My name is Kelsey Lehenbauer. I am 24 years old and have been serving in the military for 5+ years. It was in the last weeks of basic training when I started to experience an unbearable, excruciating stabbing, burning main in my right hip. It would keep me awake for hours at a time and sometimes stop me in my tracks when I was supposed to be marching next to my fellow airmen. I feared I would get held back or kicked out so kept it to myself as much as possible during training. Once I got to my first assignment, I told the doctors about this horrendous pain I was experiencing. Now, I have no feeling whatsoever in it at times and then the stabbing/burning comes back and lets me know it is never going away. My doctor diagnosed me with meralgia paresthetica or nerve damage in the hip. How did I get nerve damage in my hip? Even the doctors pondered that statement.
About a year later, I kept having flu like symptoms and they never seemed to go away. The doctors ran every test possible but couldn't figure out what was going on until one doctor stated that I should get an ultrasound of my gallbladder. I was just 20 years old, I knew there was nothing wrong with my gallbladder. Sure enough, the test results came in that my gallbladder was 0% functioning. 3 days later, I lay in a hospital bed awaiting for the surgery. The surgery seemed to go well and I was able to go home later that evening. I went back for my check up 3 weeks later, still not able to keep food down and my doctor said my incisions were being very slow at healing so he put me on 3 weeks more of convalescent leave. From that point on, it was everything I ate, I would experience nausea/vomiting/diahrea. I was sent to a gastroenterologist who tested me for numerous things and completed a colonoscopy/endoscopy. She found that I have severe GERDS, hiatal hernia, and she then found & removed several adenomatous polyps . Polyps, which, if left alone, could turn into colon cancer. These types are considered pre-cancerous. The doctor told me how serious this was and that I need to let my immediate family know because they need to be tested as well. She also asked me to come back to her office every 6 months to get a colonoscopy/endoscopy. I came back six months later only to find that she had found more and they had grown quite faster/bigger than the last exam. So I had to come back another 6 months later, in which I found out that she found NOTHING! This was great news to all of us and she told me I didn't have to come back again until 2015! That alone was a rough road upon being sick which led to a 47 lb weight loss. I felt sick everyday and my immune system just weakened each day as my fatigue grew stronger and stronger. I became very clumsy and would have these unexplained falls that would land me in the emergency room. I blamed it on just being a "klutz" but in the back of my mind I knew something was wrong.
In the Fall of 2012, I got sick with 'walking pneumonia' for the 3 millionth time it seemed, and just couldn't seem to get better. My sleep became so interrupted to the point where on a good day I was sleeping maybe 2 hours. People could see it in me, that I wasn't sleeping, my dark eyes didn't lie. That soon led to my doctor diagnosing me with insomnia. He tried giving me so many things to try and help me sleep but nothing seemed to work and just made me even more lethargic.
I began getting more and more short of breath everyday and sometimes had these attacks that felt like I couldn't exhale, like all my air was trapped inside and wouldn't come out. It was the scariest thing ever and sometimes at times I feared for my life. It was then in October 2012 that I was diagnosed with severe uncontrolled asthma. I was in and out of the ER for attacks and had to be put on the highest dose of asthma medication there is available.
In the Spring of 2013, I was going to the doctors almost daily and my insomnia/fatigue seemed to get worse, along with my asthma. One day, when I got off work I travelled to a lung doctor appointment for a follow up. He listened to my lungs and said they did not sound well, he then told me he wanted to do a 6 minute home oxygen test on me to determine my need for oxygen 24/7. I stood up and my heart rate immediately went to 152, the doctor and nurse were very shocked. I took a few steps and got very clammy, dizzy, and my heart rate plummeted in the 200s, all I remember is the nurse running to grab a glucometer thinking I was have blood sugar problems when I passed out. I awoke in the emergency room in Western Missouri Medical Center in Warrensburg, MO. I was very confused and the doctors calmly explained to me that I will be staying overnight for observance because my heart rate and blood pressure were abnormal.
The next day, I was lying in my hospital bed and having the worst chest pain possible. They ran test, after test, after test, and no results were in yet. That evening, my heart rate was well in the 200s resting and my heart felt like it was about to burst. My nurse came in and started giving me nitro per the doctor and the pain didn't subside. My whole left side started tensing up and just had a stabbing, throbbing pain from should to toe. What was going on with me? My doctor sent me down for a CT to confirm I was not having a stroke as my family waited anxiously in the waiting room for answers. They finally rolled me in my room and the doctor came in and said that something was going on with me but they didn't have the equipment to further treat me and that they would have to transfer me via ambulance to St. Luke's in Kansas City. My loving boyfriend, and supporting parents kissed me on my forehead as I headed down the hallway on a stretcher to the ambulance.
On the way to Kansas City, my chest pain began to worsen. I started going into atrial fibrillation and my heart rate was in the 300s at that point. I felt as if I was out of body and not quite there at all. It all just became a bit of a blur to me. I remember arriving in the ER in Kansas City as we waited for the staff to get me in a room to stay. It was very, very late and my parents were wide awake pacing the room worried about their baby girl.
My stay at Saint Lukes was very uneventful, they did not run any tests at all as they said "the other hospital did enough." My entire left side was not working at this point, I couldn't walk, and if I tried with assistance, I would pass out. They had pads all over the floor in the room for my safety, and I remember hitting them pretty hard several times. My eyes had circles around them that were almost black from me passing out and being so fatigued. The doctors there said everything was probably just "all in my head." They then discharged me the next day, unable to stand, unable to walk, etc. I felt hopeless, like I lost my life. I was a very active young lady, and I felt as if these people had given up on me and just pulled the 'crazy card'. At times, I thought, maybe I am crazy?! maybe I am thinking all this up?..but wait, why is my heart doing all these crazy things? Why is my blood pressure dropping or going through the roof? There were many questions that just didn't quite support the "everything is in my head" theory.
I sat at my home that next day, unable to stand due to passing out, and not being able to use my left side. I scooted on the floor on my right side to get to the bathroom and could barely get myself up on the toilet without passing out. I knew something was wrong and I felt like this was the end of my life. I then called the military and explained my situation and they sent someone over immediately. That person opened the door to my house, took one look at me and nearly cried. I remember her saying that I "looked like a corpse", she asked me if I needed anything from the house because I definitely wasn't coming back anytime soon. I said no and she and another person carried me to her car. We arrived at the clinic on the military base where they immediately called the ambulance to transfer me to Columbia.
I arrived at the University Hospital in Columbia, MO late that night. They put me in a room and drew a lot of blood for testing. They performed a spinal tap on me to determine if I had multiple sclerosis, etc. Thank goodness those were negative. During my stay there, there were groups of doctors that came in and evaluated me. One day, a doctor came in after running a few tests on me and said you have Postural Orthostatic Tachycardia Syndrome (POTS). He did not explain it but said I definitely have it & that most doctors aren't familiar with it which leads to multiple misdiagnoses. It is an incurable chronic disease that affects the autonomic nervous system. The autonomic nervous system is sometimes called the involuntary nervous system. It controls bodily functions that we do not have to think about, such as sweating, breathing, digestive function, blood pressure and heart rate. My heart rate raises 30 beats or more when I sit or stand & my blood pressure drops very low. Also with this illness, my heart is smaller so it’s like I have the heart of a first grader in a 24 year old body. Chronic pain, dizziness, extreme nausea & fatigue, brain fog, shortness of breath, chest pain, fainting, and temporary paralysis are some of the symptoms. I didn't truly know what POTS was but I cried because I finally had an answer. I was discharged a couple days later to home health for physical therapy and occupational therapy.
I was advised that I need to have 24/7 supervision, however my insurance would not pay for that and I could not afford it either. My boyfriend lived with me at the time but also had a full time job, my parents are full time travelers so my mother offered to come and take care of me so my boyfriend could keep his job. I had my good days, and I had my bad days. Some days I would pass out 4-5 times a day and after I would do it, it took all the energy I had in me and I would sleep for hours. Some days my fainting episodes led me to multiple ER room visits, hospital stays etc. It is pretty bad when the ambulance knows you by name and knows exactly what hospitals they need to bypass to get me the proper treatment because they have seen me so much.
One day, I passed out in the bathroom and had blocked the door so no one could get in. My mother and boyfriend heard a loud bang and yelled my name but there was no response. They managed to get the door open and tried everything they could to get me to respond. Fifteen minutes later (as directed to wait that long by the doctor) the ambulance arrived and I was still unresponsive. I began seizing periodically as well. They rushed me to the nearest hospital, which ended up putting me on the ventilator. I vaguely remember, as if it was a dream, almost being out of body, looking above myself and watching my family circle me praying and sobbing wanting Kelsey back.
Once the ventilator was in, I was transferred to Boone Hospital ICU in Columbia, MO. I woke up shortly after I got there and was ready to get that thing off of me. Awhile later, they finally removed the ventilator. I could not believe what all had happened. I was in a lot of pain and was just so exhausted. I eventually got moved to a regular room a day or two later, then made a couple trips back to the ICU during that stay as well. I remember my cardiologist talking to me at the foot of the bed in the ICU at one point tell me that something is seriously wrong with me and they do not have the equipment to diagnose. He said I would be going to Mayo Clinic in Rochester, MN either by ground or air the next day. The next day was a long waiting game only to find out that it was turned down by Tricare. I was so hopeless and just wanted to give up on everything. The Air Force did promise me that they did have a plan for me. Several days later, I was in an ambulance preparing for a 13 hour drive to Dayton AFB, OH for a second opinion on everything.
I spent 14 days in Ohio, only to find out every diagnosis that has been made is in fact true. I also have chronic fatigue syndrome and fibromyalgia. They then transferred me to a place that changed my life. Mid America Rehabilitation Center in Overland Park Kansas in which I stayed there for 2 weeks. Mid America taught me how to walk again and I gained incredible strength while there. I was still passing out very often but my strength was back which was definitely a great improvement.
I went home in a wheelchair due to my POTS still being out of control and for my safety. It was just an amazing feeling being home after such a long battle in the hospital, I knew I still had a long road ahead of me but I was eager to take one step at a time. I had found out about the Dallas POTS Treatment Center through a fellow POTSie of mine. She had experienced great improvements and learned how to better control her symptoms. However, this treatment center wasn't cheap and it is not covered by insurance since it is considered "alternative medicine or an elective procedure."
Luckily, my friends and family learned of this amazing place and created "Kelsey's Crew" where they have diligently been fundraising so I could attend this treatment. I have never felt so loved in my entire life as I do now. It is truly incredible how people can get together and do anything/everything for me until I can get the treatment I need.
I appreciate you taking the time to read my story and I hope that I have taught you something about dysautonomia. Getting the word out means everything to me. Have a good day!
Love, Kelsey Lehenbauer
Are you familiar with the Autonomic Nervous System? It is part of the peripheral nervous system and it controls many organs and muscles within the body. In most situations, we are unaware of the ANS because it functions in an involuntary, reflexive manner. For example, we do not notice when blood vessels change size or when our heart beats faster. However, some people can be trained to control some functions of the ANS such as heart rate or blood pressure. This particular training is called biofeedback.
The ANS is very important in two situations: in emergencies that cause stress and require us to "fight" or take "flight" (run away) and in non-emergencies that allow us to "rest" and "digest".
The ANS is comprised of the Sympathetic division (fight or flight) and the Parasympathetic division (rest and digest). In POTS patients, your body is stuck in the Sympathetic division. In other words, your body constantly is having this adrenaline rush and your body is working ten times as hard as it normally would. When stuck in this mode, it can cause problems to the body.
If you refer to the diagram above, while in the fight or flight mode, your pupils dilate. This can caused blurred or double vision, I was diagnosed this year with severe large exophoria, or blurred/double vision, especially when fatigued. It can also cause very dry eyes which I experience more in the morning and night. The sympathetic division can also cause weak stimulation of salivary flow. When we eat something our saliva has something called amylase that breaks the food down and produces glucose to keep our glucose levels normal. When your salivary flow is weak, there isn't enough amylase there to do its job, resulting in hypoglycemia. I was also diagnosed with hypoglycemia in May of this year. The next affected organ is the heart. When in fight or flight mode your heart rate increases, or causes tachycardia. I was diagnosed with tachycardia in April 2013. The sympathetic division causes your bronchi to dilate, which can cause Asthma. I was diagnosed in October 2012 with severe asthma. The doctors thought it was so odd that I was diagnosed with asthma at this age but this is all making complete sense to me now. The fight or flight mode then inhibits your stomach/intestinal motility, resulting in digestive issues. I was diagnosed with IBS, hiatal hernia, and severe GERDS in 2010. It can also relax the bladder, in turn making you get up multiple times at night to urinate when you really don't need to. Sometimes when this happens we might think there is some sort of kidney/bladder infection going on and go to the doctor who will prescribe antibiotics. When you really don't have an infection and take those antibiotics they can kill the good bacteria that we have, resulting in more problems.
Now that I have explained how the sympathetic division works, do you see the trend here? POTS patients such as myself can be dealing with so many problems besides POTS that it can be very overwhelming. I am hoping to see relief in all these areas once I get my POTS under control. That would be amazing, I cannot imagine what it is like to live normal anymore and I can't wait to feel that some day!
As you can tell, my doctor did some very good explaining of POTS yesterday and they also took some baseline numbers so they can use them to compare when the biofeedback process starts today. My heart/breathing ratio were very, very poor and my extremity temperature was 86 degrees, meaning my blood flow is very poor and needs to be in the 96-97 range. We will be focusing on that today.
I am very excited to begin the biofeedback procedures today and was advised to dedicate this treatment all to myself in getting better. So my doctor advised me to kind of block off the outside world and focus on ME the next couple weeks. She doesn't want any unnecessary stressors getting in the way. So, I kindly ask that you be patient in finding out the details of my treatment and I hope to let you know of a successful story when I complete it. She also explained to me that there is no magic button to this process and that I will see more improvement in 2-6 months of my home aftercare. Baby steps!
Before I begin this journey, I want to express and huge thank you to all of you for all the thoughts, prayers, and support that you have given me. I appreciate it more than you will ever know. Just know that even though I won't be able to say much during this treatment that I will be listening to each and every one of you. So, for now, it's not goodbye....it's see ya later ;) love, kels
The Lake Gazette - Monroe, Missouri
Kelsey’s Crew standing up, for those who fall
Former Monroe City resident, Senior Airman Kelsey Lehenbauer has been fighting a debilitating disorder called POTS (Postural Orthostatic Tachycardia Syndrome). Kelsey, daughter of Bob & Janet Lehenbauer, serves in the United States Air Force and is stationed at Whiteman AFB in Knob Noster, MO. Kelsey was diagnosed in April of this year with a severe case of POTS. Kelsey’s symptoms were very severe at the time of diagnosis, although she had been suffering with many of the symptoms for a couple of years. Among the many symptoms of POTS, syncope (fainting) upon standing is the biggest obstacle she struggles with. She spent most of April through July getting transferred from hospital to hospital, as most of them had no expertise in POTS and ran out of tests to perform. She was often released in a worse condition than she arrived. Although after receiving intense physical therapy at a rehabilitation hospital in Overland Park KS, her physical condition had improved enough to get her back to her home. She is now confined to a wheelchair and requires living assistance.
POTS is often an underlying disease, but in Kelsey’s case, doctors have yet to find her primary diagnosis. Due to the lack of knowledge of this disorder, many doctors have given up on Kelsey, leaving her with little hope. At this point, seeing a POTS specialist is the only way to get the treatment Kelsey needs.
Kelsey’s family and friends are asking for donations for uncovered medical expenses and the opportunity to go to a POTS treatment facility in Dallas, TX. All donations are greatly appreciated. To make a monetary donation, please visit the following link: http://www.youcaring.com/medical-fundraiser/kelsey-s-crew/80524 . We will be having a Bake Sale on Oct. 19 at the old score board. 8am-?. Fundraiser T Shirts, baked goods and crafts will be available.