Steve in the studio warming up with Stevie Ray Vaughan's (SRV's) song "Lenny"
Thursday, May 31, 2012
Thursday, May 24, 2012
Lemierre's Disease - My Near Death Experience
With all the news recently about the flesh eating bacteria that has cost a young mother her limbs and is threatening her life, I am reminded once again of my near death experience last year from a somewhat similar bacteria. I was asked to write about it back then, but I think I needed some time to really put everything in perspective.
Last year I came home from my honeymoon after enjoying a wonderful time with my wife. I felt healthy and energetic, however the night I got home I started feeling ill. It was obvious to me that I was coming down with some type of flu. I decided to tough it out at home for a few days hoping it would clear up (doctor's are always a last resort for me). After many days with no improvement, things seemed to be getting worse so I went into my local emergency clinic (it was the weekend and my doctor was unavailable). The physician there quickly diagnosed me as having strep throat. He gave me a shot, prescribed some medication and said that it would go away in a few days. I went home hoping to improve quickly.
Within a couple days it was evident that something was clearly wrong. I found myself vomiting blood. I knew this could not be simply strep throat. I went into the emergency room to get checked out. The physician checked me out but could only find the strep throat and said I would improve. I went back home, again hoping to improve.
Things continued to get worse at home. Finally I was hit with the most violent sets of chills and fever that I have ever experienced. The pain was incredibly intense. Unlike anything I had ever felt. My wife got scared and called an ambulance to have me taken to the hospital. Once I was there they checked me out but could not find anything additional wrong. The next thing that happened I later found out would save my life... the doctor ran a blood test, something not usually done for a typical emergency room case of strep throat. The blood test would take several days to come back, but they cared for me through the night and then sent me home without the results.
As I was checking out of the hospital I felt a slight tinge of discomfort in my foot. It was nothing serious so I dismissed it. I had no idea what was to come however...
Once I was back home, things grew worse. My strep throat cleared up, but over the next few days my foot swelled and turned an intense red color. I could not put any weight on it at all. In fact it became painful to even have it vertical if blood was rushing to it. I had to keep it elevated at all times. The pain grew worse and worse. I have some pain killers that I use when my back acts up, and I began to use them to try and deal with the pain of my foot. At first they helped, however soon they weren't enough to help with the pain at all. I cannot find the words to describe the pain to you. The best that I could do to try and describe it would be to say it was like someone putting your leg in a vice and clamping it with incredible force. It was horrific. Knowing that I needed stronger medication than pain pills, I finally relented to my wife's concerns and agreed to go to the hospital.
In the hospital they gave me Dilaudid, which was strong enough to help kill the pain. Over the next few days they tried many different antibiotics on me. None seemed to help. Every day the doctor and nurses would draw a line around the border of the infection and swelling on my foot. As the days went by I watched the border of the infection grow and grow.
We were frustrated and voiced it to the doctor. He was confused and could not come up with an answer for things. The doctor went back and reviewed my charts again. He noticed something that no one else had. The blood test that was given to me a week or longer before was now back and the results were in the file. He burst into the room. The first thing out of his mouth was "You're going to be in a medical journal!" I was shocked. What??? He went on to say how I had a very rare condition called Lemierre's Disease. He said that it was something he had never seen, in fact he had only heard about it in medical school. It was rare. Only 160 reported cases over the last 100 years. He said that even if it had been noticed by the lab technicians when it came back on the blood test, it would have been dismissed as an error because they wouldn't have know what it was. I now had a name for what I was dealing with, but I had no idea the danger I was in.
My family quickly did some research on it and found out just how dangerous it was. At first they did not share with my just how much my life was in jeopardy. They did not want to worry me. I was already in a constant state of numbness from the drugs required to keep the pain at bay so I didn't press them for information.
Even though this thing had a name, I was no closer to getting better. The infection continued to spread. Every day they drew more marks on my foot showing the spread of the infection. I began to worry about losing my leg, or maybe worse dying in that hospital. Never seeing my children again.
Both my wife and mother who were attending to me were both incredibly worried about the situation. We demanded that they bring in a specialist. Finally the hospital relented and one was brought in to help the doctor. This also saved my life. The specialist decided to switch me to only penicillin against the other doctor's recommendation. I did not see immediate improvement but I hoped for the best.
Days went by and things did not improve. The specialist had the bedside manner of a rock and was tough to put confidence in, but I trusted him and I prayed and prayed that God would heal me. Meanwhile my wife had done some research on the internet and found someone related to a family member who had survived Lemierre's Disease. He gave her some valuable information and passed my name on to his prayer chain. People all over the country were now praying for me.
I remember by bandmates and friends coming to visit me. Everything was a blur with all the medication I was on. I struggled to see them clearly and make out the words they said. I remember struggling to talk to them sometimes. The words did not want to come out.
We had almost lost hope. We were ready to switch hospitals and get a new set of experts. Then at the last moment, I began to see improvement. The penicillin fought off the infection enough for me to go home. I still could not put any weight on my foot, and I was in intense pain if my foot was not elevated. But I was happy to go home (though I would miss the stronger pain killers). The specialist said he did not want to mess around with this dangerous infection and put me on bed rest at home for a month on an IV.
I found out so much about my wife during this time. She had gone from newlywed to 100% caretaker in a matter of weeks. You learn the most about a person in times of crisis and I really learned what she was made of. I called her my "Nurse Wife" and she did everything for me. I had never been so helpless in my life. Literally relying on someone else for EVERYTHING. That's tough for an independent person like me who doesn't want to ever burden anyone else with things I am perfectly capable of doing myself.
I had lost 15 lbs within a week and had no energy but it felt so good to be home. For that month my wife changed my dressings and the bags on my IV. She dealt with all the home care nurses that would come in and check on me. So many things...
Eventually I got to the point that I improved enough to get around the house in a wheelchair. Ah...freedom. Soon I began to walk again, still fighting through the pain. But I will never forget the day they took the IV off of me and I was truly free. I knew after that day I would never take my health for granted again.
After that month at home they tested me and the infection was gone 100% from my system. Now a year has passed. I am completely healthy and my Lemierre's Disease is a fading memory. I laugh sometimes when I look down and try to remember whether the problem was in my left or right foot. This disease that almost killed me....so far away now.
For those of you that were wanting to know my story, here you have it. I mainly wanted to write this for anyone else out there with this rare disease. If your doctor is trying antibiotics and they are not working, please have the doctor try penicillin. It was the only one that worked for me. Oh and yes the best medicine of all....PRAYER!!!
And I also wanted to say this...you know your body better than anyone. If you feel that you have been misdiagnosed, trust yourself! Doctors are not always right and a second opinion is sometimes needed. In my case it saved my life. Most people that die from this disease die because they are misdiagnosed. They are told that they have strep throat (which usually precedes it) and if they never go back in to the hospital within about 10 days they are dead. If you believe what you have is more serious than strep please get checked out no matter what. Fortunately for me the infection went to my foot, but had it gone somewhere else my chances of surviving could also have been less. There is not much information on this disease online but some basic information can be found here.
http://en.wikipedia.org/wiki/Lemierre's_syndrome
Last year I came home from my honeymoon after enjoying a wonderful time with my wife. I felt healthy and energetic, however the night I got home I started feeling ill. It was obvious to me that I was coming down with some type of flu. I decided to tough it out at home for a few days hoping it would clear up (doctor's are always a last resort for me). After many days with no improvement, things seemed to be getting worse so I went into my local emergency clinic (it was the weekend and my doctor was unavailable). The physician there quickly diagnosed me as having strep throat. He gave me a shot, prescribed some medication and said that it would go away in a few days. I went home hoping to improve quickly.
Within a couple days it was evident that something was clearly wrong. I found myself vomiting blood. I knew this could not be simply strep throat. I went into the emergency room to get checked out. The physician checked me out but could only find the strep throat and said I would improve. I went back home, again hoping to improve.
Things continued to get worse at home. Finally I was hit with the most violent sets of chills and fever that I have ever experienced. The pain was incredibly intense. Unlike anything I had ever felt. My wife got scared and called an ambulance to have me taken to the hospital. Once I was there they checked me out but could not find anything additional wrong. The next thing that happened I later found out would save my life... the doctor ran a blood test, something not usually done for a typical emergency room case of strep throat. The blood test would take several days to come back, but they cared for me through the night and then sent me home without the results.
As I was checking out of the hospital I felt a slight tinge of discomfort in my foot. It was nothing serious so I dismissed it. I had no idea what was to come however...
Once I was back home, things grew worse. My strep throat cleared up, but over the next few days my foot swelled and turned an intense red color. I could not put any weight on it at all. In fact it became painful to even have it vertical if blood was rushing to it. I had to keep it elevated at all times. The pain grew worse and worse. I have some pain killers that I use when my back acts up, and I began to use them to try and deal with the pain of my foot. At first they helped, however soon they weren't enough to help with the pain at all. I cannot find the words to describe the pain to you. The best that I could do to try and describe it would be to say it was like someone putting your leg in a vice and clamping it with incredible force. It was horrific. Knowing that I needed stronger medication than pain pills, I finally relented to my wife's concerns and agreed to go to the hospital.
In the hospital they gave me Dilaudid, which was strong enough to help kill the pain. Over the next few days they tried many different antibiotics on me. None seemed to help. Every day the doctor and nurses would draw a line around the border of the infection and swelling on my foot. As the days went by I watched the border of the infection grow and grow.
We were frustrated and voiced it to the doctor. He was confused and could not come up with an answer for things. The doctor went back and reviewed my charts again. He noticed something that no one else had. The blood test that was given to me a week or longer before was now back and the results were in the file. He burst into the room. The first thing out of his mouth was "You're going to be in a medical journal!" I was shocked. What??? He went on to say how I had a very rare condition called Lemierre's Disease. He said that it was something he had never seen, in fact he had only heard about it in medical school. It was rare. Only 160 reported cases over the last 100 years. He said that even if it had been noticed by the lab technicians when it came back on the blood test, it would have been dismissed as an error because they wouldn't have know what it was. I now had a name for what I was dealing with, but I had no idea the danger I was in.
My family quickly did some research on it and found out just how dangerous it was. At first they did not share with my just how much my life was in jeopardy. They did not want to worry me. I was already in a constant state of numbness from the drugs required to keep the pain at bay so I didn't press them for information.
Even though this thing had a name, I was no closer to getting better. The infection continued to spread. Every day they drew more marks on my foot showing the spread of the infection. I began to worry about losing my leg, or maybe worse dying in that hospital. Never seeing my children again.
Both my wife and mother who were attending to me were both incredibly worried about the situation. We demanded that they bring in a specialist. Finally the hospital relented and one was brought in to help the doctor. This also saved my life. The specialist decided to switch me to only penicillin against the other doctor's recommendation. I did not see immediate improvement but I hoped for the best.
Days went by and things did not improve. The specialist had the bedside manner of a rock and was tough to put confidence in, but I trusted him and I prayed and prayed that God would heal me. Meanwhile my wife had done some research on the internet and found someone related to a family member who had survived Lemierre's Disease. He gave her some valuable information and passed my name on to his prayer chain. People all over the country were now praying for me.
I remember by bandmates and friends coming to visit me. Everything was a blur with all the medication I was on. I struggled to see them clearly and make out the words they said. I remember struggling to talk to them sometimes. The words did not want to come out.
We had almost lost hope. We were ready to switch hospitals and get a new set of experts. Then at the last moment, I began to see improvement. The penicillin fought off the infection enough for me to go home. I still could not put any weight on my foot, and I was in intense pain if my foot was not elevated. But I was happy to go home (though I would miss the stronger pain killers). The specialist said he did not want to mess around with this dangerous infection and put me on bed rest at home for a month on an IV.
I found out so much about my wife during this time. She had gone from newlywed to 100% caretaker in a matter of weeks. You learn the most about a person in times of crisis and I really learned what she was made of. I called her my "Nurse Wife" and she did everything for me. I had never been so helpless in my life. Literally relying on someone else for EVERYTHING. That's tough for an independent person like me who doesn't want to ever burden anyone else with things I am perfectly capable of doing myself.
I had lost 15 lbs within a week and had no energy but it felt so good to be home. For that month my wife changed my dressings and the bags on my IV. She dealt with all the home care nurses that would come in and check on me. So many things...
Eventually I got to the point that I improved enough to get around the house in a wheelchair. Ah...freedom. Soon I began to walk again, still fighting through the pain. But I will never forget the day they took the IV off of me and I was truly free. I knew after that day I would never take my health for granted again.
After that month at home they tested me and the infection was gone 100% from my system. Now a year has passed. I am completely healthy and my Lemierre's Disease is a fading memory. I laugh sometimes when I look down and try to remember whether the problem was in my left or right foot. This disease that almost killed me....so far away now.
For those of you that were wanting to know my story, here you have it. I mainly wanted to write this for anyone else out there with this rare disease. If your doctor is trying antibiotics and they are not working, please have the doctor try penicillin. It was the only one that worked for me. Oh and yes the best medicine of all....PRAYER!!!
And I also wanted to say this...you know your body better than anyone. If you feel that you have been misdiagnosed, trust yourself! Doctors are not always right and a second opinion is sometimes needed. In my case it saved my life. Most people that die from this disease die because they are misdiagnosed. They are told that they have strep throat (which usually precedes it) and if they never go back in to the hospital within about 10 days they are dead. If you believe what you have is more serious than strep please get checked out no matter what. Fortunately for me the infection went to my foot, but had it gone somewhere else my chances of surviving could also have been less. There is not much information on this disease online but some basic information can be found here.
http://en.wikipedia.org/wiki/Lemierre's_syndrome
Feeling better and ready to head home with my Nurse Wife
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