Hi all, well I’ve been sat on the sidelines for a while now, just ‘listening’ to what you all have to say.
I must say I’ve been very impressed with the support and advice given to complete strangers. Very humbling. I thought it was about time I stuck my head above the parapet. I’m not as experienced or as knowledgeable as many on here (that’s probably my good fortune!!) but I appear to be catching up fast!!
A little about me. I’m 53, live in wiltshire. I was diagnosed with PBC 18 months ago, after an insurance medical. I’ve got portal hypertension, grade 1 varies, and really not looking forward to the idea of another endoscopy!!! Luckily non planned just yet!!Fibroscan 75kpa (do we get a medal for that score)??
Various other symptoms and now have the mother of all tummy’s. Having spent my life trying to keep my tummy in check - bleedin ascites has knocked all that hard work right off the face of the earth!! Now look like I’m 7 months pregnant!!
Anyway, still keep cheery!!
I may not post much, as stated earlier I’m not too experienced to provide considered advice. But I’m definitely reading and listening.
Andy.
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Huggy7614
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Welcome aboard Andy, hope you find us all a very welcoming and supportive bunch
Just wondering if you have been referred to a t/p centre at all. Your symptoms are very advanced and it might be worth touching base with one of the centres to be kept a close eye on or potentially get considered for transplant.
Not yet, although am seeing the consultant tomorrow. I’m on 3 monthly visits to him - he must like the coffee I bring - in order that he can refer me to Birmingham at the earliest opportunity
I’m not fully responsive to Urso, and NHS England still can’t decide who should pay for me to be on the new drug(can’t remember the name of it!!) let’s wait and see what happens tomorrow.....got a list of questions for him, may need to bring some of my biscuit supply for him too!!
They're good for you too, high in energy and a source of carbohydrate. I was also once led to believe that chocolate is a fruit too. So they must be good for you.
(i'm not sure that is entirely accurate , but hey, why let the truth get in the way of a good excuse!).
Hiya Andy I hope that apart from the ascities you are doing well .... I must admit I hated that heavy feeling I am sure your aware of the no salt diet 😊 are you on water tablets?
Try to reduce the salt in the bread recipe. You’ll be amazed at how little you really need! I make my own stock (dead easy but takes a long time!) I started with Delia Smith’s recipe (1tsp salt in 4-5l) If you compare that to a stock cube!!!! Makes you wonder how they get a way with it. Don’t use low salt substitutes as they are full of potassium.
Then one day I forgot to add the salt and none of my friends noticed! I make bread with no salt and no one noticed! It’s amazing!
I have been on this forum over 2 yrs and i think i have posted 3 times lol. I usually like to do what you do, but most of all i do love giving support even if its just a few words of encouragement or a positive word.
So you have ascites. 😕.had that 4 times now and had the drains done. Thankfully i have not had any in 5 years even though i have stage f4 fibrosis cirrhosis 10 yrs in June.
Cant tolerate endoscopy. 🤢. I was supposed to have been sedated but it did not work this time and it was awful. 2 yrs is next one unless they say otherwise on 1st may due to upper right quadrant pain for the last 3 weeks.
Your not alone on here, just feel free to post or have a rant at any time. Take care.. linda
Hi Huggy and you are very welcome. Read along, laugh, cry but most importantly don’t feel like an outsider. Your experience can help someone else, deal with the minefield of complications that come along with our ill health. I have been a member for 3-4 years now and would not consider myself an avaricious poster. I limit my input to something where I have personal experience, I haven’t got the foggiest clue as to the battery of test result numbers that people post, nor would I want to. All I can be sure of is that we are all individuals with differing constitutions so one persons high number may well be normal for the next man. I know this from pre liver issue visits to any medical professional. I used to waddle in 5ft 8in weighing in at 25 stone to explain my latest issue, instantly they would get their pad out and go so “Blood Pressure, Diabetes” and I used to smile and say I bet you my blood pressure is better than yours, and have never been diabetic in my life. The look of astonishment when they took the pressure was a joy to behold as it was always bordering on 120/80. So the moral of the story is beauty is always in the eye of the beholder.
As a veteran of about ten endoscopies I recommend that you have as much sedation as possible. I always request intra-venous sedation and throat spray following an unpleasant early experience of under-sedation. The only disadvantage of IV sedation is that you should not drive for 24 hours post procedure.
My husband has Stage IV Cirrhosis of the liver/NASH. His diagnosis was Sept 2016 and he is doing well. We were discussing endoscopy because he told me after his he dreaded the next time. I don’t have liver disease & have had several endoscopy and never even knew I had one. Put to sleep, woke up, no after effects, nothing. He explained his test and how afterwards he felt and that he was concerned. He did have an infection but they caught it rather quickly & for that we were very happy. As you know with the disease there are so many twists & turns that cause something else. If you have confidence in your doctor that is so helpful. Tell him/her your concerns and they may have some suggestions or advice that you weren’t aware of. If you aren’t comfortable doing that find another doctor/specialist because there are some wonderful ones that truly care. For us this has made a huge difference. My nephew has had hernias since he was a child & he has had many endoscopes. He dreads them too. He has so much scar tissue from surgeries (probably 25) that he suffers afterwards. Now he takes another 24 hours to relax, sleep and not jump into anything. He takes a pain pill and stays on couch watching TV and sleeping. So take care of yourself first & foremost. The forums are so helpful. I have rheumatoid arthritis which has a lot of challenges but can be managed with the right meds & trying to stay active. I have had such good advice on this site and pushed to tell my dr. everything. We have to keep up with all tests, ask questions,stay on top of it. We have to because unfortunately there are occasions when things fall through the cracks making even more difficulties. Let us hear from you afterwards. All the best to you!!
I have another 18 months before my next endoscopic exam. My last one was just about clear with a fibro scan of 21. It seems yours is slightly more advanced but it has been found. Liver Cirrhosis for many can go undiagnosed so you are over one hurdle. You have to take each step as a positive and know that you will get the best care. The fluid retention will be taken care of and steps will be taken to take the pressure off of your liver. Just listen to your Liver team and ask questions if you are worried about anything. No question is a stupid question if it helps to put your mind at ease. Tell others about your difficulties. It is good to talk. You will not want sympathy but others understanding when you are fatigued or can't do things that you use to do with out problem will at least mean friends and family will understand. This is not easy but it gets easier. I wish you well.
i don't think its about experience or knowledge... its comradare.. and compasssion for others.. which I think we all have for each other... don't feel you have to say something that's ground breaking... just a listening ear.
the site has changed slightly over the years from emotional support to more knowledge but it is a still a nice site.
Hi Andy and welcome to the site. We've all got so many different experiences from varying types of liver disease it's sometimes difficult to take in. Each person's case is unique. I've got pbc, had a transplant last June. Endoscopies I can sympathise with, I hated them. Always had sedation but they couldn't get a needle in one day and I swore I'd never have it done again without it. I was on a banding program for the varices before my transplant so was having it every 3/4weeks. Good luck with your consultant, Birmingham will look after you they're fab x
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, but hey, why let the truth get in the way of a good excuse!).
Cirrhosis over time.
6months
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