Running Saved My Life

I haven’t been posting recently, with good reason. Over the last couple of months I have been in and out of the hospital or else recovering at home following illness that affected my respiratory system.

The short summary is I went into the hospital with advanced respiratory distress (ARDS) a few months ago due to an uncommon condition known as Wegener's Granulomatosis that had attacked the vascular systems in my lungs among other things. I was in critical condition for awhile, including some time enclosed in a high-tech rotating bed, but now I am home and recovering. At one point, one doctor told me that the increased lung capacity I had developed due to participating in endurance events may have bought the doctors the time they needed to identify the cause and begin treatments, thus saving my life or at least significantly increasing my chances for survival.

For more details and a few pictures, read on…

(EDIT: While the title of this post gives credit to running as a factor that probably helped save me, the real life savers were the many doctors, nurses and other medical professionals who provided excellent care and I don't mean to de-emphasize their work with that title)

The Early Signs

I started seeing signs of this disease as early as March, two months before it progressed bad enough that I was hospitalized. It started with nosebleeds and a nasal infection. A few weeks later I got an ear infection in my left ear. My doctor prescribed some antibiotics, but they had little effect. So every week or two I went back to the doctor and he prescribed a different antibiotic to try. I started losing hearing in that ear, and the other ear was showing signs of the infection. I asked my doctor if it was time for me to see an ENT (ear/nose/throat) specialist. He said the ENT wouldn’t do anything different than he was doing and that we would be in this routine of trying different drugs every couple of weeks until he found the one that worked. I decided to go to the ENT anyway.

The ENT specialist prescribed Leviquin, a strong antibiotic, for the ear. He explained he was bypassing many of the antibiotics my other doctor would have experimented with an went straight for the strongest. The ENT also noticed I had a deviated septum, and asked when I broke my nose. This was a surprise to me since I had never broken my nose. I don’t think the ENT doctor believed me because he insisted it would have hurt like hell and I would have remembered it. When the Leviquin did not do much for the ear after a week, the ENT punctured the eardrum to drain the fluid, reliving pressure and which allowed my hearing to return.

During this same time period, I got an eye infection. The eye doctor treated it as viral pink eye. The prescribed eye drops did not do much (which was not that unexpected since viral infections don’t respond to medicine and just need to run their course). Problem was the infection wasn’t really due to a virus and the ear infection was not really an infection.

The day after my last ENT visit, I had started coughing up a mixture of blood and mucus and noticed a little more effort to catch my breath. Then next morning I had a previously scheduled eye doctor appointment, and the doctor said my symptoms looked like pneumonia. I went to my family practice doctor to check into that. He quickly recognized I was in worse shape than I realized. He had a very grave look on his face. He ran some quick tests, took a chest X-ray, EKG reading, O2 saturation (which was down to 82%) and placed me on supplemental oxygen. My lungs were filling with fluid. The doctor then called an ambulance to take me to the nearest ER, even though the ER was was only one block away. He gave me a packet to give to the hospital doctors containing my recent medical history. The EMT’s arrived and strapped me to a gurney to be wheeled out to the ambulance. On the way, the gurney was rolled over some un-even sidewalk, and it tipped over landing in the road. The EMT’s were able to control the fall so I did not hit the ground to hard and no harm was done except that the EMT’s were a little embarrassed.

Until now, each of my symptoms appeared as a standard but separate infection, and nothing stood out that would have alerted the doctors there was something more, except maybe that the normal treatments for infections were not working.

It turns out that each of these nose, eye and ear infections were the first signs of Wegener's Granulomatosis, a non-infectious auto-immune disease where my body’s immune system attacks the blood vessels in healthy organs. The effects of this disease include destruction of cartilage in the nose, resulting in the appearance of previously broken nose that my ENT doctor observed. It was not until the disease attached my lungs that it became serious enough to put me into the hospital. Often this disease also attacks the liver and kidneys but so far I have not had problems with those organs.

Into the Hospital

I arrived in the ER and was placed in a room. Within minutes, before even a doctor could stop by, an EMT supervisor visited to drop off his card and let me know I could call him if I had any concerns about the fall I wanted to discuss. But I was not hurt and more concerned with the other medical issues so I did not think there was any issue to be pushed.

The Internal Medicine doctor came by shortly after that and reviewed the notes from my family doctor and asked lots of questions. He quickly realized I had something that was not normal pneumonia. He said normally the first thing they might do would be to put me on Levaquin, but since the ENT doctor already had me on that for 10 days without benefit, he knew it was something else and so he called in pulmonary and infectious disease specialists who asked me lots more questions as they tried to figure out what I had. Had I not had the Levaquin recently, the doctors might have lost precious time attempting to treat me with it.

My memories of the next couple of days before they put me on the ventilator are a little fuzzy. Once on life support, I was unconscious for a couple of weeks. My accounts that follow are based on what family and friends explained to me after these events transpired and some notes recorded by my mother. There could be some error in the second hand details.

In the first couple of days, I remember friends coming in to get my keys to transfer my car home. A friend who happened to be a doctor came in to check on me, and I later learned she had stopped in regularly and helped translate the medical jargon of what was happening to me to family and friends.

I was transferred on the 3rd day to the ICU. On the 4th day my mother arrived from out of town for what turn into 2 visits covering most of the next 2.5 months. My lungs continued to fill with fluid and my health was going downhill quickly.

The doctors had narrowed my diagnosis to two theories. I either had Wegener's Granulomatosis or else I had picked up some sort of parasite on my recent travels through South America and Nicaragua. The problem was that they treated me for the Wegener’s that medicine would cause any parasites if I had them to multiply rapidly. So the doctors had to verify whether I had any parasites before administering the treatment by performing surgery to remove a lung sample for analysis.

On the Respirator

On the 5th day of the hospital stay (Sunday, Memorial Day) I was put into a medically induced sleep and paralysis and placed on a respirator while the doctors worked to save my life. In the evening on the Memorial Day holiday many medical people were called in to perform the lung biopsy surgery via an incision in my back. In addition I understand more than a dozen friends from the running community had gathered in the waiting room. Although I had no idea for several weeks what had transpired, my parents were very impressed with this support.

The surgeon at first was worried it might be difficult to get a usable sample depending how much my lungs had deteriorated. Luckily he extracted a good sample. To get the official “all clear” on whether I had parasites, tissue sample would be sent to several labs in parallel for analysis. However, my condition could not wait for the results so they took a quick look in the microscope. They saw no signs of parasites (nor dead parasite bodies from all the antibiotics) and so they started administering the medicines to treat for Wegener’s immediately. Over the next few days and weeks, official lab results came back all confirming no parasites.

(EDIT: corrected description) On the 7th day of my hospital stay I was in a deteriorating state of Advanced Respiratory Distress Syndrome (ARDS) and was placed into the RotoProne bed. Friends referred to this as the “space bed,” “pod,” or “Star Wars bed.” The bed would rotate in a sequence of something like 3 minutes on my left side, 2 minutes lying face down, 3 minutes on my right side. That sequence was repeated for 3.5 hours and then I would be turned face up and hatches in the bed opened to allow me to “air out” for 15 minutes. This air out allowed me to cool down and helped prevent skin breakdown because it was apparently rather hot in the bed. The nurses would use that time to wipe out my mouth and brush my teeth. Then the hatches would be closed and this whole sequence would be repeated over and over. The rotation apparently improved my lungs ability to absorb oxygen and prevented fluids in the body from becoming stationary, which helped to keep many of the body’s organs functioning normally.

The RotoProne Bed (I am inside)



Later I would learn that during the H1N1 pandemic, 14 of these beds were brought in for use somewhere in Austin from the manufacturer in Waco. Eleven of those beds were located at this particular hospital. Most of the patients who used this bed survived. I also learned that while my Wegener’s conditions is uncommon enough that doctors normally would expect to run across it once a decade, my Pulmonary doctors had 2 other cases within the last month, and perhaps the recent experience helped them to quickly identify this condition quickly in me. I think I was lucky landing at this hospital where there was so much recent experience with the use of this bed. Had I gone straight to an ER without going first through my doctor, I would certainly have landed at a different hospital since St David’s was not near my home or work.

Over the next week or so, doctors apparently performed 7 or 8 plasma replacement procedures on me. My blood was extracted, the red blood cells were separated from my original plasma, then the new plasma was mixed in with my original red blood cells and returned to my body. The purpose was to filter out the immune system components that were attacking the rest of my body due to the Wegeners.

During the time I was unconscious, I understand there were a bunch of my running friends who came by to support in some way. Many who came by to give company to my mother, others helped do some work around my house, and/or helped my mother find her way around town. My mother took some iPhone pictures of some of the friends in front of the bed. These sometimes looked like the tourist pictures like the type one might take while standing in front of the Eiffel Tower, but later it would let me know that people had been stopping by to visit. There was a sign-in sheet to record who visited, but the cleaning crew threw it out so I may not know of everyone who stopped by or helped out in some way. I cannot say how thankful I am for this support.

Waking Up

I am not sure exactly which day I was removed from RotoProne bed, but it was sometime before I was taken off the respirator. My mother’s notes indicate I was taken off the respirator on the 16th day of my hospital stay, which was the start of my third week in the hospital. That is where I started to wake up in the ICU, but I was still a bit out of it mentally from all the drugs that had been used to sedate and paralyze me during the time in the bed. It took a few days for those effects to wear off.

I remember bits and pieces of real conversations from that time in the ICU mixed in with the dreams induced by the various drugs that I was coming off of. Initially I was unaware of what had really transpired over the previous two weeks (and my mother was probably waiting for me to become more lucid to explain it). At some point a visiting friend showed me some iPhone pictures of the RotoProne bed and I started to realize a lot had happened that I was not aware of.

My time on the respirator left my voice was very scratchy from having tubes down my throat and it was a couple of weeks before I could talk decently. I lost 30 pounds of mostly muscle mass, and was too weak to even move my arms much. My legs were thin and bony looking like those seen in pictures of malnourished concentration camp survivors.

Someone had explained to me that much of the myosin protein which is necessary for motor control in my muscles had wasted away since I had been so stationary during my time in the bed. The way to stimulate re-generation of myosin was to move the muscles. So, even before I was completely conscious and before I started receiving visits from the physical therapists my mother started having me do some movement exercises with my arms, hands, and legs. Some of the exercises were based on the therapy from her work with recovering heart patients. At first she moved my arms and legs, and later I was able to do that a little more on my own. Each time we would go through those exercises, the next day I was able to do more movement on my own. Once a particular muscle was exercised, it seemed to be bouncing back more by the next day. This early movement probably sped up my recovery and return to mobility.

I started marathon distance running and triathlons 8 years before this incident. Since then, I have been in almost continuous training for some type of endurance event. One doctor later told me that this endurance training had resulted in above average lung capacity, and this increased capacity combined with the fact that I have never smoked probably bought me the time that the doctors needed to save my life. She also mentioned the increased lung capacity might have also kept me in the RotoProne bed a couple of extra days more than the average person, and my extra body fat may have actually been helpful by giving my body something more to feed on during this ordeal.

Since I began distance running, I’ve completed 15 Marathon or 50K trail runs and 3 half-iron distance triathlons. Even if my back-of-the-pack performance has been mediocre and my fitness level lower compared to the others who I trained with, the fact that I participated in this activity instead of sitting on the couch all the time certainly improved my chances of survival, and probably saved my life.

A few days after waking up (aprox day 19?), I was transferred out of the ICU to the IMC (stepdown ICU). By then I was becoming more lucid and aware of surroundings. I passed a swallow test which allowed me to return to eating solid food and allowed the feeding tube was removed. I had a huge appetite and was constantly hungry. Thankfully, St. David’s hospital has an excellent menu with healthy eating options for the patients. These food selections were only available to the patients and not to others in the cafeteria. I could select whatever I wanted from the menu. I had the baked salmon with vegetables and fruit sides a little too often.


The nurses shaved my face, but avoided the mustache area due to the feeding and other tubes that had been in my nose. I felt the mustache along with my hair that had grown long left me looking like something that fell out of the 70’s. My sister pointed out the similarity to a former West Wing star’s new look.


Therapists from Physical Therapy and Occupational Therapy stopped by from time to time on irregular schedules every couple of days. They started out with basic movements not too different from what my mother had been having me do. Then it moved on to having me sit up on the edge of the bed and eventually progressed to standing up by the side of the bed and taking a couple of steps. I also had Respiratory therapists stop by every 6 hours, including middle of the night, to connect me to breathing machines for breathing exercises or to give me inhalation medications.

Rehabilitation

At the beginning of the 4th week of the hospital stay (day 23) I was transferred from the regular hospital to St David’s Rehabilitation hospital, which was located next door. Just prior to the transfer, with the nurse’s assistance and a walker, I was able to move the few steps into the bathroom for my first real shower since entering the hospital. I rubbed a lot of dead skin off my feet as all the calluses that had built up on my feet had disappeared during the previous 3 weeks. My feet have never been so smooth.

At the Rehabilitation hospital I had 3 hours of supervised Physical and Occupational Therapy each day. Sometimes the activities involved walking around the hospital grounds, using cycling machines, walking up and down the stair cases, light weight lifting and balance and coordination exercises. I literally had to re-learn how to walk. My heart rate shot up to uncomfortably high levels pretty quickly, so that was constantly monitored and I had to take frequent breaks to allow the rate to fall back down. But the more exercise I did the less that was a problem.

At first, I was being given a ton of IV antibiotic treatments and supplemental oxygen which left me tied to the bed with lots of tubes, and so any movement out of the bed required a coordinated effort to move or temporarily disconnect those apparatuses during the activities. Because of my weakness and instability, I wasn’t supposed to get out of bed without supervision. I was given a yellow “fall risk” bracelet so the hospital staff would know to watch out for me.


Over the course of the next two weeks I was gradually weaned off the need for supplemental oxygen and the amount of time I was tied to the IV lines were reduced. I progressed from needing wheelchair and walker assistance to being able to walk without that supporting apparatus.

Every activity I performed and each muscle I exercised, resulted in improvement for the next time I tried that activity. There were a couple of cases where I overheard comments from the nurses who I passed in the hall (nurses who I did not remember but they had apparently treated me while I was unconscious) telling someone else things like “I cannot believe that guy is walking around so soon, you should have seen him a couple of weeks ago in the ICU.”

By the end of the last week, I had progressed enough to get doctor approval to be able to get out of bed without supervision, allowing me the dignity to use the restroom without calling for the nurse’s assistance.

I was discharged from the hospital at the end of the 5th week of the hospital stay (end of June). I was not yet back to full strength, but was medically and physically stable enough I was not required that I stay overnight in the hospital.

Recovery and then Unexpected Return to the Hospital

Once recovering at home, I started attending physical therapy as an outpatient to continue my recovery. I also had frequent follow-ups with the various doctors who treated me in the hospital. My mother stayed a couple of weeks to do the things around the house I could not. She returned home after a couple of weeks once I could drive and cook for myself. After 3 weeks, I thought the recovery was going well with my strength gradually returning, but then suddenly late one night I got a hard coughing fit. I started coughing up some fluid and was short of breath.

I probably should have called for an ambulance, but things stabilized after 20 minutes and so I waited until the morning to go in and see the doctor who was overseeing my treatment for Wegener’s. I half expected I would end up in the hospital, so I packed a bag with all my medicines and a couple of other items. Many of the symptoms I had were similar but not as bad as the things that sent me to the hospital the first time. At least this time I was not coughing up blood.

At the doctor’s office, my heart rate after sitting at rest a few minutes was up to 160 and I was short of breath, and so the doctor put me on oxygen and had me take some extra of my prescription pills to lower the heart rate and took a chest X-ray. After 2 hours, the heart rate had fallen to a safer level, and she called an ambulance to send me to the hospital. This time I wound up in Seaton Hospital. This was a different hospital from where I had stayed before, but it was the one hospital where all the doctors involved in my care have access privileges.

The good news was that this time I had only contracted pneumonia and this was not a resurgence of the Wegener’s. The pneumonia was only in one lung, and it had eaten through the incision from the previous month’s biopsy and spilled fluid into the chest cavity outside the lung. The pneumonia in the lung was treated with lots of antibiotic IV fluids. The pneumonia fluid that spilled outside the lung had to be sucked out in surgery.

For this surgery I was only unconscious for a few hours. I woke up as they returned me to my bed in the ICU. After napping for several hours in the evening, I was awake much of the night, where I had an excellent and proactive nurse checking on me. A couple of days after the surgery I was moved to a regular hospital room where I spent a week. As part of the surgery, I was left with 4 drainage tubes sticking out of my chest and there were continued IV antibiotic treatments over the next few days. It took the better part of a week until the drainage tubes could be removed, and I was able to go home after 2 weeks in the hospital.

Recovery

Now I am recovering at home. My energy levels, stamina, and lung capacity are still low compared to what I used to do, but I can see improvement as time goes on. I have regained most of the weight I lost. The doctors tell me my lungs are a still scarred from the ordeal and will hopefully be improving over the coming months. My employer has been very supportive in accommodating this leave of absence despite my short time with the company.

I will be on medications for at least a couple of years to keep this condition in remission. One of the side effects of these medications is the suppression of the immune system. The doctor has advised me not to travel internationally (with some exceptions allowed for developed countries) during this time to avoid the risks of exotic disease or being somewhere with insufficient medical facilities should there be a resurgence of the Wegener’s. This travel restriction eliminates (or at least delays) travel to many of the places I would normally go on vacation, but there are still plenty of places to visit in the US. I will give priority over the next couple of years to regaining my strength and health. I still have some travel stories and pictures to share from last year’s trips to give content for this blog.

It will be awhile before I can get back to any distance running, as now a good workout is walking around the block a couple of times. But I have no doubt I will be back to the running and travels at some point in the future. For now I have to be careful not to overdo the activity until I have healed more.

Prior to these medical events, after watching some friends and co-workers go though some nasty medical conditions over the previous year, I had developed a plan to try to make the most out of any run or any time off for travel because you never know when something bad might happen to limit things. For me the bad thing happened sooner than ever anticipated. Each of my last few marathons/50k’s the reminder that I can run (the "I get to run" mantra from this post about a common friend with ALS) while others cannot has been the most motivating thoughts. At least for me I see a path that can get be back to those activities, so it doesn’t change the philosophy of my outlook so much, just reinforces it and delays the schedule of some plans.

UPDATES:
- See what it was like to train for a half-marathon after this ordeal
- or follow the recovery