Ron’s Story
My name is Ron Carpenter, and this is my story of living with an inborn error of metabolism (IEM) called PAH deficiency (formerly called PKU). The Community Health Clinic plays a critical role in helping me and my wife manage and treat my condition.
Although it was July and she was due in September, Mom didn’t feel well. The day before wasn’t so swift either. So Dad took my Sister to Mom’s parents and took Mom to the hospital. Several hours later a son was born. After he was born the doctor told my Mom the words she would never forget, “you’re not done”. Thirteen minutes later I was born. Mom, Dad and the doctors didn’t know I was there before that. So they had to give Mom a shot for shock. That day of great surprise was July 22, 1963.
Being born two months prematurely, my Brother and I were rather small. My Brother weighed 3 pounds 8 ounces. I weighed only 2 pounds 12 ounces. My Brother was dubbed “Baby A” by virtue of being born first. Logically, I was “Baby B”. It was generally thought that Baby B would not survive the first night. By the Lord’s mercy, I did.
We spent a long time in the hospital. My Brother got released a few weeks before I did. After a few months at home, Mom began to see signs that we weren’t developing motor skills correctly. After much convincing, our doctor ran tests on us and found that we both have Phenylketonuria (or PKU, which is now known as PAH deficiency). My brother and I were 6 months old when we were diagnosed with PKU. There wasn’t newborn screening for PKU in the state of Indiana when we were born.
We were sent to the University of Michigan for treatment. At that time Indiana didn’t have people skilled with PKU to help us. Thankfully Michigan did. I remember cognitive skills tests and EEG’s and reflex testing. Mom diligently administered our diet. She weighed and tracked our intakes. When we turned 4 the health team at Michigan said our brains were mature enough that we could be removed from the diet. Mom objected, but they prevailed. On the way home my Brother and I celebrated with Hamburgers and French Fries. Mom watched us carefully but we seemed okay. Each weekday at noon Dad would come home for lunch. We would go running out to meet him. He would always ask us, “which way is up?” I think that was his way of checking our cognitive abilities.
My parents were told that my Brother would not have the mental capacity to finish High School. Of me they said I wouldn’t make it through Elementary School. We did well in Elementary School for the most part. We both struggled with reading comprehension but, as we got older, we got better at comprehending. By 7th grade we were free from special reading classes and in with the mainstream students. Our reading skills continued to improve. By the start of High School, I was reading College level material.
Mom and Dad treated us as if we were fine. We thought we were. In High School we did well in most classes getting A’s & B’s. We really struggled with Algebra. If it hadn’t been for the help of our Sister, we both would have failed. My Brother made it on to National Honor Society. I wanted to have more fun, so I didn’t apply myself as well as I should have and didn’t make the Honor Society.
Once every year or two a team from the University of Michigan would come to our nearby town and test our PHE level. They never said that it was off. When we turned 18 they did our test and said that was the last one. They said, “if you have any problems let us know”. We had no idea what sort of problems that would be. They didn’t elaborate. I’m not sure they knew either.
After High School my Brother and I both worked for our Dad and our Uncle at a Feed Mill. We took grain and other ingredients and mixed them together for the animals to eat. It was very hard work. I had been injured at the Mill when I was 12 and wound up losing my left leg. Soon the work got too hard for me. I was also experiencing panic attacks and unreasonable fears about the trucks I would drive, about equipment breakdowns and having to run things by myself when everyone else was hauling product or running errands. I didn’t realize this was unusual behavior but I knew I didn’t like it.
Since the work was so hard (and I was so scared of the equipment, which I never told anyone directly) I decided to go off to College. I went to International Business College in Fort Wayne, Indiana. I got a 2 year Accounting degree in 10 months. I studied hard. I was blessed with only 1 B- and the rest A’s. I had a 3.977 GPA out of 4. I was considered for the top Accounting Student, but didn’t quite make it. I was nominated and listed in the National Dean’s List in 1987. And I thought I was fine.
My first job out of College was Accounting for an Insurance Agency. I had all that education and no idea how to apply it. My boss had no time to train me. I became frustrated. In the Spring of 1988 a job opened up in Accounting at a local bank (they owned the Insurance Agency I was working for). I applied and got accepted. It was great fun. The Human Resources department said I worked too slowly. I thought I got my work done so I didn’t concern myself with that. Our department was all young and we were like brothers and sisters. The late 1980’s were a volatile time in the Banking Industry. Our bank was bought out 3 times while I worked there. In 1990 they sent all the Accounting function to a bigger town. I didn’t want to drive that far. Most of the others didn’t either. So I was without a job.
I took a job at a CPA’s office. They had me doing Corporate and Fiduciary Taxes. I had no clue what I was doing and they had no time to show me. After Tax Season I left there as fast as I could. After that I worked as a full charge Bookkeeper for a Livestock Trailer manufacturer. That job went fairly well, but I started to get stressed out. I took anxiety medication for a short time. Soon an Accounting job opened up at a Nursing Home. I was able to get that job. I struggled again. My boss was nice and helpful. Then they changed my boss. My new boss was a young lady just a little older than me. She wasn’t too fond of the way I worked. Soon I found myself meeting with Human Resources. They gave me a warning that if I didn’t speed up in a month or so they would fire me. I knew the firing would damage my resume. So I prayed for a new job.
Soon I got an offer from a Feed Mill. They wanted me to be an Invoicing Clerk. I said I was slow but accurate. They said that was fine with them. I worked there for 10 years. They were good years. The job ended rather sadly. I went to get fitted for a new artificial leg and when I got back they said they could no longer use me.
My new leg had a computer in it to help me walk better. I was very concerned about getting the computer wet, dirty or too cold. So much to worry about and so little time. By now my emotions pretty much didn’t exist.
For two years I struggled. I tried to work on my own as a Videographer, Graphic Artist and Computer Repairman. I applied for several jobs but the interviewers felt I was overqualified. One job I applied for was at a High School doing computer repair. I didn’t make it.
In 2008 things began to change. In February the computer repair position opened again. I applied for the job and got it. Now I was repairing computers at the same High School I graduated from. A few of the teachers I had as a student were still there. It was amazing since I had graduated 36 years prior. It was hard to call them by their first name instead of Mr or Mrs.
Another change in 2008 was a friend introduced me to a lady. I’d tried dating a few times. I always got dumped on the third date. This lady and I emailed back and forth from January through March. Then she sent me the dreaded email “what are your intentions”. I thought “what shall I do?” Knowing honesty to be the best policy I replied, “I’m looking for a relationship”. I knew that was a make-or-break answer, but I had to respond honestly. I awaited her reply. Soon she emailed back and we set up a meeting time and place. She was very nice and cute. She seemed some younger than me but not a lot. I felt comfortable with her which I had never experienced on a date before. She is also missing her left leg, like I am. I asked her out again. She said “yes”. We went out 3 days that first week. Our relationship bloomed. In June I took her to my family reunion. On July 13th I proposed and she accepted. Towards the end of July she took me to her family reunion. We also started looking for a house. In September we found a cute little house in a quiet neighborhood. I moved in to take care of it on September 20, 2008. On April 4, 2009 we were married.
It was fun working at the High School. I loved the work. The people were really nice. I made it my goal to fix the equipment and help them when they didn’t understand things. My thought was “even if your computer’s problem is that it isn’t plugged in, I’m going to treat you with kindness and respect.” I had the month of July off each year. In July 2014 I received word that my job would be ending at Christmas break. In January 2015 I got my current job. I work at World Missionary Press getting Scripture booklets ready to be uploaded to the internet. I love my work and my coworkers. We are like family.
A month after our wedding we found my Dad had pancreatic cancer. He died in July 2009. I didn’t grieve properly but took it rather matter-of-fact. Mom lived on. On January 2, 2016 she contracted C-Diff. She got it 4 more times before it overpowered her on July 13, 2017. I loved Mom dearly but I couldn’t grieve properly. The day after her funeral my Wife’s Grandma Died. Silly as it sounds, in September 2017 my Wife’s car was ruled unsafe to drive and we sold it for scrap. That was the last straw.
I went into anxiety and panic attacks. My Doctor prescribed medication. As we went along, I noticed a trend. Anything he gave me would work for a few days and then I’d be back to the same place. I got counseling. It helped me know how to deal with some things but it really didn’t help the anxiety and panic. I began to wonder, is it PKU?
I wondered during the Spring of 2019. As time went on I was convinced by what I was reading online and seeing in my life that it must be PKU. During the Summer I savored whatever food I had. I felt that before long my diet would be restricted. In September 2019 I had my PHE level tested. It was 870. I knew what I had to eliminate. My Wife was very willing to help. We eliminated meat from my diet and I ate low protein foods as my family doctor searched to find me the proper help.
I went online and learned about The Community Health Clinic in Topeka, Indiana. I came to a meeting at the CHC in October of 2019. We did a blood draw and they took me on as a patient. By altering my diet, my PHE level was down to 602. I started out on formula in November 2019. We were able to get samples to try right away. In early December 2019 I was able to get on Kuvan. By January 2020 my PHE level was 598. My Wife manages my diet. She is very diligent and detailed. We track things very closely and I only eat what she calculates meets my needs for the day. On April 2, 2020 I braved the COVID pandemic and got my blood draw. My PHE level was down to 198. We had hoped I could get it down to 360. It has remained in that 200 range.
Many people that know me have told me that they see a great change in me. I’m more connected to their conversation and more animated.
I am so thankful to the Staff of the Clinic and my Wife for all their hard work. I feel better now than I ever remember feeling. My panic and anxiety has reduced a lot. I’m happier, more alert, more energetic and more able to focus. It is such a blessing!