

Wednesday, November 9, 2016

The best advice I can give someone who's just been diagnosed with cirrhosis

UPDATE: I have an addition to this page. The very first thing you should do, when you've been diagnosed with cirrhosis, is LOOK UP ALL YOUR MEDICATIONS, and by that I mean, MAKE A COMPLETE LIST and do not leave a single thing out, because we did that and the one thing I didn't look up was the thing that caused my husband the most damage.  I cannot stress the importance of this, enough.  If you'd like to print out a list to take to your doctor, or a list to keep track of what you've been given, just CLICK HERE.


If you are in stage 4, you need to treat your condition as if it is extremely serious and life threatening, EVERY SINGLE DAY.... because it is.  I am starting to realize that it is a good thing to be scared. I can tell you that I was scared, pretty much the entire time my husband was sick, and I realize now that it was a good thing, because it kept me on my toes.

Sadly, as of Friday 11/4/16, I know of 23 people who have died from cirrhosis.  25,000 people die from this disease every single year, and 300,000 are hospitalized (in the UNITED STATES ALONE).  DON'T LET IT HAPPEN TO YOU!

From the time I started this blog, in December of 2013, I have always wanted to give people hope that they could recover from cirrhosis (and I was partly trying to give hope to myself in the process). I had to believe that something would help my husband.  I remember that hope was something I was desperate to have, when my husband was ill. I kept hearing over and over again that cirrhosis was irreversible. And though I didn't fully believe it (and I'm glad I didn't), I needed to hear from people who'd made it

I guess I wanted to be able to breathe a little sigh of relief... because there are few things that will cause more chronic, constant stress than having a loved one with stage 4 cirrhosis, who is in and out of the hospital, looking like they're going to die (and being given very little hope by the doctors).

In the movie The Shawshank Redemption, there is a scene where Andy Dufrain is told by his friend, Red, that hope is a dangerous thing. I love that movie because it teaches you that hope is truly a GOOD THING... and I really believe that.  But I also have to acknowledge that hope can be a dangerous thing, when it makes you let down your guard, while you are in a risky situation where your guard needs to be UP.  

Have you ever discovered a small bug or an ant on your arm, and noticed that if you try to blow on it, it clings even tighter? But then, when you stop for 2 seconds to take a second breath, and then start blowing again, you catch it right in that moment where it thinks the blowing is over and it can rest for a second.  When he lets down his guard...  then whoosh.... there he goes!

It's in that moment where people let their guard down, that they can get in trouble. It can be dangerous to let down your guard for too long, when you have cirrhosis.

I have seen way too many times where someone started getting worse, when they weren't doing the small things every day - like eating right, drinking the water fresh, regularly, and taking supplements. Those small things are actually a BIG DEAL, because when you skip them, they can lead to a BIG DISASTER.

There have been times where, after I heard of someone passing away from cirrhosis, I've thought of the opening scene in the movie Cliffhanger. There is a couple stranded on the side of a mountain, and Sylvester Stallone's character comes to save them. The girl is a little nervous, but things aren't SUPER nail-bitingly scary... yet.

Then all of a sudden, as the girl is crossing the line to get to the helicopter, part of her harness breaks, and the girl starts slipping, and she starts to panic. Next thing you know, she is screaming and wriggling and begging for Stallone's character to please save her and not drop her.... but as hard as he tries, he just doesn't have the ability to hold on... and she falls to her death. One minute she was there with her boyfriend, smiling, on the side of the mountain... and a few minutes later... she was gone.

That scene reminds me of how I've seen far too many occasions where a person starts thinking things are going along ok, but then they make one "little" slip up (which turns out to be a big slip up, stacked on top of a lot of cumulative slip-ups). That final error can be something that looks like it's not a big deal - like they stop drinking the water, or they drink soda, or have a little alcohol, or they eat raw seafood.. and next thing you know they are in the hospital, in an extreme life-and-death situation, hoping that someone will be able to save them... but the situation is just beyond everyone's control... and the person dies, and it shocks everyone.

Stallone's character represents the people I've seen, who are trying to save someone from cirrhosis. They're doing everything they can think of, to save the person who in on the brink of death... but there gets to be a point where you've run out of options. A person can only do what they are able to do. Stallone's character would have had to have had a third arm, in order to save that woman, but he didn't.

If you've seen Cliffhanger, you may remember how Stallone's character was utterly wracked with guilt, for a long time after the woman fell (and her boyfriend made him feel even more guilty). But the fact is, he'd done everything he COULD, to save her. He couldn't control the fact that she was slipping, and there was nothing else he could do! 

It is CRAZY and HEARTBREAKING to see the shock and bewilderment most people go through, after their loved ones suddenly pass away from cirrhosis.... like they truly didn't see it coming. One day, their loved one is "doing ok," and the next day.... they were just GONE , and there is NO WAY to get them back.

In so many cases, I know the family members are going over, in their heads (just like I do) all the little things that could have been done, differently, that could have ended up in a different outcome.

It really takes an emotional toll on everyone (myself included), so I want to take this time to make sure you are fully aware of how serious this is. DO NOT LET YOUR GUARD DOWN UNTIL YOU'RE OUT OF THE WOODS... meaning, your MELD score is a 6, and your fibroscan reading shows that you're at least down to stage 2  (and even if you do get there, you still need to know that any degree of fibrosis puts you at a higher risk for complications from antibiotics or other medications, because you won't have as much "wiggle room" for your liver to sustain more damage, as the average person).

I'm not saying you can't relax at all, but you need to be aware of how serious cirrhosis is, and you will have a much greater quality of life in the long run if you put in as much effort as you can, to turning things around, as soon as you can. It is WORTH IT for you to make a CONCENTRATED EFFORT to kick cirrhosis in the ass and give it everything you've got, so you won't wind up in the hospital, in critical condition, with doctors giving you a stream of drugs that could damage your liver to the point of no return.

If you have cirrhosis, you should be eating healthy food, getting really good nutrition, not eating junk food, and having NO soda or carbonated beverages since they are extremely acidic and your body is in a state of extreme acidosis (which means you're aging very rapidly) which you will never be able to reverse if you drink soda. And obviously... NO ALCOHOL OR CIGARETTES ALLOWED!!!

I know it can be hard for someone with cirrhosis, who is tired and cranky, to feel the motivation to really work hard to turn things around. And it seems like sooo much work, especially if you think you have to work this hard, for the rest of your life.

But I'm not saying you have to do this for the rest of your life. Yes, you should take good care of your health, for the rest of your life, but try to think of it like, you're just going through a temporary phase of having to work very hard to take REALLY good care of your health, until you are out of the woods... and then you can let your guard down a little.

Think of it like you're someone who's taking on a side job to make extra money for the holidays. For a condensed, short period of time, you are working VERY, VERY hard and feel like you're not getting a break. But you're building up a fat bank account that will allow you to have spending money.

Having a healthy liver is like having a big bank account. It allows you some freedom to be able to spend your money on things you enjoy. If you have a healthy liver, you can actually eat things you enjoy, and do things you enjoy. When your liver is really sick, you can no longer do those things. So it's worth it to really make a concentrated effort to nurse your liver back to health.

What having cirrhosis (or having a loved one with cirrhosis) is like

When you have stage 4 cirrhosis, you're like the Titanic headed for the iceberg. Doctors will act as if it's inevitable that you're going to crash, because that is what they are USED to seeing. The doctors can often act like they don't care, because they're not the ones who are going to drown... it's you (and/or your loved one). They see people drown all the time... what's one more?

Sometimes I feel like liver specialists act like that cranky person you get at the DMV who hates their job. They deal with so many miserable, unhappy people all day, they can't seem to conjure up the energy to be hopeful of your situation. I suppose I can understand this, to some degree. How would you like to have a job where the hospital directs you to give really sick, cranky people treatment options that will kill them slowly, and you see people die all the time, and everyone in the family is on edge, looking to you for help, but you just aren't able to provide a lot of options.  So yeah, they see a lot of people die, and for them, it's natural to assume your ship is going to sink, if you don't get a transplant.

I want to tell you to START TURNING THAT SHIP AROUND, ASAP, because the longer you wait, the harder it will be to avoid the kind of damage that could sink your whole boat. Some people are able to avoid the serious, long-term damage altogether. Others go through a little damage. And sadly... I've seen way too many people drown, because they just didn't have enough time to turn their ship around.

Another analogy I often think of is the 2004 Boxing Day Tsunami. You may have seen the scenes where there are locals running through the streets, trying to warn people to seek higher ground, and the tourists were looking at them like they were crazy. There was an infamous scene shot from a hotel window where a man was shouting out the window, telling the tourists, standing on the beach, to RUN!!!!!!!! He yelled it over and over again, and the tourists just stood around, staring at the waves, with no CLUE of how quickly that strange looking wave was coming RIGHT AT THEM, or that they were about to get wiped out.

There are soooo many times where I feel like one of those locals who's yelling RUN!!! RUN!!! Do something, NOW!!! This is SERIOUS!!!  And people still just kind of stand around, not taking it seriously, like they have all the time in the world. Next thing you know, they're in the hospital in way worse condition than when I first talked to them. When people sit around and wait to get better, they can easily die from esophageal or gastrointestinal bleeding, a stroke or heart attack, or spontaneous bacterial peritonitis.

If I hadn't gone through these things (or seen so many other people go through them), I'd be just like one of those tourists on the beach... totally clueless.  I was just like one of those tourists on the beach... no idea what was about to hit me and my husband. 

Why do you suppose the tourists didn't run, when the locals were yelling, RUN!!! RUN!!! RUN!!!! ????

It's because those tourists had never seen anything like that before. Nobody had warned them about tsunamis before. There was no warning system. They had no idea how fast that wave was moving, how soon things were about to turn into a total disaster. When it's coming right AT you, you're not seeing things from a broad perspective, and you can't see how fast things are really moving... until they're about to get EXTREMELY BAD. Next thing you know, you're IN IT, with no time to steer clear of the disaster. Not only did I see it  happen like that with my husband, but I've talked to hundreds of people who've been through the same thing.

That is exactly how you feel when your loved one gets stage 4 cirrhosis. It hits everybody like a tidal wave, because in most cases, they've never seen anything like it before, in their lives. The wives I talk to are always in disbelief, about how bad things got, and how fast. They are almost always as blindsided as I was! And the doctors don't seem to do the best job of preparing people for what is about to come.

The moment you start feeling the first symptoms of liver problems... indigestion, yellow eyes, pain in your liver, edema... that is when you want to start "running for the hills." Do everything you can to AVOID an impending disaster. STAY FAR, FAR AWAY FROM IT.  You need to put a lot of distance between you and the wave. Don't even give that scar tissue a chance to take hold of your liver. Don't let things get SO bad that it could be too late to turn things around.

When the liver becomes clogged with scar tissue, it's like your whole plumbing system is messed up, and that messes everything up!

Jerry Seinfeld once said in a comedy bit that "the most frightening moment in the life of a human being" is when you flush a toilet at a party, and the water begins to rise. There you are, begging and pleading with the toilet water, saying PLEASE, go down... I didn't do this... this isn't my fault!!! And that is exactly how you feel, as a spouse who's trying to turn things around. Their plumbing disaster becomes your plumbing disaster!

In addition to a plumbing problem, a person with cirrhosis will also have a garbage and toxic waste problem. The liver is like the garbage man who gets rid of the trash every week, and you don't realize how important he is... until he goes on strike.

We all know how important it is to have filters in our bodies... like the lungs and kidneys. But the liver - even though it's the largest filter by weight - often gets overlooked, because we usually can't feel it, and it just kind of silently works in the background, taking care of things for us.  Just like the garbage and recycling men come at 7am and takes the trash away for you and you never have to think about it. It's only when he stops working, that you realize how good you had it.

In my opinion, the liver is the most important organ... because it performs over 500 functions, and it's the only one that REGENERATES!

In 1968 there was a trash strike in New York that left the street littered with garbage ... it was everywhere. Next thing you know, there streets totally stank and there were rats everywhere.

Well, that is similar to what happens to your bloodstream, when the liver loses it's ability to remove toxins from your blood. I've seen cases where someone thought they had a good amount of time to live... and they suddenly died from a heart attack or a stroke.

When you have a lot of toxins and waste in your bloodstream, you are at a much higher risk of developing a blood clot, because that blood's not able to flow through your veins like it should. Your blood going through your bloodstream should be able to easily slide through your veins, like a kid sailing through a tube at a water park. Imagine what it would be like if there was dirty water and a bunch of trash in the tube. The lining of the tube would get damaged, the garbage would get stuck, and there would be a blockage somewhere. In human terms, this means a person could have a heart attack or stroke.  

Since I've seen 23 people die from cirrhosis, I have seen that both parties - the person who is sick, AND their caretaker - have to treat this situation as if you just have ONE DAY LEFT TO LIVE.  How would you act, if that were the case? Would you be SUPER focused and do every single thing you could think of, to stay on track and make SURE that you beat cirrhosis, and not the other way around?

You have to look at cirrhosis like an opponent you are trying to beat. You have to be STRONGER than it is, and stay on top of it, until you are in the clear!!!  Until your MELD score is down to a 6, and your fibroscan score is down to less than a 12.5, you should be extremely cautious to do everything right, so that you can stay out of the hospital.  I've heard WAY too many stories of people who told me their loved ones got WAY WORSE after they went into the hospital. You need to be aware of the fact that MANY doctors and nurses see it as a GOOD THING for your MELD score to go up... because it means you're closer to a transplant.

This might be a good thing if a transplant REALLY WAS your best option, but in my very strong opinion, it ABSOLUTELY IS NOT.  Getting a transplant can mean you will have to be on anti-rejection drugs for the rest of your life (and they can cost $3,000 per month!)

Those anti-rejection drugs can have extreme side effects. Like renal dysfunction, headache, tremors, gallstone formation, elevated cholesterol, glucose intolerance, nausea, abdominal distress, gastrointestinal toxicity, edema, dizziness, anemia, hyperglycemia, fluid retension, osteoporosis and fatigue. In my opinion, fatigue is the worst one. The reason you feel fatigue is because you're walking around all day with a lowered immune system... like when you're SICK. To me, this is just not the best option for recovery. You can learn more about why I'm not a big fan of transplants, by reading THIS POST, THIS ONE, and THIS ONE.

Every doctor will acknowledge that the liver has the ability to regenerate... to a point. So, why is it that eventually it stops regenerating? In my opinion, the biggest reason is because a person with cirrhosis does not have the circulation to be able to get rid of the scar tissue, when you have too much of it. A little scar tissue is not a big deal, and can be eliminated, through blood flow and the body's normal regenerative processes.

But when a person has stage 4 cirrhosis, they will become extremely fatigued and will barely be moving, so their circulation is limited, and that scar tissue never gets removed.

If you rented a Jeep and drove it through a muddy area, and then came home and needed to clean off that mud with a hose, would you put the hose on full blast, or try to clean it off with a little trickle?

You'd put it on FULL BLAST, of course, because everyone knows that the more circulation and force you can use, the easier it would be to remove the caked on mud.

Well, in my opinion, that caked on mud is kind of like the scar tissue that's on the liver. It's not that you can't get rid of it. But it's just that the body has lost it's normal ability to get rid of it, while you're in the tired, fatigued state that you're in, and you don't have proper circulation. You need to HELP your body to get that circulation back, to try to reduce some of that scar tissue (I'm not saying it can all be reversed, but in my strong opinion, I believe it is very possible for you to reverse just enough of it so that you can have a relatively normal life again).

I believe that the reason my husband got such good results with the Water and PEMF is because it greatly improved his circulation. PEMF is approved in other countries to improve vasomotion and microcirculation... in other words, you can get the blood flowing to all parts of the body, when they were not able to before.

I've seen videos of peoples' blood, before and after they drink the water, and after they do PEMF, and it is remarkable.

Also, the water is usually very good at reducing inflammation, and in my opinion it seems that inflammation leads to scar tissue, over time... unless you are able to interrupt this process. If you can introduce something into the body that will drastically lower the inflammation, I believe it is possible to reduce that inflammation in a way so that you can prevent some of that scar tissue from developing. True, this is MY THEORY. I don't have proof of this, and I'm just making my conclusions based on what I've seen, after observing my own husband, and after talking to other people (and their loved ones) who've had these same "internal plumbing issues."

In my opinion, there are a LOT of things that you can do, to turn things around, even if you are not able to get a water or PEMF machine. But they key with EVERYTHING is to start EARLY, and take your situation extremely seriously.  Again, keep in mind that 25,000 people die from cirrhosis every year, in the US alone, and 300,000 people are hospitalized. DON'T LET THIS HAPPEN TO YOU. 

When it comes to cirrhosis, AN OUNCE OF PREVENTION IS WORTH A HUNDRED POUNDS OF CURE. Don't ever forget that. It could be the difference between life and death.

I hope this helps.


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