One year ago in March I spent some time in the hospital due to a mystery illness. Besides a short stay for an appendectomy a few years back, this was my first real health scare. Shortly after I returned home from the hospital I wrote down some of my experiences, and on the one year anniversary of the episode I thought I’d publish my thoughts.
On Tuesday, March 5, 2013, on my way to work in the morning a felt a little strange. During the course of the morning I suspected I was coming down with the flu and decided I should head home early. I took a 2:30 pm train home, and after reading a slight temperature took a Tylenol and had a decent evening watching an old James Bond movie, thinking that I was going to feel better in a day. The next day my fever started to spike higher, hitting 103. I also started to feel a bit nauseous. The fever and other symptoms just continued to slowly worsen through Wednesday. The following day, Thursday, my fever spiked even higher, hitting 104.9 on one reading. I also was now developing diarrhea. Tylenol would keep my fever down for an hour or two, but it would come back up before I could take more. I went to see my doctor, and after he examined me he had me go straight to the ER. After about a 45 minute wait, I was taken into the ER and given 3 liters of fluids. They did a CT scan with iodine, took blood cultures, and sent me home that evening after my temperature had returned to normal. I felt pretty good when I went home, but at about 2:00 AM I woke up with bad stomach cramps. I had very bad diarrhea during the day on Friday, with my fever continuing to spike. I informed my doctor and he ordered a rotavirus test, prescribed some anti-cramping meds, ordered me to take Tylenol and Ibuprofin at the same time, and to keep my fluids up. He told me if I started to vomit I should return to the ER. In the early afternoon on Friday I vomited all my fluids and begin to feel light headed so I headed back to the ER. I was having trouble walking and staying concious. The triage nurse took my blood pressure and measured 50/20. She immediately took me back to the ER, no waiting this time!
In the ER, I was quickly pumped with fluids in two IVs. They took blood cultures and blood for testing. They informed me that my white bloodcell count (WBC) was 1, whereas it had been 11 the previous night. It was obvious I was losing a battle to the infection. I was later informed that my T-cell count was very low. A normal reading would be between 450 and 1400, whereas a patient with full blown AIDS would be about 200. I came in at 9. At this point I became a very special patient. I had visits from urology, surgery, and ICU. I was just hoping they would admit me overnight for observation when I was informed that I would be admitted to the ICU. I had blood taken from an artery in my forearm for a blood test (they wanted it from the other side of the lungs), I received a port that fed directly into my heart (after a fair amount of bleeding when they put it in), and I had a catheter inserted. I then had another CT scan and was taken to my room in ICU.
The first night in ICU seemed to go fine. I received another IV that went in an artery in my hand that allowed them to see my oxygen level and blood pressure in real time. The ICU resident tried for quite some time to get the needle in and eventually one of the staff doctors took care of it. Their main concern was to get my blood pressure up to normal, and I soon was 90/50 or better. They gave me blood pressure medication directly into my heart on the port.
Shortly after the first night I begin to hallucinate and I do not remember most of what happened over the next few days, although I do remember the hallucinations very well. It turns out this is pretty common for those in ICU, and it is termed ‘ICU psychosis’. The hallucinations took on different forms. I could be fully awake and aware and see people in the room that weren’t there and that would only disappear if they were close enough for me to try to touch them to verify if they were real. Laura and I watched a movie, and I remember seeing a number of people in the room with us watching, and when I’d ask her about it, she’d tell me no one else was there. Later, if I closed my eyes I would see incredible animations. These were like watching an animated movie, as high quality as any Pixar movie, that would change every time I opened and then reclosed my eyes. They would contain all sorts of magical creatures and beings, with very creative motions and actions. I could at times somewhat control what I would see, and wherever I looked, the focus would head in that direction. There was no way to avoid them and get sleep; even if I zoomed into the ground of the animation, for example, the animation would continue underground in a new world. Meanwhile, in the real world I would try to get out of bed and remove my IV and catheter. They ended up restraining both of my wrists to the bed which caused me to have all sorts of dreams about being restrained. I don’t remember much of the next two days, but I do remember the dreams. One revolved around an idea that the hospital let all the patients out for a special retreat. On this retreat, random people would be handcuffed to one another so they could get to know one another. I was very unhappy with this arrangement and kept trying to remove the handcuffs, and I was constantly being told by the people running the retreat to leave them on. I also dreamt that I had a twin who was doing horrible things and had tricked my wife into thinking he was me. I was confused about whether I had actually done some of the things that had caused trouble for Laura and the girls. I was visiting a church where she had gone and everyone disliked me because of the things this person had done, and I was handcuffed to keep me from stealing things. Another dream involved a visit to some sort of museum in Hyde Park that had a ride indoors where you would lay in a boat that would move slowly across a sea while classical music played. Again, in this situation I was handcuffed to the boat, and not allowed to move about the museum freely. It turns out my sister had brought in a classical music CD thinking it would calm me down.
Eventually, I came out of the hallucinations as I started to improve, but at that point my breathing became very difficult. Since my kidneys had stopped working, I had a large buildup of acid in my blood. I also had wet lungs with diminished capacity because of all the fluids I had received. As my organs started to function, I had a huge amount of CO2 to remove, and I couldn’t keep up. I felt like I was drowning. To help me out, they first gave me oxygen in the nostrils, then a full mask, and finally a breathing assist machine similar to the CPAP machines for people who suffer from sleep apnea. If I didn’t get the breathing right I would start to get pretty panicky. I remember being frustrated because talking was too difficult, so I asked if I could write a note. I couldn’t even write a single legible word, my brain was just not working correctly. I asked the doctors if they would consider intubating me, which they luckily didn’t want to do. Within a day it got easier to breathe, and once that stabilized they released me to a regular room.
Once out of ICU, I thought I would be headed home shortly, but that wasn’t going to be the case. I consistenly spiked a fever of about 102 degrees several times a day. The diarrhea also would not let up. I was still receiving pretty heavy IV broad spectrum antibiotics, but the doctors began to be concerned when the fevers didn’t stop. They began testing me for everything they could think of, including Tuberculosis, AIDS, syphilis, fungal infections, bacterial infections, and parasites. They were consistently taking blood cultures, sometimes multiple times per day, but nothing would grow in the cultures. Strange symptoms began to show up, such as a moon shaped red rash on one calf and severe peeling of the bottom of my feet. This brought out the dermatologists who looked me over and thought the rash was not in need of a biopsy and the peeling was normal for anyone undergoing toxic shock and severe fever. They told me that I had tested positive for strep and that was the cause of my infection. The infectious disease doctors said the strep positive result was not high enough and they didn’t believe it was accurate, so back to square one.
The inflamation in my gut seemed to be centered around the right side of my abdomen, and the doctors started to suspect Crohn’s disease. To confirm this, they ordered a sigmoidoscopy, which is essentially a minimal colonoscopy just going into the first third of the large intestine. The prep consisted of two enemas and no food for about 18 hours. The results showed no issues, so they ordered a full colonscopy the next day. The prep for a colonoscopy is to drink 3 liters of an awful salty liquid which causes you to completely empty your system. Sadistically, it’s called ‘Golytely’. Again, I didn’t eat for 18 hours. At that time, my hemoglobin had dropped enough that I had to take a blood transfusion before the colonoscopy, which ended up showing no signs of inflamation or Crohn’s. I was very relieved. The doctor then suspected some sort of rheumatological condition, but the rheumatologists didn’t feel any of the conditions, such as Adult Still’s disease, were possible because I wasn’t experiencing joint pain.
After the colonoscopy my diarrhea started to subside, and soon after my doctors took me off the IV antibiotics. At this point, my fever started to drop. I was about to be sent home when I tested positive for brucella, a bacteria that is found in wild animals, farm animals, and even dogs. Some strains can cause severe illness in humans and the symptoms matched many of the issues I had been experiencing. My liver counts were bad, and my liver was swollen. The gastroenterologists wanted to do a liver biopsy, but decided not to after the brucella positive result. I was held for a few more days so I could receive more antibiotics – Rifampin and Doxycyclene. A follow up test to the initial brucella test was negative, but the doctors wanted to try to be sure so they ordered a bone marrow biopsy as a parting gift. After that, I was sent home. I had been in the hospital for 20 days.
I began to recover quickly once I got home. I arrived home on the Thursday before Easter and was able to go to church on Easter morning. I started working from home that Monday, and two weeks later started commuting back to work. I had lost 14 pounds, and was feeling quite weak when arriving home. I could hardly make it around the block for a walk. Blood tests the first and second week after getting out were steadily improving. After the second week my doctor said no more follow up was needed, besides a CT scan to check for the progress of some nodules seen in my lungs. Three weeks later I could walk to the train, but still felt weak and tired easily. Within about three months I felt completely back to normal, except for a little morning arthritis in my ankles.
All follow up appointments revealed nothing new. To this day, there’s no definitive explanation of what happened. My doctor has told me that he suspects I had a normal viral infection, and then acquired a bacterial infection at the same time which quickly spiraled out of control. Apparently this happens more than I realized, even with today’s medicine. If your immune system is compromised and you get a second illness to deal with, even healthy people can quickly succumb to it and need help.
About a month after the experience my hair started falling out in chunks. It turns out this is totally normal for someone undergoing toxic shock, but the doctors had not warned me about this so it was a bit disturbing. My fingernails and toenails had developed lines on them from the point of the hospitalization that took 6-9 months to grow out. My dermatologist confirmed this was normal. Since then, I have not had a cold or a fever, I’ve gained all the weight back (and more) and began exercising more. I would say I’m in better shape now than I was a year ago.
One of the more interesting things that happened during this whole time was insight I got into why I would go through something like this. I have been memorizing Bible verses for about two years, and the verse that I had started working on the Tuesday that I started to get sick was 2 Corinthians 1:3-4:
Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God.
I had not noticed this until a few weeks after I returned home and started working on my memorization again. I had so many people take care of me and comfort me during this experience – visiting me in the hospital, calling and texting me, bringing my family meals and food to me in the hospital, praying for me, and asking what they could do to help. It really revealed to me how little I have done for others who are suffering or in need of help, and I hope that going forward I will be able to repay others for their kindness and generosity. I think that as I have seen suffering in the past year, it has been much easier for me to sympathize with those who are going through illness or physical issues.
I have also realized how easy it is for things to change quickly. Our health is not guaranteed, we cannot take our time on earth or relationships for granted. I hope that I remember this and act accordingly going forward. While going through this experience was scary at the time, I never was truly frightened of dying. My faith in Christ reassures me that I will be with him when I die, forever. My biggest fear was leaving my family behind. There are times when I just forget about what happened last year, but every time I remember the experience I’m so grateful to have come through it and still be here with my family and friends.