D. Learning to Live With Cirrhosis

learningD. Learning to Live With Cirrhosis

My research into cirrhosis continued unabated. I learnt that the swelling in my stomach/abdomen was caused by ascites. i read all I could about the problem and frankly didn’t like what I was reading. I read about the fluid being drained off and the inherent dangers of doing so. I suppose when we operate in near panic mode we tend to pick up on certain things rather than others and consequently can feed our fears rather than calm them. I picked up on the fact that infection was a major issue and potentially fatal but had failed to realize that infection, although serious was generally treatable.

So, I was scared of the ascites and also the fact that I had no insurance. I’d put off going to the Emergency Room, probably for too long mainly because I didn’t understand the ‘system’. Both Linda and myself had always had insurance so never had to worry about getting treated before, but this was a whole new ball game. So there I was, on the 16th November lying in the ER with Linda beside me and the tests began.I guess they must have sedated me and given me pain relief as I don’t remember being in much discomfort while the tests were run.

I told them about the CT scan that had been done a few days prior and they managed to get the results and ordered an Ultra Sound scan, all of which confirmed that I had cirrhosis with ascites and the CT scan had also shown ‘significant fatty infiltration’ of the liver which suggested hepatic cirrhosis.

Then there was the ascites. It had to be drained, a procedure I would unfortunately have to get used to! After the consent form was signed, the doctor use ultra sound to find the best place to start the drain. The draining procedure is known as paracenticis. Please believe me when I say that if you are nervous of needles, do not look at the one that the doc is going to use to enter your abdomen!

A couple of shots of Novocaine to ensure I was well numbed and I held onto Linda for grim death as this ‘needle’, I swear it is about a foot long got pushed through my abdominal wall and into the space where the ascitic fluid was lying. A drain was then pushed in and attached to vacuum bottles. The draining went on and on and on….the ER ran out of liter bottles into which to drain the fluid and so had to start using their meagre supply of half liter bottles as well. All in all, nine liters of fluid were drained off that night which was a huge amount. I had told Linda that I felt like I was carrying triplets and now I knew why!

Paracenticis is a draining experience, literally, physically and emotionally – it is exhausting. The powers that be decided that I was to be admitted to the hospital and that I would be seeing a Gastroenterologist later that day.

Northside Hospital, in Forsyth County, Georgia is an absolute jewel. The hospital is new, it is expanding and if one has to be incarcerated in a hospital this has got to be one of the best! it’s not just the facilities, the private room with en-suite, the flat screen tv, the controllable heating and dare I say, the food as well. No, it’s not just all of that, it is the staff who work there that make the hospital the way it is. These people are amazing, fun, chatty and me being British with a ‘cute’ accent, the nurses would go out of their way to come in and see me, ‘cos they just loved my accent!

When I was first admitted, I was confused, scared, worried, tired, terrified, I didn’t know what was going to happen to me. It was during that first day that I met the doctor who was assigned as my Gastroenterologist (GI). For fear of litigation I will simply refer to him as Dr. A. During my time with cirrhosis I have heard an awful lot about doctors, both good and bad. But I do have to confess that it is mostly bad.

I think arrogant is the most commonly used term along with rude, uncaring, off-hand to name but a few. Dr. A was no exception. A more miserable, unsympathetic, uncaring SOB I had yet to come across. His attitude was ‘you’ve killed your liver through drinking, what do you expect?’. On the odd occasion when Linda or I felt brave enough to ask him a question he took it as a personal insult and assumed that we were questioning his judgement. His normal response to anything went along the lines of “I have been doing this for 20 years, are you questioning me?”.

The worst thing is that no one is going to tell you what to expect….The doctors come in to your room, nod knowingly and move on. There is nothing, na da, no information and on the odd occasion there is some response it is couched in such vague terms as to be virtually meaningless. Many of the questions you’d like to ask, you don’t want to ask. Simple questions like ‘How long have I got?’

Cirrhosis is not the great unknown! The progression of the disease can be explained as well as what you, the patient, could be faced with in the future. Although it it true that most people’s version of the disease is very different from everyone else’s, the underlying problems are remarkably similar. Similarly, with ‘treatment’, some people react in different ways to similar forms of ‘treatment’, but once again there will be a common thread which will be largely the same for everyone.

I emphasize the word ‘treatment’. According to the medical profession, cirrhosis is untreatable. Cirrhosis is irreversible and it is incurable. Wow! that is pretty stern stuff! Particularly where alcoholic cirrhosis is deemed to be the cause many doctors wash their hands of the problem altogether and even the so-called experts, the ones that approve or disapprove transplants are so closed minded it beggars belief!

My first stay in hospital ended up lasting five days. For some reason, my blood pressure which had always been good had now become high and on top of everything else they were drugging me with, I now had blood pressure pills to cope with.

When I was released from hospital my first real experiences of living with cirrhosis at home began to affect my life in so many ways. During my incarceration, I was introduced to diets and diet sheets. The ‘you can do this’ and the ‘you can’t do this’ sort. As usual, very little explanation was given. Blanket statements were made, such as Coffee is not good for you, or carbonated drinks are not good for you or even Clementines cannot be eaten because of the amount of fluid they contain.

Different doctors/nurses had different opinions on what was good or bad for me (this is a recurrent theme!). No explanation was ever given as to why coffee was bad, and the diet lists contained information of what you shouldn’t have rather than what you should have. With the benefit of hindsight it is now clear that these diet sheets are written by people with no understanding of cirrhosis and no grasp on reality. For every diet sheet that says something is disallowed, another will recommend it heartily!

So, coming home from my first stay in hospital was an interesting experience.  I had learnt that salt was bad  and that fluid was bad. The result of this was that I became paranoid about sodium intake. The reality was not looking good! No more MacDonalds, no more Chinese food, no more food which contained any salt, eating out was going to be impossible, wasn’t it? My eating life could never be the same again and everything we did and everywhere we went would have to revolve around my diet. If we went to friends for dinner, I could only eat what was safe for me. If we went away to a hotel, I had to have lo/no sodium food. I discovered that so many seemingly safe foods can contain a huge amount of sodium – even bottled water!!!!

In supermarkets, we scoured the shelves for low sodium this and no sodium that. Favorites became a no-no, like tomato ketchup and mayonnaise! Burgers – nope!, deli meats – nope! Soups – nope! even bread was bad for me!! Life was becoming a nightmare. I was restricted to a maximum of 2 grams of sodium per day where the average American consumes maybe 4-5 grams!

Then there was a fluid intake. 1500 mL per day. That is about 2 pints of fluid in total. This was to include everything both eaten and drunk. Foods contain fluid, whether it be water, gravy, sauces, fruit etc. But the limit was fixed. This was very difficult to live with. Maybe not too bad in winter, but come the Georgia summer it was going to become a nightmare to keep hydrated.

Also, funnily enough, I had rarely been without a beer or an adult beverage in my hands for years, it was after all a habit. I was conditioned to pouring liquid down my throat. This required change of behavior was very hard to take. It wasn’t so much the alcohol I missed, it was the almost total lack of anything that tasted good that was available to drink. I tried the herbal teas, the fruit juices, the cordials and even frozen popsicles but most of them were either disgusting to me or so sweet as to be horrible. Ultimately I resorted back to my old favorite Gatorade G2, which is still my choice of drink today.

So, as I got into late November, early December things just got worse and worse. I felt like my body was attacking me very day with a different set of problems, but worst of all was the vomiting and the diarrhea. I got so bad that I became scared to eat. If I ate I vomited, if I ate and kept it down I had diarrhea and the diarrhea was not announced or forewarned in anyway! No, from first signal of impending bowel movement (I call it movement, but in reality it was more of the flood gates opening), to performance was about 2-3 seconds. It was completely and totally uncontrollable. The same would happen with the vomiting. As I started to eat food I could perhaps last as long as twenty seconds after swallowing before I was retching into a waste paper basket beside my chair.

I became paranoid about keeping a log on a spreadsheet of everything I ate, drank, pills etc, to try and work out some sort of pattern to the sickness and diarrhea. There wasn’t one.
Cirrhosis also presents itself as a whole bunch of other ‘stuff’ and it is worth bearing in mind these other indicators of the disease. Not everyone will display every symptom, the symptoms tend to hit us as a ‘cocktail’ of nasty side-effects.

3 Comments

  1. Elaine on May 22, 2014 at 11:52 pm

    I am going through the same things, it started with throughing up blood and the dr’s couldn’t figer out where it was coming from. they finally figered it out. I just found out this week that I now have cancer. they are going to do the chemo that is put in your groin and straight into the liver. hoping one treatment will work. I have fibromyligia and my joints hurt all the time. now my side and a place in my back hurts all the time. I think I will beat it this time, but not sure if it happens again. my kids are having a hard time dealing with it. and the grandkids all but one is to young to understand. I don’t know how to help them. my husband is being so wonderful. he does all the cooking and dishes I have a provider that comes in twice a week and does my laundry and house work. good luck to you.

  2. Juanita McCracken on July 27, 2016 at 12:28 am

    I use your online member’s group all the time. I didn’t know this existed. It would have done me a lot of time in research if I have looked here first. I see where your support of me in the emergency room where I left without permission comes from and how the doctors can go blah blah blah when you get out you realize you didn’t learn anything about the disease or your own condition. This answers so many questions. I will come here again and again. Hope you get your transplant and all goes well. Thank you for all your help and this group is outstanding!

  3. Susan S. on October 5, 2017 at 10:24 am

    We, too, live in Cumming. Due to insurance we will be doing everything for my husband thru Emory Johns Creek. We are at the very beginning of this journey…although tbere have been many issues that I now reflect on that perhaps lended themselves to this. Rage is why I insisted he go to the doctot, among another things. So good to know we are not tbe only ones.

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