Becoming Paralyzed Was Terrifying, Humbling, Expensive & Life Changing!

iot-corp (49)in #introduceyourself • 8 years ago (edited)

May 2015, my life changed forever, on Mother’s Day, my feet began experiencing what is best described as the pains of hell. No foot rub in the world could have soothed that pain. I had been off work due to flu-like symptoms for several weeks. On May 13’th I returned to my executive job at Sprint Corp and my feet were still in awful pain without any relief. Then in a bizarre twist as I sat in my office my feet suddenly became completely numb. The pain was gone which was a relief but when I stood up and started walking my feet felt like concrete blocks. Walking was instantly difficult. I had no idea what was going on but it was alarming.

I scheduled an appointment with my primary physician right away. He is an OT and was puzzled as he poked my feet with a sharp object and I could feel nothing. This is the point where he should have sent me to the ER. He took blood tests that took a week to get results. He told me to stop taking a new medication which I hoped would make a difference. Unfortunately, it made no difference and the paralysis began its ascent up my legs. After a week, the blood test results were back and they were inconclusive.

I sought the opinion of another Doctor, who said I needed to make an appointment with a Neurologist. In addition to the efforts of the Doctor’s office to make a Neurologist appointment for me, I also called every Neurologist I could find contact information for. The harsh reality was that the Neurologists were all booked out at least 2 months. This is another milestone where one of the Doctor’s should have sent me to the ER. We really must take control of our healthcare and not ever wait on any medical professional who doesn’t have a clue as to what is going on.

After already taking a month off previously I continued going to work because I wanted to keep my job. Fast forward to the first Monday in June. Several members of upper management were coming into town for meetings and I had just been promoted. I had every intention of being there, but when I got out of bed I fell to the floor as I tried to stand up. Almost overnight the paralysis had climbed up my legs and to my waist. Now I became panicked yet still waited for an appointment with a Neurologist.

I was totally out of it but finally got to an emergency room, where I was instantly assigned a Neurologist. For the next few weeks, I spent every day getting every possible test you could imagine. I also spent more than 8 hours in MRI machines. After all the blood tests the Neurologist gave me two tests that helped him to finally diagnose me. The second to last test was an electromyogram (EMG), which is a test that is used to record the electrical activity of muscles. When muscles are active, they produce an electrical current. The conclusion of the test was that my nerves weren’t communicating with the muscles.

The final test leading to a diagnosis was a spinal tap. By that time, I had no feelings in my body and had become a quadriplegic. As if a spinal tap doesn’t sound bad enough, I had 2 different radiologists trying to get spinal fluid with no success. They used 10 different needles and I could definitely feel the needless jabbing my spine. Finally, they could get the fluid which the Neurologist tested. What he found was a high level of protein in my spinal fluid aka Cerebrospinal fluid (CSF). Within a few hours, I was rushed to another hospital to receive immunoglobulin infusions. IVIG is essentially a small solution composed of positive antibodies from thousands of plasma donors.

I had no idea what the diagnosis was when I arrived at the new hospital. One of the Doctors on staff informed me my diagnosis was Guillain-Barre Syndrome. GBS is an autoimmune condition that is like Multiple Sclerosis. With GBS the immune system attacks the nervous system and begins pounding away at the myelin sheath which acts as insulation around the nerves so the nerves, muscles, and brain can communicate. By the time I began receiving the IVIG infusions my chest was tight and breathing was more labored. If it had gone another day I would have needed to be put on a ventilator/life support. For 5 days and approximately 5 hours per day, I received the IVIG infusions. On top of all the other expenses leading up to this, the cost the IVIG and nurses who administered it was $30,000 alone.

After receiving the IVIG I literally slept for weeks as the positive antibodies worked to stop the immune system from attacking the nerves. The immunoglobulin also helped to start repairing the nerves. The only way I could get around was on an electric wheelchair. About 1 month later I could move enough to begin 37 sessions of physical and occupational therapy. I had to learn how to do everything again including writing, typing, feeding myself, tying my shoes, buttoning my shirt, walking again and much more. GBS always starts with the feet and ascends to the top of the head. Some patients are paralyzed head to toe in 24 hours. About 5% of patients die because they don’t get to the hospital in time. As I began to improve I started to have more feeling in my upper extremities. So, I had some hope that I could have a good recovery.

In the end, I have made a good recovery, although my feet are in constant pain and I still have balance issues. I am grateful I made it through although the medical bills have continued piling up. My world has changed in every way. My family is closer, I am happier and so grateful for my physical abilities.

I didn’t return to Sprint which meant my finances have never been the same. I do random things to make money and spend a lot of time volunteering for the GBS CIDP Foundation International as the Liaison for Utah. I visit patients, organize meetings and have a new passion in life of raising awareness at every level. Based on my experiences I now work for the hope of helping other patients get an earlier diagnosis than I did. I have a much deeper understanding of what it means to have empathy. Empathy can change lives for the better. Thanks for your time! I follow everyone who follows me. Feel free to leave any comments below and have a great day!

#story #blog #recovery #minnowsunite

8 years ago in #introduceyourself by iot-corp (49)

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ceciliakeirstead (58) 8 years ago

Your story shocked me (I had never heard of GBS)! I'm glad that you managed to find treatment and I think it's noble of you to raise awareness and look out for other people. I love your message about empathy, and I wish you success here on Steemit!