How do I know this? I tried to think earlier about how many surgeries I’ve had. Immediately off the top of my head, I got to 24. I think there are at least 15 more I can’t remember or when I was too young to remember. If that’s correct, tomorrow is my 40th surgery. That’s in almost 50 years time.

To me, it’s just something I’ve had to do. I’ve never gotten scared. I’ve never even been nervous. It’s just like I’m taking a forced nap. But instead of waking up refreshed, I’ll have a tube sticking out of a place I’d rather not have a tube. I’ll be sore. I’ll be groggy. But I’ll still be here. Forty is a good round number. I think I’ll stop there.

In 1992, my family moved from South Florida to Atlanta, GA. My 8th grade self was NOT happy. I left so many friends behind. I didn’t know anyone in this new place. Fortunately for me and my family we ended up moving next door to the most amazing neighbors, the Feltons. , were special people! (Even though Jethro is just following me and hasn’t subscribed!) They also had two wonderful kids, Brittany and Jay. I was 14, so I became their trusted babysitter and eventual family friend. I got high for the first time with Jethro when I was 16. He took me to a Grateful Dead show and because we were in the top rows, we couldn’t even see the stage. It was just a contact high, I didn’t inhale!

All of this to say that the reason I’m on Substack is because my mom showed me ’s amazing page. Thirtysomething years after babysitting this cute little girl, she grew up to be the amazing woman who introduced me to Substack! She is a wonderful writer, cook and entertainer. You should definitely subscribe! I’m excited to eat the bundt I’m sure she wants to make me to celebrate my 200 subs!

So, thank you Brittany! I hope I had a little influence on you as a neighbor and babysitter, because without Substack (and your push to join) I would have never gotten the confidence to realize I actually could write and my book would never have existed.

PS. Your parents and brother are pretty cool, too.

It has to be replaced every 24 hours. While replacing the tubing I have to clean the ends of the tubing with alcohol, flush the line so it doesn’t clot and while everything is disconnected there’s a chance that I could infect the tubing.

Of course, I can’t do it myself. I’m staying at my parents and my mother is helping me switch out the bag and tube. Everyday we go step by step to make sure we don’t miss anything. One day she opened the wrong end and there was an open hole directly to my vein. Another time I reminded her that she forgot to flush the line.

We weren’t really acting like it was as delicate and important as it was. We were laughing that we missed steps, oops we forgot to do that. It felt like it was just a normal thing like when she was teaching me how to tie my shoes.

This type of thing has been a part of my life that it’s just almost second nature. It’s just something I have to do sometimes. It shouldn’t be so nonchalant. My life is in the balance. It’s not normal, but it has become normalized.

Life revolves around how you treat times like these. Even though it’s really important to do everything right, we can still laugh and joke around. Humor and calmness is a great way to live life, even when it’s supposed to be difficult. Attitude is one of the most important aspects of living a good life. Living life is just living sometimes. Not worrying. Not scared. Just living. It can work. It does work.

I’ve had many bladder surgeries since I was a baby. That could be the cause, but they are still trying to figure that out. I should be going home Monday with IV antibiotics for the next two weeks.

Hopefully, this my last stop for this year. As bad as I feel, I’m not worried at all. I have my faith and I know God has me in His hands. This is the first time I’ve been in the hospital this long and have had no worries.

Of course, prayers or positive vibes would be appreciated. I’ll be back to writing when I’m fully recovered.

I hope you all have a wonderful weekend!

Although I had all those issues, I’d say I had a pretty normal childhood in Coral Springs, FL. I played sports. When playing kickball at school, my friends didn’t hesitate throwing the ball at me to tag me out. I just got right up and kept playing. I played football with my friends and they would just push me down instead of a full on tackle. I was just one of the guys.

I rode my bike 1-2 miles a day to and from school. Sometimes I rode to school and met friends at the bike rack and decide to skip school and ride all around town. I’d go to the bus stop and forget to get on the bus in middle school and my friends and I would go swim at whoever’s house was unoccupied by our parents. I’d get I a fight or two at the bus drop off like any other kid. I got one good punch in. Once.

Sadly, I was even a bully in one grade. Darryl Gold was a whiny kid in class, so I’d pick on him. After a few weeks, his mom called my mom to talk to me about bullying. So the 4 of us met at the car line after school one day. Darryl’s mom wasn’t very happy when she saw that 5’3 tall Darryl was being “bullied” by 3” tall me. I got my comeuppance in Middle School when I got the only bully I ever had for one year.

I didn’t hide from my differences. I used them. I ran for student council in Middle School and all I did was stand on a chair and announce that I’d be a good treasurer as long as the money wasn’t on the top shelf. Everyone knew me because I was so open about being different, my friends never saw me as different.

I learned at a very early age that attitude can get you a long way. I was (and am) funny and self deprecating. If I laugh at myself, people are laughing WITH me, not AT me.

Yes, I spent some time in the hospital as a child, but most of my memories are about just being a child and having fun. The memories from the hospital weren’t pushed back because they were so horrible, because of my attitude they weren’t that bad either. The nurses loved me because I was the only child on an adult floor. They’d let me hangout with them in the nurses station. I was probably a relief from all the sick and moaning adults. Even when I didn’t feel well, I had a smile on my face.

So, just because it sounds like I had a difficult life and childhood, my parents made sure I was treated no different than anyone else. Having that freedom gave me a fun childhood with a few hiccups. That freedom made me happy and positive. I still carry that positivity with me today.

Thanks mom and dad. Even though you made me play baseball with a catheter in so we wouldn’t forfeit the game. Sometimes normal can be tough at times.

I can’t remember the exact time, but one day I was very short of breath. After a few days of getting worse and to the point of not being able to walk 2 feet without having to sit down, I decided to go see the doctor I would see the most at the time. My nephrologist (kidney doctor). When I finally made it to his office, which seemed like 8 hours after stopping so much and barely being able to breathe. The doctor took a chest x-ray. He told me that my lung collapsed and that he would need to jab a needle into my back to re-inflate my lung. He sat me down right in front of my x-ray. After looking at it for a minute, I asked him where the collapsed lung was. He pointed it out.

I couldn’t believe what he was showing me. I had to tell my doctor that I didn’t think my lung collapsed because he was pointing to my spine. I have scoliosis and lordosis which shows my spine curving side to side covering part of my lung. I saved myself from getting jabbed in the back for absolutely no reason, heck it might have messed up my perfectly good lung!

I was then admitted to the hospital and met one of my favorite doctors for the first time, Dr. Heartley, Pulmonologist. The nephrologist who almost jabbed me for no reason was let go not long after.

Now, I’ve been on dialysis at 10 years old. I had surgeries even younger. I had a kidney transplant at 11. But nothing compared to not being able to breathe. Having to catch my breath every 20 seconds was the worst feeling I ever went through. For some reason, when I was admitted, I wasn’t put on oxygen. I couldn’t lay down without gasping for air. I asked my nurse to give me oxygen and she said I didn’t need it because my levels were normal. I tried to explain myself and she said she’ll be back after she talked to the doctor. This was my breaking point. I was alone. The door was closed. I’d never felt anything like this before. I hurt to try to get oxygen. I couldn’t live like this. My doctor almost stabbed me in the back literally an hour ago. I just gave up. I put my bed all the way down so I was laying prone. This is where I would stop breathing. I was 31. I’d lived through enough. I had a wonderful 30th birthday party the year before. I’d lost two close friends from kidney disease just months before this. It was my time.

As soon as I put my bed down and asked God to let me go, my door opened. A nurse opened the door, rushed in and asked why I wasn’t on oxygen. She wasn’t my nurse. I didn’t hit the call button. No alarms were beeping. She just showed up, put me on oxygen and asked if I was ok. As the oxygen filled my lungs I thanked her and she left as soon as she arrived. My nurse came back later and asked how I got the oxygen. I told her what happened and she just said, well I guess she got an order I didn’t get. I ended up with PCP or Pneumocystis pneumonia, which is a fungal lung infection people get when they are immunocompromised. Check off another specialist to see!

I thought nothing at the time. Then in 2022 when I was saved, that instance of my life came back. It wasn’t just some random nurse. I know the protocol of orders and who can give what. God saw that I needed help. He knew I wasn’t a quitter. He sent help. An Angel saved me from quitting. Would I have stopped breathing if I laid down long enough? I doubt it. But, He helped my suffering either way. He has always been there for me. I didn’t even know Him yet, but He knew I would know Him eventually.

Every night before I go to bed I end my prayers thanking God for everything He has done for me and everything He will do for me in the future. Because I know I have a ways to go. I’m glad quitting was only in my vocabulary for one day, because I know I will never feel like giving up ever again!

I was raised in a secular Christian home. We celebrated Christmas and Easter, but only went to church for weddings or funerals. I grew up in south florida and most of my friends were Jewish, so I went to more synagogues than churches in my childhood. I REALLY wanted to be Jewish when I was 13 after all the bar mitzvahs I went to. They are basically a wedding party for yourself. I moved to Georgia in 8th grade and was curious about church and attended a few services. To me the pastors were just telling me how to be a good person. I already had that down, so I stopped going. We never talked about religion in my household. I remember one time in the hospital when I was 10 a Catholic priest came in, prayed over me and put holy water on me. I was laughing because I didn’t know what the heck was going on. Even listening to Christmas songs and singing carols, they were just words. There was no meaning behind them.

The first time I noticed a difference in Christianity, other than how nice everyone was at the churches I would visit, was when Jared’s brother died. Over the week of visiting his family the day I read the news in the paper to Ray’s funeral, I noticed the peace they had as a family. Yes there was complete sadness, but also they knew Ray was in a better place. Then I noticed God in a camp I volunteered for for 30 years. The camp was for kids who had organ transplants like me (I’ll get to that later). Seeing those kids having so much fun and just being kids while knowing exactly what they were living through the rest of their year showed me God’s work.

Over the years when Jared and I would meet up, religion would eventually come up and I would tell him I was looking into this or looking into that. He just said he was glad I was dipping my toes into it. Then we’d just continue our conversation. A friend in college gave me a bible in 1998. I read a little, but it was a lot. I lost it somehow.

When Jared moved back to Georgia after living in Kentucky I would go and watch him preach every once in a while. I’ve been to at least one service at each of his churches, but never stuck around. At least I was dipping my toes in. This reminds me of Acts 17:27-28:

so that they should seek the Lord, in the hope that they might grope for Him and find Him, though He is not far from each one of us; 

for in Him we live and move and have our being, as also some of your own poets have said, ‘For we are also His offspring.’

Then everything changed for me in 2020. I was alone for nine months. Literally. I got stuck in many rabbit holes online. Conspiracy theories. Qanon. Most of those people were talking about the New World Order. Most of it was a little crazy, but they were actually also mostly Christian and relying on God to fix the world. I read Mere Christianity. I read a book called The Story (basically the Bible in novel form). 

In January of 2021 I decided to visit Jared’s new church, The Gathering. Instead of bailing the next week, I went back. Then I went back again. That February the church did a Daniel Fast. I was not excited about that prospect because of my diet, but I did it. I was in. I actually did the Daniel Fast for 28 days. I couldn’t do that by myself. I didn’t do that by myself. God helped me do that. I was changed. The following year on Easter I was saved. That’s when my eyes were opened. God was always there for me. I didn’t know Him, but He knew me. He got me through decades of illnesses.

I was born with kidney disease. I have had 4 kidney transplants. I’ve been on dialysis. I’ve had 50+ surgeries. I have PC Pneumonia (fungus in my lungs). I have bad hips and a bad back. I have lived through being different. I have lived through loneliness. I didn’t know God through most of that. But as Isaiah 45:5 says, 

“I am the Lord, and there is no other;

 apart from me there is no God.

I will strengthen you,

though you have not acknowledged me

Although I didn't know Him or know what He did for me, He was always there. I had people praying for me, people had sent me prayer blankets, but I was oblivious. He didn’t care about that. He loved me through it all. My life has changed completely since Easter of 2022. I am happier. I don’t deal with stress like I used to. I was sick for 6 weeks in December and January and I was as content as one could be during such hardships. I am good now. I am whole. God is Good.

For those who don’t know, dialysis is what you have to do when your kidneys fail. Your kidneys not only flush toxins out of your body, but they also move fluid into your bladder and outside the body. People who are on hemodialysis, like I was, are connected to a machine for 4-5 hours a day for 3 days a week. The blood is sucked out, goes through the dialysis machine and goes back in your body. How are you hooked up you ask? Through either a port in your chest or most likely through two very large needles jammed in your arm. To do this, you need to either have a fistula (where they connect a vein to an artery for better blood flow) or a graft (a piece of cow intestine? to connect the flow). I’ve had both. Although dialysis is doing the work of your kidneys, it’s not constant. Because of that there’s a strict diet and a limited amount of fluids you can have. On the days you’re not dialyzing toxins fill up in your blood and fluids stay in your body (I didn’t pee for 10 months). You’re constantly fatigued and sick.

I first started dialysis when I was 10. My graft was put in my right forearm. Because of the extra blood flow, you can actually feel what’s called the “thrill”. My 4th grade self couldn’t help but ask all the girls in my class to feel my wrist. Not expecting anything, they would usually screech and jump back after touching my arm. Then everyone in class would be curious and want to feel the thrill. Fortunately, I was only on dialysis for a few months as a child, but you can still see the marks from the litocane shots that I asked for to numb me up before the big needle went in. It only helped 50% of the time.

I then received my mom’s kidney and didn’t need dialysis anymore. As her kidney failed after 7 years, my amazing doctors at Egleston Children’s Hospital got me my dad’s kidney ready before I had to go back on dialysis. My dad’s kidney lasted through the first 4 years of college.

In January of 1999 just before school started I got really sick. It turned out I was in kidney failure. I immediately had to go back on dialysis. It was so quick, they had to put a port in my neck because my creatinine was 17 (it’s supposed to be between 0.5-2.

I was on dialysis for 10 months that year. I had 2 grafts put in. The first one in my left forearm clotted before they could use it. They put a second one in my upper arm. It worked fine. By then I was over the litocane and just got my two needles 3 days a week. I ended up dropping out of school and moving back in with my parents at 25. Those 10 months were my fault and I suffered for it. I didn’t take care of myself in college and just tried to be as “normal” as I could. I drank way too much alcohol and would forget to take my medication more times than I’d like to admit.

I received my brother’s kidney in October of 1999. I had learned my lesson. I was a great patient and kept up with everything I was supposed to. I lived my life. I enjoyed my life. Sadly, transplants aren’t a cure and no matter what you do, your body attacks any foreign object in your body. The medicine transplant recipients take just slow down that process. In January of 2015 my brother’s kidney failed. It was a nice 15 year run.

I started dialysis again. I didn’t have anymore donors lined up, so I didn’t know how long I’d be doing it this time. People got tested, but no one seemed to match. Then after 13 months of waiting, I got my Angel Donor’s kidney. That’s a story for another time.

During those days on dialysis I could have just quit living and just survived. That what it seemed like the other patients in the clinic were doing. Dialysis centers are sad. Rows of people just lying there. Sleeping. Moaning. Miserable. I wouldn’t do that. I couldn’t do that. I came in and said hello to everyone. I became friends with the techs. In 1999 I even went to a baseball game with one of my techs. I try to liven up any room I can, especially rooms like that.

Just because you have to live through difficult times, doesn’t mean you have to suffer while you’re “suffering”. Attitude has been my guide throughout my life. I’m truly grateful that my parents instilled that in me at a young age.

Live your live to the best of your ability and try to do it with a smile on your face as much as possible!

This specific scar is from knee surgery. Because my hips are dislocated my left knee wore down over time. The first time my knee cap popped out of place I was 15 and playing tennis with my brother. After 20 seconds it went back into place. A year or two later, I was walking into my room and it just popped out again. It went back in. Over the years it went out while I was sleeping in bed. Just lying down watching TV.

The 10th and 11th time it was the day of my friend’s wedding day. Hours before the wedding I was standing on the beach and my knee went out. It didn’t go back into place. I was leaning against a beach chair swearing like crazy and yelling for what seemed like an hour.

A few “minutes” later, the ambulance showed up and lightly put me on the stretcher. They immediately hooked me up to a tank of “laughing gas” to calm me down. My kneecap was still out, every bump hurt. While in the ER, maybe an hour later, my kneecap slid back in by itself. I left and made it to the wedding with a very long bandage around my leg.

During the reception dinner, I moved my leg and BAM, kneecap went out again. Wouldn’t go back in. The ambulance came back. Same truck, same EMTs. They never replaced the tank I used up. Nothing to calm me down for this ambulance ride. I REALLY felt every bump. Because the last hospital didn’t really “help”, I asked to go to another hospital.

They actually had to place my kneecap themselves this time. For the next two months while I waited for my kneecap went surgery I slept with a t shirt between my knees. Hoping it wouldn’t happen again. I was scared to do much physically because I thought it would happen again.

After so many surgeries, this knee surgery was the worst experience I’ve ever had. When I woke up I was fully drugged and tried to keep on top of the schedule. I knew it was getting close to when I needed another push of drugs, so I called my nurse. She ran late. I was in excruciating pain for at least 2 hours before I just passed out and fell asleep.

Fortunately, physical therapy was easy for me. I did what I was supposed to do. After 6 weeks of living in a rehab community, I was home and “back to normal”.

I’m glad that I can see this scar every day. It reminds me what I overcame that had nothing to do with my kidney disease. If I’m sick or feeling down, I see this scar and realize that things could be much worse.

I’m proud of myself that I lived through those things. Each battle made me stronger. Physical pain feels like it’s never going to end in the moment, but in the future that pain was just a percent of a percent of your life. You can get through anything if you get through that pain.

Then in 2015, my brother’s kidney failed after 15 years. I was really sick. I had to go back on dialysis. I didn’t have anyone who could donate a kidney like my brother, mother and father. I heard that people got tested, but it never worked out. I was slowly dying, but I was too sick to Live Like I Was Dying. Every time I saw my transplant doctors I’d ask why it was taking so long. Then on February 23, 2015 I got the call. I was watching tv after getting home from dialysis and my phone rang. “Would you like to come get a kidney today?” My answer was, “I guess I have some time. When should I get there?”

The next day I received my 4th kidney from my Angel Donor in California. I don’t know anything about her, but it slipped that she was a “young” woman from California. This took me awhile to get over. My first three donors were still alive. They were living great lives. This donor had to die to give me my FIFTH chance at life. That changed everything for me. Not only did I have to live like I was dying, I wanted to live because someone else died for me to live.

In June of 2016 I turned 40. I drove to NYC to celebrate with my cousins and go see the Mets play at home. For two years, I was living my life again. More complacency. Soon after that trip, I got sick again. I got CMV. It’s a virus that you can get from a donor’s organ and if you don’t already have it, it can kill you if you don’t catch it in time. They obviously caught it and it’s always being watched.

In 2019, I decided I wanted to honor my donor and teach people the need for organ donors. So I scooted 1,515 miles from Miami Beach, FL to Nashville, TN. I was definitely living like I was dying on that trip.

Then 2020 hit. No explanation needed. But for me it was a living hell. I was stuck in my house for 9 months straight. The only people I was in personal contact with were the doctors and nurses I saw for checkups once a month. Everyone else was on a computer screen. I am a people person. It broke me. I felt like I was dying while I was “living”. At the end of the 9 months I had a 2 day panic attack and it took two years to balance myself out. My life had changed forever. Things got better. I got Cheddar. I got a great roommate. I got complacent again!

In December of 2025 I got sick again. First bad illness since I dealt with since CMV. I got a UTI and was in the hospital for 5 days. I was released with a PICC line to go home and do a daily infusion for 4 weeks. Three weeks into that schedule, I got sick AGAIN. A new bacteria grew and I had a second UTI. Five more days in the hospital. They put me on more powerful antibiotics. This batch was rough. Three of those days in the hospital felt like 3 weeks. I couldn't eat, I couldn’t drink, I could barely walk. After I asked for a different antibiotic, things got better. I was released again with the same PICC line for two more weeks of new antibiotics. I finished that round on January 28th.

I’m finally feeling “normal” again. I’m truly ready to live my anthem. No more complacency. I’m going to enjoy the small things. I’m going to enjoy the big things. I’m going to always Live Like I Am Dying, because you never know when you’ll get knocked down again!

From birth to 11-years-old I was on a few medications to keep my low kidney function stable. I had to take sodium bicarbonate, potassium and who knows what else (that was 40 years ago!).

Then the fun really started and I had my first transplant in 1987. Now I was on Prednisone, a steroid, Cyclosporine, an immunosuppressant and a few others due to side effects. To this day, I have never stopped the Prednisone because after a few years it takes over the job of your adrenal gland and according to a nurse friend of mine, “I would die a slow horrible death if I stopped it now”.

Over the past 40 years I’ve added some medications, blood pressure, cholesterol, stomach issues and updated immunosuppressants. I take 25 pills per day, everyday. I’m worried what they’re doing to the chemistry in my body. My doctors don’t know any other patients who have been on as many medications for such an extended period of time. One ER doctor told me he was surprised that I’m not diabetic because I’ve been on Prednisone for so long.

Over the past year I’ve been worried about how they’ve affected my brain. I can’t think of basic words when I’m having a conversation. My memory seems to be shot at times, but then I remember the most random things in the world.

The past two weeks I’ve felt like I’m walking through a haze. I can’t concentrate. I can’t focus. I feel like I can’t communicate like I used to. I really didn’t like my last post. I KNOW I can write better than that.

I just hope things clear up and I can have better confidence in myself once these antibiotics are finished. I have an autobiography to write!

Drugs are bad kids, don’t start the habit!

I remember the time that my dad told me that I needed a kidney transplant when I was 10-years-old. We were in the yard and he just asked me if I would want a new kidney and I asked if it would make me feel better. When he said yes, I said yes. Then I went back to what I was doing in the yard.

Then when my second kidney failed, I was in college and I actually was going to work and my supervisor told me that I didn’t look good. I said I had to work, I was on the schedule. She sent me to the nurse and I ended up in an ambulance and an hour later I was being driven from Rome, Georgia to Atlanta because my kidney has failed and my creatinine was 15. It was supposed to be between 0.5 and 2. I was dying and I just thought I had the flu.

When my third kidney failed I remember going into the doctor and she started to give me the her usual talk about your kidneys failing and that they were going have to put me on dialysis but I knew what she was about to say so I stopped her before she continued. I told her, yes I know I need dialysis and let’s start tomorrow. She thanked me because the worst part her job was telling patients their kidney failed. I took that pain from her of telling me the bad news.

I’ve also had issues with a PCP, which is basically fungus in my lungs and I went to the doctor because I couldn’t breathe. During that hospital stay was the only time that I ever quit for because not breathing is the scariest thing that you can live through. Barely breathing, I put my head down thinking that I would stop breathing while laying flat. Not very courageous! At that moment a nurse came in and asked why I wasn’t on oxygen. I believe she was an angel, because I never saw her again. She wasn’t my nurse.

Now at the end of one year and preparing for a new year, I’m recovering from sepsis with a PICC line in for a month. A daily infusion of antibiotics every day for 30 days. It’s just another month in my life.

If other people think I’m courageous, I appreciate that they can see what I live through, but I think it’s survival and you gotta do what you gotta do.

I’m not writing this to complain. It’s just life. As tough as last week was, I was shown how much I’m truly loved. My church prayed for me daily. My elderly parents helped me when I couldn’t help myself. People brought me “real food” daily so I could avoid the hospital menu. It all also made me appreciate my life that much more.

I’ve had a lot of friends who didn’t have as many Christmases as I’ve had. For me, Christmas stopped being about presents and started becoming about living. It’s 10:30 and I haven’t opened one gift. I don’t need anymore gifts. I have God, Cheddar, my family and my friends. I’m going to be ok.

I hope everyone has a wonderful day today and enjoys whatever their day brings them. Find the joy in the little things. Even if life gets tough.

My dad grew up playing sports, so as a child, I did too. Part of my parents raising me as normal as a child with chronic illness as they could. I was short, had both hips dislocated, no frontal abdominal muscles and other issues, but that never stopped me.

My 4th grade teacher recently told me that when the PE teacher brought back the class from a run, I wasn’t there. When she asked the teacher where I was he said I was still running to complete what the rest of my class had already finished and I’ll be back when I finished.

Because of my stature, my dad would actually “fix up” my birth certificate so I could play against kids my own size to have a better chance of competing. I dominated those 6-year-olds when I was 8 in basketball.

In baseball, my dad was usually my coach and my younger brother was usually a teammate. One time, I had a catheter in my bladder after a procedure. I went to go watch my team play from the bleachers. It turned out that we didn’t have enough players and we were going to have to take a loss. My dad wouldn’t have it and put me on the field so we could play the game. He told me to just stand out in the field to have a full team. Of course, I’m too competitive to just stand there. I saw a good pitch and swung. When I got to first base our first base coach told me my catheter was hanging out of my pant leg. After we finished the game, I went back to the doctor to get a new catheter.

Then in 1991 when we moved to Georgia and I heard about Camp Independence, I also heard about the US Transplant Games. They are basically Olympics for transplant recipients. I’ve had a few articles written about me in the paper about a few of those games. Every two years Team Georgia would travel to different cities in the country and compete in events just like the regular Olympics. We went to LA, Salt Lake City, Pittsburgh, Houston and other places on even years.

I ended up winning 4 medals throughout 1991-2014. Silver in tennis, silver and bronze in badminton and a bronze in table tennis. My dad couldn’t “fix” my birth certificate for those games, so I was usually playing guys twice my size.

Even though I have had medical issues, I’ve never had any quit in me. From being dead last in races in elementary school to winning medals in my teens and 20s, I always fought my hardest. That’s why I’m still here today. I’ve never had quit in my vocabulary. I’m always running to the next finish line.

I don’t know how she did it! She’s truly amazing. Even when she has gone through her own medical issues, she was still worried about me.

I know I got my strength (and patience) from my mom.

Thank you for always being there mom. I’m always here for you now, whenever you need.

Little did I know, his story would inspire me to try my own journey to help others.

As I shared in a previous story, I was born with bilateral hip dysplasia. Basically both hips are dis located. I was finally able to learn how to walk, but was never able to get my hips “fixed”. Around 2015 I started noticing that after I would walk long distances that my hips would hurt. I went to an orthopedic doctor to ask if he could help fix my hips. He basically said it would be such a difficult surgery, that it should be a last resort if I couldn’t walk anymore or deal with the pain.

So I decided to start using a mobility scooter for long distances. Baseball stadiums, large event centers and even giant stores like Wal-Mart. But I was embarrassed. I worked hard to get where I was. As independent as I could be. Then one day, Terry’s story popped into my mind. He had lost a leg and kept on going. Not only that, he attempted to RUN across Canada. He wasn’t embarrassed that he needed a prosthetic. I shouldn’t have been embarrassed to need a scooter. I didn’t even need to use it every day. One that day an idea was born. Scooting4Donors.

I planned for a few years. I contacted Donate Life America, LifeLink and The National Kidney Foundation. My plan was to scoot across the country and raise awareness about the need for organ donors. I went to hotel companies. I went to Nike. I even went to Waffle House to try to find sponsors. No one would help me. It was too much of a liability. What if something happened to me on the side of the road.

I reached out to a company that sold specialized mobility scooters. They sold me a scooter for no profit. Trikaroo was my first help. Then I started fundraising. I raised $10,000 for my trip. I drew out a route from Miami (where my first transplant was) to San Francisco, CA. It was going to take 6 months and 5543.7 miles. I had hospital stops on my route so I could get my monthly bloodwork. I had a good friend, Trey, who was 20 and had time because he was between jobs.

So on the last day of March, Trey and I headed to Miami Beach. On April 1, 2019, I began scooting. My first stop was Jackson Memorial Hospital. Obviously, none of my doctors were still there, but the transplant center wished me luck. I continued to Coral Springs, where I grew up to stop the first night. After 35 miles and 4 hours on the road, I KNEW I could do this. Trey would usually sleep in a bit while I scooted on bike lanes throughout Florida. In a few places I was able to get a police escort. A week and 6 stops later I stayed at a friend’s house for a few days in Tampa. Trikaroo was located in Tampa and had a gift for me. A top to keep me a bit cooler and more visible.

Then I went back east through Orlando, the Daytona and north through Jacksonville. From there I headed north to Savannah where my parents lived at the time. I took an extended break for a few days. Georgia didn’t have the bike lanes like Florida did, so it was quite as easy. From Savannah I went to Augusta to see my favorite doctor who helped me through my 3rd kidney. Then I went west towards Atlanta stopping at Camp Twin Lakes on the way. Then while in Atlanta I stopped at CHOA, Emory and Piedmont where I had my last three transplants. I ended up at home in Alpharetta on May 11th and took a break. I’d scooted on dirt, side roads and even the beach. I felt ready to conquer the country. I was on the news for a few of my stops, but I wasn’t getting many donations to keep going, but I knew people would eventually notice and I’d be able to finish my quest.

Unfortunately, Trey couldn’t go anymore and I needed a new follower. Another friend from camp, also young and with time to spare said he’d follow me to Texas. So on June 6th, Pierce and I were heading north. The plan was to go to Nashville and then head west to Dallas where I was born. After 6 days of traveling, we ran out of funds. We had to turn around and regroup. I had planned on doing more fundraising and sharing my experience from the previous month to show people I could actually do it and start again in 2020. Then we all know what happened.

It took me awhile to get over the fact that I failed my original plan. But I realized I hadn’t failed at all. I drove a mobility scooter 12 mph for 1,515 miles. Ten people registered to become organ donors on my lifelink page.

When I started my trip, no one really believed I could do it, but I believed in myself. I may not have completed my trip, but neither did Terry. But Terry is now one of Canada’s national heroes. He inspired me to overcome me needing a mobility scooter and not only that, but showing thousands of people that I don’t care that I need wheels to get around.

After I started volunteering at Independence, I started volunteering at Camp Second Chance. Also at Camp Twin Lakes, 2nd Chance was a weekend camp for families with children who had any type of transplant (kidney, liver, heart and lungs). The kids brought their entire families for 3 days and not only did they enjoy regular camp activities, but there were also break out sessions for the parents to learn various subjects relating to the children’s healthcare. Mediations, insurance, mental health and really anything you could think of.

The families stayed in cabins in groups and the entire camp basically became one giant family. Just like me talking to kids my age who knew what I had been dealing with, these parents could share their stories with other parents who might have seen things differently. It was a magical weekend.

Not only did I help with the kids, but I was able to share my experiences as child growing up with chronic illness to assure the parents that their kids would turn out ok. A lot of families would come every year and become a tight knit group and become more comfortable with me and basically ask me anything. I was in high school and college early on, so I was able to relieve some parents’ worries on how far their child may make it in life.

Not much longer after 2nd Chance started, they started Teen Camp, as well. It was also a weekend camp, but was arranged like Independence. Group of kids in a cabin with counselors. Not only did we do camp activities, but we also had educational sessions so the teens could learn many things. Mainly starting to get them ready early for when they would finally leave their parents and live on their own. They learned about all their meditations, getting a job and moving from a children’s hospital to a dreaded adult hospital! I feel like I was helpful with that group because I had nothing like that growing up. Because I had my first transplant in an adult hospital, my doctors talked to me like an adult and made sure I understood my medications before I left. I’m glad they did that.

Then after a few years after I’d been volunteering at Independence, I got a chance to volunteer at a brand new camp in North Carolina. When I was a camper at Independence, they would bus a group of kids down from NC to join our camp. That started in 1992. By 2000, NC had enough funds and interest to create their own camp in Flat Rock, NC, just south of Asheville. Some of “my kids” were from that area, so of course I wasn’t going to abandon them. So, from 2000-2010 I drove up to NC to do a second camp every year. It too was an amazing group of kids. I usually stayed with the same age (8-10) every year. I even helped change the name from Kidney Kamp to Camp Wi-Wana-Wi Unfortunately, it shut down after 2010 because they ran out of funds.

Further down the line I heard about another camp. I graduated from Berry College in 2002 with a degree in broadcasting. During my senior year one of my professors said someone called looking for a student who might be interested in making a video for a summer camp at Camp Twin Lakes. He heard about me volunteering, so he went straight to me to ask if I was interested. Of course I was.

That’s when I was introduced to Camp Braveheart. It was a camp for kids with any heart disorders including a few heart transplant kids. I recorded and edited a video yearbook for those kids for 4 years. When the video idea ran its course, of course I continued volunteering as a counselor. I followed a group of kids like I did at independence until they graduated.

At one point for a few years I was volunteering 3 weeks a summer and a few weekends in the spring and fall. It was my purpose. It was where I was needed and wanted. Those were the most defining years in my life. Volunteering from 1995-2020 showed me that giving back is a reward that pays 100x more than money. Volunteer when you can. Volunteer however small it is. It’s a life changer.

Then, when I was 13 my family moved from South Florida to the suburbs of Atlanta. With in a few weeks, of course, I ended up sick and needed to be hospitalized. I was taken to something I never could have imagined. A hospital made for kids! Vibrant colors. Game rooms. OTHER KIDS. It was amazing!

That wasn’t even the best part of the story. During my stay, the head nurse asked if I’d ever been to a camp. I’d camped with my dad and brother when we were in Indian Guides in Florida, but never went to a camp by myself.

That summer, my first week at Camp Independence, a camp for kids with kidney disease and kidney transplants, changed my life forever. There were kids my age who went through the same things I had. I wasn’t the only kid in the room with scars. I wasn’t the only kid in the room that looked a little “different”. I found a place I truly belonged.

I was a camper for 4 years. The first two years were at Fort Yargo Park in Gwinnett County. There was much at the camp, but just being there was amazing. Then everything changed again in 1993. Camp Twin Lakes opened.

CTL is a camp ground specifically made for children with chronic illnesses. Cancer, diabetes, intellectual disabilities, mobility issues. Anything you can think of. The first year it opened, Camp Independence was one of (I think) 12 camps that went one week each summer. Now there are 30+ camps that go year round.

They had horse riding, archery, a ropes course, boating and almost anything else you can think of. Those 4 years as a camper helped me grow a lot. The volunteers were amazing. When I aged out, I started volunteering immediately. I was a counselor for a long time. I felt it was good for the kids to see an adult who knew exactly what they went through.

I followed one group of the same kids for 10 years. I felt like they were MY kids for that week. I still talk to most of them today now that they’re in their 30s (I’m so old). After they graduated, I moved on to help with activities and a leadership roll helping other counselors.

After a total of 29 years I had to stop going. That’s a different story. Those 29 years were where I was the best version of myself. Watching those kids grow up was an amazing experience. Even though I was volunteering to help them, they gave much more to me than I gave to them. They had the childhood I missed out on. For at least one week a year, they weren’t “different”. They were with their true peers.