Please note, this page details the side effects my husband endured after he developed cirrhosis from alcohol, and in writing this page I probably sound like I'm speaking directly to people who got it from alcohol. But I do realize, many people get cirrhosis from other ways - pharmaceutical drugs, Hepatitis, auto immune conditions... many people don't even know how they got it. So please know, I understand many people reading this didn't get it the same way... but since cirrhosis causes the same symptoms in most people, I think it's important for everyone to be aware of the side effects that happen in end stage liver disease.
If you're looking for an Alcoholics Anonymous chapter in your area, you can find it by clicking HERE. If you could use a little inspiration from some famous people who do not drink, click HERE. To see some videos by (non famous) stories by people who really enjoy their lives without alcohol, click HERE.
UPDATE: As of 12/5/16 I know of 23 people who have died from cirrhosis, since I've started this blog, and I know that number may be larger and I just never heard back from the people. Please believe me when I say, this is an extremely serious disease, and I don't want you to die! I really believe it doesn't have to, if you do everything you can, to prevent it, and the sooner you start, the better! In every one of these cases, I believe that it didn't have to happen, and it could have been prevented if the person had just taken the right steps, or if doctors provided better options for their patients, and they'd known about these treatment options before things started getting to the point where they could no longer turn things around. If you have cirrhosis, please read THIS POST and take it seriously, as if your life depended on it... because it does. When you have cirrhosis, you're like the captain of the Titanic headed for the iceberg. If you wait till the last minute to turn your ship around, you could drown. I've seen it happen, over and over again, and I can't warn people enough!
I wish the little speech the doctor gave us at the hospital, about how Jake shouldn't have any more alcohol, could have been enough... but it wasn't. Somehow, hearing "you could get very sick" or "you could die" just wasn't enough to make my husband stop drinking. Jake still thought he could actually cheat death. While I find this annoying, I can see how it happened, and how easy it is for this to happen to an alcoholic with a chemical dependence. People tell us we could die from getting into a car, or getting on an airplane, or drinking diet soda or eating fried food, but that doesn't exactly stop us from doing it. It's like, every day you are alive is another day you cheated death. After awhile you start feeling like you must be invincible! I used to be a smoker over 10 years ago so I know what it's like to just throw caution to the wind and do stupid things that you know could kill you.
Cirrhosis is a major problem in the United States. 25,000 people die every year from liver disease and cirrhosis, and yet Jake and I managed to remain oblivious to how serious it really is, or how easily it could happen to him. According to the Liver Center at St. Louis University, 300,000 people are hospitalized annually from cirrhosis. You can see the facts on this page. There are many people who were just like Jake, who really did die from this disease. He came so close... I wouldn't wish this on my worst enemy.
some of these books I just saw on Amazon). Who knows if it would have worked, but I sure as hell would have tried, and I'm guessing Jake would have tried harder too, if he knew what was about to come.
Jake started to show signs of cirrhosis 2 years ago. It started out with indigestion, and he was taking antacids like Pepcid and Omeprazole (I later discovered most people are NOT supposed to take antacids for more than six weeks TOTAL in a year... you can read more about that on this page). After Jake would eat, he'd clearly become uncomfortable, patting his chest and making a face. Sometimes he would go to the bathroom and throw up. It was like the food just wouldn't go down properly.
It was tough to see him in such discomfort. He would become easily fatigued, he got headaches and he took a lot of naps. He also became a lot more crabby. Eventually, his skin started to turn yellow, his abdomen began to swell, like a beer belly but worse. He began to resemble someone who was 7 months pregnant... but he began to lose a lot of weight, so... picture a crabby yellow walking skeleton that also looks like a pregnant man.... not a pretty picture.
We didn't have health insurance at the time he started to show these signs of cirrhosis. One day we went to a free clinic because he was in a lot of discomfort and his abdomen was getting so large. It seemed like it was taking forever for the doctors to finish his exam (I wasn't in the room with him). Finally, he came out and told me that several doctors had gone in the room to examine him, and they told him that he needed to go straight to the emergency room. That was a shock to me. I guess because I didn't realize how much he was drinking, and the seriousness of what alcohol can do to the liver. There are no alcoholics in my immediate family (though my great grandfather on my father's side was said to be an alcoholic). Until that day, I didn't even know what cirrhosis was.
I drove Jake to the hospital, dropped him off and said I'd go park the car and come right back. I guess I must be pretty naive, because I actually expected him to go in, see a doctor, get a good scolding for drinking, get a few prescription medications, and we'd go home. To my surprise, by the time I came back, I saw they already had him on a gurney, in a hospital gown!!! They were about to hook him up to an IV. I was like, what the hell is going on???? They wanted to keep him overnight. It all seemed very surreal. Jake did stay overnight, and the doctors wanted him to stay even longer, but he insisted on leaving the next day because he couldn't afford to miss work.
Thanks to very expensive vitamins and nutritional supplements I heard about through a friend, Jake was somehow able to make a miraculous recovery, and in the months following his hospitalization, he was starting to look better than I'd seen him in a long time. He became his cheerful self again, and his family seemed amazed by his quick recovery.
Because he was looking so much better, I wasn't as alarmed as I should have been, when one day, about 3 months after he got out of the hospital, he said, "I think it would probably be ok for me to have a beer on occasion..."
Note, 7-3-14: A little tip for the wives (and husbands) of Alcoholics: Jake admitted to me recently (after 9 months of sobriety) that he never really planned to stop drinking... he said alcoholics can be manipulative like that.
I have to be honest and admit, I really didn't like the thought that Jake couldn't drink anymore. I thought that meant that I couldn't have a single beer when we'd go out on Fridays, or at BBQ's, etc.. (How could I be a supportive wife and have a beer in front of him??). I didn't want to feel guilty, drinking in front of my spouse who was on a Lifelong Beer Ban, and I didn't want to have to hide it, either. It just seemed so much easier to HOPE that maybe he really could have JUST ONE DRINK, on occasion.
BIG MISTAKE!!! Next thing you know, that one beer turned into two, and a six pack became a staple in our fridge again. I remember looking at all the cans in our recycling bin (pic on left) and thinking man, this looks like a recycling bin from a bar (true, this was a few months' worth of recycling but still... not pretty). At some point, when things weren't going well at work and Jake got laid off, he started drinking vodka. Yes, I was naive. I had dated people who had issues with drinking, before, but the difference was, they were musicians and artists who never even tried to try to hide their drinking problems! So I just assumed the amount of beer I saw Jake drinking, was the amount he was actually drinking.
It's kind of like, when you hear of angry homeowners in foreclosure, pouring cement down a toilet. It's easy to pour the cement in, but it takes a while for the cement to harden. When it does, the whole plumbing system is F***ED and you can't just "plunge it out." Well, that's how it is with alcohol and your liver. You can pour it down your throat, and you may not see or feel the damage right away, but when it kicks in and your liver is full of a certain amount of scarring and damage, you're SCREWED, and you can't just UN-DO the damage in a week or a few months (or maybe even years) by taking supplements, using cleansing kits, etc.. When your liver can no longer act as a filter for your body, because it is "plugged up" with scar tissue, your whole body starts to malfunction, and it could take a decade or more (plus tens or even hundreds of thousands of dollars) to undo most of the damage, because YOU CAN'T GET RID OF SCAR TISSUE OVERNIGHT!
It's true, there may be some things you could do to repair the damage (supplements, stem cell treatments, PEMF), but you will probably never go 100% back to how you were before... and you will spend a TON OF MONEY (like, enough to buy a large HOUSE) trying to get your health back to a relatively normal state, if that is even possible. PLEASE NOTE: Jake quit drinking completely, in September of 2013, but the damage he did to his liver was so extensive, he just continued to get more and more sick, EVEN THOUGH he was completely sober and trying desperately to take better care of his health and turn things around, those "old tricks" just didn't work for him anymore (cleansing, vitamin supplementation, fasting). He was hospitalized 3 times in emergency care, 3 months later (amounting to over $200,000 in medical bills). (Update / reminder again... that number is up to over a quarter million dollars as of 2016). Once you do the damage, it's like getting in a car and having someone tie your foot to the gas pedal, put a huge weight on it, and then tie your hands together so you have no control over the car. LIKE IT OR NOT... YOU ARE GOING TO CRASH.
Now here we were, 6 years later, and the decades worth of damage to Jake's liver was finally rearing its ugly head... with big, glaring, flashing lights this time. He looked on the verge of death, his skin was greenish grayish yellow, he looked like a walking skeleton who was going to die any day, and his mother cried when she saw him on Thanksgiving.
He was also so frail and had to walk so slowly (it took him about a minute to walk 10 yards) and felt so weak, his balance wasn't quite right, and in November of last year stumbled off a curbside as we were walking to our car after one of his son's soccer games. It was heartbreaking. He went down like a pile of bricks and was so embarrassed because lots of cars were going by. I had to leave on a week long trip the next day and felt terrible leaving him in so much pain. I asked a neighbor (who lives in an adjoining property on our lot) to ask her Mom to check up on him while I was gone and she literally declined because with the way he looked, she thought her Mom was going to find him dead (update 9/7/16: there is a story explaining a little more about that, on this page.... basically, her Dad died of heart failure 3 years before, and Jake looked just as sick as her Dad did, right before he died, so she didn't want to traumatize her Mom).
I will never forget the day he was so tired and ill, he had to call in sick for work (something he NEVER did before). Jake was in so much discomfort, he was literally crying and begging me to help him get better. He was freezing cold and shaking and losing control of his body. Nothing made him comfortable. He was taking up to seven hot baths every day and was still in a ton of pain and discomfort. He sounded like a scared child who needed help, and it was so frustrating to feel like there was nothing I could do to take his pain away.
Like I mentioned before... the damage he'd done to his liver made him so sick, he had to be hospitalized 3 times over the next one month period. We went to three different emergency rooms, at 3 different hospitals, and racked up over $200,000 in medical bills. And this doesn't include the cost of crashing and totaling his car and losing his license. (2016 update: that number is up to over $250,000). I can only imagine the feeling of despair we'd feel if we really thought Jake's only hope was to get a $400,000 liver transplant!
I am making this blog because I want to let other people know just how SERIOUS cirrhosis is, and how dangerous it is to your liver, to keep drinking, when you know you shouldn't. When you see those warning signs that you are having a problem with alcohol (bloating, indigestion, acid reflux, swollen feet, jaundice), take it from me and Jake....THAT MEANS YOUR LIVER IS DYING, AND WHEN YOUR LIVER STOPS WORKING, THAT MEANS YOUR BODY IS SHUTTING DOWN... AND IT'S GETTING READY TO SHUT DOWN FOR GOOD. Even with all the glaring warning signs, Jake truly did seem surprised when his cirrhosis got so bad, he could barely function. While I think he knew he should stop drinking, he was in serious denial about the fact that he could continue to "bounce back" from this disease!
When Jake started to look really, really ill, I went online looking for information, alternative treatments, and stories from other people who had been through this. I came across this discussion online, where a woman said her husband was in the hospital due to cirrhosis... and he died. Her story was frighteningly similar to ours. This woman and I were about the same age, our husbands were about the same age. Her husband had been hospitalized for cirrhosis before, but they didn't realize the seriousness of the situation and he continued to drink beer. Next thing you know, he was throwing up blood. Just over a month later, he was dead.
Right after reading this story, I called Jake on the phone, hysterically crying and telling him that he needed to see a doctor NOW (even though he didn't have health insurance yet). I knew that this was serious, and he couldn't wait. One clinic, three hospital visits and $200,000 in treatments later, Jake is lucky to be alive. (update: I guess you've seen, that number is up to $250,000.00 and when you consider the ripple effect of what happens to your life when you find yourself DROWNING in debt, because suddenly you're unable to pay your credit card bills and property payments and everything starts compounding... it feels like our total is more like half a million dollars).
For anyone who is reading this, who is wondering if they should stop drinking, I want to tell you about the extreme, intense difficulties that Jake has experienced because of cirrhosis...not to mention the hardship it's been on me, trying to take care of him. Much as I love him... it's been very hard on BOTH of us financially, physically, and emotionally! It's not easy to take care of someone who is so sick, it makes them extremely crabby and irritable, and they take it out on YOU! There are many times when you ask yourself, WHY am I even DOING this? Instead of giving Jake his medications, there were many times I wanted to throw the bottles in his face! Jake could really be a jerk sometimes (which was not like him). But it's like when women get really bitchy during that time of the month. You can kind of turn into an *sshole when you feel like cr*p, and especially if you have a problem with your liver.
We can't change the past, but at the very least I am hoping we may be able to encourage some people reading this, to avoid some of the mistakes we made, and turn things around earlier than WE did. So, in the hopes that we may be able to encourage some people to get help, or stop drinking.... I'm going to share with you, some of the hell that Jake has had to endure, because of cirrhosis.
Try to keep in mind, you basically have 2 options... either you can a) keep drinking and eventually die a slow and VERY uncomfortable, painful death from cirrhosis (probably leaving a $200K+ bill for your family to take care of), or b) stop drinking NOW, save your health and your sex life, and actually spend that $200K on something you will enjoy - like vacations, season tickets for your favorite football team, a new car or truck, new decorations for your man cave, or a backyard barbecue set... and you will enjoy it all the more because you will still have your health!!!. I wish someone had warned us of the unforseeable future, so maybe Jake could have chosen option B!!!!
For those of you who choose Option A...
-Losing your hair, starting to go bald (and gray!) very suddenly
-Looking (and feeling) like you're about 7 months pregnant
-Having to spend weeks or months in the hospital (and then deal with the bill for it) (Let me say it ONE MORE TIME: Because of his cirrhosis, Jake racked up OVER $200,000 in medical bills, in just over a month)
-Constantly Being worried about money, medical bills, and what will happen if you die.
-Not being able to eat what you want because your favorite foods give you indigestion and acid reflux. Bad. All the time. Your liver just won't be able to process the things it used to. Imagine having to stay away from meat, fatty foods, and salt. Awww, but you miss being able to have Chinese Food and Big Macs? Tough Sh*t!!!
-Having breath and body odor that smells like death. Have you ever met someone who was 90 years old and they have a funny smell, like their organs are starting to rot? Well, imagine having that smell in your 40's or 50's.
-Having to wear DEPENDS FOR MEN because you've lost control of your bladder and bowels and find yourself sh*tting uncontrollably at times you least want to. Don't fool yourself into thinking the new "slim fit" design for men is in any way cool. It is not. Nothing gets you around the fact that you're an adult wearing a diaper because you wouldn't stop drinking.
-Constantly being worried about having to go on disability, because the doctors in the hospital told you that's probably the road you'd be going down.
-Not being able to sleep at night. Extreme insomnia is a common side effect of cirrhosis.
-Developing acne. That's right. Acne. My husband had totally clear, soft, perfect, beautiful skin since the day I met him... until he developed cirrhosis. And suddenly he had acne, all around his mouth. Remember, a poorly functioning liver can't process toxins, and those toxins are going to show up in your FACE!
-Having to get a paracentesis. In case you don't know what this is, it's where they stick a gigantic needle into your stomach in order to drain about around 20 liters of liquid that looks like a combination of puss and piss. Jake had TWENTY ONE liters of liquid drained when he was admitted to the hospital in December. For most people this is NOT a one time thing - most people who develop cirrhosis have to do this over and over again.
-Having the chills, being cold all the time
-Throwing up blood. Luckily this didn't happen to Jake this time around, though it easily could have. According to Jake's ex wife, this did happen about halfway into their marriage - there was a day he drank so much he started throwing up blood and she had to take him to the hospital. I truly believe that the reason he didn't have a problem with bleeding, this time around, is because he was drinking aloe vera juice. His doc in the hospital took a look at his esophagus to check for bleeding varices and determine if they would have to put a clamp on, and his esophagus looked great. This is one of the FEW symptoms of cirrhosis Jake never developed, and I truly think it was because of the Aloe. You can see the brand he drank, on Amazon. He drank about 2 cups a day.
-Looking like a walking skeleton, with skin and eyes so yellow (and sunken in) you don't want to see pictures of yourself. There was a day I took a photo of him in a club next to the lead singer in a band, and he was so yellow he looked like he had paint on his face.
-Having people mistaking your wife for your daughter, or your kids for your grandkids, because you look so old. When this first happens, you're probably going to be in some kind of denial that you actually look that old, and everyone else just needs to get their eyes checked. Trust me, it's not them, it's you. Yes, you really do look that old. Your wife just doesn't want to hurt your feelings by telling you (at first... but she probably will, eventually, tell you the truth).
-Eyes that seem to be irreversibly "sunken in." This is the biggest thing that makes Jake look much older than he is. Well, that and his wrinkled skin texture and the frown line that showed up on his face. It's not like he's frowning more now. He frowned on occasion as everyone does, but since he's lost eleasticity in his skin, the frown looks like it's practically permanent. I had hoped that with a lot of the right supplements, everything would go back to normal, but this doesn't seem to be the case. I'm still hopeful that maybe if he gets completely off diuretics, he could turn things around, but... I am actually starting to wonder if the problem could be permanent because he has lost a large amount of bone density. Now I'm starting to realize, when you lose bone density in your face and eye sockets, you can't get it back! The whole structure of your face can change, and it can become permanent if you let your liver "stay impaired" for too long.
-Losing your teeth and developing gingivitis. Jake always had perfect, beautiful teeth, and was very careful about brushing and flossing them. But developing cirrhosis means you lose bone density. Suddenly he was developing terrible tooth aches, and his teeth were starting to fall out. His gums looked red and swollen, and they could no longer support his teeth. He had to get a ROOT CANAL.Even though he was taking much better care of himself and taking supplements. When you get cirrhosis, all the toothpaste, dental floss and the best toothbrush and dentist in the world is NOT going to fix your problem. And by the way, it just took one visit to completely max out his dental insurance.... he will probably have to pay about $5,000 out of pocket this year alone, and I shudder to think of what it's going to cost in the future, to just try to keep the rest of his teeth from falling out (I realize it may not even be possible to save them).
-Man Boobs. Yes, that's right, cirrhosis can make you develop gynecomastia (excessive growth of male breasts). And they're not going to be pretty man boobs either. Think: National Geographic.
-Never wanting to take your shirt off... which means, basically, having NO sex life... and even if you can still get your groove on, you'll probably have THIS THING (see pic below) in the way.
-An Umbilical Hernia (a belly button the size of an orange). Yeah, not exactly something that's going to make you want to get naked ...unless you're married to someone who's got a thing for threesomes. An umbilical hernia is not just a little unpleasant to look at... it can also be life threatening. If you develop one, it means your intestines are spilling out of your belly button hole, and they can become "strangulated" which means your circulation can be cut off, you can develop gangrene, and you can DIE.
Price tag to fix an umbilical hernia? We got an estimate from Jake's medical provider and they quoted us about $95,000. Why so high? Because it involves a 3-5 day hospital stay. Why is that? Because when you have cirrhosis, a "minor" medical procedure can become extremely complicated, you have a very high risk of decompensating, and may need to have an emergency liver transplant!!
Jake's doctors were unwilling to do the procedure unless he got evaluated for a transplant. This meant Jake had to take off 3 days from work (UNPAID), to meet with dozens of people to get different tests and evaluations.
This is what a transplant evaluation involves:
He had to get a chest X-ray, abdominal scan, go to an "evaluation class," get a psychiatric consultation, get an electrocardiogram, get a persantine thallium test (test to check your heart muscles), get an echocardiogram, go to a financial consultation, and have a cardiology consultation. And both of us had to meet with a social worker, IN PERSON (because if he indeed did need a transplant, they want to be sure his wife is willing to take care of him). Given that this liver clinic is about an hour's drive (one way) for both of us, this added up to a lot of missed (again, unpaid) time off work for both of us. All this for what would otherwise be a simple hernia repair!
Hopefully you have insurance! There are other doctors that will do it for less, but they may not take insurance. Please note that most surgeons will want to use some kind of mesh that can become life threatening (but it is considered what they call "The Standard Of Care.") It is estimated that 30% of all mesh procedures will fail, and the person's body will reject the mesh, resulting in further complications and even death. Ever seen the lawsuit commercials for transvaginal mesh? Picture having that stuff under your belly button. If something goes wrong, get ready for a LOT of pain that never seems to end. Don't believe me? Check out THIS PAGE and the comments that follow.
Varicose veins on your legs and feet. They will start to look just like this.
-Spider Angioma. You can develop spider like red blotches all over your neck, and other places on your body. Jake got this, too, on his last stay at the hospital.
-Puffy, swollen feet and legs
-Being worried about losing your job because you are so sick, tired, and in so much pain you can't even go to work
-Being fatigued and uncomfortable all day.
-Having clothes that don't fit... having to buy extra large shirts to accommodate your belly, but then the sleeves are way too loose
-Having to take up to 7 baths a day because it's the only thing you can think of that might ease the pain and discomfort you're in (but even that doesn't work).
-Osteoporosis. Think that's just for old women? Wrong. It can happen to men in their 40's who develop cirrhosis, and yes, it happened to Jake. This means:
-Having terrible back pain all day, to the point where you start walking around like the hunchback of notre dame. Jake has already spent about $2000 seeing a chiropractor (in less than 6 months), trying to ease his back pain.
-Shrinking in height. Your bones and everything will start to shrink and deteriorate so you just aren't as tall as you used to be. My husband used to be a good 5 inches taller than me, but now when I am in medium sized heels, we are the same height.
when you develop cirrhosis, you will start to look like those people you see in "before and after" "CRACK ADDICT" photos. We've all seen them. Stop fooling yourself that you're somehow "better" than those people because "At least I'm not on Crack!" Trust me, you WILL start to resemble those people... your skin will wrinkle, you will lose weight, your eyes will look "sunken in," and you'll lose some teeth (even if you brush and floss like crazy). I once had a boyfriend who drank like a fish, smoked a pack of cigarattes a day, and I think he justified it by way of the fact there were people in his family who did drugs that were way harder than he ever did. Don't fool yourself. There will always be someone out there with a case that's different from yours, but that doesn't mean you're any less guilty or less pathetic. In a way you are even more pathetic because you're trying to fool yourself that THEY'RE the pathetic ones. Get over yourself, stop looking for lame ways to justify your behavior, and get help.
-Having people coming up and asking if everything is ok (this happened to me probably as much as Jake). Having to listen to people make comments about you when you are within earshot.
-KNOWING that the neighbors, your co-workers, family, and friends, are talking about you.
-Not being able to HIDE your dirty secret anymore. If you are a sneaky alcoholic, trust me... when you develop cirrhosis, the cat will be out of the bag and everyone will know something is going on, and people WILL be talking about you! A good amount of them will probably think you have AIDS because your face will suddenly be so gaunt and bony (with a grayish yellow tone). I don't think Jake thinks anyone knows what's truly been going on with him, and trying to hide it on my end, for the sake of his pride, has not been easy. There are many times I want to say, you did this to yourself. Don't drag me into it. I'm not hiding or lying about one more damn thing for you! I have a friend who said a friend of hers saw Jake and could tell he had cirrhosis, because her own father had it. She probably represents many others who have seen Jake, and knew what was going on. Just because people are not coming up to your face and saying something to you, doesn't mean you're keeping it a secret. When you keep abusing your liver by drinking. the only person you're really fooling is YOU!
-Being told by doctors that your chances aren't good, and your only option for survival is a $400,000 liver transplant, and the odds of them finding a donor in the 2 years you have left, are probably not good. Don't count on your wife giving you part of her liver, NO MATTER HOW MUCH SHE LOVES YOU, if you got into this position because of self-abuse. She might consider it for a while out of naturally-engrained guilt most of us women have way too much of, but if she's got half a brain and does her research, she'll figure out most liver donors (and recipients) suffer with lifelong complications (and many have died) after a liver donation. So, she will probably weigh all the facts and ultimately decide (rightfully so) that it's your damn fault for putting yourself (and her) into this position. And even if she was planning to give you her liver, she very well may have some girl friends who are going to do their best to talk her out of it. When a girl friend of mine was planning to give her husband one of her kidneys, after he'd shot his own liver due to substance abuse, I FIERCELY voiced my opinion that she should keep her own kidney, and that he put himself in that position, and she shouldn't risk getting sick or dying because her husband chose to drink and smoke and eat junk food behind her back (and then lied about it).
If you are still hoping to get a liver from someone else, or a cadaver, you should keep in mind that, even to just get on the liver transplant list, you still have to go to AA twice a week. So, you might as well go NOW and SAVE your liver, your money, your health, and your good looks, so you don't have to go through all this other crap! If you do happen to get "lucky" enough to get a liver donation, please keep in mind that there are serious complications involved in getting a liver transplant, and your quality of life will still not be 100 percent back to normal. You're going to have to take anti-rejection drugs for the rest of your life, live with a huge mercedes / frankenstein looking scar on your chest, and again - there are serious complications, including death, for you AND the donor. Some hospitals will not do transplants unless an actual cadaver is used, so your odds of even getting a liver are even more slim.
UPDATE 12/10/16: PLEASE BE AWARE that just because you get on the transplant list, that does NOT mean you are guaranteed to get a liver. Many patients come close to the brink of death (and many patients die) because a liver either doesn't become available in time, or because the right donor just didn't happen to die at the right time. I've heard of cases where someone got a liver transplant and died because the donor had fatty liver. You'd think it would be MANDATORY that donors are ALWAYS screened for these things, but... THINK AGAIN.
-Having to get a LACTULOSE ENEMA (look it up... it's not pretty). And remember, the person assigned to administer these in the hospital is not going to be friendly. It's probably going to be someone who's tough, kind of nasty and bitchy (Jake's "enema" nurse made Nurse Rached look like f---ing Goldilocks). I guess it should have been no surprise because let's face it... having a job like that can't exactly put you in a great mood.
-Having nurses you don't care for, but you don't have a choice and are forced to let them help you go to the bathroom, and you have no control over whether they keep staring at your junk, which won't exactly be in top form. There's a chance you might get a nice nurse, or even a hot one... but then if you do, you will probably find yourself praying to God she doesn't have to help you very much.
-Crashing and totaling your car during a fit of hepatic encephalopathy. Having to deal with the insurance company, and knowing your rates are going to go through the roof when your policy is renewed.
-Losing your driver's license (yes, that's what happened all right). (UPDATE February 2016: It's been over two years and we are STILL DEALING with the DMV because of this former license suspension!!!) You WOULD NOT BELIEVE the crap we've had to deal with in trying to get Jake's license back, which really ticks me off given the fact that this shouldn't have happened in the first place since his doctor completely failed to let us know he should be taking lactulose!!!
FYI when you lose your license, the DMV will likely require you to take a WRITTEN AND A ROAD TEST, ONCE A YEAR, just to make sure you're not a public safety hazard on the road. I'm telling you, if you have even the slightest sign of encephalopathy, DO NOT GET BEHIND THE WHEEL, IT'S NOT WORTH IT. YOU COULD LOSE YOUR LICENSE OR WORSE, KILL SOMEONE ELSE OR KILL YOURSELF. IT IS WORSE THAN DRUNK DRIVING!
I have spent countless hours on the phone with the DMV and doctors, trying to get someone to clear him to drive again... omg... I'm not even going to go into it here, it is a whole blog post in itself. Please, just just trust me on this one, don't go there. In September I talked to a woman who's fiance crashed his car into a school bus on the first day of school! No joke. Don't risk it, it's not worth it!!!
Once your license is suspended...
Like catching the bus? I hope so! Of course, you're welcome to "chance it" and go ahead and keep driving.... but just know that (in California at least), if you get pulled over just once, and get caught, a first offense can put you in jail for FIVE DAYS, PLUS you will be fined up to $1000 http://dmv.ca.gov/pubs/vctop/d06/vc14601.htm And being in the financial hell-crisis you and your family are probably in, you may not want to count too hard on your wife helping you get out with a bail bond. So let's hope you're good at making friends with thugs! And that you're not TOO pretty.
-If you do try to re-apply for your license, your wife is NOT going to be happy about having to take time off work to drive you to the appointment (don't think you can just drive yourself to the DMV and park around the corner where no one can see you, and walk in as if you just took the bus, because they will ask to meet the person who escorted you to the appointment). And if you flunk the written portion of the driver's test because you were too lazy to study the little DMV booklet your wife gave you (yes they make you do both a written and road test), so you have to reschedule and BOTH of you have to do it all over again, she is going to be SUPER PISSED OFF. Ask me how I know this!!! (2016 update: Jake actually failed his written test THREE TIMES, because he refused to study and take the test seriously... you don't even want to know how pissed I was... I was truly contemplating divorce, at that point).
-Unconrollable farting.... yes, I know men enjoy a good fart now and again. But when it gets to the point where you actually start complaining about it and are seriously worried your coworkers will think you have a tendency to sh*t in your pants.... it's not so fun anymore.
-Having to commute and take time off work (if you can even get a job), to go to doctors appts, doctors appts, and more doctors appts. When Jake wanted to get his umbilical hernia fixed, the Liver Disease department made him take TWO days off work to see people in TWELVE different departments (BEFORE the surgery we never even had). Why? Because when you have cirrhosis, a minor procedure can become a MAJOR procedure. Having what's normally considered minor surgery can trigger all kinds of complications and you can decompensate, you can develop ascites and if you suddenly get very sick you may have to have an emergency liver transplant! SO, as a requirement to have the hernia surgery, the doctors made Jake go to a dozen different appointments to meet with different people, AS IF he was going to have a liver transplant (just in case).
They made him meet with a social worker, financial advisor, he had to get an endoscopy, get a ton of blood work done, meet with a nutritionist, different surgeons, and more (they also made ME meet with the social worker, in person, so I had to take several hours off work, AND I also had to pick him up from his endoscopy).
After seeing all of these doctors and going through all this work to try to get qualified to get on the liver transplant list, guess what? We were told he does not even qualify to be on the list. I think it was a combination of the fact that his MELD score is only an 8 and his liver function tests are normal, PLUS the fact that we made it very clear he does NOT want a transplant (he was only going because it if he didn't, they wouldn't clear him for the hernia surgery).
After all that time and headache, we ended up scheduling Jake's surgery with a different doctor, out of state, who does not use mesh. Coordinating THAT trip, the airline tickets, hotel, car rental, etc, plus putting together a "pre authorization" package to ensure Jake would qualify to get some kind of coverage from his insurance company, took me several weeks. I had to make so many phone calls during work hours (because most places are closed during off-work hours) I was seriously worried I was going to get fired from my job. And we still don't know for sure if the insurance company is going to pay one dime... we have to pay for everything up front and HOPE we get reimbursed.
-Expect to get your blood drawn all the time. Like getting pricked with big needles? I sure hope so!
-And last, but not least.... I want you to google "PENIS EDEMA" (or just click here)...and if that doesn't stop you dead in your tracks... I don't know what the hell will! For the record I want to say, I have no idea if Jake is dealing with this or not, and don't dare even ask him, knowing that if he IS experiencing any level of this, it would NOT be something he'd want to talk about!!! (He's made it clear, with body language, that sex is just not an option right now). But... while I am really hoping Jake is not going through this... I did read that this DOES happen, so....
I thought this was a pretty good photo... can be found on this page:
Like I said... Please don't make the same mistakes that me and Jake did. If your liver is still functioning, please consider yourself lucky. The liver is an awesome organ that does SO much for you. Don't abuse it. TAKE CARE OF IT!!!
The other thing it is important to remember, is that your liver can get to the point where you just can't undo the damage anymore. Yes it is true, that I am VERY hopeful that Jake will somehow be able to reverse this disease. But the fact is, I don't know for sure. All I DO know is that the COST of this disease, at this late stage, when we have barely scratched the surface in terms of reversing it, is HUNDREDS OF THOUSANDS of dollars, in terms of hospital bills, fixing a car that was nearly totaled, lost time from work (for both of us), the potential loss of my husband's job, an extreme amount of stress for both of us.... and it will probably cost $12-$40,000 more for us to have stem cell therapy... or $400,000 if we really do have to get Jake a liver transplant.
I want to paste some valuable information from this site, to remind you how important your liver is. The most important thing to remember is that your liver processes and removes toxins. If your body can't process toxins and get rid of them, it's like living in a house full of trash. The garbage has nowhere to go, so you are basically walking around with all this garbage still inside of you. Not a pretty sight! Your liver also produces bile, and if you don't have that, you will have a hell of a hard time digesting and eliminating food.
I found a great video that shows what the liver does, where it is, and why it is so important:
If for some reason you can't see the video below, click here: http://hepatitis-c.emedtv.com/hepatitis-c-video/the-human-liver-video.html
What makes it so important?
Your nutrient processing plant
Keeping you energised
Making fats work for you
Processing your proteins
Your very own health store
How your liver looks out for you
Making everything better with bile
Ask yourself, if I get to this point where I have cirrhosis and have this much damage, how much money would I be willing to spend, in order to fix that damage and save my own life? (I've said it before but will say it again: Jake racked up over $200,000 in medical bills due to cirrhosis... and this was three months after he quit drinking... so just because you stop doesn't mean you're going to be able to turn things right around... you have to quit EARLY). Once you get to that point of having that much damage, there is no such thing as 100% reversal.... you may make a partial recovery IF YOU WORK EXTREMELY HARD AND PAY A LOT OF MONEY... but wouldn't you rather stop drinking now, and save all that money, time, and energy?
Please don't make the same mistakes that Jake and I did. Get help and stop drinking NOW. If you are the wife of an alcoholic, please, encourage him to join AA and get help ASAP!!!!!
The money it's cost me and Jake, having to deal with this, is money we could have used to take TEN TRIPS TO HAWAII... probably more. And the long term costs would be enough to buy an entire house, with no mortgage, in CALIFORNIA.
Yes, quitting is hard. But if you quit now, you will have a chance to actually ENJOY spending all that money you could save. If you wait until things are too late, not only do you NOT get to go on all those wonderful vacations, but if for some reason you DO get to go, you are sure as hell not going to FEEL like going snorkeling, surfing, boogie boarding, hiking, biking, etc., because you're so sick, unhealthy, achy and uncomfortable, all you want to do is lay in bed.
Here is a video showing some reasons why it would be good to quit drinking:
Take it from Eddie Van Halen.... it's time to QUIT!!!