Most of last summer was spent either in a hospital bed or lying on my couch — the couch I had watched my cat dying on just months before. I wasn’t in much better condition than my cat. I thought I was defeated, broken.
The most activity I had in that time was my participation in Great Strides, the CF Foundation fundraiser. That slow-paced walk of 1.75 miles (it felt like 175) ended with me throwing up all over the path. Doctors were firing antibiotic after antibiotic, to no avail, at a phantom illness tearing its way through my system. I even ended up losing all my hearing. Deaf and lethargic, I didn’t feel like fighting anymore. You know that saying, “I have CF, but CF doesn’t have me?” It felt like CF had me.
The culprit turned out to be a brewing infection, Candida. While my care team was searching my lungs for answers, the fungus was stealthily swimming its way from my port-a-cath to the rest of my body via bloodstream. The fungal ambush was set.
One night last June, chaos was unleashed. My system plunged into septic shock and I nearly died. When I finally awoke from the hallucinations and ICU psychosis, it was with a new clarity. I had a Pyrrhic victory: The damage to my lungs and other organs was severe. But that taste of triumph fueled me for the months to come.
I realized my body was a fighter and that it was time for my mind to join it. It wasn’t time to die. It was time to kick harder against CF than I ever had before. With that thought in searing focus, I moved from Hawaii to California’s Bay Area to seek a double-lung transplant — a gift I received on the night of Jan. 15.
Before all this, I wasn’t exactly the role model CF patient. I actually had a reputation at my hospital for being stubborn. Middle and high school years had me dumping my G-tube formula down the toilet, and letting my Vest and nebulizer collect dust. My self-care got better in college, but I still wasn’t giving my 100%.
With the writhing tendrils of CF choking out each win by presenting new problems to divide focus, it was difficult to keep motivated. So, yeah, I made mistakes. I didn’t take care of myself like I should have. What better way to learn from your mistakes than to pay the consequences? While the port infection wasn’t necessarily my fault (I swear, I sanitized plenty!), I could’ve done more to keep myself healthy beforehand. That’s the purpose of this column — to share hindsight lessons and what it is that makes me the joyful man I am today.
This summer, I feel both physically and mentally victorious over CF. I regularly go on adventures, I’m gaining weight, and I’m eating healthily. Most importantly, I’m doing it all with a smile on my face — this, despite me having a history of anxiety and panic disorders. Of course, transplant makes all of that much easier today. But this lifestyle of efficiency and joy began last July, after the fateful ICU incident and before the transplant. While my health was at an all-time low, I was living better than I had in years.
Check back weekly on Tuesdays to hear more of my story and how I came to see the world as glass half-full (of mucus). I promise I won’t stick in too many bad jokes like that.
P.S. My family bought a new couch.
Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.
We are sorry that this post was not useful for you!
Let us improve this post!
Tell us how we can improve this post?