The true story of my life.I have Buerger's Disease. Cigarettes didn't do this to me. I did it myself. Smoking Got Me. I lost.
Smoking got me when I was 15 years old. I was living the life of a typical teenager. I was playing sports, chasing girls, and hanging out with buddies. But one specific day triggered an avalanche that nobody could predict.
I was at a local park with two friends one day, and just so happened both of these guys smoked. The one took a pack of Marlboro Reds out of his pocket and took a cigarette and put it to his lips. As he was doing this, the second fellow did as well. As I was watching this, the first guy offered me a cigarette and I fell victim to peer pressure.
This was my first experience with tobacco, and I was only at the ripe age of 15! It didn't take long and I found myself spending more and more time with these guys, because we enjoyed hanging out and smoking together. I guess it was a form of rebellion that gave me a rush nothing else had given up to that point.
I have to admit, I was fairly well educated about the dangers of smoking. But the thoughts of a teenager are that these little cigarettes cannot do any harm to a 15 year old living in suburban North Dakota. It would take no less than 3 years later that my reality check arrived.
December of 1999, in the height of the holiday season, weeks before Christmas I cut my big left toe on a piece of glass. Initially I cleaned the wound and bandaged it like any other cut. But as days passed, I realized that it was in fact getting worse, and was not healing. My father took me to see Dr. Klieman, our family physician who I had been seeing for at least twelve years. He was a little puzzled why the toe was not healing. As a standard procedure, he prescribed antibiotics to prevent an infection.
The following day, I went to get a second opinion from another doctor in town. He also did not have any answers for my situation, and again gave me yet another prescription for antibiotics. After seeing two professionals about my cut ... my parents were getting restless and frustrated.
After countless doctor visits to a number of various doctors, we were prescribed a lot of antibiotics along with other remedies and medications. I was told to soak my foot in warm water with Epsom salt, I was given and IV that my parents would inject antibiotics and pain meds through. And the worst prescribed procedure, my dad would have to inject LOVENOX® in my back twice a day as a blood thinner. This is a common procedure for diabetics, but it pained my father to inflict this pain in his child.
After about a month of these treatments and runaround from family practitioners, my family doctor, Dr. Klieman recommended us to see a specialist. He referred us to Dr. Wagner, a vascular surgeon at Innovis Health in Fargo, ND. Dr. Wagner or "Dr. Wags" as I affectionately call him, went right to work on my situation. I informed him of all the avenues my family and I had taken in an attempt to solve my medical mystery. Dr. Wagner is recognized in his field as one of the elite, and I soon realized this. He immediately had a couple of ideas of a diagnosis without running any tests. He asked me some key questions in our first visit. And as you probably could guess ... they all referred to smoking! After the visit with Dr. Wagner he had concluded it was either Diabetes or a rare vascular disease called Buerger's Disease
Immediately I was scheduled for further analysis. Of the many tests done on me, the Angiogram, proved to be the breakthrough my family and I very badly needed. Although the results of the Angiogram were bad news, it was able to shed some light on the very dire situation. An Angiogram is a procedure where they inject a colored dye into your bloodstream and take an X-ray of your bloodstream. The results of my Angiogram showed a massive blockage in my main artery in my left leg. Without proper blood flow to my foot, my big toe was unable to heal properly. After the results of my Angiogram, Dr. Wagner was very positive that my diagnosis was in fact Buerger's Disease, he immediately referred me to the world renown Mayo Clinic in Rochester, MN.
For the next couple of months I was making frequent trips to Rochester, MN. Rochester is about 326 miles from West Fargo, and is approximately a 5 hour drive. The doctors at Mayo clinic confirmed Dr. Wagner's diagnosis of Buerger's Disease. Buerger's Disease is rare vascular disease that affects the bodily blood flow, generally triggered by smoking.
My family and I were finally relieved in the sense we knew what we were battling. But that did not mean the battle was going to be easy. In Rochester I was using medical technologies that were only available there. The primary treatment I received at Mayo clinic was a large machine with many wires that I would be hooked up to. I strapped into this machine and contained a boot that compressed every time my heart would beat. It simulated my heart beat and would force blood to my foot to start the healing of my toe. After a week of these treatments I was given a miniature version of this machine to take home with me. Being strapped to this little machine became a major part of my life for several weeks. I would spend roughly 10-12 hours of my day strapped to this pump to increase blood flow to my extremity. In addition to the pump, I was also using gallons of ointments and medications all to battle against a cut on my left big toe.
While my life was being consumed by numerous doctor visits, I was missing out on my senior year at West Fargo High School. I was ordered to stay bed ridden by the doctor indefinitely. This was very painful in 2 different ways, obviously physical pain, and emotionally painful. While I was bed ridden in the basement of my house, my friends and classmates were living their normal lives as seniors in high school. This was very hard for me, because I was being segregated and growing apart from my closest friends and classmates. I was home tutored, just to be given a chance to graduate with my peers. I worked very hard to achieve my diploma that June, and I thank my Family dearly for staying beside me and cheering me on to achieve that great accomplishment. At the time, graduating was the only bright spot in my life, as I was still undergoing many hours of treatments for a simple little cut on my big toe!
After a long summer of treatments and fighting Buerger's disease, I finally was given good news by my doctors. It was late fall when my cut was 90% healed! This was great news! I had been battling a tiny cut caused by broken glass on my foot for over 10 months!
After the realization of beating this major battle, I wanted to get on with my life and be an active 19 year old. I reestablished lost friendships and started living that "normal" life that I had dreamt about for months. During this period of bonding with my friends, I had a relapse. My addiction to nicotine was so great, that I convinced myself that I had beaten Buerger's Disease and it was ok to smoke regularly while being a young adult.
After only two months of this reckless behavior, the almost healed cut on my toe began to take a turn for the worse. The skin was starting to break down and an ulcer started to form. An ulcer is a break in skin or mucous membrane with loss of surface tissue, often pus. This ulcer was becoming very painful and I immediately scheduled an appointment with my good friend Dr. Wagner. He quickly ordered another angiogram to see what condition my blood flow through my body. The results came back, and were absolutely devastating. The angiogram showed blockage in my left knee approximately 6-8 inches long, and a blockage in my right hip. This mounted to major problems for me and my toe. The size of the ulcer was bigger than a quarter, but a little smaller than a 50 cent piece. It was so deep, that I could visually see bone of my big toe. I cannot express how painful this ulcer was, but the doctors realized they needed to act swiftly. Their biggest fear was bone infection at this point. So the decision was made to amputate my big toe, and perform a bypass to the artery in my left leg.
January 20, 2000, I underwent surgery to perform the bypass, and amputate my left big toe. The doctors used plastic tubing which would replace my damaged artery in my left leg. The bypass tubing started in the upper thigh and extended all the way down to my ankle. The surgery lasted 10, and resulted in 106 staples! I cannot even describe how emotionally distraught I was due to the amputation.
Shortly after the procedure I just underwent, I decided to join my friend who was traveling to Texas. I felt it was a good opportunity to escape Fargo for a few weeks and free my mind a bit. After a few weeks in Texas, we decided to head west and visit my grandparents who lived in Arizona. En route to Phoenix, we encountered car trouble. We were able to find someone to fix the transmission in El Paso, TX. We were soon back on the road again heading west! And then near Albuquerque, NM the transmission "dropped" again. At this point in the trip, we were getting really stressed out. We got stranded at a truck stop for three days and had very little money. We were stranded and dealing with a financial hardship. I joined my friend for few smoke breaks, and this is where it shows how gripping the addiction to nicotine is!
The good news is that we were able to get home with the help of my Aunt, Uncle and mom. For the next few months I was once again enjoying my life. The road-trip experience was pretty miserable, but very memorable. It gave me a chance to bond with a good friend, and let me get away for a while. When I returned, I moved out of my parent's house and got a place I could call my own. I moved into a 2 bedroom apartment with a friend, and began hanging out with friends again and started a project working on a 4-wheel-drive truck.
June 22, 2000, was yet another turning point in my life. I was spending time with 3 friends that evening, and suddenly felt my body taking a turn for the worse. My little smoking relapse has now come back to haunt me. I distinctly remember looking at my clock and seeing 12:34. My left leg was shooting pains up and down my leg. My leg was turning purple, and was ice cold to the touch. I was in such discomfort; my friends took me to the local Emergency Room. There they gave me morphine to manage the pain, but the morphine only made the pain tolerable. The pain was like pins and needles poking my leg over and over again. The muscles were cramping and felt as if I just ran a marathon. I cannot express the pain and turmoil I experienced that night in the ER, but it impacted my life forever.
Again I had another angiogram and again, I had to face the devastating results. The angiogram showed that the plastic tubing from the bypass had become completely blocked. This means that my lower leg and foot has no blood flow. It also showed blockages in both of my wrists, which still exist today. With complete blockage in my left leg, my lower leg and foot are getting no blood flow. My foot immediately started to deteriorate. The four remaining toes had turned black and an ulcer formed where my big toe was attached. The pain levels I was experiencing were off the charts. My foot was basically rotting away with infection at a very rapid rate. After a quick conversation with Dr. Wagner we decided it was time to amputate ...
July 12, 2000, just 21 days after my traumatic evening with my friends, I woke up from surgery after getting my lower leg amputated. The doctors amputated my left leg 6 inches below my knee. This would eventually be very crucial when getting my prosthetic leg and learning how to walk again.
After my left leg was amputated in 2000, I was then able to focus on rehabilitation and learn how to live a "normal" life with my new prosthetic leg. I was sailing through life with no more health concerns, going to college and speaking across the tri-state area regularly. I was also able to get a part-time job at a local hotel during this time. Life was good.
Then Buerger's Disease started to rear its head again in my life. I had a Doctor appointment with Dr. Wagner on June 16, 2003. Almost 3 years after the amputation of my leg. The appointment was fairly standard, except I could tell something was different/weird about my body. Dr. Wagner ordered I have some tests completed to figure out what exactly I was feeling. The results were not very promising. They showed that my circulation had gotten worse throughout my extremities. We then decided we would wait and let time tell if we needed to take further action.
It wasn't until 3 months later in September that I felt my right leg lock up and show the exact same symptoms as what I endured with my left leg. I instantly knew my circulation was at a severe stoppage. My leg was cold to the touch, and began turning colors. The pain in my lower right leg started increasing and becoming more intense. I immediately left for the emergency room that evening. This was very difficult for me; it was déjà vu all over again. My mom and sister came the next morning, and it was very nice having family with me during this event. It was all too familiar for me.
The very next day, September 29, 2003, Dr. Wagner recommended an angiogram to see the "map" of my blood circulation in my body. And once again, it was the same news that I have received in all previous angiograms…I still had all the blockages in my hip, wrists, and left knee. The only difference in this new angiogram was the addition that I had a new blockage below my right knee, and was blocked the length of my lower leg.
This prompted the doctors to act immediately and I once again, was sent to surgery to place a stint in my right leg. This is the exact same procedure they performed on my left leg years before. This was a very dark and trying time for me. I prayed, and prayed often. It was very difficult for me, because my brother has always been there for me, but this time he was not. He was in Iraq serving his country with the local National Guard unit based out of Fargo, ND.
As time went on, my right leg continued to worsen. The stint failed once again, and with no blood flow to my lower extremity, my right foot was decaying by the day.
A few weeks later in October, one of my prayers was answered! My brother was granted a family emergency medical leave. This was a blessing, because I missed him a ton and we were able to spend time together and help me through another rough patch in my life. He was able to drive with me to Rochester, Minnesota a few times to the Mayo clinic. But in the end, not even Mayo clinic could help me beat Buerger's Disease, and the inevitable started to take shape.
Tobacco had impacted my life 3 years prior, and I am once again reliving that nightmare with the other leg. Finally, I made the decision to proceed and amputate my right leg just below the knee. At this point, by toes and foot were turning black, and the situation was identical from the time before. I knew it was inevitable, and exactly 5 weeks later on November 3rd, 2003 my right leg was amputated.
Four days later, I was released from the hospital and transferred to a rehabilitation center. The rehab center was vital in my recovery, as they worked with me to accomplish the day to day activities I needed to perform in life. I was learning how to bathe, cook, and use the bathroom with my new handicap. It was here at rehab I met a guy named Mike, who was similar in age and rehabilitating himself from a football injury. We clicked immediately, because we were experiencing the same tough path. A few months later, I gave a lecture at his school, and he was the person to introduce me. It's a friendship I will never forget, because it made it easier during my time at the rehab center.
After I was discharged from the rehab center, my sister moved in with me. This was very helpful, because by this time my brother had returned to Iraq. Nicole moved into the 3rd bedroom of the apartment I shared with my brother. Despite having a huge 3 bedroom apartment, it seemed very empty. It was during this time I took advantage of growing my relationship stronger with my sister. It was the one silver lining in this whole fiasco!
A few months after my amputation, I received my new prosthetic leg. It was a memorable Christmas, and an even more memorable New Years Eve! This is when I took my first steps with my new right leg. I was now a mobile bilateral below knee amputee. Normalcy has once again taken shape. During this entire ordeal, I was also battling a small ulcer on my right thumb. Although it was concerning, it was a little overshadowed by my right leg. But soon after the holidays, this too was completely healed by June.
Once again I was cruizing through life with no major speed bumps. I returned to school as a full time student in 2004, and juggled many speaking engagements during this time. I was getting educated, and working just like any other college student. Life was busy, and I enjoyed the normal lifestyle I had retained during this time. In the summer of 2005, my brother and I had decided to move out of our 3 bedroom apartment in downtown Fargo. Josh bought a condo in the neighboring town of West Fargo. In fact, it was just a couple blocks from the house we grew up in. The condo was nice, but had 2 huge flights of stairs! Unbeknownst to me, this would be disastrous to my health.
I was very active walking on my prosthetic legs. I helped with the move, and walked these flights of stairs many times up and down. This started creating a problem on my knees. With all the walking, I was constantly creating rubbing on my knees from the prosthetic legs. This began to create sores on my limbs and with the poor blood circulation I have from Buerger's Disease, the sore would not heal. This was only the beginning to a long 2 and half years.
I had countless doctors' visits checking on the sores, at which time I was told to stay completely off my "feet". The doctors had confined me to my wheelchair. This was very difficult for me, because a wheelchair is very restricting in what a person can do. So going against my doctor's orders, I would secretly use my legs when I needed to.
These sores on my legs resulted in a doctor visit once a month. Every month I was told to stay of my feet, and every month I would continue to walk. Obviously, the sores were not healing, and remained very painful. With these sores developing on my legs, that were not healing, I was forced to cancel many speaking engagements. This was very difficult, because public speaking was my livelihood. I had virtually no income whenever I had to cancel an engagement.
With the mounting stress from not working, and being confined to my home in a wheelchair, I once again made a stupid decision. I relapsed again and started to smoke. The biggest evil in my life has once again prevailed. Tobacco had controlled my life and now once again it is bringing me down.
With me continuing to smoke, my body kept responding with developing sores. I have had up to 15 sores on my body from my legs to my fingers. As you can see, I've lost a few finger tips due to these sores not healing; all because I smoked. August 15, 2006 was yet another day I went in for surgery. This time it was to remove an exposed bone in my right index finger. The flesh had completely deteriorated and only the bone was left, which was very painful I might add. During this surgery Dr. Wagner decided to do more damage control with the sores on my body. He had performed a little cutting on my pinky finger, and also cut away the sore on my right leg; which became one big sore from multiple little ones. 2007 shaped up to be almost the same as 2006. I was in a constant battle with sores all over my extremities, but mainly on my fingers.
My left index finger gave me the biggest problems, in fact Dr. Wagner suggested we let the body self amputate the finger. Which was quite a long process and during this time Dr. Wagner had announced he was leaving my current hospital, and taking a job at a different hospital in a town 2 and a half hours away. After about 8-10 months of the finger self amputating itself, I had my first doctor visit with my new doctor who had replaced Dr. Wagner. My dad had accompanied me on this Doctor visit since it was the first appointment with my new doctor. As my dad and I were sitting in the room, I was showing my dad my black index finger and how far along the process was with the self amputation. And as I was showing my dad, the new doctor had entered the room and looked at it briefly while I had it uncovered. The doctor merely said, "you don't need that anymore" and then grabbed the black part of the finger and ripped it off! Just like that, he had ripped off the dead portion of my finger. This was quite shocking, and took me by real surprise.
After this experience, I decided I will continue to see Dr. Wagner. He has been my doctor since I was diagnosed with Buerger's Disease, and I think the 2-½ hour drive to my appointments is totally worth it.
Today, I can assure everyone I have beaten Tobacco once and for all after a 10 year struggle! I have made many life adjustments, and I once again feel comfortable in my own skin. I have ZERO health complications, although I still have Buerger's Disease, it is considered dormant, because my body has rebounded completely since I cut out the tobacco use. I got married to my beautiful wife Melissa in August of 2010 and we bought a house shortly after in West Fargo. I am currently in school, and booking more and more speaking engagements by the week!
Thank you for taking interest in my story and the negative effects that tobacco has caused. Please feel free to contact me with any questions you may have; and remember "a tobacco-free lifestyle is easier than living with the effects of tobacco."
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