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  • The Member Stories section of our site is a place where members can submit the stories of their experiences as a person living with dysautonomia.  We also link to member stories that have appeared in our newsletter.  Please note that Member Stories are not edited by DINET and the views and beliefs expressed in the articles are strictly the views of the member.   Please note that the stories submitted are reviewed for content and should follow the guidelines of the site.  We do our best to publish each story submitted,  but publication is at DINET's discretion. If you would like to submit your story, please write to webmaster@dinet.org - include "member story" in the subject line. 

Candace’s Story


By Candace
August 2007

My name is Candace. I am 18 years old and was diagnosed with POTS/autonomic dysfunction in November of 2006 at the Mayo Clinic in Rochester, Minnesota.  I hope my story can encourage someone.

I was born on March 9, 1989, along with my twin sister Cassie. We were 10 weeks early and my lungs weren’t fully developed, so I was hospitalized until I was healthy enough to go home and be with my sister. I was generally a healthy child growing up. Around the age of 12, I was diagnosed with severe asthma and was put on medication. My asthma was controlled, and things went smoothly as I entered high school. During my fist year of high school, I was involved in many sports. I was in cheerleading, basketball, volleyball, softball and track. I excelled in sports and academics. I particularly excelled in track, going to the state finals as a freshman in three of my four events. I still can’t believe how much energy I always had. I had two sports practices, homework every night, not to mention games and meets.

Starting in my sophomore year of high school, I decided cheerleading wasn’t for me. I was moved up to the varsity basketball team and was the main hitter on the junior varsity volleyball team. When track started, I was looking forward to another successful season.

About a week after my 16th birthday, I was put on Protonix for my acid reflux. After I was on this medication for about a week, I went into anaphylactic shock and was hospitalized in ICU for 3 days.  This was the time when I believe that I developed POTS/autonomic dysfunction.           
I never fully recovered after my anaphylaxis. My performance in track went downhill and so did my health. Near the end of my track season, during one of my meets, I suffered from a severe asthma attack and had to be taken by ambulance to a nearby hospital. This set me back even further.

Throughout the summer and beginning of my junior year in high school, I was unable to eat like I had previously. Before I got sick, I was a bottomless pit. I was always fit and had never had any problems with my weight. I have always been generally skinny. But as the year went on, I developed chronic nausea and lost my appetite. I didn’t feel well enough to participate in the sports I loved, and so I was unable to play basketball and volleyball. I didn’t understand why I felt sick all the time. Many of my friends and coaches looked down on me for not participating in sports. No one could figure out why I wasn’t the “full-of-energy, athletic girl” I used to be.
Sometime in October, my symptoms started to get worse. The nausea was unbearable. I lost 20 pounds in about two weeks. By this time, I had been to the doctor countless times with no answers. I was then sent to a gastroenterologist who ordered some tests.  When no answers were found, he told me he thought that I had an eating disorder, such as anorexia nervosa, and that all my symptoms were “in my head.” 

My family doctor continued to look for answers. I was sent to every specialist and had every possible test done. Every time I waited for test results, I would pray that they would bring back answers to why I was sick. But every test came back the same; everything was normal, and I still had no answers. 

After so many tests came back with no answers and everyone telling me that it was “in my head,” I got pretty depressed. I felt like I was going crazy. I didn’t understand how I could barely make it through a normal school day, get home, collapse on my bed, and have it all be “in my head.”

After I had been to every specialist and had every test done that the doctors could think of, they started to look for ways to treat my symptoms, since the underlying cause couldn’t be found. I was started on an anti-nausea medication, and I soon started to feel better. By this time, track was starting, and I decided to give it a try. The season started out slow because I was very weak and couldn’t do much, but by the time the regional competition came around, I was ready for it. I had been praying all week that God would let me perform to the best of my ability in all my events.

On my first jump in long jump, I qualified for the state finals. On my second jump, I broke the school record. I ended up taking first place in the long jump and also went to state in the 800 and 400 relays. Both of my relay teams ended up taking 2nd place at the state finals, and we took the all-state title. It’s amazing what God can do with our lives when we least expect it.
After being on the anti-nausea medication for about two months, it stopped working. I was put on another medication, but it didn’t work either. After dealing with chronic symptoms for so long, I started to get used to them. Being nauseated, dizzy, and exhausted every day became “normal.”  During the summer, I got a job at a nearby Bible camp. For this job, I was required to live at the camp. I worked in the kitchen, and I absolutely loved it.

The summer was going great, my symptoms stayed the same, and I learned to live with them. After a month and a half, I started to develop new symptoms. I started to have chest pain, severe nausea, dizziness and weakness. After a Saturday cookout, I was feeling unusually sick and decided to go see the camp medical officer, who was an experienced paramedic. He knew of my medical history and of my symptoms. He decided to check my blood pressure and found that it was extremely high. I was then taken to the local hospital ER where they did some tests, and again, everything came back normal. I was sent back to camp with no answers.

Over the next three days, I grew increasingly worse. I was barely able to walk, could hardly eat, and started to have blurry vision with my high blood pressure. I also developed jaundice. On Wednesday, the camp medical officer sent me to the hospital where he worked. From there, the hospital’s medical director sent me to DeVos Children’s Hospital, where I was hospitalized for 8 days. This was a very scary time for me. The doctors thought that maybe I had a brain tumor and ran tests to look for one. I had many more tests done, all with no answers.
After I was discharged from the hospital, I was sent back to see my family doctor, who in turn sent me to see a cardiologist for my high blood pressure. The cardiologist put me on a beta blocker, which helped with my fast heart rate and high blood pressure. He continued to look for the underlying cause but found nothing. In November 2006, during my senior year in high school, he referred me to a pediatric nephrologist at the Mayo Clinic in Rochester, Minnesota.

On November 19th, my mom, my grandma, and I set out from our home in northern Michigan to make the long drive to Rochester, Minnesota in hopes of finding some answers. I was excited that I might finally get some answers, but after so many tests and doctor visits with no solutions, I was very doubtful.

At the end of my first week at Mayo, I was diagnosed with autonomic dysfunction and POTS. I was also diagnosed with Gilbert’s disease, which explained the jaundice. The doctors told me that, in fact, I wasn’t crazy, and that it wasn’t all “in my head.”  I can’t explain how relieved I was. It was hard realizing that they couldn’t cure me, but just knowing that I did have a known medical condition and that it was treatable was a huge weight lifted off my shoulders.            
One huge blessing for me was that during the summer, when I was hospitalized, I had been planning to go on a mission trip to El Salvador with a group of staff members from the camp. Once I found out that I was going to Mayo, I was concerned that my appointments might be scheduled during or close to the time that I was planning on being in El Salvador.  (Once you are referred to a doctor at the Mayo Clinic, it usually takes a while to get appointments scheduled.) But God had big plans for me. Once I found out that I was going to the Mayo Clinic, it only took a week for them to fit me in for appointments.  After I got back from Mayo, I had about three weeks until I was planning on flying to El Salvador. During these three weeks, I worked on my treatment plan and ended up being well enough to fly to El Salvador for 11 days.

When I was in El Salvador, I did get pretty sick due to dehydration (which for people with autonomic dysfunction and POTS is about the worse state you can be in), but God was still taking care of me. One of the staff members that went on the trip was the camp medical officer, and he was able to give me some IV fluid. Overall, the trip was amazing, and I will never forget it.
At this point, I am a high school graduate and working again at the same Bible camp. I am still pretty sick, but I know God will give me the strength to get better through my treatment plan. I believe that God uses trials in our lives to help us grow in our faith and to make us stronger people. I also believe that God allowed me to go through everything that I went through so that I can use my experience to help other people. In a couple months, I will be starting my paramedic training. I now will have a better understanding of my future patients.

I want to encourage everyone to never give up hope and to always trust God, no matter how dark the future may seem.

*“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11*

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