I’m Fricking Alive! (A Love Story)

I was diagnosed with Ulcerative Colitis in high school and — after years of trial and error with medication — successfully achieved remission via an expensive immunotherapy drug that was self administered under the skin twice a month. While the drug was effective in minimizing the internal inflammation in my colon, its immunosuppressive qualities made me extremely vulnerable to infections which caused me to be sick a lot. Although this condition was serious, it was well under control and the medication enabled me to live a mostly normal life where I could enjoy the rapid personal growth period that happens during your early 20s.

By 25, it appeared that life was certainly going my way: I had a job that I loved that paid well, friends and family that supported and loved me and was in peak physical and mental condition that enabled high performance in all areas of my life. Wake up at 5:30am. Workout. Meditate. Feed and walk the dog. Shower. Breakfast and coffee. Check the news. Go to work. Make dinner. Work on personal projects. Read. Sleep. Repeat. As a creature of habit, my routine was impenetrable and quasi-spiritual. I was loving the person that I was becoming and felt that I had achieved the perfect balance of learning from my past, existing in the present and looking forward to a future that would reward all of this accumulated energy and effort.

December 6, 2021 — after a short trip to Las Vegas with my best friend I weakly strolled toward the gate that would get me back to San Francisco before the work day started. After frantically turning around at the security check point to use the bathroom for the fifth time that morning, I told my friend to move along and took my time (including another bathroom stop) to meet him just before boarding. Since March of 2021 my health had been deteriorating quickly. I was rapidly losing weight, got pneumonia, strained my back from lifting, had persistent iron deficient anemia, got COVID despite full vaccination and my Colitis symptoms were uncontrollably resurfacing. While I had been historically private about my health, the external impacts were obvious and my friends and family were rightfully concerned.

Instead of my bed in San Francisco, I found myself in a cramped, temporarily constructed room in a Las Vegas hospital after 9 hours in the ER waiting room with an occasional visit from a nurse to check vitals and administer another IV. I was transported from the airport to the hospital earlier that day after nearly fainting just before boarding the plane with a heart rate above 170. A CT scan revealed several enlarged organs which could have been a signal for many things including multiple forms of cancer. I was ready to get home but had to trust the initial recommendation to stay overnight while doctors could discuss the necessary next steps.

For the next two weeks I was treated for C. Diff. Colitis, which doctors assumed was the source of my current weight loss, weakening appetite and urgency going to the bathroom 15+ times daily. I was losing fluids rapidly and I only got out of bed to use the bathroom since each time I stood my heart rate would spike above 150. While I was comforted by my parents and sister who accompanied me after the first day of admission, fevers every night and severe dehydration even after C. Diff. was treated had us (including the doctors) confused and frustrated. There was an overwhelming sense of unknowing and a feeling amongst myself and my family that the current hospital did not have the resources or expertise to resolve whatever was going on. We were right.

My parents exhausted every resource at their disposal to transfer me to a hospital better equipped to diagnose and treat what the doctors in Las Vegas were failing to identify. They started with a loose connection to the best network of hospitals in the US: Mayo Clinic. Coincidentally my dad lives just outside of the Mayo Clinic in Jacksonville, FL and we were fairly close to Mayo Clinic in Phoenix, AZ. The reason for rejection was consistent across these locations, however. Hospital beds around the country remained filled with COVID patients especially with the rapid growth of the Omicron variant and transfers were currently impossible even within the most heavily resourced hospital networks. In a seemingly hopeless and potentially fatal situation, an email from the Mayo Clinic arrived in my dad’s inbox that suggested limited availability in Rochester, Minnesota — a 4.5 hour flight away. Entering a weekend so close to the holidays provided a serious challenge in lining up the necessary paperwork and gaining access to an emergency medical plane that could accommodate a body that required multiple IVs and close monitoring at every moment. It became abundantly clear that the timeline for insurance and paperwork transfers would put me at serious risk.

Just a few days before Christmas I arrived at the Mayo Clinic in Rochester, Minnesota via an emergency medical plane thanks to the relentless effort of my parents that pushed the expedited coordination between hospital networks. Totally depleted and mostly delirious, I was quickly hooked up to multiple IVs where I was administered blood and platelet transfusions (the first of 20+ of each over the next few weeks) while new doctors and nurses were catching up on my medical history and current status. Every blood test came back with dramatic deviation from healthy ranges and a quick scope of my colon revealed likely irreversible damage caused by severe inflammation. Systemic internal bleeding with platelet levels that reached a value of 2 (normal range is 235–371), I was transferred to ICU where it was determined within 24 hours that a high-risk emergency surgery was required while my body would be in shock to remove the entirety of my infected colon and to be able to diagnose the source of infection. In a complete trance, I can only remember a doctor somberly explaining to me that I might not make it out of this surgery and the anesthesiologist telling me that I was about to go to sleep for a while. I did not have the mental capacity at the time to think about death even though I was about to so closely approach it.

About 36 hours later I woke up to the watery, ocean blue eyes of an ICU doctor that I had befriended a few days earlier. Several doctors rushed through the door along with my parents, who were uncontrollably sobbing. I immediately started crying as the blue-eyed doctor tried to explain to me what I just went through, what’s to come and what they had been able to figure out while I was sleeping through the heavy dose of anesthesia.

The (very large) team of doctors at Mayo Clinic determined that I had a rare blood disorder called Hemophagocytic Lymphohistiocytosis (HLH) where my immune system attacks healthy blood cells which can make infections potentially fatal especially since these attacking cells had worked their way to my bone marrow. This combined with a rare fungal infection called Histoplasmosis had likely been impacting me for months before most of my organs almost completely shut down. The Mayo Clinic — which played a heavy role in developing modern medical records starting in the early 20th century — could only identify 2 similar cases in the history of medical records that could provide guidance for the treatment of this incredibly rare combination of disease and infection. Before leaving the ICU to start this treatment, the doctor that was there after my surgery requested permission to use my case to contribute to public medical records after I make it out alive. He explained to myself and my parents that treatment will still be very lengthy and experimental and that recovery would be far from linear, but it was the first time in several days that I was encouraged by the odds to stay alive.

Over the next few weeks, I felt as though I was experiencing life as a fish in a bowl too small. Everything was surreal and I was absolutely exhausted by the constant inflow and outflow of nurses and doctors. At one point I was utilizing 6 IVs while connected to breathing and feeding tubes and a catheter while only being allowed to occasionally suck on ice or a small sponge for hydration. I received two doses of chemotherapy treatment and extremely powerful antifungal IVs that were affectionally described to me as “atomic bombs” and “big guns” to kill this fungal infection before it could continue to spread to other vital organs. My spiritual daily routine and life that I loved so quickly turned into hell on repeat. My full-proof approach of self-discipline, control and independence had completely vanished as I was too weak to talk or even adjust myself in bed.

The tests and procedures compounded to a point where I anticipated each morning to bring news of another necessary biopsy or scan that would require using a slide from bed to an examination table since I was still too weak to move. Just a few days after being removed from the ICU, I woke up to a familiar doctor explaining that another infection had entered my bloodstream and — because there were so many potential sources — I needed to return to the ICU for the removal and replacement of my IV lines and further testing of multiple organs that could be the source. Trust the doctors was the only thought on repeat in my head as the beaming elevator lights overwhelmed my visual field on the way back to the ICU. Hell on repeat.

More powerful antibiotics and pain killers entered my bloodstream via fresh, painfully-installed IV lines stemming from my neck and both arms as I was removed from the ICU back to another unit. A few days later the Mayo Clinic implemented a single visitor policy due to raising COVID rates within the hospital network. My parents had been with me this entire time from Las Vegas to Minnesota, arriving each day at 6am and leaving at 9pm to ensure not a single minute of allowable visiting hours were wasted. Although they fought relentlessly for some form of exception, it was ultimately decided that my mom would go home. Daily video calls were met with mutual outbreaks of tears as the medical uncertainty compounded with no clear resolutions despite the combined efforts of some of the best doctors in the world.

Shortly after my mom left — still dazed and unable to concentrate on my surroundings — I tried to clear my throat while laying down and immediately began gasping for air. I was too weak to adjust my position and, for the first (and not last) time, I had enough mental capacity to be almost certain that I was about to die. I even contemplated that not being too bad of a result since living in my current condition was no way to live at all. Nurses stormed in to help sit me up and catch my breath after several minutes. A respiratory doctor came by shortly thereafter to perform an ultrasound and more tests to confirm that there was limited capacity of my lungs and potentially pneumonia but that it should be restored as I become more active and stay on antibiotics. Trust the doctors.

Mixed news started to arrive over the next several weeks on bloodwork trends that signaled improvement but also a slew of side effects from powerful medications. I no longer had fevers but while my body was still swollen from fluids I did develop an extremely irritating rash that was later determined — after a painful skin biopsy — to be an allergic response to an antibiotic. I was able to sleep maybe 2 hours a night during this period as I attempted to avoid itching via ice packs and topicals and was constantly woken up by nurses checking vitals and refreshing IV lines. I had no appetite at all as I was still being fed nutrients through IV, which ultimately was responsible for concerningly elevated levels of kidney enzymes.

Just a follow on social media would reveal that I historically have had a great relationship with food. Cooking was one of my favorite hobbies and experimenting with different ingredients and flavors sincerely enriched my life. Food provided me with the energy and physique that allowed me to remain happily active and contributed greatly to my overall sense of fulfillment even with complications related to Ulcerative Colitis. So quickly my relationship with food reversed to something that my body could not tolerate despite being absolutely necessary for my kidney functionality and survival. Another great source of enjoyment in my life was being transformed into one of suffering and disappointment as I wrapped up each meal only after a bite of oatmeal or sip of broth.

Several weeks after my emergency surgery I started receiving visits from rehabilitation doctors and ostomy nurses. This would be normal in preparation for post-hospital self-care and recovery, however there were so many medical contingencies that I was still not convinced that I would make it out of the hospital alive and certainly not anytime soon. It was still taking me multiple nurses and a walker to get out of bed to walk a 50 feet 3 times a day; I had not showered or brushed my teeth in weeks and I weighed under 100 pounds. Talk of returning to physical activity and being a potential candidate for in-patient rehabilitation (which would involve at least 3 hours of daily physical and occupational therapy) seemed premature at best, but it was refreshing to at least pretend that I could return back to any state of normalcy at some point.

Gradually I was taken off of a few powerful medications and doctors came with less dramatic news each morning. Some blood levels were improving, kidney functionality was still fluctuating but, for the first time, nothing felt absolutely urgent at least from a medical perspective. I vividly remember one morning waking up to 6 doctors, one of whom suggested that it’s time for us to develop a plan to leave the hospital. After over 2 months of transfusions, surgery, biopsies, over 300 blood tests, IV placements and experiences so close to death, my body survived after being pushed to limits that even the most experienced doctors were surprised was humanly possible. Immediately my mindset switched from being unsure if I’ll wake up the next day to being certain of my physical and mental recovery no matter the failure along the way. I knew that no marathon training analogy could encapsulate the challenge of rehabilitation ahead, but I would stop at nothing to continue living the life that I loved.

A final medical barrier was revealed before I could effectively transition to the state-of-the-art in-patient rehabilitation center just across the street from my current unit. The antifungal IV that was treating the Histoplasmosis was not sustainable for long-term maintenance. Not only was this a 5 hour daily transfusion that started at 4am, it came with nasty side effects including a “leaking” effect of essential vitamins and minerals that supplements struggled to keep up with. It was necessary for me to transition to an oral antifungal that I could be on for about a year to ensure that the infection that should have killed me stays under control. After a 5 day loading period and just a day before being released to in-patient rehab, a blood test revealed that my body was not absorbing this oral antifungal and that I was not even close to the therapeutic level needed to transition off of the IV. I was told there was one other option for oral antifungal maintenance but that I would nonetheless be transferred to in-patient rehab with the daily 4–9am IV infusion still needed during the next loading period.

Covered in 3 heated blankets (remember it’s Minnesota in January) after being thrusted onto an ambulance transport, I arrived at the Generose in-patient rehab facility on a Monday afternoon. Still too weak to get out of bed alone and just starting to walk short distances with a cane, I felt wildly unprepared physically, mentally and medically. I received my schedule for the first full day of rehabilitation: 1.5 hours of occupational therapy, 1.5 hours of physical therapy and 1 hour of recreational therapy. After barely moving for 20 minutes a day for two months with no self-care capabilities, the gravity of what tomorrow would bring was overwhelming but ignited a mentality within myself that I had never pulled from before. I was going to make it out of here and recover or I was going to die trying.

Wearing street clothes for the first time in what felt like forever, I carefully accompanied a physical therapist to the gym. The walk to the gym would be my furthest in weeks…but I still had 4 hours of sessions planned for the day. I had a few goals that I wanted to accomplish before being able to return home: I wanted to be able to get in/out of bed on my own, needed to be able to get up about 10 steps to get on a plane and, finally, wanted to be able to go to the bathroom, take a shower and get dressed without substantial assistance. I knew that medical contingencies and my body’s ability to absorb the new oral antifungal were entirely out of my control and that my focus needed to orient itself toward achieving these goals for my own survival. I stumbled. I fell. I cried. I doubted. I refused to give up.

5 days into rehabilitation, the loading period for my new medication was complete with news of an interesting test result. My body had partially absorbed the medication, but not enough to reach the therapeutic level necessary to stop the 4–9am IV. Doctors explained that they would try to increase the dosage just one more time, emphasizing the possibility of returning home with the need for 20+ hours a week of IV treatments and bloodwork for up to a year. Apply your focus to what’s in your control.

I worked my ass off for the next few days and started to make progress toward my exit goals. While my efforts did not result in the ability to squat 300 pounds or easily run hungover half marathons like they did a year prior, being able to (sometimes) get out bed by myself, walk for more than just a few minutes without assistance and heavily leverage railings to get up a few steps felt just as sweet. More importantly, I started to feel more and more like myself each day. I was able to follow a routine, have enough concentration to read and meditate effectively and regained the capacity to hold conversations where the subject matter was not always about another medical emergency. Incremental progress leads to small wins. Small wins lead to milestones. Milestones lead to a fulfilling life.

After about 2 weeks of in-patient rehabilitation, it was declared that — from a physical and occupational therapy perspective — I was ready to return home. There was one major blocker: the result of the loading period for the higher dosage of oral medication would not arrive until a day after my release date. The rehabilitation center was not a hospital and therefore could only admit me for the duration of a recovery period that would allow me to return home safely. We scrambled to find reputable doctors near my mom’s house in the Nashville, TN area and prepared appointments for IV infusions and bloodwork. A PICC line was installed in my right arm in preparation for my return home and bags full of medication, ostomy supplies, cards, gifts and clothes were consolidated. No longer needing to count calories, I gained permission to order delivery and joined my dad in a common room to eat, watch a movie and somehow process our joy and fear of the unknown next phase of recovery.

I got up those damn plane steps in zero degree weather and rewarded myself with two Chick-fil-A meals during the 1.5 hour flight to my mom’s house. I stared out the window in a complete trance after not being outside or feeling direct sunlight for over 2 months. Even though I knew my mom would work tirelessly to ensure my safety and comfort, I was still terrified to leave. I was very weak, was at high risk of falling and required assistance to get up stairs and from most chairs. After being highly dependent for so long, the burden of my limitations would entirely be my own rather than having the immediate support of world-class doctors and nurses.

At 4am the following morning, I woke up to test results rather than an IV transfusion. I was shocked. My new medication was at 50% above the therapeutic level. Forgetting what time it was, I immediately texted my parents and my mom rushed into my room for a quiet celebration. No daily bloodwork or transfusions. No nasty side effects. No PICC line needed. No excuses to not focus entirely on rehabilitation.

Just under 3 weeks out of in-patient rehab, I write about this experience 25 pounds heavier, far more independent, stronger and overwhelmed with gratitude. The work won’t stop so long as I love my life and I’ll love my life so long as I still have it. More recently you might find me crying a bit while folding laundry or cooking my own meals but you can be confident that they are tears of pure and absolute joy. There is still a lot unknown regarding my recovery period and future, but an immense appreciation for the present allows me to experience each moment with perspective and peace. In the words of the best rapper alive (Kendrick Lamar) — I love myself.

UPDATE 4/5/22: Read I’m Freaking Alive! (An Update: Bet the Under)