Hi everyone, hope you are all ok and feeling as best as you can. Been on a catheter for second time now since 1st November due to Acute bladder retention as well as coping with cirhossis, portal hypertention and all that comes with liver disease. Finding the experience a little soul destroying aged 45. Night bags, weekly visits to district nurse for leg bag change. Having to phone Doc out of hours due to blockage in catheter. My bedroom has turned into a hospital cubicle at times!. Still keeping my sense of humour thank goodness. My jeans are a thing of the past at the moment...in a drawer waiting one day for me to be able to wear them. Its sensible £7 Amazon elasticated waisted trousers right now with plenty of leg room. Going to have to stay like this until I see urologist. Appointment classed as urgent but I live in the middle of wales so we will see what month it will be. Is there anyone else out there who has bladder retention or experience of it. Thank goodness my kidney function test came back ok but have had to have antibiotics for infection of kidney last week. I realised I had an infection when I was getting all confused and wierd. Not seeing hepatologist until 11th January.
Best wishes
julie x
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jules45
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So sorry you are going through so much, havent had bladder fluid retention so can't comment on it everything else though cirrohiss varices which bled out 2 years ago portal hypertension, just swelling in one leg which is going down somewhat, I hope you get relief from your symptoms and that infections stop all the best to you. Annette !!!
Hi Annette, thanks for your kind words, hopefully things will improve. I had 6 varicies banded between May and September. Glad your leg swelling is going down - that would be fluid probably?
So nice to have empathy at times when you need it.
Hi Julie it sure is nice to have someone to talk to, me personally I find friends or family really don't understand, they can't as they have not experienced this disease, but on this site you have people more or less you g through the same as you and they really understand so don't hesitate to come on here. Annette xx
Thanks Annette, it's the lonely dark nights when I appreciate this site even more. You're right, friends and family just dont understand. Its not that they are being selfish it's just you can't understand unless you are going through it. I will keep logging in to be amongst friends.
Please do keep logging in I to feel really aware of these dark nights, I'm still trying to get used to living alone, left my parents home got married at seventeen my husband died over 2 years ago, but I'm not the only one and it can only get better you keep as well as possible. Annette
Hi Annette, I will keep logging in - lost my mother figure my nanna in January this year so feel like you. Won't be long until Spring. Keep telling myself that. Just get xmas over with and another year with new challenges. We aren't on our own with our illness and the kind people on here keep each other afloat during good and bad times. Hope to keep hearing from you,
Hi Julie you are so right after Xmas a new year, so sorry you lost your nanna, but we will have challenges and with each others support we will get through it would be great to keep in touch take care speak to you soon Annette
Hello again, we will keep each other going. I will definitely message you on xmas morning! Keep each other going throughout the festivities. We might manage a laugh or two, probably get a hospital appointment just before christmas and have to wait until new year which, if its a urology appointment the appointment should be written on a xmas card. Hepatologist 11th January, I got that one last week. Here's to a new found friendship.
You are so right I have to see my heptologist on 21st December, I better be okay as will be kept in lol still bring my tablet with me and we can communicate keep well. Annette
Bless you, I was in hospital for my 40th with balloons at the bottom of my hospital bed so hopefully you won't be in. You would get a nice turkey dinner though. Saves the cooking. uuurgh
love julie x good luck with hepatologist. See what good news he delivers hopefully
On sorry to remind you of hospital stay at Xmas, was thinking great to have it all cooked for you though, and when family come in you can act all sorry for yourself LOL. Annette
Hi Annette, of course - christmas in hospital you could really milk it for all its worth, sympathy etc. Went to doctors this morning. He has upped my duiretics, arranged an x ray on my back, and upped my morphine as I didn't tell you my back caved in through pain on Sunday night and I have put on a stone and a half in 6 weeks since being on catheter. Doctor says ascities. Have x ray on thursday then being weighed with doctor next wednesday. Perhaps a back problem is causing my bladder retention, looked it up on google (shouldnt have) and it does say that it can. How are you today? Hope you are ok.
I'm fine Julie thank you, at least health authority's are looking after you, don't worry about your weight that will go, if it is Ascites upping the water pills hopefully will help, I know th is this sounds boring but walking around the house as much as you can may help, if you are embarrassed to go out, gosh you are going through it, back as well as all other issues, take care speak to you soon. Annette
Hi, If ever you want a break you can come to my place as it's kitted out at the moment like a retirement home! Its just a bungalow but it seems to have become a care home. Seriously though, Im doing as you have said - housework, walking about the place. 2 pairs of elasticated trousers came by post today. They look awful but needs must. Talk about baggy pants. What are you doing for christmas. Have you got relatives that will be coming. I have my ex coming for the day to swap gifts and thats about it. One day we will have to swap e mail addresses to have a good old natter. Put the world to rights etc. Met a lady a lot older than me in hospital when my liver first failed 5 years ago and we became firm friends. We don't talk often on the phone but we share the same birthday. Lovely lady called Sheila. She was in the opposite bed from me.
Oh so glad you have your sense of humour would love to visit, glad you have good friend, and yes we must swap email address to chat for Xmas will be going to my daughters, you know you had liver failure, well that happened to me when I had massive GI bleed but knew nothing of what was happening as I was unconscious for 4 days, only when I looked in mirror was like an orange, all over the body, I never asked but what actually is liver failure !! Annette
Hi, sorry I havent replied but was dreadfully ill yesterday. Doctor increased my furosimide water tablet and my oral morphine and I was sick and came out in a rash on my face. Doctor told me I have ascities, sent me for x ray which I had today. I couldnt keep water down yesterday nor anything else. Was told it was the morphine. Hope to find out what is wrong with my back. Doctor wants to weigh me again next Wednesday to see if water tablets have reduced my weight.
Dear Julie, you are going through hell! Has anyone assessed you for liver transplant or have I got hold of wrong end of the stick? Do you have end stage liver disease?
Hi, my child pugh score is only an A. Got told 5 years ago I would need a transplant within 5 to 10 years but Im just being treated as a general cirhossis patient. Only had my first hepatology appointment in October - every 3 months now. Before, had gastroenterologist just twice a year. Obviously some deterioration but not end stage to my knowledge.
You have to ask all the time, they left me so long that when I got to transplant I actually had cancer. You can ask what your UK ELD is. If it is a certain number they have to consider an assessment and it is your right to know what your score is as it is what they use to prioritise patients. I'm not trying to scare you but sometimes they just leave you struggling along too long, like they did me.
Hi again, I agree with your message. It was only a conversation I overheard by accident when I found out I had a gallbladder full of stones otherwise I still wouldn't have been told. I will take on board what you have said.
Oh dear, I know one shouldn't look back but maybe if you had stayed in hospital that first time you would have been fast tracked to see the urologist instead of waiting for outpatient appointment. Yes symptoms of UTI include confusion, being a bit wobbly on your feet, cloudy urine etc. Keep an eye out and get sample to your GP whenever you are doubtful. Also once you have finished these antibiotics, wait a few days and then get a sample in so they can check the treatment had definitely cleared it up. It may sound a faff, but the GP or nurse can do a quick 'dip' test without having to send sample off to a lab or anything.
Hi Bolly, I know, I agree with you I should have stayed in the first time round. If I knew then what I know now I would have. Everything about that admission was wrong though. Wrong hospital, bad treatment, just wanted to come home. I bought a sample bottle from the chemist as I forgot to ask the district nurse for one so Im taking a sample down next week as urine smells strange and has gone dark orange again. Thanks for being a reliable presence on this site. Your advice has certainly helped me over the last few months. How are you getting along?
Will keep you updated. Just waiting for the postman each day with urology appointment. Found out he has a clinic more local which is good news.
So sorry you having such problems, yes the jeans are waiting.
I've had bladder spasms and terrible urine infections on bladder pill daily, and nitrofuridanton antibiotic 100 mgs every night, the urologist saw me then cystoscope and this treatment for 6 months should see him again Dec/ Jan 2016 .
My ruin is often cloudy and smelly like stale fish horrid. But often the urine sent away no infection . Hope you get sorted Julie take care Cat 19 x
Hi Cat, thanks for sharing your experience with a dodgy bladder. I imagine when I see urologist I will have to have scans. Im sure it is something to do with a gynea operation I had about 7 years ago because I couldn't pass water like other people after that but Im only guessing. My water has a wierd smell and Im passing about 8 litres or more a day even though Im not drinking that much which doesnt make sense. Ive piled on a stone as well although this may be to do with my confidence and not wanting to walk far due to having a bag.
The first sample I gave was infected, the one last week was clear but urine has now gone really dark orange at night and in the morning so I have a spare sample bottle to take to the doctors. I also bought a thermometer today so I can keep an eye on my temperature.
My urine orange night and morning too, how strange , my lower abdomen feels very heavy at times, it's awful feeling unwell then to have bladder problems is just a nightmare, I keep getting cystitis too, let me know how you get on Julie , take care love I xx
Hi Cat, I agree it is an awful feeling and the orange colour as well. Perhaps you need to see a urologist - I think you do. My Auntie has similar problems to you aged 63 and she has just paid to see a urologist privately due to syptoms like yours. She is having a camera into the bladder and a biopsy under general on Wednesday. She has the money to do this though. I'm just waiting for the good old NHS and I will definitely let you know how I get on. You look after yourself and keep in touch.
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Scared, shocked but glad to be alive!
Has anyone suffered from excess fluid when being diagnosed with Liver failure?
Difference 
Lesion of the liver!!! I’m worried about this has anyone had lesion of the liver ? 
Still the unknown 
