By around March my weight was becoming seriously alarming. I was losing about 5lbs of body mass per month and nothing I could do seemed to make any difference. I weighed myself multiple times per day hoping to see an improvement or at least a stabilization, but none was occuring.
I still needed paracentecis on increasingly regular basis and every time I went back to the ER to get fluid drained, my weight loss was enormous. My first ever paracentecis produced 22 pints of ascitic fluid, but subsequent ones were less in volume, about 5 liters, but more regular. I had learnt that it was not a good thing to let the fluid build up as it caused me agonizing pains and also resulted in me acquiring an umbilical hernia.
The hernia (not nice!) occurs when the muscles in the stomach/abdomen decide they can’t take the fluid pressure anymore and give way. Unfortunately this results in a bulge, coming out from the umbilical cord as the guts are squeezed through the tear in the muscle wall.
Hernias are all to common with cirrhosis. Some hernias, like mine are umbilical, others may be scrotal! Luckily I was never unfortunate enough to develop sctotal hernias where one’s kahunas swell up to the size of grapefruit!
I asked my GI if he could get something done about my hernia which was about the size of a tennis ball but he was not prepared to do anything. Part of the reason was cost- I had no insurance but the other reasons were rather more serious.
Cirrhotic patient have a compromised liver which causes all sorts of problems. One of the problems is that a damaged liver cannot process drugs of most types and especially anesthesia. The risk of coma for a cirrhotic patient is extreme. The effect of any drugs tens to be amplified as they remain largely unfiltered or controlled by the liver. It is for this reason that sleeping pills, whether prescription or over the counter, are strongly advised against.
A further issue is infection. The liver is responsible for the overall well being of the body’s immune system. A damaged liver means that a cirrhotic patient is laid bare to every sort of infection. Having surgery is always a risk and there is always a risk of infection. Surgery on an umbilical hernia is extremely risky as it is bowel gut that is pushed into the hernia ‘space’ and any nick or cut to the gut during an operation could lead to massive infection.
The last issue with cirrhotic patients is to do with blood clotting. The liver controls the blood’s ability to clot. The INR or Prothrombin time is a measure of how effectively the body is able to clot blood. Normally in a compromised liver the clotting ability is poor as evidenced by frequent massive nose bleeds and varices.
So, there I was with terrible ascites, a bulging hernia and my weight falling like a brick! None of these situations were good and all of them were life-threatening.
In desperation I quizzed my GI about going onto a high protein diet in order to try to ‘bulk up’ my body. Traditionally, protein has been discouraged by the medical profession for cirrhotic patients as it puts an extra work load on the liver and is thought to increase the blood’s ammonia level. However, protein is indispensable for life to exist and as will be seen later the low protein diet as advised by doctors is a myth.
I had discovered through my own research that in all likelihood I was suffering from Catabolic Wasting. Catabolic wasting or cachexia is a clinical wasting syndrome that is characterized by unintended and progressive weight loss, weakness, and low body fat and muscle. At least 5% of body weight is lost. Cachexia is not caused by poor appetite and nutritional intake, but rather by a metabolic state in which a "breaking down" rather than a "building up" occurs in bodily tissues no matter how much nutritional intake occurs. Additionally, whether a patient receives nutrition orally or intravenously makes no difference. The patient simply cannot gain weight, so eating more is not an answer.
It is estimated that half of all cancer patients experience catabolic wasting, with a higher occurrence seen in cases of malignancies of the lung, pancreas, and gastrointestinal tract. The syndrome is equally common in AIDS patients and can also be present in bacterial and parasitic diseases, rheumatoid arthritis, and chronic diseases of the bowel, liver, lungs, and heart. It is usually associated with anorexia and can manifest as a condition in aging or as a result of physical trauma. Catabolic wasting is a symptom that diminishes the quality of life, worsens the underlying condition, and is a major cause of death.
In my quest to turn my weight around , I went onto an ‘eat meat everything’ diet! I suppose I didn’t care too much what I crammed into me as long as it was meat in whatever form. Ground beef, roast beef, steak, sausages - I didn’t care. All I wanted was meat.
To try and keep my hernia at bay I had started wearing a weight lifter’s belt (the wrong way round!). This gave my bulging hernia some support and releived some of the pressure on it.
Then things started to go horribly wrong.
I was looking forward to Monday morning, with stuff I needed to do as well as the wonderful Atlanta weather in the nineties, blue skies and no humidity to speak of. A perfect day - I thought.
I woke early (5:30ish) and made some coffee and went back to bed. My stomach was not feeling right and I put it down to having changed my diuretics so as not to include Lasix.
So, I took my pills and tried to sleep a bit longer. Eight 'o' clock finds me in agony, hellish pain in my stomach, an odd pain, and I thought maybe my ascites had returned with a vengeance because of stopping lasix. I got up and went downstairs and tried to eat some cereal, but I couldn't, I was now in agony and starting to yell in pain.
I knew it was going to have to get to the ER, so I jumped in the shower and found that just the merest sensation of water touching my umbilical hernia was causing intense pain and it had changed color to deep purple. I was getting very worried.
I knew that one of the back tires on our Mustang had a slow puncture and badly needed air. So I drove up the road to Top 10 Tires, where we always get our cars looked after, and went to the 'back' door and summoned a 'manager'. I explained to him, whilst doubled up in agony that I needed air in one of my tires and was desperately trying to get to the hospital. He then said he would send one of his guys out, he then went back to serving his 'customers'.
I gave it five minutes then left. I couldn’t afford to wait any longer. I was scared on the hernia bursting!
In between yelling in pain and muttering 'fuck*ng b@st@rd' I burnt rubber getting to the local gas station, managed to get some quarters and put some air in my back tire. I only just made it to the ER. The pain was so awful every time I engaged the clutch, I thought I was going to faint.
I got to the ER and pleaded with the front desk to get me a doctor and was told to take a seat. Three more times I had to go back to the desk pleading for help. My stomach felt like it was going to explode! Finally, I got taken through the back and put in a room and the nurse got me on Dilaudid, and an IV drip.
The ER doc came in (he did my last paracenticis) and looked me over, especially at my hernia and says I needed to be prepped for surgery. Feeling very scared now knowing the dangers of being cut open......another shot of dilaidid, and doc comes back with an Ultra Scanner to find out what was causing the hernia to be so swollen and angry purple.
It turned out that a piece of bowel tubing had become entrapped in the hernia and either that was cutting off blood supply to itself or it was cutting off blood supply to the hernia. Now I was terrified!
A male nurse cam in with what appeared to be a length of hose pipe and calmly announced it was a catheter and had I had one before? - I hadn't, now I know why. I was gripping onto the bed and screaming as he forced a 1/4" tube down through a very small hole and into my bladder. For a moment my stomach was forgotten!
Then the surgeon comes in to have a look at the hernia, which mercifully by this time had actually stated to recede a bit. He told me he wasn't keen to operate as there was a 50% mortality rate, not from the procedure, but due to the obstruction being bowel intestine and leakage was inevitable. Infection would be the killer.
OMG I was relieved. I then slept as the drugs took my mind somewhere............
Later, they let me go home and I thought I was in the clear for a while. However that was not to be the case!
Tuesday 9th June will forever more be etched on my mind.
Little wonder that people get depressed when having to live with this disease, because just when you think you have all your ducks in a line, this disease comes right back at you and kicks your ass!!
Tuesday morning started ok like any normal day, cup of coffee early (6:00AM ish) plus meds, then back to bed to snooze a little longer. Sun was shining with the promise of a hot day, only one chore to do and then some sun time.
I got up at about 8:30, went down and checked email, messages, hugs, site stats etc, all was predictably normal.
About 10:30, the first twinges of pain from my umbilical hernia. I showered quickly and got dressed, pain was increasing. I knew how to deal with it though, the docs had shown me the previous monday in the ER, to put feet up and place both hands onto hernia and push down, it should just pop back into place.....it didn't.
I needed to pay a check into the bank, so I drove down there, the pain becoming intolerable, got home and tried again to 'pop' the hernia back in. I couldn't touch it, it was so painful. I considered calling an ambulance but remembered the $1000 charge for the use of such a luxury! Instead I called a friend who came in minutes and picked me up. I collapsed on the floor of his F150, groaning, moaning and swearing. On the way to the hospital I was in so much agony, I asked him to stop at my local doctors surgery - after all, they would have some pain meds wouldn't they??
Wrong again! The doc informed me they had no pain meds???!!!!****#### this is a f*cking surgery right???? I looked around to try and grab my friend before he left but he had disappeared on his way as if being chased by a freshly deceased corpse.
Worse still they couldn't get anyone to take me the rest on the way to the hospital (about 3 miles away - I considered walking then thought.......No)
So the ambulance was duly called, I got loaded up and off to hospital we went. Now, considering that this ride was going to cost me about $1000, I was really pissed when they didn't turn on the sirens!!!! Jeez, what am I paying for?????? No pain meds either!
At the hospital I was taken straight into an exam room, an IV stuffed into my arm, dilaudid and anti-nausea administered, blood sucking undertaken. Doctor appears. Doctor tries to push the hernia back in. Apparently he had attended the same lesson on relocating intestines back into the body as I had, but he did it with lots of vigour!!!! I would have gone through the roof, but the docs hands, on my hernia, were holding me down with such force that it was impossible. I thought I was going to faint.
After failing to relocate my intestines, the doc disappeared, presumably to find some other poor soul to torture, the nurse came back and I was doped up again with dilaudid.
Things went blurry, I tried to sleep, but doc came back into the room and on the principle of 'If at first you don't succeed, try, try again' had another go at my hernia. I dragged his f*ing hands off my stomach in mid-scream.
The rest of the afternoon was a blur. They were admitting me, they were going to operate, trying to find a room, trying to locate a surgeon etc etc. I didn't care any more. Eventually the surgeon arrives, name of Goering!!! (Hitler’s #2) I thought OMG he's probably going to extract the toenails and finger nails before he starts, just as a warm up!! :-((
He cheerfully informed me he was going to operate. I not so cheerfully asked why as they didn't want to operate the previous Monday because it was considered too dangerous. He cheerfully informed me that whereas last Monday I had a 50% chance of dying by having the operation, (through infection). the odds had now changed so that I had a 75% chance of dying if I didn't have it done.
I phoned Linda, cos I wasn't too sure I would see her again and she was at work and there was no way that she could get to the hospital in time before the Butcher of Belgrade carted me off to the chopping block 🙁
So off I went. More drugs, the happy sleepy type got me to the pre-op place and just before I went under I vaguely remember the surgeon asking me where I was from......"Ve haf vays of making you talk".....
Some time later ?? I came to in the recovery room. Toenails and finger nails still attached and was wheeled to a hospital room.
I heard Linda before I saw her, that soft gentle New York twang!!! and as she came into the room, empty handed, I said - "Hello darling - where's my MAC?" I thought she was going beat me over he head with her bare fists 🙂
Poor girl had to go home to get some 'essentials, you know, MAC, phone charger, notebook, wash up bag etc........
The surgeon came to see me on Wednesday prior to releasing me, 'Where did you say you were from?' he asked.
After a couple of weeks I had to go to a post op visit with my friend the surgeon. He was delighted with the results, my ‘outie’ hernia has resorted to being an ‘innie’ tummy button and the were no visible scars.
He remarked how well my ascites was now doing and said that whoever was looking after me was doing an awesome job. I told him that the person looking after me and doing such an awesome job was in fact myself! By then it had become clear that the high protein diet - so discouraged by the medical profession, had turned my ascites around to the point that I no longer needed paracentecis.
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