HI I have just come across this sight. I have no idea what is going on in the beginning of this sight regarding husbands and police etc. But i have cirrhosis of the liver and a few weeks ago vomited blood, i went to hospital luckily it was a small bleed, but two weeks ago i was rushed to hospital i vomited 7 litres of blood they rushed me to ICU where they induced a coma. I was then rushed to London free hospital. I bled three times my family were called in Xmas eve and basically told after first bleed there is a possibility i will die, i bled another two times they were going to use the tips method but amazingly i pulled, thru. I live on my own with my 15 yr old son and when i was released i was just told i could go home. i have no support network and have been crying most days thinking it could happen again at any time,and that could be the bleed that kills me. It is a very lonely and terrifying place to be,the not knowing i wish i could look inside myself to see what's happening before it goes wrong. I feel like a ticking time bomb. I wonder if that feeling goes as time goes on with no more bleed?, the worst thing is u don't feel it coming i am in my thirties and the thought of leaving my son without his mum terrify's me more.I feel quite relieved that i found this sight and am not alone.
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This site can certainly provide some help and companionship but you almost certainly need some more and the first place to start would be to talk to your GP re ongoing checks on your health status. You don't say if you have been referred to specialists and I am assuming you have been. Make use of whatever resources you find at your specialist hospital: they often have support groups that you can tap into.
Hi I know exactly how you feel I had a very similar experience 2 years ago this week, was on life support and family told to say goodbye but pulled through. You do feel very scared and emotional when you come home, and if you have no one to look after you it must be very hard. you do worry that it's gonna happen again but you sort of know what to look for now, little signs to pick up on. Had you been ill previously? Try and stay positive and appreciate being alive don't dwell on wot happened it just upsets you I could still cry now if I think wot I and my family went through its very traumatic but I don't think about it too much, just focus on staying healthy. Are you on any medication? (Blood pressure, diuretics) wishing you all the best and a healthy future. 😊
just looking back at my first post , it's actually amazing your answer i didn't quite now what was going on then, but have learnt so much since then from people like yourself and just want to say Thank You. Jackiex
Hi how are you doing now? No more bleeds? Do you feel tired? Time goes by so fast! Hopefully doing well and getting stronger day by day. Has your son just done his exams or is that next year, stressful time for them. Wishing you all the best keep in touch. Helen x
hi well i am up and down. a month ago or more i was bleeding bad different end this time 21 units of blood later i was very close to having TIPS operation but it just stopped they did every test there is had no idea why the only thing they found it could b is a polop in my small bowel. BUT ...touch wood no bleeds since. My son is looking at A' grades in his exams he has been at home for weeks now he has finished and still summer hols !!! help lol. He is doing Politics, film studies , media studies , English language and literature at college i am very proud of him. i think he threw himself into his school work as a coping mechanism with what was happening he is so brave.As for tired i do actually get tired by the end of the day but i don't know when to stop to b honest. i went to my first family social function last sat free booze everywhere i was very worried as that's why i haven't gone out but i did it and i secretly gave myself a pat on the back first baby steps and all that. Thanks for your reply how r you ? xjackie x
Wow you have been through it! 21 units of blood is massive! You must be very proud of your son with him turning to study to cope and now looking at excellent results, he could have 'coped' in other ways ie partying and feeling sorry for himself, it's refreshing to hear of his responsible and sensible choices!! Well done for doing party with no booze that must have been really tough at least no hangover in the morning ay? Why are you on steroids? I hope they can sort you out and get you better soon. I'm doing ok at the moment get fatigued sometimes but like yourself try to push through it!. My care from my local hospital/ consultant is substandard to say the least but luckily nothing major to worry about ( just as well) I'm having a few days away in Provence at the moment it's the first time abroad since been ill was a bit nervous but so far so good!!!! Take care my friend and keep in touch. Helen xx
My partner had three episodes of bleeding,one was two years ago and another two recently.I understand how you feel,it sounds so familiar.When I think it could happen again any time I also feel that our lives are like a ticking bomb.But I know that worrying and crying is only making things worse,and the way I see it you have to stop these thoughts by force,thinking not about what is going to happen,because you can't predict the future anyhow,but what you can do about it,and do the maximum that you can - to continue your life the best way you can,to fight for it,like you're a fighter in the war.And yes,we are not alone,hospitals are full of suffering people,but when we are healthy we forget about it.Hold on and keep fighting,and listen to your body - as was well said in the previous reply -pick the signs and call for help if you think your symptoms are coming back -the sooner you catch it the easier it will be to pull through.xxx
It,s awful trying to move on and cry most days,seeing how strong my son is being. It is nice to hear from you I have felt so alone in this. I have been I'll for years without knowing. Only 2% of my. Liver is working. It got serious two years ago,but was doing so well blood tests OK etc. I was on steroids for some time,I got so hairy I never went out.lost all my so called friends as I. Waxsn,t the party girl no more I am on lactoluse furosemide spironolactone,cyclizine,codeine.thiamin.strong vit b and sleeping tablets.and oromorph. I also have a gigantic hernia just above belly button and gall stones they won't operate due to. Blood not clotting .falling to pieces all over I have terror dreams too.confusion and forgetful ness I am everywhere at the moment
It was nice to SPK to you, someone thats understanding be nice to keep in touch find out about u.Take care 😐
Awww Hun, I know it's hard but try and keep a positive mind, I am 37 and I had a bleed back in 2014 had a number of blood transfusions, platelet transfusions and have liver cirrhosis, was in hospital for 6 weeks had severe jaundice and a drain fitted for my ascities, I have been living a normal life for the past year and whilst having a routine gastroscope I had some more banding done last month as preventative, The only things that actually affect me now is my blood clotting (platelet levels about 90) but my INR number is basically normal so it's just something to be aware of, I just make sure I look after my health and diet and obviously don't drink. Are you under the care of a gastroenterologist, Also try and cope off sleeping tablets (zopiclone and other 'Z' drugs are to be avoided at all costs with liver disease) are they giving you frequent gastroscope's? With regular checks and preventative banding done the larger time goes on and the stronger you get or you have a transplant the less likely a repeat bleed will be. Try and stay strong, is there any local support groups you could go to? Xxx
Hi Bustaboo, sorry you find yourself in this horrid situation. You are in the right place for moral support and experience gleaned advice.
You say they considered doing a TIPPSS (transjugular intrahepatic portosystemic stent shunt) but you pulled through so did that not happen then? What about banding?
Have you now been referred to a liver specialist to follow up your care?
You should be having treatment for your portal hypertension - some folks get beta blockers such as propanolol and/or a programme of aggressive banding to remove any varices that form - this is done via endoscopy (my hubby had one massive upper GI bleed in 2012 and was then banded for the next two years so had 42 bands done in that period). No way should you be left waiting and afraid of the next bleed.
Have they identified the cause of your cirrhosis?
You need a definite treatment plan going forward since you need to be under a liver specialist, you need regular endoscopies to check for the likeliehood of future bleeds and need ultrasound scans every 6 months. Cirrhosis sadly is a progressive condition so you need the supervision and treatment in place. Has transplant been discussed at all?
You are obviously very new to all this and it seems to have hit you all of a sudden as it does with many so feel free to ask away and seek advice on here (and some of us old hands can perhaps suggest things based on our own experiences) BUT as others have said you need to ensure you are seeing a specialist to progress your care further.
OMG; you poor thing and you are so young ; i understand what you mean; very frightening. You are not alone. I hope you have a specialist that you see; a heptologist; maybe its the case that one day you will need a transplant. Has anything like this been discussed? You will get alot of support from here; feel free to message me; wishing you all the best x
I have been in your position and live in Thailand, luckily I work in a very good hospital and was treated immediately for both my bleeds, I know how frightening your position is.
If you have had your varices banded and are taking Inderal (say 3 times daily) after food you should be OK. I would insist on regular check-ups in the form of an annual endoscope to check on the state of your varices and repeat banding if required.
You are in a terrible situation. I can't offer any advice on the bleeding as have not had happen to me. Please go & speak to your GP, you definatley need support as does your son, the both of you must be terrified as well as medical care from him & the specialists. You will get a lot of advise on here & you are not alone.
I found this site a great comfort after suffering acute liver failure without being ill, was given 48hrs from diagnosis with out a transplant, my family got the call with hours to spare & although have not posted yet myself just reading messages I know am not alone & can get loads of advice from lovely helpful people who have been there themselves, which is invaluable to me.
I can fully understand how you feel. I have had several bleeds and had a massive one in November. I felt like a ticking bomb as well as you say there is little warning other than generally feeling bit poorly, which is a daily feeling anyways.
After I managed to survive in November I was just left and told I would be seen in the summer! My husband and family went mad and rang up the hospital several times demanding to see someone sooner.
I have now had several more tests and seen consultant twice. I am already on beta blockers etc, which often help, but sadly not with me. I am now having regular checks with camera and banding done as soon as necessary to try and prevent more bleeds.
I suggest you firstly try your GP depending if you feel he will help. Otherwise contact the hospital and demand to see someone so you can discuss a way forward to prevent this type of bleed happening again. Keep reading this site, everyone here is so helpful and we help each other. Let us know how you get on, good luck xx xx
My heart bleeds for you,this is awful for you.Just came back from Royal Free for my husband. He will be assessed for transplant in March.His Tipps op failed. Hasn't your consultant advised you what they can do for you?
I think it would be a good idea to go to your consultant and ask them to explain absolutely everything to you. You said you were just sent home which sounds like the hospital didn't go over things properly. You can't be spending your time worrying. I know for a fact that'll only make things much worse. Can you ask your GP to refer you to their counsellor? Every surgery has one. You must express your feelings to the people around you so they can help support you more. You need to spend quality time with your son as I'm sure you're not the only one who's scared. You need to find as much support as possible such as here or ringing the support lines. Go back and find out everything the doctors can tell you about your condition as it is now. Get as much information as you can so you fully understand what's going on and their opinion on things. Live your life every day and go a day at a time. Enjoy time with your son instead of worrying about things you have no control over. You've had a horrible and terrifying experience that you need to give yourself time to get over. Of course you're worried about it happening again but it might not which is where talking to the doctor will help. Be kinder to yourself and remember you're scared by something that's already happened and you need to have time to get over it. I can't imagine how frightening it must have been for you so recognise you need time to come to terms with what has only just happened to you. You nearly died but you didn't so just give yourself time for your poor mind to recover. I wish you much love and hope you can find comfort
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cramping and pain with cirrhosis
Only God knows, I guess
Scared
Worried about my mum!
Diagnosis, or partial one
