lemons_400px

Welcome

Hello, and welcome to Lemonade Tales! Pardon the dust while I get things rolling. I hope you enjoy the stories of inspiration, courage, and grace. I am humbled by each and every person and their personal struggles. This is the …

Share
Read More...
3

I’ll Take the Liver with a Side of Life, Please!

I met Jared Flowers when I was 10 years old, which means I’ve know him for the majority of my life. He became one of my favorite people in the world and a friend through thick and thin. Which is why he is my first “Silent Hero” interview. Over the last year he has been battling end-stage liver failure due to a bad prescription drug interaction. Here is his story.

What was life like before you got sick?

I would say honestly, I was in a bit of a rut. It wasn’t a big deal to make plans or see people because you have this thought of being invincible and being young. I totally took that for granted. Friends would call and I’d be like, “No. I am not going to answer that” or “No. I am not going to go out.” I was content being by myself in my own little world. Why? Because I didn’t want anything to go wrong. I now know that I wasn’t really living. I didn’t want to put myself out there to get hurt. I had a strong fear of rejection. You start to live with this fear and you get used to it. Fear becomes comfortable. You start to NOT live up to your full potential or experience life. Going to work or school and coming home and turning on the TV or getting on the computer is NOT really living.

How did you find out you were sick?

I wasn’t feeling well for several weeks, but as a typical guy I put off going to the doctor’s to find out why I was having pain in my lower left abdomen, feeling tired, and having trouble going up the stairs. Then one day I got up and had a gut feeling that something was really wrong and it was not going away. My skin was turning a shade of yellow and my eyes were too. I told my mom she needed to take me to the ER. They did their typical check-in, which included blood work. Only a couple hours later did they finally admit me. My blood levels were way off. None of it was normal. I thought this is going to be simple and they will give me some drugs and it will all go away. The crazy thing is they put me on the oncology floor. I now know they initially thought I might have liver cancer.

They pumped me full of fluids and ran lots more tests. They thought maybe it was gallstones. And I had several more tests/scans. They found a kidney stone and thought about possibly removing my gall bladder. Within 24 hours I was transported to Henry Ford, a bigger hospital that is more specialized. I was there for three days, where they did even more tests. Even a psych woman came in and asked questions like: Have you been depressed? Have you ever been admitted to a psych unit? How have you dealt with the death of parent or friend, and was I using drugs or anything to escape life? My memory was tested several times and I was asked some very personal questions, including what I prefer sexually. All kinds of specialists came and went, but everything came back to my liver because of my yellow coloring.

All my lab tests from my blood work came back abnormal — all the results were in red. They immediately put me back in ICU. They also knew that the tests were pointing again more to the liver. On day six, they determined it was “end-stage liver failure and acute renal (kidney) failure”. It still hadn’t hit me that I was seriously ill. I still thought it was no big of deal. Until one day when I was having severe nosebleeds (due to my blood not being able to clot). That was when I started to get scared. It was so much blood and it would take a half hour for it to stop. For the first time, I felt the possibility of my own mortality. All I could think was, “This is blood and you need blood to live. And if my body is not keeping it in, there is no good outcome.” They started to ask me more questions and I started to not be able to answer the questions they asked. I felt trapped inside my head. Due to high ammonia levels my brain wasn’t processing like it should have.

Why did your liver fail?

The doctors determined I was another Remicade case. Remicade is a prescription drug that is given to treat psoriasis, a skin condition passed down from my mother. If labs had been done before the infusion of Remicaid was administered to me, all of this could have been avoided. So, due to a simple drug reaction that was supposed to make me feel better, I was in a very serious life or death condition. I couldn’t believe it!

When did the doctor’s decide to put you on the liver transplant list?

On the seventh day they determined that I needed to be put on the Liver Transplant list. I was number one on the list in three states. Again, I was faced with just how serious my situation was.

They made me sign a durable power of attorney. I was no longer in control of what is happening with my body. Something serious was needed to intervene so I could live. Crazy thing is I am an identical twin and I couldn’t even have a partial transplant from my brother because there was too much damage. Ultimately, someone had to die so I could live. I had to decide if I wanted a Do Not Resuscitate (DNR) and the like. Still, I never felt like this was going to happen to me. This kind of stuff only happens to other people.

Within three days on the transplant list, they called me to say that a liver was ready, and I was scheduled to have surgery at 1:00 p.m. that same day. There is a short window for organs to stay viable. I waited for three and a half hours, but nothing happened. Eventually they came in and said that unfortunately, the liver was not viable and that recent tests were showing that I had pneumonia. They needed to fight the pneumonia first. So, no liver and more waiting.

I was hospitalized from December 23, 2010 through January 18, 2011 — the entire holiday season. It was really hard, but I had people visit me who I hadn’t seen in over 15 years. It was so comforting to know that people actually do care. And that you are not alone. No matter how much time passes, it doesn’t mean that you are not part of their life or their thoughts. And through the power of Facebook, I was able to see the messages from so many folks, which was very comforting. To my surprise, there were posts from many people whom I totally didn’t expect to hear from. That was the beginning of realizing how I needed to change my life. To live and to make myself be vulnerable. To let people love me because I realized how much I was already loved. I wanted more. I told myself that if I make it through this I am going to have to change. I had nothing but time to think in the hospital. I was thinking of things I wanted to do. I had to live now, for the moment. The blinders came off and I consider it a rebirth. I felt like a newborn.

How was the time between the hospital and the second call for the new liver?

They ended up sending me home because my levels started to come down, the ammonia went away, and my kidneys were getting better. They didn’t put me back on the transplant list since I was starting to stabilize. However my skin and eyes were still very yellow. I was afraid to go out in public and have people look at me and judge me. I even went tanning to minimize the color on the outside to make it less noticeable. I was hopeful, but five months later my levels started to increase again. I had to fill out all sorts of forms and paperwork for insurance and Medicaid to help cover the $250,000 transplant surgery. I don’t know if any family or person is really ready for this kind of financial burden and all the processes you have to go through to be ready for a procedure like this.

Crazy thing is, I didn’t have any outward facing symptoms of end-stage liver cancer. I really had no pain; nothing but yellow and weakness that told me that my liver was failing and my body was slowly dying. I would go to the clinic every two weeks to get blood work done and I was seeing the doctor every three months. I simply played the waiting game.

In mid-September, I ended up with an infection from working as a nurse in a nursing home. I had E-coli in my blood and had to be rushed to the hospital. They gave me four units of blood, but during the tests they found my all my blood/liver levels were going back up… a lot. On October 13, 2011 I was officially back on the list. This time it was only on the regional list, so I knew my liver would come from a local donor.

A little over one month later, on November 18th, I got the call for my new liver at 7:30 a.m.

They said, “A liver is available do you accept it?”

I said, “Yes!”

“Ok. We need you here by 11 a.m. The donor right now is on life support.”

OMG! You wait and wait for this phone call. But you are prepared to wait, as some say it could take up to five years. Every single time I got a phone call with a 313 area code my heart stopped, but so many times it was just a reminder for a test. This was real.

I had lots of doubts and thought that the transplant would not happen again after the last non-viable liver experience. Then when it actually happened I thought, “This is it!”

It had been almost a year since I first entered the hospital just not feeling well and here I was getting a new liver. It was almost unreal. I got used to being sick, but I had dreamt about this moment. I thought to myself, “My life is going to start again. This is the prayer I have been waiting for.” It reminded me of the song, “He is an on-time God.” I reflected on the year and what I had been through and what my life would be like once I was out of this prison of sickness. I never once thought that it wouldn’t work out. I had faith.

When I came out of surgery, the first thing I looked at was my hands, legs, and nails to check their coloring. I wanted to look at my eyes. I knew it was real, but I was tired. I couldn’t stop looking at my skin color. The possibilities for living seemed so exciting. I had a very easy recovery time with no issues of organ rejection. I was very lucky.

On January 5, 2012, I got a letter from the donor family and found out that my liver donor was a young 23-year old woman. When I saw the word daughter in the note, she became a person and very real. Her life and gift was felt at a much deeper level. There is still more I want to know about her life and what happened. I would love to see a picture, and I want to meet the family, I feel like they are almost like my family now even though I don’t know them. I know our lives are forever intertwined.

If you could go back and tell the Jared before all this happened any advice to help him get through this what would you tell him?

I would tell the old Jared: It doesn’t matter who you meet or what happens. Don’t be so scared. Be friendly — go out and experience life. Life isn’t as hard as you can imagine. It’s silly to be afraid of the unknown. We are all in this together. We are all human and it is up to us to make the most of what we are going to get out of it. We need those human relationships in our lives — the people we know and the people we still have yet to meet. You don’t want to end up as the old cat lady at the end of your life.

I would definitely say value YOU more. To say I love you more… to hug more… to love deeper… to embrace forgiveness, and definitely don’t hold a grudge. We are never guaranteed a tomorrow. If you want to do something — make sure you do it! Don’t put it off until tomorrow. Live. You need to remember that the things that make you feel down or keep you busy are only temporary. This life is not about money or status, or what you have achieved. A lot of that is just paper. You want to be remembered for who you are — not for what is hanging on the wall.

Share