|Mike Schiller's Survivor Story|
On March 28th I was experiencing a severe cough and the symptoms of strep throat along with severe pain in my upper right thigh. I had had these symptoms (not the thigh) for awhile and did nothing about it. My immune system was pretty much shot because of stress and my cold.
Somehow, someway, I must have done something under the skin (bruise or something else) during my move into my new house and my body finally said that enough is enough and my white blood cell count jumped to 41% (normal is around 11%) to fight off my symptoms. This is where it all began we believe. I headed off to the emergency room thinking I might get a cortisone shot or some drugs to kill the pain. Boy, was I wrong. They could not figure out what my issue was, so they called in the surgeons to take a look at it. As they did (All 7 of them), they determined they needed to do a biopsy ASAP to rule out Necrotizing Fasciitis. I was off to the OR for the biopsy and as a result I would not remember what happened for the next month.
I guess the first week was rough with the movement of the infection through my leg as well as complications with fluid in my lungs. Basically I was living on "life support." I said some things but I do not remember it at all. I had some real intense nightmares during this time and I remember every piece of them like it was yesterday. Funny thing is that none of them related to what I was going through.
Then I woke up. I still had no idea what was going on. I do not remember any of it except that I was always thirsty. The next 3 weeks were missed greatly since I was given medication to erase my memory. I was in the care of others with no power. My faith and confidence in the people that work in our healthcare system has never been higher or ever will be after my experience. Talk about pressure. They perform like no others. I was lucky. I was going to survive.
Finally, I remembered something. While I was in the burn unit at the University of Colorado (this is where most skin grafts happen and they can care for it better than any other unit), I heard the "life flight" helicopter landing at the hospital. From this point on, I started putting the pieces together. I had no idea that I had gone through what I had but was now getting an idea of the seriousness and impact it would have. Maybe that is a good thing in hindsight. My fight to get better had now really begun. Breakfast the next morning was French Toast and I remember it clearly because I was very hungry and there wasn't enough. This was the start to my recovery. French toast, calzones and cheese steak from this point on! I needed to get out of the hospital.
Typical day in the hospital went something like this. Your vitals (blood pressure, temperature and blood sugars) are checked 5 times a day. The bummer was that one of these was at 1:00am. So you always got woken up. Breakfast, lunch and dinner were on your own (ordered and it would be there in 45 minutes). Nurse checks all day and usually MD rounds in the AM and a visit in the PM. PT twice a day for 30 minutes.
Dressing change (new bandages on the leg) once a day as well. The hospital stay was humiliating and humbling because you cannot do anything on your own. I mean anything. Sleep was tough but it was very busy with all the visits during the day from various medical personal. I actually had fun and made some really good friends.
The visits from friends and family, cards, letters, thoughts and prayers were what kept me going during this time in the hospital. The overwhelming impact they had on me they will never know. It was not expected either and therefore had a more significant impact. The support pushed me to get better and follow the instructions of doctors and nurses no matter how much I did not want to. I had to be patient and go by their lead. They are the experts.
Next it was time for the first skin graft. I was scared and did not sleep that night. I was first on the docket in the AM. It was actually my 4th surgery in 30 days (Although I went to the OR everyday for the first week I eventually had 3 major surgery's to remove infected skin on my right leg to stay ahead of the infection), but this was the first one I remember going into. The nurses in the OR were glad to see that I was "with it" this time. Woke up from surgery that afternoon and was ready to go (kind of...I was still pretty out of it). Medicine is an amazing thing. Hard to believe that you can take skin from your back and leg (donors) and leave no scars and apply it to the injured leg.
Surgery went well, but I developed an infection. The source was in the hospital and not a result of me. Anyway, I learned that I would need to go in for another surgery. Although it would not be major, it ensured I would be in the hospital for a few weeks longer. I didn't care at this point, fix it right so I am never back here! The next surgery was a success and now it was time to heal.
Many people experienced it and some probably wished they could have.
During my recovery, I began to hallucinate. I was saying crazy things and seeing things that were not there. I guess I was the talk of the nurse’s lounge as they swapped stories about this "nutball". I had my own room much of the time, but in some cases I did share one. To give you an idea of how I was acting, I learned that one night I woke up and was playing the "virtual piano" and singing. This must have been ugly!
Well, they figured out what was wrong. I was having a drug interaction between my pain killers and stool softener. They made the change, and just like that I was back to normal. Time to get out of the hospital!
Couple more weeks of healing my open wounds and then I was shipped of to Denver Rehab Hospital. The room was amazing but I missed all the people back at the old facility! It was brand new but there were no people! Just much of the same as the hospital except not as fun. The good news…I would be there 5 days and I was then going to be released. I was…….
I was home for a few weeks and things started to get back to normal. I was actually walking without crutches and home with my dog Putter and could pretty much do everything I needed to get by. The mornings were very tough and I felt like I was ninety years old! But a couple of pain pills and a walk and I was good to go. I got back to work slowly but I missed biking, hiking and all the other things that I used to do. They would come down the road. I was confident of that. Have to admit, I actually missed getting on an airplane (I will regret saying this!) and missing the entire Denver spring season.
Went to the doctor a few weeks after I got home and received a pretty clean bill of health and was advised to keep doing what I was doing (walking twice a day and about an hour of stretching). In his words this recovery has been "remarkable" given the amount of my leg that has been affected along with the complication of the infection.
It has been a couple of months now since I got home. I have been able to get back on my mountain bike and hike with my daughters in the mountains of Colorado. I am one of the lucky ones. I caught the infection early and my physicians were aggressive in their strategy to make sure I would have use of my leg, not to mention saving my life. I have not for one second said “why me” but rather focused on the fact that because of my physicians and determination to get better, I have made it through this very “unlucky” incident. As I research what has happened to me and compare it to what has happened to others, I count my blessings everyday.
A couple of things I have learned from this, first, you cannot do it alone, when you need help ask for it! Especially during the recovery process. Second, if you feel sick, you are! Go to the doctor! Prevention and wellness are far more beneficial to your well being than waiting and hoping you will just get better.
NF is a horrible, unlucky and devastating thing to go through. For all of us that have experienced it whether individually, through a family member or a friend, it is something you will live with the rest of your life. The challenge is recognizing the symptoms and acting quickly in order to have a positive outcome. As a survivor and in the midst of recovery, my hope is that the word gets spread that your symptoms may be minor but the results can be catastrophic if you do not take the necessary measures. How we do this depends on those of us that have been affected and get the word out.
Fast forward to March 28th, 2008.
It has been a year now since I first entered the hospital with NF. It has been a long year of recovery and I am by no means finished. Everyday, I look at the scars on my leg and everything I went through comes flooding back to my memory. The hospital, the surgeries, the inability to move or go to the bathroom on my own, the nightmares, the dressing changes, not being able to eat through my mouth, the visits from friends and family and how scared my children must have been. Every detail comes back to mind regardless of how small.
As I get reminded of these things I still never say “why me” to this day. I focus on how lucky I was because of my doctors and the continued care I received. Many of those in my situation were not as lucky as I was and I realize this everyday. It is said that these types of events are life changing. In my case this could not be more true! Every little thing in life matters to me now. I know this is cliché, but it really does. I rarely, if ever get upset about anything. I cherish each morning and look forward to living another day!
Although I cannot do all the things I used to do, I find it now more satisfying to just do the ones I can and enjoy the event for what it is. I am so excited to be back to skiing, hiking and even running on occasion. I would have never thought this would be possible again. It was a result of hard work and more than anything else, patience.
I find it ironic that the things I worried most about losing like being active, my social life (would someone date somebody with this type of deformity), my family, my work and my relationship with my daughters have all gotten better! Maybe it is because I respect and cherish them more now. It is a stretch to say that I am thankful that this happened to me but there is no question my life has taken on a new meaning. I have become stronger, more thoughtful and am having a lot more fun enjoying all I have been blessed with.
I know and realize this is not the same result of many with our infection. The effect that this has had on families, friends and loved ones is incredible. I write this in my recovery story not to show how great it is but rather that it is possible. The recovery from NF is long, draining and never ending both emotionally and physically. Staying positive is how I made it through the darkest times. I would not settle for anything less. Nobody should.
Fast forward to March 28th, 2011.
I just had my four year anniversary since my admission to the University of Colorado hospital. I have never been happier than I am at this point of my life. I am back to work with as much vigor as I had before (I work to live not live to work by the way). I have gotten remarried, visited my 50th state (HI), and continue to recover everyday. Like 3 years ago, I still see the scars on my leg everyday but it is the emotional ones that have almost completely gone away. This summer I am even planning to enter a mountain bike racing series, hike a portion of the Continental Divide and spend a ton of time with my family doing all the things we love to do. Nothing is stopping me now.
As I write this I continue to hear stories of people that have been affected by NF. Either through a friend, a coworker or the news. It seems that the number of instances are getting greater or hopefully it is all about more awareness of the illness itself.
My life was temporarily put on hold for a couple of years, but someone had a bigger plan for me. I think of this everyday and will not take it for granted. My girls have their dad back and my new bride has a husband that is thrilled about life and not the challenges it brings. This is my definition of healthy!
I know a lot of people affected by NF read these stories. I want everyone to know that if you ever need someone to talk to, I am here. I will travel anywhere, anytime to visit or just be a sounding board to offer support. My recovery was a roller coaster and I am sure I am not a lot different than anyone else. Reach out if you need to. I did and it was instrumental to my recovery so far being a tremendous success.
Denver, CO USA
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May 15, 2011