The Power of Hope - A Message for you caretakers - and the people who don't give up hope on themselves!

What I've found, after about 7 months of talking to people affected by cirrhosis, is that what people seem to need, more than anything, is hope. You need a lot of it to keep taking action. Hope is the thing that enables you to keep moving forward and finding the things that are going to work for you and your loved one. Without hope, you really don't have much.

When you have a loved one with cirrhosis and you become their advocate and caretaker, you need a tremendous amount of energy in order to keep going, with all the trips to the the hospital, taking care of your loved one, checking up on what the nurses and doctors are doing, looking up medications, looking up different alternative treatments (everything from enemas to IV drips), and making endless calls to the doctors, insurance companies, and various people whom you're hoping will be able to help!

When my husband was in the hospital. There were so many doctors that thought he was going to die without a transplant, and they did NOT give us a lot of hope that he was going to pull through. They even sent a priest to his room! Plus, another person to talk to him about "getting his affairs in order." Most people around me thought he was going to die - like Jake's ex wife, people at the hospital, and people around us. My neighbor even declined to look after him while I had to leave on a trip, because with how bad he looked, she was afraid her Mom would find him dead and it could traumatize her.

I asked 3 different doctors, straight up, if it's possible to recover from cirrhosis (without a transplant). They all said NO... but I absolutely refused to believe it. I always had hope that we'd be able to reverse his cirrhosis naturally, and I'm glad I did!
 

I spoke with a young woman on the phone, who was told her mother only had a 2 percent chance of survival. She had multiple issues, including diabetes and kidney failure. Her ammonia level was over 300. But I still told her not to give up hope! Clinging on to a tiny sliver of hope is like clinging on to a branch that can keep you from falling off a cliff, until help arrives. I say, hold on as long as you possibly can!

I realize that hope can seem like a dangerous thing, because when you have a lot of hope and something doesn't work out, it hurts more than if you didn't allow yourself to have that hope in the first place.

But overall, your chances in having success in life and doing great things are MUCH greater when you allow yourself to have hope and determination, even if nobody around you does! So please understand that by writing this post, I am not trying to give anyone false hope (obviously you do have to take action). Yes, I know. It really hurts when you feel like you hoped, and the thing you hoped for didn't come through. But HOPE IS A CRITICAL ELEMENT FOR HEALING!!!

I'm including this clip from my favorite movie, the Shawshank Redemption, as a reminder of why hope is a good thing.

While I believe it's important to have  hope, I also think overall, IT IS BETTER to have a lot of hope and faith that things will work out, and do everything you can possibly think of, to help a loved one get better (or to get better yourself) than to accept he idea that cirrhosis cannot be reversed.

If I had listened to the people who made it sound like my husband was going to die, and if I had believed them and had given up hope, my husband could be DEAD right now. I ABSOLUTELY REFUSED TO LISTEN to ANYONE who tried to tell me he was going to die. I was like that person who would cover their ears and go NANANANANANANANA and try to shut everything else out, because my sole focus had to be: HE'S GOING TO LIVE!!! (Even if it kills me first).

When Jake was in the hospital, Jake's ex wife said to me, "What are we going to do? What are we going to tell the kids?? (meaning, when he's gone). They have 2 kids.  And I just had to block out her words. I couldn't even bear to think of losing him. It was JUST NOT AN OPTION!!!!!

When you or a loved one has been diagnosed with cirrhosis, you can feel like someone in a car that suddenly died or lost power in the middle lane on the freeway, and you're doing everything you can to just make it to the right shoulder, safely, before you completely lose momentum. If someone tried to say anything negative to me, like, "What are we going to do, if we stall?" I wouldn't even be able to muster the words to speak to them, I'd just tune them out (or push them away if necessary) because in a dangerous life-or-death situation like that, you have to have a SOLE focus: Making it to safety. With Jake, it was like we were in a car together, just trying to use whatever energy we had left, to get to a place where we'd be all right.

Despite the fact that I was adamant in my thinking that he would get better, of course I knew there was a chance Jake could have died. But at least I knew that if he DID die, I would know that I tried everything I could, in order to help him. And overall I think that's way better than simply accepting that someone you love is just going to die!!!  I would like to think that, even if Jake did die, that he would be up in heaven, appreciating the fact that I had done everything I could think of, to help him!

Sometimes, that person who is sick really needs just one really strong advocate to be there for them, to help them pull through. If that person is very sick or not thinking clearly (especially if they have encephalopathy), they will probably not have the strength or the ability to do things that need to be done.
  
I want to dedicate this great song, by Gavin DeGraw, to all the people out there who refuse to give up.  I have talked to a lot of "soldiers" this year... and your loved ones are lucky to have you.  If you happen to be your own advocate, I commend you. Many people do not have an advocate, and if that's the case for you, I say, be proud to be your own advocate (I consider myself to be my own best advocate!). Keep it up!

I watched a video with a man who was told by just about everyone that his mother was going to die (I have a link for it on my private blog). I don't know what her condition was, but apparently she was very ill. She was in her 80s and at the point where she was so far gone, they took her off life support, and she was supposed to die within half an hour... maybe even as quickly as within ten minutes. But her son REFUSED to believe she was going to die! Even though everyone else thought she would. She had been in the hospital for 16 days and her oxygen level was low and never seemed to improve. People had flown in from all over the country to pay their respects before she passed. All the doctors were saying the should be taken off life support, and that it was basically CRUEL, for him to try to keep her alive when she was suffering.

But guess what? This ONE guy NEVER lost hope, he never gave up on his Mom, and he was DETERMINED to do everything he could, to help his mother live. He refused to listen to any of the people who made it sound like she would die. Even when they took his Mom off life support, and he was told she'd probably be dead within 30 minutes - maybe even as quickly as within 10 minutes - he still believed she would pull through.

He had brought some of this special water that I keep telling you guys about, to the hospital (Sorry I know I keep talking about it but it really does have scientific properties that make a difference). He actually dumped out that water they had at the hospital and kept giving her this water instead. He told her to keep drinking it. She slowly started to improve, and he said she "woke up" and her eyes were open. AND HER OXYGEN LEVEL WAS FINALLY COMING BACK TO NORMAL!  (I am not saying this water is a "cure" for anything. I can't use the word cure. I'm just saying she was dying, she drank this water, and she walked out of the hospital. You can make your own conclusions after you see the video). The doctors completely avoided this man, clearly because they were embarrassed. He said when he saw them in the hall, after his mom woke up and started getting better, they went in the other direction, unable to face him.

She was able to leave the hospital in 3 days, and the video I saw was recorded a year and a half after they brought her home, and she was continuing to do well!  When you are desperately trying to help a loved one with cirrhosis (a disease that seems to have a very bad stigma attached to it), it can seem like hope is in short supply... so I want to give you just a little more because there was a time I really needed it! 

While the majority of what I found online, regarding cirrhosis, was negative, there were a few people who gave me hope that my husband might be able to turn things around with supplements (like Dr. Paul Haider, and Dr. Burt Berkson). Although I never saw Dr. Berkson in person (Jake never did the IV therapy though the supplements were a lifesaver), and Jake didn't even use ten percent of the things on Dr. Haider's list, the thing I appreciated the most is that they both gave us HOPE, that cirrhosis could be healed.  


It is my hope for you that you and your loved one will be able to beat cirrhosis, like my husband did. 

Ellie