Hernias and cirrhosis

[SpringBird]

Husband has end stage cirrhosis and has been tee-total for 9months. He has developed a hernia in the lower groin which has worsened and slipped down to his testicles. The specialists say this is caused by blood trying to find any way to get to the heart since the liver isn't functioning properly. They won't operate as the risk of bleeding to death should anything go wrong is high. So he just has to put up with the chronic pain that he often doubles up over. Does anyone else have a similar story?

[Willh0]

That does sound like me Spring.

I was diagnosed with a hernia about 3 years ago. I went for a US scan and they didn’t find anything but it was agony!!!

I couldn’t really take anything for it as my liver was that bad so had to just try and get on with it. It was only really sore 1 perhaps 2times a month so it was sort oh ok. The apt’s for the checkups were about 6 months apart so I never had a US when it was sore and the thought of having anyone touching it never mind the pressure of having a US done, it wasn’t going to happen.

Anyway it went on like this for a out 18 months, then they told me that I was going to get a operation to resolve it. But luckily I was put on the transplant list but it meant that I couldn’t get the hernia looked at until after the transplant. During this time the hernia went from 1-2 a month to 1-2 a week then a day. It then went to 7-8 times a day, the only way I could take the pain away was to lie flat. That worked but even now, when I get up and go to the toilet and back it pops out.

I had to get taken in just after my transplant as I couldn’t walk from the pain of it for an emergency op, but they found a blood clot on my chest and that took priority over the hernia. I went back to the hernia people on Monday and now they will operate but it’s going to be 6-8 weeks. Not a long time but when your doubled over it’s a hell of a wait. I feel his pain!!! Trust me I do. There is nothing as scary as checking yourself and finding out it’s like you have the feeling of 3 things instead of 2. I’ve also got the bleeding thing to worry about as I’ve got to take warfarin because of the clot I developed. I don’t know if this helps but I know exactly what he’s going through. I hope everything works out with your husband. Along with everything else he doesn’t need this ontop of everything else. I hope things get better and if either of you want to or needs to talk to someone who’s had/having the same problems then hit me up and we can chat about all this. Good luck!!!

Will

Oh just a thought, had he tried compression shorts?? They worked for me a bit too.

[SpringBird in reply to Willh0]

Thanks so much for sharing your story and wishing my husband well. Apart from still having the hernias and other conditions l am really interested how the transplant has improved your health and life. We have been told that despite being end stage he might not be 'bad' enough for a transplant even when the initial 2 years wait is up. Well I can tell you that as he doesn't have that hope and chance he is very depressed as he does not consider his life worth living like this in the long term (easy to say). We limp on! That said I am sitting right now with him waiting for a gastro-ndoscopy because the NHS have begun to realise he is worse than they thought.

[SpringBird in reply to SpringBird]

Endoscopy!

[Willh0 in reply to SpringBird]

Hi Spring, sitting comfortably???

Then I’ll begin. I’ll brush over some of this as although it’s important I could be here for days.

Anyways I drank to much, out of no other reason than I was bored, then it became a habit. After years of this I got bored of it and stopped, then I gradually started again to probably over a bottle of vodka a day. Way way to much but I was never sick, late, off work so I thought it was ok ish.

Then one night that varicese burst and I was bring up blood. Over 17 pints over a few days with transfusion and so on but they couldn’t stop the bleeding. They were going to call it but my wife mentioned a few things to them(not in a bribery way) and the managed to stop it. Cue first near death. After I came out the coma, the doctor gave me the easiest question ever. Keep drinking and you won’t see the year out or stop. Easy choice.

They then went through all the liver scans and bloods and so on and mentioned something about toxins. I didn’t really pay attention as there was so much happening. So when I got up one morning and was looking at the tap and with glass in my paw, not able to work a tap. A tap!!!! So I needed to go to hospital, I had developed my first case of HE. Which I’ve had 6-8 times, brush with death #2. Was in hospital for 26 weeks, in and out all the time. Eventually my wife had had enough and whilst I was still in hospital told me not to come home and to find somewhere else to live. Can I blame her? Mmmmmmmm I dunno but not something I would have done but what can you do when it gets to that point?? Oh nearly forgot, my 3rd cat life was used when I developed sepsis, that was a 24 to live gig but the antibiotics worked so that was very very lucky. So just to recap, I’m 43, nearly died 3 times, getting divorced, homeless, jobless and very very ill. The only reasons I tell you this is to show where you can be and that there is always hope.

Managed to get a flat and started getting on with things, I think I’m doing well but every 2 months I would have a HE episode, so back to hospital I would go. During one of these episodes a doctor mentioned something about transplants, went over my head a first but eventually got my head round it. All the while I was getting worse. Every time I went in I came out weaker and closer to death. I thought I was fine but it was as if I was on a graph going down then plateau, then down again the stable then down. All the while going in and out, eventually I got sent for the 5 day assessment. Initially I got delayed for 3 months until I got some stuff sorted. But after the 3 months I got put on it.

Sorry it took so long to get here but you’ll understand why. That was back in Jan 19, I was on standby 24/7. Everybody knew where I was at all times but again I was steadily getting worse. Between the HE and the occasional fall, broke my collarbone and didn’t know who I was at times. Not eating, forgetting meds, generally going down hill slowly. I had 2 false alarms and gradually through the months my family were looking at me different. Couldn’t put my finger on it but the were. So that went on until I got called on the 29th dec 18. I went to Edinburgh and followed the usual drill as I had before but this time it was getting further and further. Right put these surgicals on, 1st time, well get you on the trolley, 1st time. We’ll take you down and get you ready, 1time. Next thing I’m waking up in the Saturday night with tubes all over the gaff, but that was it, it was done and I now I had a new liver.

They tell you about what happens in the run up to it, I never thought to ask what happens after!!!!! Now this will vary person to person but somehow I went from 82 kg to 106 kg. Now I’m 6’3 and before all this all I was a big lad, not fat but in proportion to my height. After I came round a bit I noticed how bloated I was all over and I do mean all over!!!! I couldn’t really walk, close my legs, sit in a chair, anything until some areas went down, but after about 2 weeks the swelling went down enough that I could go home. Some people are quicker than others but it’s all at your own pace. You also have to be totally on it with your medication. So much so that your expected to sort out all your own meds on the ward so you can do it at home. It’s a great idea. Anyways I come home and then my hernia pops so I get rushed back in to hospital, only 9 hours waiting for the ambulance but who’s counting. They were going to operate the next morning but that all got put on hold as it turns out that I had developed a blood clot in my chest close to the operation so they had to use cams and scans to find out what’s going on. Eventually they dealt with that and I was then back home. You go back to the clinic first weekly then fortnightly then where I am now which is monthly. In the past 4 months since the clot, they thought it was rejecting, you are so happy that it’s been done then you hear that and you just sink but they, fingers crossed, seem to have sorted that out with small changes to meds. Had a biopsy done, again just to check things and that came back ok. So that’s where I am just now. Just back from my check up thing and they are ok with things well at least for the next month.

I really don’t know which bit is harder, the waiting to have it done or the post op stuff. In pre op I was always just thankful to everyone that I was still alive and each day I would get up, listen to bright side of life, and try to be as positive as I could be given the circumstances, which I found easy to do because I was still alive and all those times I could have died. Then the opportunity of potentially getting a new life, new start at tings and your so hopeful that your going to be fine. Then you don’t get a call or hear from anyone for a month or two and you start thinking it’s not going to happen, then you get called and your so excited, then it doesn’t go ahead and your back down again. It’s a rollercoaster of hopes, emotions, feelings. It’s such a hard thing to go through but then you hear that someone you know has had a transplant and you get so excited for them and your hopes come back.

For me post op is just as hard at times. You see people you were in the ward with and they are up, bouncing about and your thinking why am I not able to do that. What’s wrong with me and so on, then slowly we’ll for me, it didn’t matter how many issues I had, or setbacks, your aware that hang on a Mo it might be very slow, but your liver isn’t going to be the reason for your death, well at least at the moment and going from, I’m going to die potentially soon and trying to come to terms with it and accepting it, to well I can think a few years ahead. I can plan to do this and go there. Save for this and that. I’m really sorry but this just sort of came out once I started. I don’t know if I was in a unique position coming that close to death so many times that I was just thankful for having extra time that I so easily may not have had that when the transplant went ahead it didn’t matter to me how sore it was, all the back and forth. If I was still in hospital from the day I had the operation to now I would still be happy with things. It’s a really difficult thing to explain as your emotions are so up one minute and down the next but it’s so normal to be like that. The transplant teams are amazing, anyway you feel, anything that you think they have dealt with it before and are so so good, the doctors, nurses and everyone else all want you to succeed and will bend over backwards to help. I have a tendency to keep things quiet and keep my emotions on the level but that went out the window, but the only one that can deal with it all is you. Talking helps immensely, that’s why speaking to people on here is so helpful. What your worried about, someone here will have been just as worried.

The final thing that I would say is that my sister in her wisdom, decided to drop it to me after the operation. Do you know something?? No. We didn’t think you’d be here come the springtime, you looked that I’ll. I suppose your going to want something for your Christmas this year then!!!!! You can choose your friends but not your family eh.

I hope it all goes well and this may have been of some use. I do bang on though.

Good luck

Will

Oh forgot, now that they have found out I have 2 hernias not 1 they are going to operate on that in the next 6 weeks so more rehabilitation. Woo hoo!!

[Hidden in reply to Willh0]

Hi Will

You have indeed had a torrid time which I think will have hit an accord with many of us who have been through this process - although we may not admit to it in such detail!

I, and I certainly others I know, have had close calls with the “other side” ! Somehow we made it 👍. In my case I’m not sure I would have without the unswerving support of my wife. I can’t imagine being in your situation when your wife said no more. Such a crying shame and “good job you” for riding that storm in addition to all the other traumas going on.

It sounds like you are making progress, albeit slowly, so I can only wish you the best of luck for the future. I’m sure you’ll get to enjoy the second life (I don’t say that lightly) that we who are so, so, so fortunate to have had transplants, get to enjoy, in most cases.

Good luck

Miles

[SpringBird in reply to Willh0]

Wow, this certainly is a rollercoaster story. Advice after the endoscopy was that the varices were actually too insignificant to tie and that operating on the hernias could lead to a 75% chance of death if something went wrong as bleeding would be difficult to contain. He has been told that his liver's ability to transport blood is hanging by a thread. So nothing changes except he now has a new drug, though off the top of my head I can't remember what it is. I suppose it is still early days as this journey only started last July.

[Willh0 in reply to SpringBird]

I had the hernia before I needed any treatment for my liver. I was a while ago, about 3-4 years but went along with. The first endo said that I had Varices and stop drinking, didn’t take that on board then they burst and had to put me into a coma to resolve those and the first brush. Told to stop drinking or they will not might, will burst and that’s it. Still waiting to have the hernia looked at and operated on.

Told that I would get put on the list for the hernia operation but a few months later got put on the transplant list so all other ops were canx that was for just under a year. Each week tha hernia was getting bigger, for longer and more painful. Had the transplant in dec 18 with the hernia getting so bad I couldn’t walk. Got taken in to have an emergency op on the hernia but they found a clot in my chest so that took priority which is fair enough. Anyway I had to go back to the hospital on Monday and that’s me now on the general surgery list so now just waiting for the apt, only problem is that I’ve been told to take Warfarin to thin my blood so they can’t operate whilst I’m still taking that , so that’s going to be the next issue. I guess what I’m trying to show and say is that there is a sort of flow chart that has to be followed. Will body be able to have operation to resolve hernia? Bloods OK, weight Ok, another x amount of checks. What about Varices? Ah, might not hold and liver won’t be able to cope/help. Right chances? 75%. Ok options? Deal with everything else first then come back to the hernia?? That seems the best option so we’ll do that then. Don’t know it tha sounds about right??

They will do everything they can do bring the risks down to a minimum. I’ve pretty much not been able to get up, go to the toilet and back without having to lie down to get the hernia pain away. Fingers crossed that they have a process to bring the risks down to something more reasonable and after that it will be able to get done. The only well not only but you know what I mean is it all takes time.

That’s the problem, I was wanting everything done like yesterday. I used to see people at the clinic that were up, bouncing about and I’m still there in a chair or a crutch in my hand buckled over. It’s a long wait to have something that sounds so simple to have done but it’s gonna be so worth it in the end, when everything is done and it will be you and your wife up bouncing about together. It’s going to work out fine but will take some time.

Don’t worry it’s gonna happen.

Will

[Hidden]

Hi SpringBird,

Sorry I can't be of much help here. Hubby had a small hernia that surgery fixed after his recovery from liver & kidney failure in late 2015.

Hubby's kidneys got back in shape while in the hospital, and since he quit drinking while in the hospital his blood work has continued to improve a bit at a time at each 6 month follow up visit. We live in the US - his liver doctor has not recommended him for a transplant and since he is head of the transplant dept at the hospital I have decided to take that as a good sign.

Let your husband know that quitting drinking may help things improve, but it may take a while. While mine was getting better with his liver he fell 3 times - broke his [same] foot twice and his hand once and had a hernia operation - small hernia, but today he is outside in the sun enjoying washing the car and we just returned from a 10 day trip to visit friends in Arizona.

Wishing you both the very best,

Mary

[SpringBird in reply to Hidden]

Thanks for your hopeful reply. I think we are only just off the starting blocks of a long journey really but there is so much hope in this community and information that we wouldn't otherwise be getting that I feel a little better now.

[Hidden]

Yes I have a inguinal hernia, which im not sure is cirrhosis related or not. but it has been approved for surgery. When you say end stage do you mean he is decompensated? When its caused directly by cirrhosis its usually caused by intra-abdominal pressure from ascites most commonly. I have never come across any journal or study that indicates it being cause by blood flow being recanalized to the heart. Not saying the doctor is wrong but, when I asked my hepatologist if mine was caused from the cirrhosis her answer was basically " no because you dont have ascites". Since groin hernias are pretty much 80 percent of all hernias found in men even in the healthy population it might be possible it is not caused by the cirrhosis directly?

Further though the risk of complications of inguinal hernia repair in decompensated cirrhosis are obviously higher than the general population but, are still considered quite safe and are encouraged to be repaired electively as opposed to waiting for them to become an emergency. In an emergency situation the risk of mortality is noted as being about 12 times that of the non cirrhotic population.

Not sure if any of this helps. Perhaps seeking a secomd opinion would be beneficial?

[SpringBird in reply to Hidden]

Thanks. He has basically been told this week that he is just going to have to put up with it and will go back in for another endoscopy in a year and then there will be just a few months left before he reaches the two year mark at which point he has been told he might be on the transplant list. That said, a lot can happen in a year. This time last year he was holding a job down as a functioning alcoholic, I suppose, and we didn't have an inkling that he was at imminent risk of end stage liver cirrhosis.