Katie Petersen: My Journey through the Medical Odyssey.

My medical problems started around age 16 when I went to my pediatrician with complaints of a rapid heart rate that got extremely high with exercise and any type of physical activity which often caused chest pain, and limited me from being active. Up until then I was an overall healthy kid. My pediatrician then referred me to Herma Heart Center at Children’s hospital of Wisconsin. There i began testing to find the cause of my rapid heart rate. Some of the testing included a 1 month cardiac Holter event monitor, blood work, EKG’s, and a stress test. The Holter Monitor did indeed show that I was having events of very rapid heart rates, but we still needed to figure out why, this led to blood work to see if anemia could have been causing the rapid HR. Blood work came back and I was in fact iron deficient so I was also referred to the adolescent medicine clinic at CHW with the belief that my low iron levels was due to severe blood loss from my menstrual periods. So now we had 2 unanswered medical problems.

What was causing the rapid heart rate?

and

Why did I have such severe menstrual cycles?

For the rapid heart rate we continued testing, all my EKG’s came back normal, so next was a cardiac stress test. While hooked up to all the wires and monitors I began to run my stress test on the treadmill, sure enough my heart rate sky rocketed, and I began to become out of breath with what I thought was just one of my typical asthma attacks. (I had been diagnosed with exercise induced asthma for years, and had been on many different inhalers to treat my asthma attacks that were brought on by exercise, none of which seemed to work.) Anyways as I began to get out of breath and gasp for air I told all the doctors around me I was having an asthma attack, and they all looked at each other and said “that’s not an asthma attack?” With so much chest pain and so short of breath they ended the stress test immediately. Next they told us that what I was having wasn’t an asthma attack, so for years what I had been treating with countless inhalers and steroids which were in fact not working because it wasn’t an asthma attack, I now found out I had something called vocal cord dysfunction… Now we have two new issues, and no answers to the rapid heart rate.

With the new diagnoses of Vocal cord dysfunction I was referred to an ENT, Pulmonologist, and speech therapist. Here I received many more tests including a laryngoscopy, pulmonary function tests, and many more. The speech therapist helped with teaching me new breathing techniques and coping with my vocal cord dysfunction.

Back in the Adolescent medicine clinic i went through another slew of medical tests to find the answers to why I was having such painful and heavy menstrual cycles. Tests included many many many rounds of blood work looking at things like my hormone levels, and blood clotting agents, and other blood work i’m still not completely sure what it was testing for. the blood work came back with many of my hormones being out of range. Also during this time I had received multiple pelvic and abdominal ultrasounds, unfortunately the ultrasounds came up with 2 new diagnoses including pelvic congestion syndrome (varicose veins within the pelvis) and an ovarian cyst. I was put on birth control to hopefully help with the heavy bleeding, control the hormone levels, and prevent the formation of ovarian cysts. I tried many different types, none of which were completely successful. So as of now I am on the Depo provera shot and it seems to be doing the trick.

As far as the rapid heart rate goes my cardiologists believe I have something called Inappropriate sinus tachycardia, which they haven’t really seen in a case like mine. So I am put on beta blockers to slow my heart rate, but we are still pretty much unaware as to what causes the rapid hr.

Somewhere within all of the medical mess I also began to have severe abdominal pains. I went to Adolescent medicine to see if my menstrual cycle could be the cause, but they sent me to the ER thinking it could have been something much worse. In the ER I received more blood work, ultrasounds, CT scans and who knows what to find the cause of the abdominal pain. Everything came back normal, and on more occasions than once me and my mom had left the emergency department in tears because nobody was listening to us, and I couldn’t handle the pain much longer. Every trip to the ER led to accusations of seeking drugs, or lying about whether or not I was sexually active, or belief that i was seeking attention.

Next we decided to see a GI doctor at Froedtert hospital to see what was causing the abdominal pain, since we knew it wasn’t something to do with my reproductive system we had pretty much come to a last resort. Here we did more testing for things like food sensitivities and allergies, and tests showed that I had moderate to severe stool burden. I have been put on things like miralax and fiber supplements to try and help that, and continue to see the GI doctors.

Along the way through my medical journey I have seen dermatologists for things like excessive hair growth,  and excessive sweating. I also had to see the ENT for ringing in my ears and pressure as well as ear aches, this led to a referral to the oral surgeon, where I had surgery to remove my wisdom teeth, which helped with the ear pains. My severe fatigue has led to diagnosis in anxiety and depression, a loss in my social life, and has also caused me to go for an overnight sleep study. So now I also have a diagnosis of restless leg syndrome or periodic limb movement.

Recently my body has began to show me a whole new set of symptoms, including low body temperature, muscle twitches and spasms, Severe fatigue, heat intolerance as well as cold intolerance, dizziness upon standing, random aches and pains  and many more things. We were at a loss of where to go next and who I should see. So my mom called my cardiologist and he recommended seeing my pediatrician to get tested for things such as lupus, Lymes disease, Multiple Sclerosis etc.

There was a problem though. I no longer had a pediatrician once I began having all of my medical issues she seemed to get to overwhelmed and became very hard to work with. So we had to find me a new primary care doctor. We found one and flooded her with my whole medical mystery and files and tests. I can only imagine how overwhelmed she must have been, but she was able to do something none of my other doctors or specialists could. She looked at me as a whole, she looked at all of my problems and tried to see how they could be related. She came up with the idea that I may have some type of autonomic dysfunction, which could explain so many of my medical issues. Soon I will start testing to see if I do in fact have some type of autonomic dysfunction.but in the mean time I still await answers to many of my medical problems.
My medical Journey started when I was 16 and I am now 18 years old. In the fall I will be attending college with the goal of someday being a nurse. I have chosen a college close to home and close to all my doctors with hopes that my medical mystery will soon be solved.