Show 192 A Q&A from How Far Are You Willing To Go… To Live? with Karen Hoyt

In this interesting chat with Karen Hoyt, she shared her story of ‘one minute you are enjoying a sunny day bike ride, the next you are fighting for your life with end-stage liver disease…”  Unbelievable and true… Now, Karen Hoyt is on a mission to help others Live Longer Stronger. She is a teacher, writer, blogger, yoga instructor, and healthy living coach. Her low sodium diet and recipes have helped her, and thousands of others, thrive with liver disease from fatty liver, hepatitis, alcoholic, primary biliary cholangitis, and liver cancer. Listen to the podcast now: https://www.understandingautoimmune.com/liver

SHARON: Karen, you’ve got a pretty amazing story. Why don’t you share with us a little bit about it, and then we’ll jump right into how you became a thriver and how diet and lifestyle changed everything. 

KAREN:  A typical baby boomer, I was moving into my golden years. I was out walking with my girlfriends in the neighborhood. We had big beach bicycles and we had baskets on the front. We were ready to move into our retirement years.

I was in my fifties. I thought I was pretty healthy. I’d always taken good care of myself. I make a good cinnamon roll and I’m a good cook.

But, literally, my liver failed overnight. I was cycling along the Arkansas River one day; and, by then, I’d move up to a three-speed. That night, my body swelled double and I turned yellow.

They put me in the hospital and they said, “Your liver is failing.” It was in August 2010 ─ I actually had my anniversary ─and they said, “She won’t see Christmas.”

I don’t know why they always pick a holiday to put that deadline.

“You won’t see Christmas.”

It terrified my grandkids. I think they were more worried about “Great, who’s going to make the cookies?”

SHARON: “Where are the good gifts coming from?”

KAREN:  Exactly! At that point, I think you begin to throw everything but the kitchen sink at it because, then, literally, I got up and walked out of the emergency room. I had had a year of nursing school before I became a teacher. 

And I told the little nurse, “Honey, I know the rules and if you don’t that pull this IV, I will.”

I had a hepatic encephalopathy so not only was I robbed of my physical body at that point, mentally, I wasn’t good. And so, I texted my family and said, “I’ve escaped. They nixed my records up.” I literally ran to my car. And that’s when they put me back into the hospital. 

I was going to outrun this diagnosis. And then, when I was forced to face it ─ literally, blood transfusions within a few hours ─ that was when I thought, I’ll show you. 

Literally, I said this to the emergency room doctor. He said, “You have Hepatitis C and you’re dying” and I said, “You don’t know me.”

I don’t know what it was that rose up and it was kind of my term. I’m going to throw everything but the kitchen sink at this and we’ll see what works.

And that’s how I found my “live longer stronger” motto and my nutritional ninja. I think all the little sayings that we make up in our head ─ I’m a former language arts teacher. I think we build a hero mindset. I think we see ourselves.

We’ve got the setting of our lives and here’s our geography and the background and it’s set in Oklahoma. And here’s this English teacher who started to be a nurse but couldn’t do the math. Now, look, she’s moving up to the peak of her life. She’s going to retire as a senior high teacher with teaching college classes.

At that point, I was doing Special Olympics and I felt like it was such a beautiful apex.

And then, I met the monster. I pulled out all my weapons. 

“I’ll show you, hero.”

Don’t we all do that? Right now, aren’t we all on a mountaintop with a sword of some kind in our hands?

SHARON:  I absolutely do. That’s why I relate to you so much, Karen. My response, too, was “What? No, I’ll show you.”

The only thing was that it took me three years to get off of all meds and become completely symptom-free. And I remember when I was doing sort of this “I’ll show you” at the round of different doctors I ended up going, the one that I finally chose to be part of my wellness team said, “Sharon, get real. This is your life.”

And I told her, “No, three years, I’m done with this.”

Looking back, it took me three years and one month and I’m going, “Why did I tell myself three years? I should have said, ‘Three months, I’m done with this.’”

I don’t know if that would have worked but it was interesting to me that I had said, “Three years, I’m done with this” and it was in three years and one month that I was symptom-free and able to get off of all the medications.

Now, in all candor, they won’t say I’m cured and I always say, “I don’t care. I feel great. I’m a thriver. 

I love your story. Your thriver mindset is so awesome. So you’re doing great now with this “Live Longer Stronger” ─

KAREN:  When I first went off of my meds ─ by November ─ I was still pretty much declining. I had end-stage liver cirrhosis. It was as if I drank my whole life hard like rotgut whiskey or something which I’ve never even tasted. I was very cirrhotic and I had a lot of internal bleeding. And there were thirty-five or forty pints of blood over ─ I mean, I was sick. I was super sick.

But I still had the Hepatitis C virus like a lot of baby boomers have it.

I got my MELD score which is a liver score down to the point where I was arguing with my doctors. I said, “If you’ll drop me on some of these meds, then I’ll be able to get my MELD score down and then you’ll allow me to treat.”

So they did. They sent me to a transplant hospital for a workup. I wasn’t eligible for a transplant because I was sick and I had the virus.

Like you, I was determined to get my meds down. I had a calendar. I kept approaching my doctors with “So can we drop this one? Let’s watch my labs. See what I’m doing!”

And I was able to get back into the classroom.

You and I talked about how multifaceted illness is. I lost my interest. So I worked hard to get back into the classroom so I would be insured and then, I went at it and I was able to treat for 48 weeks off of the Hepatitis C virus and cleared it.

And then, I was back in the classroom living with end-stage liver disease and getting a lot surveillance done but I was running again. I was cycling.

I went to the hospital every three months but, at that point, “Here I am breathing again.”

SHARON:  You made it past Christmas.

KAREN:  I know ─ one more Christmas! After I finished that treatment, I had a boxful of legal pads filled with notes.

I’ve always journaled. Part of my spiritual journey and my physical journey on earth was to keep journals. My grandmother was a nurse and she journaled. 

It was a treasure for me.  Here were all these words and some of them were crazy but I thought, wow, if I had those dark moments, maybe someone else will.

And then, I started the website. I began to connect with other people with liver disease and, pretty soon, we had this whole family. We were all kind of hunkered down beating liver disease together.

Honestly, when they found the tumor, they sent me from a CAT scan down to the doctor’s office and my nurse looked up and she said, “Oh, you’ve got a new haircut” and I said, “I like yours” and she said, “Well, your platelets are rotten.”

I said, “I know. How’s my hemoglobin?” and she went, “Oh, Karen, it’s a big tumor.”

And it had only been six months.

My nurse got big tears in her eyes and I know that dread. It washes down the adrenaline. It was like everything dissipated to the floor. And when my doctor came in, he was pretty emotional and he kept saying, “Maybe it’s this, maybe it’s that.”

And I said, “Get me the CAT scan.”

So we did.

I met MC Hammer in Boise, Idaho years ago. When I was going into the CAT scan and they’ve got the IVs all hooked up, I was singing “U Can’t Touch This.” I don’t know why that was the song that came through and I thought, you know what, cancer can’t touch my whole body. You can have that little portion in my liver and you can grow and you can swell but I’ll get a transplant. You will not spread. You can’t touch this.

That was how I went into the CAT scan and by the time I got back to the tumor board, I said, “Let’s get rid of this liver. Let’s get me a new one. Let’s shrink this tumor, keep it down, and put me on the list.”

And I thought, if I can get through this, boy, now, my readers have somebody to follow all the way to the end.

You can understand that because we’ve gone on a journey together and I thought, okay, now, I can tell them how to be this and how to be that. I’ll tell them how to beat cancer.

I didn’t want to be the poster child for it but I survived and I thrived. And so, now, I hope cancer seems less scary to a lot of people.

SHARON:  I hope that’s what happens with The Autoimmune Hour as well. The reason for the show is to bring people like you – ‘thrivers,’ doctors, and other people who have gone through autoimmune to share their story of “Look, you can thrive regardless of your diagnosis.”

And yours was liver cancer and liver disease. 

How many of us can relate? 

I can absolutely relate to everything you’ve said about the body language of the people giving you the diagnosis. There were times I had to be the strong one in the room.

I appreciate that my team ─ especially early on when I was at the sickest ─ cared. I appreciated it but part of me was like, okay, why am I having to cheer everybody up here?

KAREN:  I get that. When the receptionist came in and I said, “And what are you here for, hon?” she looked real shocked and she said, “Well, I’m going to see if your insurance company will approve the CAT scan.”

I said, “Good! There you go. You’re busy. You could do it. Get that CAT scan.”

She was shocked. She held my hand for three years. 

I said, “Come on! One more round with the insurance company, girl.”

It’s like a little team. It’s a little family that we have. 

What’s cool is that I still have a lot of the same people in my corner. I still go by every time I go to the hospital. They didn’t have a big turnover so I get to still see the same people. It’s awesome.

SHARON:  That’s awesome! One of the things I talk a lot about on the show is finding your team that gets you. I saw a lot of experts. I was absolutely blessed at the time of diagnosis to have people in my world who said, “Oh, you want to go to Cleveland Clinic and get a second opinion? You want to go to Johns Hopkins? You want to go to Mayo? I can get you there.”

I was absolutely overwhelmed and blessed with being able to choose from the best of the best.

But that didn’t mean they got me as far as understanding, okay, I accept that right now my body is experiencing this but I’m not accepting it as my future reality. We are going to find something to do about it. 

And from a lot of the experts that I ran into, I would hear, “Get real, Sharon! This is the outcome.”

“No, that’s not the outcome. That’s a stat. That’s not the outcome for me.”

I’m glad you say that because “Pick your team” is one of the critical tips I’d  like to share. Pick the team you can to talk to and one that listens to you.

So often, I’ve talked to doctors and they didn’t listen to me and I was like, this isn’t the one for me because they did not hear a word I said.

KAREN:  I know that a part of your work is helping and coaching people and how to interview and how to talk to people. I think an important thing for an advocate to do is to say, “Hey, wait! When you go in and talk to your doctor, here’s what to wear; here’s what to carry; here’s how to appear.”

My readers are well coached on how to go in. Don’t go in there and start rallying that you’re going to be non-compliant. You play that compliant game and play it all the way to the hill and tell the doctor, “Yes, I’m with you. I hear you.”

Doctors want someone to be grateful for their education. As a former teacher, I go into these doctors and I would say to them, “You worked hard in school. I know you. I knew you your senior year. You were a good one. Thank you.”

And I get emotional. I’m grateful to those people.

Now, here’s where I’m coming from and here’s what I’ve changed with my diet.

I’ve been meditating lately and I’ve noticed this. 

“Can we watch for trends in my stats?”

And they’d be like, “Okay.”

It’s like mutual respect that’s happening. And now, I can be a little non-compliant but still fly under their radar.

Does that make sense?

SHARON:  It makes absolute sense. What is that old saying ─ “You’ll catch more with honey than you will with other things.” I think it makes absolute sense. And nothing is worse. If you see NCP on your medical chart, it means “non-compliant patient.” Somewhere along the lines, you’ve crossed some line and they’re calling you “non-compliant.”

But I also am a firm believer that you have to be able to know and set boundaries. I’ve gone to certain medical professionals who had very extreme choices for me. And I was like, hmm, no, I don’t think I want to remove that body part at this point in time. Thank you very much.

And I went and sought other people. I wanted to take it slower. It was like going from zero to “Let’s take out that body part.”

“I think I want a second opinion.”

And it’s critically important to allow yourself the opportunity to get a second opinion because when I went crying to a dear doctor friend of mine ─ and this was about that surgery ─ saying, “Oh my gosh, I still don’t understand. Why do they want to remove it?” he said, “Sharon, that’s a surgeon’s answer to a problem he cannot solve. We’ll find another answer to the problem because we can always remove it if it has to come to that. But let’s see if we can find another answer.”

And I was like, oh, thank you. I didn’t want to go from zero to a hundred that quickly.

KAREN:  It’s back to that respect. I respect that surgeon and that’s his field of vision. And so, I can respect that. But I’m looking outside so I’m going to find those people who will walk with me ─ as you’ve said ─ down that little…

And I’m real inquisitive, too. You have to be careful how you ask questions or you can offend doctors. 

It’s like “Would you please help me to understand?”

It’s an educational process. I do feel kind of sorry for the doctors these days with the Internet. People google stuff in the middle of the night and find any kind of answer and take it to the doctor.

I think we have to use a combination of knowledge and wisdom when we are trying to make these choices, advocate for ourselves, and find a boundary.

Thank you, Karen, for sharing your story and hard-earned wisdom. For more of Karen’s journey listen to our entire interview at https://understandingautoimmune.com/episodes/willing-to-go/

 

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About Your Host, Sharon Sayler

Your host, Sharon Sayler is a certified executive and wellness coach, communications trainer, public speaker, best selling author, and the founder of Competitive Edge Communications who specializes in teaching professionals critical nonverbal and body language skills including how to have those critical “tough” conversations. She teaches how to up-your-impact on the stage, in the boardroom, with clients, customers, team members and even how to deal with difficult people.

Now, she's taken those skills, her passion for clear and competent communication, her own experience dealing with a rare medical condition and her frustration with the medical community in understanding what it is like to have a chronic and complicated medical condition to teach others to become courageous self-advocates so they too can turn life transitions into triumphs. One way she spreads the word is through the podcast and videocast called The Autoimmune Show: Inspiring hope and help for those with autoimmune.

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