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There's a loud pounding on my front door, and through a slight crack in my curtain, I see flashing red lights. Men are moving about my driveway. Suddenly my front door is flung open. Five men stand there: three are firemen, two are in blue jumpsuits. Confusion rushes through my mind, and I hear one man say, “Ms. Shaw! Ms. Shaw! Are you okay? Can you tell me what happened?” The next thing I remember is my body bouncing side to side as the ambulance races through the night. Dazed and confused, I am wondering, “How did I get here? Where are they taking me?”

This is how my imagination relives the night in 1998 when I had three grand mal seizures back to back. I was totally unaware of what was happening. My best friend, who called for the ambulance, told me later what happened. So, how did all this come about?

Eleven years earlier, at the age of 22, I was in Los Angeles chasing a modeling career. I was healthy, happy, and excited about my future. Life was great! I had a great job, my own apartment, and money in the bank. I was rolling! And then it seemed as though I woke up one day 50 pounds heavier with no eye brows. Of course, there were a lot of events that led up to that moment. I do, however, remember that my joints used to hurt all of the time and I always seemed tired. I just chalked it up to working too hard. But as I look back, at the age of 16, my fingers would lose all of the blood in them and get so cold that they became very painful. I used to put them under running warm water to thaw them out. My family and I didn’t think much of it and just assumed I had cold hands. After all, everyone in my family was healthy. We had no known hereditary diseases, and because I was so active, it seemed to be an appropriate diagnosis. It wasn’t until recently that I learned that cold hands were the classic signs of Raynaud’s disease.

I remember one night, in 1987, feeling really terrible. Because I lived alone, I called my friend, Stephanie, at 11 p.m. and told her about my symptoms. She took my concerns very seriously and pulled out her medical book and started asking me questions. Through her endless questions she came to believe my symptoms were fatal. She came over and drove me to the hospital. The on-duty physician was baffled with the swelling and loss of facial hair. He had no idea where to begin or what to do. Lupus nephritis was still a very rare disease and hardly any information was available. I was released with a diagnosis of extreme fatigue and stress.

A few days later my sister called me and said I sounded like I was breathing very heavy. I can still see myself lying in the corner of my apartment on the floor unable to move. Every time I took a breath it felt like a knife was cutting me. I had so much fluid in me that when I rolled over, the fluid settled on that side. I hadn’t urinated for days. Little did I know my kidneys had completely failed! My sister grew more concerned and worried, so she rushed me to the hospital. The doctor determined I had pneumonia: Legionnaire’s disease! It was explained to me that very few contracted Legionnaire’s pneumonia.

As they prodded and poked me, the doctors found I had an extreme amount of fluid in my lungs needing to be drained. So, out came an instrument that looked like a gun with a needle that was at least 10 inches long. Now, you can imagine my fright! While my sister sat with me looking very confident this was the right thing to do, it wasn’t until later I learned she was just as terrified as I was. Unfortunately, the fluid in my lungs, described as thick as gum, could not be drained.

The next thing I remembered was struggling to get up and not being able to move. I was so horrified that I didn’t realize I had a tube down my throat, both arms strapped down and filled with needles, and all these machines around me going haywire as I struggled to breathe. Although a few doctors were standing over me, my eyes locked on my sister, Jeannie. She could tell from the look in my eyes that I was terrified. Jeannie explained that I had been unconscious for a few days and was in the critical care unit. I fought to pull the tube out of my mouth. It was uncomfortable. She told me that the tube was down my throat, because I had stopped breathing and a machine was breathing for me. My sister very firmly said, “Sheila, if you keep trying to pull the tube out of your mouth they will not untie you.” To this day I don’t think I have ever cooperated so fast. Jeannie went on to say my body turned a dark green the night before. The doctors told my family to pay their last respects because they didn’t think I would make it through the night.

Having never experienced anything like this before, I wondered how it all happened. The doctors proceeded into a rather lengthy explanation, but the words were lost in translation. I managed to pick up on “ESRD” and somehow knew it didn’t mean “Extremely Serious Dream Relapse,” nor did “SLE” mean “Seriously Lacking Excitement.” By the look of concern on all of the doctors’ faces, I knew this was very serious.

I didn’t think I was going to make it through all this. I looked at the clock. It was dark and fuzzy. I tried to focus on things around me. I will never forget the chief of nephrology, Dr. Delilah Corry, looking at me with her hand on her chin with a deep look of concern. All I could translate from her look was “What is wrong with her?” After seven misdiagnoses by other doctors, Dr. Corry diagnosed lupus nephritis.

As I lay on my pillow with tears rolling down my face, I asked myself, “Will I ever be the person I thought I’d be? Will I ever do the things I thought I’d do?” I closed my eyes and could see and hear myself 15 years earlier. It is 1972, a beautiful summer day and, instead of my usual activities riding my skateboard, fixing up my mini bike, building a tree fort, or playing a friendly game of soccer with my friends I stayed behind and played with my toy scuba men. That's when I would fantasize the most about what I was going to be when I grew up. “I know, I want to be a race car driver, motorcycle racer, a fireman! No, no. How about an architect? I know, I want to be an inventor! That’s it, an inventor! I want to do something really big!” For what seemed like the rest of the doctors’ visits, I revisited my childhood dreams. My pillow became soaked with my tears. I could only find the words to ask myself, “What about my dreams? Am I still going to be able to live them?”

After spending 45 days in the hospital and making a miraculous recovery, it seemed as if my life was back on track. Moving forward with more zest to live my life to its fullest, I chose peritoneal dialysis (PD) as my treatment, which worked well for my lifestyle. After five years on PD, my blood pressure rose dramatically. I experienced anemia and weight loss until my body finally succumbed to the monster that sent me into a whirl of three back-to-back grand mal seizures. Fortunately, my memory was shaken, and I had no recollection of the seizures.

In 1998, I received a kidney from my sister, Jeannie. It was a spot-on match. Our blood type and biomarkers were so identical the doctors were baffled that we weren’t twins. Since I received my kidney, my life has been in full gear. There’s never a dull moment.

So, just how did I take back control? I have to say it started back in the hospital—on that first visit. I remember Dr. Corry telling me I had lupus, which caused my kidney failure. Lupus was a word I had never heard of, and I just simply refused to accept it. I was willing to accept kidney failure, even though it was equally as fatal as lupus, but somehow I wasn’t as threatened with the phrase. I made up my mind to take control and partner with my medical team. I asked endless questions about what type of lifestyle I could lead. That was the most important thing to me. I found that the more questions I asked about my health and treatment, the more the doctors paid attention to me. It really is true: The squeaky wheel gets the oil. I memorized all my medications and knew all my nurses by first name. My doctors began to spend more time with me. They were impressed with how well I was getting along and, instead of focusing on my illness, started actively asking about what new thing I was involved in. Besides discussing my ailments, I felt it equally as important to tell my doctors about the good things in my life. This always seemed to raise their eyebrows, because my endeavors were always extreme. Of course, I am not suggesting everyone with ESRD should get a motorcycle, but the more your doctors see your zest for life, I truly believe they will work with you to keep you active.

Now, if you were to ask my friends and family, they would say that I was in full denial, that I simply do too much and push my body to the extreme. They just might be right. But this is who I am, and having an illness shouldn’t mean I have to stop being me. After all, I take my medications religiously!

So, not only did I grow up to be the person I always thought I’d be (a racer, builder, and an inventor), but it appears there is a Higher Source with an even bigger plan, which leaves me to tell you how Patient’s Pride, Inc. came to existence .

After doing PD for six months and using the conventional method of taping my tube to my stomach, tucking it in my underwear or bra, I was horrified to think my fate was linked to unsuccessful dialysis attempts with the uncomfortable belts on the market. I needed a second skin to slip the tube under and forget about it until my next exchange.

I knew I had to do something to help myself, so I designed a band to fit my lifestyle. Once I designed my band, I was able to do things I had stopped doing. For example, I could use the bathroom with both hands, free again!

Confident that I would be successful licensing my inventions, my friends and family kept insisting I make my PD products a priority and make them available to other patients—especially since I was so successful using them! My doctor supported their argument. He said if my PD bands were available, he had patients who would love to wear them. My friends and family also said other patients needed to hear my story and see the exciting life I have been living to show that they, too, can take control of their lives and make a difference!

Although it seemed to be a good idea, I still questioned myself! Can I really make a difference? Can I offer other patients support and inspiration? After all, I only attended one support group in the 17 years of my illness. Their stories focused on what they could not do, not what they could do, so I dropped out.

I had often wondered why I was still alive after so many terrible bouts with my health. As severe as they were, somehow I always recovered as if it never happened.

After establishing Patient’s Pride Inc. and offering my PD Security Band as my company’s first product, there isn’t a question in my mind that this is exactly what I was put on earth to do! I can’t tell you how rewarding it has been for me to hear that the very product that helped me get through PD is doing the same thing for others.

Caregivers thank me for providing the PD band because their loved one is fishing, playing golf, gardening, dancing, and living again. Parents call me and stress how grateful they are because their child is participating in activities again due to the PD band. When I hear those remarkable stories, I remember the reason why I developed it. The simple band I used while doing PD is helping others the way it helped me.All I can do is thank my friends, family, doctor, and nurses for urging me to do something.

Now, every day, I get the joy of giving comfort to my fellow patients living the life I once had. Helping others is just as exciting as racing around a motorcycle track at 90 mph. I look forward to a bright future helping others whether it is with the company’s products, a few words of inspiration, or even just an ear for listening. And, as I reflect on those solemn questions I once asked of myself, I shout out loud, “YES I CAN! I am an inspiration, a positive influence, and a motivator.” And I ask all patients who find themselves looking at what appears to be a dim future to please remember me, the wide-eyed youngster with the tears on her pillow, as the person who grew up to be the person she thought she would, who did the things she thought she’d do, who went on to bigger and brighter things.

We are all heroes who deserve to be heard! We must stay away from self doubt, and to quote Eleanor Roosevelt, "We must do the thing we think we cannot do!" I suppose I could be credited with my ability to stay true to living life, but if it weren’t for my doctors, nurses, family, and friends who believed in me and unselfishly reached well beyond their grasp to pull the commitment out of themselves to help me, without a doubt I would not be here today. So, to all of the nurses, doctors, caregivers, and especially organ donors, I thank you! And a special thank-you to my sister, Jeannie, who unselfishly stepped up to the plate when my life was surely over and gave me new life. To her I stay committed to take care of our kidney. I wish every patient on the waiting list to receive a kidney could be as fortunate as I was to have a family member give the gift of life!

 

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