Patient Stories

Corbin’s Story

Corbin's Story

My name is Corbin. I’m fifty-six years old, I’ve been married for thirty-three years, have two grown and successful sons, a successful daughter in law, two grandchildren and a dog named Luke.

In May of 2012, I was an executive engineer in charge of a global team of scientists, engineers and technicians who developed technical solutions for the high tech industries of aerospace, energy, and semiconductors. I traveled the world from Amsterdam to Singapore. I orchestrated multimillion dollar deals. I had friends and associates from London to Hong Kong.

Along with my career, I enjoyed a very fulfilling lifestyle. I was a mentor for young men. I was actively involved with my political party. I sang on the church choirs. My wife and I enjoyed exotic family vacations. My retirement savings were building, and we were planning to buy a beach house where we could enjoy summer weekend getaways. I could see retirement on the horizon and things were looking pretty good.

I enjoyed wine, good whiskey and a cold beer from time to time. I didn’t smoke cigarettes or anything else. And I never touched drugs.

I worked out with a physical trainer three to four days a week. I had a slightly elevated blood pressure that was controlled through medication. I saw my doctor regularly, at least quarterly for screenings and faithful annual check-ups. And other than struggling with my weight, which was a major struggle, I was in excellent health. Or so I was told…

I was successful and highly respected. Or as my late father used to say, I was truly blessed and highly favored.

In short…, life was good though May of 2012. But it all came crashing down, or so it seemed in June of 2012.

But now that I understand CIDP, I realize that my CIDP story began about two years or more before 2012. It began as an unassuming tingling in my feet from time to time. My initial inclination was that I was buying shoes that were too tight for all of the travel and walking that my job required. So I got new shoes. It didn’t help… but I simply ignored it.

Then the tingling morphed into a numbness and then a painful burning sensation that would awake me at night. That was troublesome. I told my doctor during one of my quarterly screenings. He checked them out, considered things like the gout, diabetes, circulation issues, etc…, ran a few blood tests, and concluded that they were probably okay. He said “We’ll monitor the situation”. So I ignored it…

Shortly thereafter I began to get this painful muscle tightening in my buttocks. It would come on fairly suddenly and was highly disruptive. It felt like a 500-pound gorilla was grabbing my butt! It literally would stop me in my tracks. The pain would last for a period of minutes then eventually subside. I told my doctor during one of my quarterly screenings but he just shrugged and said, “We’ll monitor the situation”. So I ignored it…

Around that same time frame, I noticed that my legs were getting numb for no obvious reason.

Whether sitting or standing my legs would just go numb. It wasn’t a complete loss of feeling, but just enough to cause a slight concern. The numbness wouldn’t last for long. I would merely stop and lean on something, shake my leg and smack on it a few times, shift my weight around and get going again. But this time I did not discuss it with my doctor. I concluded that it was just me.

At this point in my career I was a regular world traveler, a true globe trotter. And within the U.S., I traveled extensively. I was on a flight to somewhere typically weekly. I had been a significant business traveler since the early nineties and I had this routine down to a science. I mean the people of USAir knew me by name at three major airports! Hotel clerks in Chicago would have my favorite suite ready for me. Bartenders in Texas knew my preferred drink. The Shuttle bus drivers and I would chat about our kids. I could navigate the streets of several major cities as if I grew up there, and I knew the airports like the back of my hand. I had amassed a gazillion air miles and was King Pubba Super Duper Preferred on three different airlines.

But I began to notice that walking through the airports was becoming more and more laborious. More and more frequently I found myself searching for the escalators, people movers and elevators to get around. Often by the time that I had reached my gate, I was sweating profusely.

On one such occasion after arriving to the airport for an early morning flight to Houston, by the time I had reached my gate I was soaking wet with sweat. I had to go into the bathroom and change clothes before I boarded the flight. It was then that I knew something was really wrong.

So I concluded that finally, my obesity was getting the best of me and it was time to defeat this issue once and for all. So I hired a Physical Trainer.

Four days a week Don, my trainer showed up faithfully at my door. Sometimes at 4:30am so that I could catch a 9:00am flight, sometimes at 7:00pm after I’d get home from the office. But faithfully I’d work out. Although I was obese, I was no stranger to the gym. At many points during the years I would go on a workout and diet craze, I belonged to the YMCA, took swimming classes, slung weights around with the muscle heads, and had several pieces of equipment in my basement. My doctor once jokingly said that I was the most fit fat guy that he knew! So you can imagine my surprise at how weak I had become once I started working with my trainer. We started with baby steps and worked my way up to the point of where I expected to be. I regained my strength, my energy and my endurance, and I was a beast. Yet for some reason my weight had barely budged which my trainer and I thought was very odd. But we persisted.

Unfortunately, the burning feet and the numbness also persisted. The random gorilla grip on my buttocks persisted. And along with all that came some new issues. I was getting dizzy and disoriented when moving from a sitting position to a standing position. I found myself loosing balance occasionally with no apparent cause. And when I began to get pain in my arms my trainer began to get concerned and insisted that I discuss this with my doctor.

So okay, it was time for an annual checkup anyway. So my doctor gives me a complete work up and towards the end of the exam he exclaims that I was doing great and that he was very happy about my progress with my trainer over the past year. He said there is nothing that he can see that would trigger those symptoms we’d been monitoring. At the very end he goes down his query from the usual questionnaire. And right at the end he says have you had any chest pains?

That’s when I explained “well… sometimes I feel this little twinge, a slight tickle in the area of my heart”. Not thinking anything of it he said, perhaps we should conduct an EKG test. It had been about two years since my last one, so just to be sure he’d check it out. After the EKG he explained to me that something had changed from the previous one. So he referred me to a Cardiologist. Two months later, in June of 2012, after several tests and analyses, the Cardiologist dropped a bomb on me. And my life changed forever.

My heart muscle wasn’t working right. A week later I ended up in the emergency room. I was in heart failure. My heart had lost between 50% to 70% of its capacity to beat. I wasn’t loosing weight because my body was building up significant amounts of fluid. And worse still, the diagnosis “Idiopathic Dilated Cardiomyopathy” a condition that impacts the heart muscle’s ability to function, was treatable but not curable. I was told that my odds of long term survival without a heart transplant were less than ten percent. And because of several factors including my obesity I would not qualify for a transplant. My Cardiologist compared my situation to a game of poker. He said that I was dealt a really bad hand, but I’m all in and I need to play the hand that I’ve been dealt. I was devastated.

Within two months I was struggling to walk from my garage to my mailbox. Of course I had to discontinue my training and I also had to take leave from work. I was clearly in trouble. My Cardiologist referred me to the University of Pennsylvania Hospital’s Perelman Center for Advanced Medicine. I started treatment there at the Center for Heart Failure and Transplants.

I remember hoping that they would have valet parking because I was afraid that I would not be able to walk from the parking lot to the doctor’s office. It was a very scary, confusing and frustrating time for me and my family. I was slipping downhill fast.

My newly assigned cardiologist was Dr. Mariel Jessup (genius). She was President of the American Heart Association, and chief of the Center for Heart Failure and Transplants. I’ll never forget my first visit with her. She looked me and my wife into the eyes and said, “I know what you’ve been told, but we here at Penn are not going to let you die”. I fought back my tears because men don’t cry, right (not)! I looked at her and explained that, I refuse to die because I’m a beast. She’ll see once she gets to know me. But after her examination she also said;

“Something here isn’t right though, you definitely have Cardiomyopathy, but my alarm bells are going off about you. Something about your case is different”. She immediately ordered a heart biopsy procedure for the next day.

It took about two years of procedures, surgeries, medication cocktails, exercise and change of diet but eventually she and the team of experts at HUP (Hospital of the University of Pennsylvania) reversed my downward spiral and stabilized me at a much higher functional level.

That stability also facilitated a very high risk gastric weight loss surgery and I loss significant weight and I really trimmed down. I was feeling pretty good again except for some fairly aggravating “circulation” problems that again rose their ugly heads. My feet continued to have burning, my legs and arms numbing, and that annoying pain in the butt was back.

Eventually I began to experience the weakness again, dizziness and clumsy feelings. And although I had regained a significant amount of functionality, I struggled immensely with walking through a grocery store or a mall without feeling weak and like my legs were going to simply give out. Something was clearly not right again…

It was then that it was determined that my heart was beating slower and slower as each month was passing. Finally, after wearing yet another heart monitor for a week (I had been through this several times already), it was determined that I had Bradycardia, a slowing heartbeat. My heart had slowed to as little as 38 beats per minute while I slept, clearly unacceptable. So I underwent surgery for installation of a highly advanced pacemaker. I call it my robot. It was programmed to control my heart function for nearly every functional situation. It is an amazing piece of technology and I immediately felt better.

Now over three years into this mess I was on permanent disability. But finally I was in a position to fight back against this bully that had wrecked my life. So I started my exercise program and began walking. I was up to over two miles per walk and added my Bowflex machine into the mix for some light resistance training. I was looking great and was starting to consider returning to

the workplace in a light capacity. But then the “circulation” problems returned. This time with more intensity than before. Once again I was feeling the weakness, burning in my feet, numbness in my legs and arms, dizziness, and faint feeling. But now I was also having random sharp chest pains in the middle of my walks, my fingers were now also getting numb and my legs just felt too week to handle the stairs (my arch enemy). I even developed tinnitus (high pitch ringing) in my left ear (which I insisted was caused by the robot). And once again the grocery store was challenging me whenever I tried to shop without a cart to lean on.

In short.., I was in trouble again.

So all of the folks at the Perelman Center went to work again. I had been treated by nearly every type of specialist one can name and I had gotten to know the Perelman Center For Advanced Medicine better than one of those major airports of my past travels. But this time, they were all scratching their heads. Things weren’t adding up…. Then one day Dr. Jessup (genius) was examining me and she sat back with a look of that “Aah-Haa” moment that geniuses get when they figure things out. She sat up and said to me… “You’ve also got a nervous system problem. I knew something was odd about your case”. She then referred me to Neurology.

Three months later after seeing the Neurologist and having several test and evaluations completed it was confirmed that I had Polyneuropathy. Upon further evaluation via surgical biopsy of the Sural Nerve in my ankle, it was determined that I had an illness called CIDP. My Neurologist then confided with a sense of mild embarrassment that she didn’t feel qualified enough to treat me any further. She explained that it was extremely rare and unfortunately she’s never treated a patient with this illness. I’m glad that she was forthright and honest. I am thankful for her candor. I was then referred to the Chief of Neurology at HUP’s Presbyterian Hospital “Dr. Sami Khella” (genius) who specialized in GBS/CIDP and its variants.

It turns out that the treatment for Polyneuropathy can be very similar to the treatment for Cardiomyopathy. So it’s possible that my Polyneuropathy was being masked by the treatment for the heart because much of the medication and even the pacemaker is the same as used for many nervous system problems. So that treatment probably also gave me some relief from any neuropathy. Maybe? (My opinion)

But after examination, in February 2016 Dr. Khella started me on IVIG and Gabapentin which I continue to receive today along with a half dozen other medications for my heart. The impact has been gradual but the treatment has been increasingly effective. It keeps my dizziness to a minimum, I’m out walking again and for about 10 to 14 days a month I feel pretty good, the other days though, I still struggle. I am highly optimistic for my future. Although looming in the background there is still that Cardiomyopathy and its dire predictions.

The doctors have stated that there is no known link between the two illnesses. They maintain that position because Cardiologists and Neurologists just don’t know enough about these two illnesses. So for now medicine says that these two rare conditions each occurred in my body independently although nearly simultaneously. And in my case both conditions have been declared idiopathic which means there is no obvious cause. However, its widely believed that both conditions were likely caused by exposure to some form of an undetermined toxin or virus which triggered my immune system to react inappropriately. So although there is an apparent similarity between the two illnesses, until there is more research my situation can’t be answered.

For now, I’m being treated independently by the Cardiologists and Neurologists but with significant coordination between those two medical specialties. My hope in an odd sort of way is that the Cardiomyopathy is directly related to the CIDP or some yet undiscovered variant. At least that way the treatment to stabilize the CIDP might be my blessing in disguise as the treatment to maintain stability of the Cardiomyopathy until a cure comes my way.

So it’s been six years since all this started with the tingle in my feet. Through all of this I’ve learned to see the world from an entirely different perspective. The way I see it, we’re here to experience Gods creation just one moment at a time. So I’ve learned to treasure every moment as a gift from God. After all life is just a series of moments, so as the moments we experience in the present become the past, our memories, history and legacies are constructed. So I project my future moments through faith, and relish the fleeting moments as blessings. So in that vein I have faith that I’ll get up out of my chair. I have faith that I’ll take my next breath. I have faith that I’ll continue to climb those stupid steps (my arch enemy). I have faith that I’ll enjoy a good meal and another moment with my family and friends. And I have faith that this current moment with CIDP will one day become past history, a true blessing indeed.

As I said previously, I am highly optimistic for my future. Because in addition to faith I also have the unique advantage of being involved with technology development for over thirty years.

I know that technology is changing exponentially and the knowledge of the medical industry is doubling annually. I know that my cure is approaching me from the future with the speed of an oncoming supersonic jet. And what appears to be very far away is rapidly getting closer. I have to simply be in a position and condition to receive that cure when it arrives. And that is why I get up in the morning fighting to push back against this bully every day. Because I know, the Calvary is coming. I just need to hold down the fort until they arrive.

Thanks for listening to my CIDP story….