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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. 

Medical Field Worker Perspective....


by Phyllis in Marshall, N.C.
July 2006

I have worked in the medical field for almost 40 years in every respect except billing.  I worked as a clinical assistant, x-ray technician, lab technician, surgery scheduler; you name it, and I had conquered it.  I divorced my husband in my 40's and became physically active for the first time in my life.  I biked, kayaked (whitewater and flat water), hiked, and did all kinds of wonderful things.  I had a life I never thought was possible.  I moved to the beautiful mountains of western North Carolina with a man who, I soon found, wanted another kind of woman.  So I left him and bought my own home (ah, what a wonderful feeling).  The only negative in my life was my job.  It was horrible.  Because of incredible stress, low pay, emotional abuse from superiors, and long hours, I began to gain weight and got severely depressed.  As bad as it was, there didn't seem to be other jobs that paid as much in the area, so I stayed.

After about 4 years, my feet began to hurt near the Achilles tendon area.  Just walking was so incredibly painful.  I got orthotics and special custom-made shoes, but it didn't help much.  Anti-inflammatories did not help, and doctors wouldn't give me pain medicine for chronic pain.  Finally, I had the bone in both heels sliced off and was told that should help.  It did for a while, but then the pain came back with a vengeance in the right foot.  This time, more bone was cut off; the tendon was cut loose.  Bone (which had formed on it) was scraped, and it was screwed back on with a Titanium screw.  Again, I felt relief for a while.  But I had to quit whitewater kayaking.  It was just not cool to run a class 4 rapid and then be such a wimp that I couldn’t carry my boat to the car.

I continued to gain weight and found a new love—unfortunately or fortunately, depending how you look at it. He loved to cook and fed me to show his love.  He loved me close to 100 lbs worth. So when I began to have health problems again, I thought it was just due to my weight gain.

I started to have chest pain in just one little spot.  I went to the MD and he told me it was from straining on the cord of my lawnmower.  (That buzzard was so tough to crank that sometimes I would have to lie down in the yard and rest before resuming.)  It seemed like a good answer, but the pain continued into the winter.  An EKG was negative, and a stress test was also negative.

Two years later, after reading an article in the local paper, I found out that a stress ECHO was more a more definitive diagnostic test for females with heart problems, so I had that done.  I failed it big-time.  I was told that I probably had occluded arteries in my heart and that I should be ready for emergency surgery when I went for my cardiac catheterization.  However, my cardiac catheterization was perfectly normal with only minimal plaque build-up in my arteries.  My cholesterol and triglycerides had been so high for so long that they could not even be measured by the lab tests.  Both of my parents had died of heart attack/strokes. 

Next, I was out on a Holter monitor that I had to wear for 30 days (called an event monitor).  Each time something went wrong in my chest (like missed beats, pain, etc.), I was told to push a button, and the machine would record it.  After that, I was told to call and send the report by phone.  Well, the Holter monitor must have been made for the severely hearing impaired.  Even though you could not tell I was wearing it, people on the next block could hear it when I pressed the button.  My symptoms were the worst at work, but because the monitor was so loud, I did not press it when my heart was the worst.  It didn't matter though, because I failed it miserably.

I then had a nuclear study (injection version of the stress echo), which I believe I passed.  The cardiologist told me that I had Cardiac Metabolic Syndrome.  He said it would hurt, but I was at a much lower risk for a heart attack than the average bear.

I had begun to notice by this time that just about every holiday time, I was sick with some off-the-wall problem.  I had back pain from out of the blue, gall bladder trouble (which required surgery), and arthritis in my knees.  I went from being a great employee to being a high-absentee employee.  I went back to the cardiologist, but he had retired.  So I saw a new one who promptly told me that he did not believe in Cardiac Metabolic Syndrome.  Hmm...thousands of dollars for nothing.

Frustration had long been a daily thing.  I was seeing a psychiatrist monthly, and was on a beta blocker as well as blood pressure medicine.  Then, another set of holidays rolled around, and I got very ill.  I was vomiting, had headaches, and a fever; it lasted two weeks.  I was tested for everything, but all tests were negative.  I made myself an appointment with an infectious disease MD that I knew.  She said that I had probably had a severe viral infection, but I was coming out of it.  She also told me that I was too complicated for a family practice MD and to get an internist.  I did get an internist, and he changed my blood pressure medicine.  I began to have lots of problems.  My blood pressure would be high enough for a stroke, and then an hour later, it would be low enough to pass out.  When I had seen the internist 10+ times in a month, he told me that I had an attitude problem, and that my anger was probably causing my blood pressure shifts.  Well, I hadn’t been angry until then, but he changed that.  That was the last time I saw him. 

I saw a new internist, and he had no idea what was wrong with me.  After doing several thousands of dollars of tests (all negative), he sent me to a urologist.  The urologist repeated half of the tests and said I needed to go to Duke or Bowman-Gray (large teaching hospitals in North Carolina). He didn't know what was wrong either.

While crying to my psychiatrist, he asked if I had gone to a cardiologist he knew in Hendersonville.  I had not, but I managed to get an appointment.  I had all my records sent to him and went in waiting for the whole thing to begin again.  Within 5 minutes, he said, "Well, I know what you have, and that’s the good news; the bad news is it is incurable."  He told me that the 2-week illness I’d had was a brain stem stroke, which very few people survive.  (I did not even know I’d had it, though I did go blind for a couple of days during that time.)  It had affected my left side.  My eyes were rapidly, subtly, twitching back and forth, and my gag reflex was gone.  He said the stroke was caused by an infection, not a clot.  He told me that I had POTS, a form of dysautonomia, and to check it out on the computer.  He sent me for an oblique cervical spine MRI--not a normal view.  When I read the report, I could not believe it!  Part of my brain stem was in my neck, and part of my spinal cord was out of the spinal canal (Chiari).

He put me on Lortab (pain), Zanaflex (muscle spasm), Lasix (fluid retention), Aldactone, Tenormin, and Midodrine for my blood pressure.  I was, of course, still on the anxiety and depression medications from the psychiatrist.  With a little fine tuning (after my first experience with hallucinations), this treatment seemed to settle my blood pressure down better than it had been in a year. 

Then, I had my knee replaced and got a bladder infection in the hospital.  That sent me off to the races again.  My immune system is almost non-existent now.  I have had pneumonia 5 times since November, 2005 and a simmering bladder infection the whole time.  I catch everything, and I heal very slowly.  I am still dealing with the bladder infection.  I have taken several very bad falls when my blood pressure has plummeted, but have had no breaks so far.  (There are some positives to being large!)

My physician described me as a "high functioning" POTS patient, but I am unable to drive much, have constant memory loss, and black out for as long as a week at a time.  Even though I am up and functioning, the lights are on, but no one is home!  I was able to hear 4 separate times that I am going to be a new grandmother, and each time was the first, though it was for the same baby.  I get to see movies for the first time over and over. 

I take my life a day at a time, and sometimes a minute at a time.  I was able to get long-term disability from the horrible former employer before they could cancel it (and they did try hard and fast), but my insurance runs out in November.  Does anyone know of anything you can do in this situation?  I make too much for Medicaid and my disability is on a private policy, so I still have to wait until 2 years after social security disability is finalized for Medicare.  I would really like help in that area.  My worst fear is that I will lose a place to live while trying to do this.  We all know that it is only sometimes that we are "here" enough to accomplish much.  Also, I would like to hear from anyone who would like to e-mail back and forth on the illness.  People who do not have it just do not seem to understand.

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