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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. 

Doors Keep Closing! Will One Open Up For Me?


By Amy Van Der Kamp
January 2006

I once read: When one door of happiness closes, another opens; but often we look so long at the closed door that we do not see the one which has been opened for us. This was written by Helen Keller.

I think this is so true. Eight years ago, in 1998, I was in college majoring in photography. My dream back then was to become a photographer, travel the world, and express myself though my photos. I worked as a work study student in the photo lab to help pay for my schooling. One day in January 1998, I was mixing the stop bath for the students to use, and the boxes where miss marked. When I began to mix the chemicals, I began to get very dizzy and passed out. I was taken to the hospital and was hospitalized for a few days. I was told that due to how badly the chemicals affected me I should think about another career.  (This was the first door that closed in my life.) I was not willing to give up that easy. My family stuck behind me, along with my boyfriend (now my husband).  I got fitted for a resipory mask and wore gloves to keep the chemicals off my hands. Things were very hard for me.  I began to miss more school, and I just couldn’t keep up. So I came to terms with the fact that it was time to drop out, and try again in the fall of 1999.  I started working fulltime and got on with my life. A part of me always wants to know what would have happened if I would have kept fighting.

Well time started to go by.  In late 1998, I began having a problem with keeping food down and started losing a lot of weight. I was hospitalized for a week; they really couldn’t find anything wrong so they sent me to the University of Iowa, where I went though many test to be told they thought that it was the birth control shot I was on.  They gave me shots to help, and sent me home. A month later I began to feel bad again.  This time they thought it could be my gal bladder.  The day of the test I couldn’t eat or drink for 8 hours. The morning of the test I was getting out of the bath and drying off, and I passed out. I hit my head on the side of the tub. So I was taken to the hospital, and told I had a concussion.  I could not have the test run that day due to my head.  A few days later, I did undergo the gal balder functioning test. They told me my gal bladder was not working and that it needed to be removed. So I had my gallbladder removed. They only thing was that it didn’t really help a lot.

In January 1999, I got married, and my husband and I moved to Des Moines, Iowa for work. I started my new job in March. My first day on the job I was working standing next to the table making bread (I was a baker), and I passed out. I hit the floor; again I was off to the hospital. Again I received another concussion. This time the doctor thought that maybe I should see a neurologist. So we made an appointment only to be told he thought it may be my heart. So we made an appointment with the cardiologist. They listen but really didn’t seem to think it was the heart. They made an appointment for the following year for follow up. I started getting depressed at this time as I knew something was wrong, but no one seemed worried. I went to so many doctors trying to find an answer, but never got one. So I turned to drinking. This only made things worse, and then the doctor began to think it was in my head and that I was depressed.

In late 2000, I was in treatment and passed out right in front of the doctors. Finally, someone was concerned and believed me. They had a cardiologist come see me. When I got out, I went for testing, and they did a tilt table test. This test was positive. Then they also order a stress test. The stress test showed that I was having some rhythm problems. So they put me on a beta blocker, told me to drink lots of water, and eat lots of salt. Things got a lot better.

In 2003, I began to have chest pain, my heart would take off racing, and I would feel like I was going to pass out. I began to feel dizzy all the time. I found that summer I couldn’t be out in the heat; it made me feel so sick. I was starting to feel like I was losing it. Again, I went to the doctors, and they said just to make sure I was drinking enough. In September of 2003, I found my self in treatment again; only this time they did an EKG on me while I was there. They found that my heart was racing, and it was going too high. So they said I should have an EPS study and find out what’s going on.

So in January of 2004, I underwent an EPS study. While they where in my chest, they went ahead and did an ablation in hopes this would help. The ablation took 6 ½ hours. When they where done and I came to, they told me I should start getting better soon. The first few weeks I did, but then I began to feel more tired and dizzy again. This time I went back to the doctors, and they said lets give it time. The only problem with this was I wasn’t getting better. On July 9, 2004 while driving to work, I passed out. I put my car in the ditch. This time my husband pushed the doctors and said there is something very wrong with Amy.  So they admitted me for 24-hour monitoring. Within 30 minutes of being there, I had the staff very worried.  My heart rate would drop down into the 30’s.  They said I needed to have another EPS study, ablation, and pacemaker implant. So on July 14, 2004, they placed a dual chamber pacemaker in my chest. The doctors told me I should feel better soon and get back to my old self again. I was so relived and so ready to get back to my old life before all this started. Little did I know that this was just the start of my problems.  I never felt better after the pacemaker was put in. In fact, I began to get worse. I still felt dizzy and was still passing out. I began to start getting headaches, leg pain, chest pain, side pain, neck pain, began to stop sleeping, and my b/p began to run very low. Due to the fact things where not getting better, my family doctor got involved for the next eight months. I went to the University of Iowa, Mayo, and Cleveland Clinic. After all the hospital stays and tests, they found out that I had POTS, and NCS, low blood volume, and rapid blood flow. So, it was nice to know I was not crazy and that it wasn’t in my head!  After trying many drugs, and not getting better, my doctor told me it’s time to stop working and slow down and hope that medical science will come around. I will never forget this day (December 13, 2005), it truly change my life.

But where do you go from here? It’s a good question and one I role over in my head all the time. I am not sure what tomorrow will bring, or even latter today, but I can live in the moment and enjoy life today. Even though all the doors in my life keep closing one new door opened for me. I get to stay home and raise my son. I get to enjoy the small things for the first time. I was so busy working that when I got home I was wiped out.  I missed my son’s first word, and I missed the first time he took a step.  I can’t get that back, but I can be a good mom now. I can be a better wife. I can learn to live my life to the fullest.

We don’t know when the next door is going to close in our life, but remember there’s always another door, and if you can’t find the door, look for a window!

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