not a straight no for transplant and as I say will be carefully examined during a transplant assessment if it comes to that.

All the best to you, Katie xx

[angse in reply to AyrshireK]

Hi Katie

Hope you and hubby are well, diabetes is controlled by what I eat, had it now 6 years no treatment thank goodness, all my family had it but they were on metmorfin which honestly seemed to make their condition worse, what I mean is they got other problems, so thankfully I'm OK, it was just that someone on site said they were diabetic and under Kings hospital so am I and they said they were told doctorscsaid no transplant due to diabetes, to be honest Katie they have never even talked about transplant with me, even with my symptoms, maybe I will ask when I go to kings in june so glad to hear from you. Annette