When your back is against the wall and there is nothing you can do except to hope and pray for a miracle, you enter a psychedelic state of mind. You become at peace with the inevitable. You begin to cherish and reminisce about every moment in your life that leads to this very instance.
In October 2020, I began to say my goodbyes to all my loved ones for the last time.
The pandemic was still pretty new to everyone; no one knew how it would impact people with CF and transplant patients like me. At the end of May 2020, I had gone to the emergency room because I wasn't feeling well at all -- fatigue, lack of appetite, and little sleep. Not long after getting triaged my vitals started tanking -- my heart rate became very rapid and my breathing became very labored. The nurse set me up with some oxygen but, still, my stats were not getting any better. So, the on-call doctor admitted me and sent me to a general ward to be looked after.
I wasn't even on the general ward for one full day when my nurse realized that I should be admitted into the major surgery intensive care unit (MSICU) because I couldn't eat or do basic things without running out of breath, even with high-flow oxygen. Upon arriving at the MSICU the head surgeon immediately put in the order for me to be intubated, to relieve stress off of my body and my lungs. The fear was that I had become sick from COVID-19, so the surgeons kept testing me hourly while treating me with broad-spectrum antibiotics, hoping that it would improve my health status.
After a few days of being intubated my health improved. I was then moved to the step-down unit to further my antibiotic treatment. I then underwent plasmapheresis (removing and replacing blood plasma) treatment and was back at home two weeks later.
The doctors concluded that organ rejection was the culprit. Though my symptoms had ceased, the damage that rejection does to an organ is irreversible. This was the catalyst of what was to come a couple of months later.
In mid-September 2020 I woke up one morning with severe shortness of breath, almost gasping for air. After 10 minutes of struggling to catch my breath, my younger brother called an ambulance for me. I arrived at the hospital and was stabilized with high-flow oxygen, and my doctors told me it was time to start doing another workup to be listed on the transplant list once again.
This news was devastating but understandable. I was not scared for my own sake; I was scared to tell my family, my friends, my loved ones. I felt like I failed them. To process this, I met with a spiritual advisor. This was a game-changer for me because he made a huge impact on my life moving forward.
Weeks went by with me being in the hospital and trying to get considered for the transplant list. By mid-October, things took a turn for the worst. My vitals tanked once again, while being fed 10+ liters of oxygen -- and my lungs were not absorbing any of it. The on-call doctor ordered emergency intubation and transferred me to the MSICU, where I would stay for the next three months. The doctors decided not to proceed with any transplant workups because they believed that I wasn't strong enough to withstand surgery, let alone survive the possible wait time to receive a transplant.
At this point in my life, all they asked was, “How can we make you comfortable?” I watched enough movies and TV shows to realize that was code for “we cannot do anything more for you.”
This was the first time I've seen my father cry in front of me and the first time my brother cried in front of me while holding my hand sitting at my bedside -- we all felt the same feelings, but I was not sad or distraught. I was eerily at peace. I knew what was ahead, based on what the doctors were saying. The one thing I was afraid of was that the people closest to me did not know how much I truly loved them. Time is a wicked concept; there is so much of it, but never enough.
By a stroke of luck, a new surgeon was placed on the MSICU floor and looked at my file. He ordered a physical test for me as a high priority. The physiotherapist came in and moved all of my machines and told me to stand up for as long as possible. I contested as much as I could while being intubated and wired up. But, he was persistent, and I knew deep down I had to trust him. After being bedridden for a couple of months with no leg movement whatsoever, I was able to stand with some aid for a total of 56 seconds. I felt so sick to my stomach that I ended up vomiting and passing out. After seeing the results, the surgeon ordered consistent physiotherapy for me. The goal was to reevaluate my prognosis. After more than a month of being intubated, the doctors felt safe to extubate me and put me on prolonged cardiac and respiratory support.
With constant physical therapy, I made the transplant list on the Dec. 9. My first call was on my birthday, Dec. 17, but it was a false alarm. My second call was received on Dec. 25 -- this was the real deal! A month and two weeks later I was back home with my family.
It's amazing what a full 12 months can bring you. I learned that time is everything, but there is never enough. If you love someone, let them know every chance you get, and do not miss a beat. Find love in its purest form; your heart will recognize it. Life is nothing to take for granted. It's a short gift that must be cherished to the fullest.
Love the life you live, live the life you love. Breathe easy.
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