“I have stood at the very edge. I have looked into the abyss. If I’d have taken one more step, I would have fallen. But no matter how far I ran away from God, he was still waiting ahead.” ~ Ethan, Penny Dreadful.
The above quote is from the cable television series Penny Dreadful and is philosophically fitting to my recent prolonged absence.
When you read on, you will realize that this phrase is not an exaggeration. No, it is not some attempt to write an exciting article to bump up readership. On the contrary, it sums up yet another, but more intense, brush with death that I have experienced. Since floxing, I unfortunately have had my share of close calls, two of which I wrote about here, and here. To those who are new to my plight or are unfamiliar with my personal situation, my life is delineated with a clear demarcation line. The life before taking Levaquin, a fluoroquinolone (FQ) antibiotic, and my life after. My healthy life before and my not so healthy life after. It is my story, my quin story, my life after Levaquin; Extremely healthy in one season, and a struggle with health the next.
My latest absence begins last fall in the middle of November 2017. Since floxing I have had gastroparesis, or as I like to call it, gastrointestinal dysmotility, as it affects not only my stomach, but my esophagus and some of my colon. Mainly the pain is felt in the stomach as I have delayed emptying. A sign of mitochondrial dysfunction that, for me, is progressively getting worse, although I will not go into the science details in this article.
It was not uncommon for me to get stomach spasms and painful stomach aches post Levaquin. My doctor and I had developed a protocol that would help with some of the pain and discomfort associated with the spasms that I was getting. Unbeknownst to me, my gallbladder was becoming affected and was filling with sludge and stones. I had my gallbladder checked several years earlier and it got a clean bill of health, but since then, despite healthy eating it became quite dysfunctional and acted atypical for gallbladder disease.
To The Hospital
One day in mid-November I developed one of my stomach spasms. Initially I thought that it was going to be like the stomach spasms before but soon I realized something was different with this one. The pain become more intense centered on the stomach with additional tenderness to the right side as well. Despite my attempts at relief I eventually had to go to the E.R. to get myself triaged.
My wife drove me the 30 minutes to the closest E.R. as we live out in the boonies. The emergency room physician was actually quite excellent, listened well, and went quickly to work. Soon he had diagnosed me with acute pancreatitis in addition to dysfunctional gallbladder. A subsequent CAT scan confirmed their suspicions. This resulted in an ambulance ride to a large medical center about and hour and a half from our home.
At the large medical center, I had an endoscopic retrograde cholangiopancreatography (ERCP for short) to place two stents, one in the pancreatic duct and the other in the biliary duct. These stents would allow pancreatic enzymes and bile to pass into the intestine. It would allow the pancreas to “cool down” before removing the gallbladder. From all first appearances the procedure did its intended job and I was able to have a laparoscopic gallbladder removal two days later. Subsequently, I was sent home to recover, where I thought that I would have a fairly normal recovery. Or at least I thought that would be the case.
One of the complications of acute pancreatitis is a fairly rare but often deadly malady called necrotizing pancreatitis. Necrotizing pancreatitis is considered an extreme complication of acute pancreatitis where the pancreas has begun to ‘eat’ itself with the excessive enzymes that could not pass normally into the digestive tract. The dead tissue is either then attacked by the immune system or becomes infected. This complication can occur weeks after an initial flair up of acute pancreatitis, and like I said before is considered rare and in some cases life-threatening.
To The Hospital, Again
Several days after I returned home I noticed that everything I was ingesting seemed like it was going nowhere. Having gastroparesis this is not an uncommon feeling but, in this case, it got much worse and I started to become very uncomfortable and my belly distended. I went to see my doctor who ordered an abdominal X-ray, followed by a CAT scan. The results showed a swollen pancreas that was blocking the digestive tract, the doctor called in a large pseudocyst. At this point they installed a lovely nasal gastric tube to suction the contents of my stomach. Although the process was quite unpleasant, the relief was intense because they removed over 2 liters of fluid from my stomach. The relief was short lived however because I now had to face second ambulance ride to the large medical center.
The Bad News
Shortly after arriving at the large medical center I got settled into a room, my family arrived, and a team of doctors followed suit. They were quite solemn when they told us the diagnosis, necrotizing pancreatitis. The surgeons pulled no punches and told my wife and I that this condition can have a high mortality rate and the only treatment was immediate major abdominal surgery to remove the dead parts of the pancreas and control any infection. After talking to my wife privately, we agreed to the surgery, which was scheduled for first thing the next morning.
The next morning, I was prepped for surgery. My wonderful wife stayed awake texting and calling family and friends asking for prayers to be lifted up on my behalf. I must admit, I was scared. I knew that I should be trusting in God, but my human nature was currently winning the battle. The time came for surgery and the main surgeon came in and told my wife that he would do the very best. Another doctor who was also the hospitalist, or attending physician, said that he would pray for me.
The surgery lasted two and a half hours. After that time the surgeon emerged and spoke with my wife and family. He said that he had to remove a good portion of my pancreas (later we found out it was about 50 to 60%) but felt that he got all the dead tissue removed. He said that only time will tell what happens next, that the hard part was now up to me.
A Struggle For Survival
The first week was touch and go. Survival for me was from minute to minute. I do not remember much of the first week due to the number of opioids I was being giving. Unfortunately, my white count continued to climb for several days and a few of the doctors were preparing my family for the worse. The doctors in the surgery team had varied opinions on my odds based on my particular case, but 50/50 was the best and one doctor said 10%. I also found it torture, when you are that ill, to endure additional hospital procedures. I had to undergo several CAT scans to locate “pockets” of fluid collection that could be harboring infection. Each time the doctors located a suspected pocket of collection, I was taken to an interventional radiology (IR) lab for a drain to be placed and each trip to IR was a form of torment, from prepping through moving from gurney to gurney. At one point I had a total of six tubes protruding from my abdomen (J Tube, G Tube, JP drain, and three IR drains). These large medical centers run 24/7 so it was not uncommon to have procedures outside the ‘normal’ business hours. For example, I had one CAT scan at 11:00 PM at night that included a tube placement.
Everyday a group of surgeons would come into my room to give my family and update. Like I said, the first week they were generally reserved but things started changing after that. After the first week my white count slowly started to come down. The surgeons told my wife that the pancreas could cause my other internal organs, kidneys, liver, etc.… to shut down, however that was not happening. I was beginning, albeit very slowly, to get better, but the road ahead was going to be difficult.
As mentioned earlier, since Levaquin, I developed a moderate case of gastroparesis. Unfortunately, severe pancreatitis can also cause or worsen gastroparesis. In my case it made the situation much worse. Basically, for the entire time I was in the hospital, thirty-seven days, I did not eat. They tried me on tube feedings, but I was not tolerating the prepared formulation, and no wonder. Most of the prepared formulations were loaded with soy, corn syrup, and other things that I avoided life the plague since floxing.
However, existence for me changed slowly as I struggled from minute to minute, then hour to hour, and finally day to day. It was the most difficult month I have ever experienced. My family never left my bedside taking shifts. My wife was there on her days off and some evenings. If I had a procedure scheduled her boss would let her off work. Every other time one of my adult children were there at my bedside.
Finally, they stopped trying to feed me with tube feedings and told me to try little bits of soft foods. Let me tell you, if you do not eat for a long period of time, your digestive tract actually begins to atrophy. Eating became painful as I had to relearn to eat again.
Unfortunately, I could feel myself getting weaker and weaker with each day. I had a physical therapist tell me that you lose three days for every day in the hospital and it takes four days to regain one day after you return home, and that is for a normal person. Either way, after 37 days total in the hospital and a loss of over 30 pounds, I was looking at a protracted recovery time barring any unforeseen complications. For a ‘normal’ person, recovery would be three to six months, but since floxing had altered my body extensively, recovery would be longer.
Despite the weakness and despite what was stacked against me, I was slowly healing. After some time, the talk with the doctors started to change. Instead of mentioning more procedures they mentioned going home, or to a rehabilitation facility due to my weakened state. I told them in no uncertain terms that I did not want to go to a rehabilitation facility since I had family that could attend to my needs.
Finally, that day did arrive. My white count returned to normal, the doctors stopped my antibiotics, and I was allowed to go home.
Who Is This Man?
For over a month I never really looked at myself in the mirror. When I got home I had the most stunning revelation of my ordeal. Initially I could not walk by myself and needed help from my wife or adult son to get to the restroom, etc… One day, shortly after I arrived home, I caught a glimpse of myself in the mirror. I went into shock and had to hold on to something to keep from falling. There in the mirror stood a man I did not recognize. He was an old shriveled up man that looked something akin to a concentration camp survivor. To me, I looked like a skeleton with skin. My cheekbones were prominent and my eyes sunken in. My once robust arms and legs were thin and frail. I thought back about the person I used to be, first before the pancreatitis and then before Levaquin; Back when I was a robust 6’ 4”, and weighed over 240 lbs., and would bicycle 10 miles daily and bench press 300 lbs.
I started to cry. I had lost so much. My wife put her arm around me and told me that she felt that I would recover from this, but it would take some time. I had been spared for a reason. Yes, it was true, defying statistical odds, I did survive, and this wasn’t the first time. I will make a comeback but what lies ahead of me is a long road.
I am dealing with what I would call a good case of PTSD, or at the very least hyper-vigilance, from my lengthy hospital experience. Physically, I have designed my own physical therapy regimen using valuable data from my doctors but still remembering that the medical field has no clue how to deal with FQ damage. When I first came home I could not walk, nor could I barely lift my arms. I am now walking short distances plus some arm strength has returned. I am having troubles in both knees due to the loss of muscle mass. Rebuilding lost muscle mass when floxed is a difficult challenge however I see a very wonderful orthopedic doctor who has identified the muscles that need to be strengthened. Currently I am in leg braces, and using his advice I am doing a home exercise regimen.
My intestinal tract was literally destroyed by this. I have developed a severe case of SIBO due to the fact that I had several lengthy courses of systemic antibiotics for the month I was in the hospital. Afterwards, in an attempt to gain weight, my high caloric intake was a feast for certain bacteria. This is coupled with the fact that I have gastroparesis from the FQ’s and intestinal motility issues from the surgery and pancreatitis led to an inevitable SIBO. My gastroenterologist has developed a plan to increase motility, knock down the SIBO, and start digestive enzymes. I am slowly, very slowly, eating more and maintaining a stable weight which is good, but still not at the pace that I would like. Soon, I will have my “j” tube and “G” tube removed, which is the remaining tubes that I have left, hoping my stomach will cooperate.
Despite several procedures that required general anesthesia my mind seems to be still intact, though some around me question that assumption. I took a quality IQ test very recently that covers novel stimuli and I still scored in the mid 160’s, which was comparable to a couple years ago and a great relief to me, showing no signs of dementia, Alzheimer’s, etc.… Subsequently, to continue to try and keep my mind as sharp as possible, I am using mental exercises and supplements to hopefully keep it in tip top shape.
I suffered from bad brain fog like so many floxies that was predominant in the early years of floxing but thankfully those days have passed although I still have the occasional senior moment that come with age. Mental exercise for me comes in the form of education. I have taken extensive college courses throughout my life. I am finishing my ThD in Theology thanks to the wonder of the Internet. This shouldn’t take too long since I have many, if not most, of the requirements over with.
In a future article I will connect what happened with me yet again to the FQ’s; yes, it can be done because the FQ’s leave tiny metabolic breadcrumbs so to speak. If you are reading this for the first time remember, the FQ’s are indiscriminate in their ability to damage the human body in numerous ways from metabolic to genetic. No, I do not see the FQ’s under every rock, but for me they were the trigger, the difference between good health and bad. Some say that we are genetically predisposed. While a portion of that statement may be true, the FQ’s have the ability to manipulate genetic data via epigenetic changes and direct DNA interaction. There are NO ways to determine who will have an adverse event to these drugs and there are NO ways to determine how severe or long lasting an adverse event will be. The best defense is information, as often there is a safer alternative. So, do yourself a favor, become informed.
Trigger Warning For those who are disappointed, enraged, or fall somewhere in-between when religion, faith, and Christianity are brought up, I recommend that you do not read any further. The following section is unabashedly and unapologetically Christian. So, if you are stopping now, check back soon as I will be posting an interesting article called “Pulling The Trigger: How the Fluoroquinolones Can Cause Mutations and Disease.“
I consider myself an intellectual. Not in a bragging, self-aggrandizing way but I am a very cerebral person. What makes me a bit different is that I am a man of science and faith. Like Francis S. Collins, a physician and the geneticist behind the Human Genome Project, and the director of the National Institutes of Health, I believe science and faith can actually be mutually enriching and complementary once their proper domains are understood and respected.
Against all odds I survived two STEMI heart attacks with no cardiac muscle damage. I survived a case of necrotizing pancreatitis with a high chance of mortality. I have had several doctors in disparate fields tell me the same exact phrase, “somebody is looking out for you” as if sending me a message from above. A man might take one occurrence as coincidence, but not defying death three times with doctors echoing the same message. Even I am not that unwise. So, coincidence? Certainly not.
I have been a Christian for many years, putting my faith in Jesus Christ when I was in my twenties. Unfortunately, I still lived for myself and many, if not most, of the time I was in the driver’s seat of my life putting many things such as work, education, and other things ahead of God. I worked in law enforcement that, for the most part, is pretty Godless and harsh. I committed many sins and at times used expletives like a barroom brawler, that would, in all outward appearances, not make me resemble a Christian at all. Yet despite all that I never really gave up on God, and he certainly did not give up on me.
What now? Well first, I am still trying to get a clear picture of what He wants from me which, I admit, has been quite difficult. I must admit that in the past I have terrible at trying to get a clear picture at what God wants me to do. Often, I have, unfortunately, like ancient Israel become impatient and done things my own way. So, I am trying to listen better and determine what God’s plans are. One thing I have learned that I need to rely less on my intellectual side and more on a devotional relationship with Jesus Christ.
Currently, the days are filled with working on my physical recovery, learning, and spending time with my beloved family. Like I said in the beginning of this article, I have been absent a lot from my floxy friends but hope to return in a limited capacity soon. Finally, God who despite my best efforts at being a marginal Christian, has not given up on me and has convinced me he has some grander purpose in store.
For those of you that have made it this far, I want you to know one thing, God does not abandon his children. For those struggling, he does not promise us a life free from pain and suffering. Unfortunately, those things happen as a result of the fallen world in which we live. Instead, God promises to help us through our struggles. It may be hard to understand, especially when you are going through the dark night of the soul and invaded with despair. I still have times that I struggle with and ask the difficult ‘why’ questions and only God is qualified to answer them, through his word, prayer, and through those he puts close to us.
I will close with a quote from one of my favorite authors, C.S. Lewis “God allows us to experience the low points of life in order to teach us lessons that we could learn in no other way.”
P.S. I will return with a new article “Pulling The Trigger: How the Fluoroquinolones Can Cause Mutations and Disease” coming soon.