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On June 4th, 2017, at 1:30AM, I was rolled into surgery. On the same day, a family made the difficult decision to let a loved one go, but also to save 8 others lives—including mine.
Fast forward to today, August 1, 2017, and I am 10 days away from turning 21.
This was my second double lung transplant: I knew what was coming. What I wanted to say when I woke up, who I would want there, and most of all how hard I would have to work – I knew these things were coming.
24 hours after surgery, I was sitting on the side of my hospital bed. I had a feeding tube, a breathing tube, a central line in my neck and chest, four chest tubes, and 57 staples holding me closed. To say the least, I was a little groggy. I pushed through and was able to sit up in a chair for 9 hours! It was tiring, painful, but overall a breath of fresh air (pun fully intended).
When it came to pain, it ranged from a little pin prick to someone stabbing at my ribs repeatedly. The hardest part was managing the pain. Morphine? Sure, if I wanted to sleep and get a quick high. Tylenol? It would take off the edge, but I could only have it every 4 hours.
Oh, the love hate relationship with morphine… I had been put on a small dose months before transplant to help deal with my anxiety. The downside? It made my breathing more shallow; I was constantly begging for more oxygen when I really didn’t need it, making me even more anxious. To combat the anxiety, even more morphine. An endless loop ending in an addiction.
I’m not proud to say it, but I became addicted to morphine. To this day, I still crave the high it gave me. In the beginning, it would calm me down and I was able to get the sleep my body ached for. Then, I started needing higher doses more frequently. When I was admitted to the hospital permanently, they started running the morphine through my IV rather than just giving me a tablet. It became the best thing I had ever experienced. I would count down the minutes until I was due for more.
To put into perspective just how little morphine I was getting, when I’ve gone to the hospital with migraine I would receive 4 mg – 8 mg of morphine. In the hospital? 0.05mg-2mg, just going to show how little of a drug can become so powerful. When they started to taper me off the morphine, it was absolute hell. They started using Gravol and Benadryl to help combat my anxiety and help me sleep. Then, I stopped having any reaction to these meds. My body became used to them and developed a tolerance. I was at the end of my rope once again. I started to ask for morphine again; the doctors knew how sick I was, my family knew how sick I was, and most importantly, I knew how sick I was—except now, my carbon dioxide levels were getting too high. I couldn’t have any more morphine. I went through scathing withdrawal—the scariest thing I’ve ever experienced.
Note: when your carbon dioxide levels are too high, you tend to get a little loopy. I was having crazy, lucid dreams that I thought were real. Nurses had trouble waking me up and I was forgetting what I had done that day, confusing my dreams with reality. This is when they wanted to start me on Bi-Pap. With my first transplant, I loved using the Bi-Pap machine. I found it relaxing and would fall asleep with it on. This time, I would kick and scream and push anyone away who tried to put the mask on me. It was suffocating and made me feel extremely claustrophobic. I am sure there are respiratory therapists out there who hate me because I wouldn’t listen to them, but I was in a constant state of anxiety. What could I do?
Depression, anxiety, and OCD make everyone react differently. When it came to my depression, I didn’t want to eat, leave my room, talk, or even have the lights on. I wanted to have my own pity party. Look at where I was, waiting for my second double lung transplant in two years. Yes, I was extremely grateful I got two extra years, but now my body was failing me when I needed it the most.
I was in the middle of getting my pre-health certificate and running a business. I didn’t have time to stop and spend who knows how long on waiting for new lungs. I had a psychiatrist visit me just about every day. The one question she never asked me was why I was depressed.
You can’t always explain why you’re depressed; I couldn’t even identify my triggers. The environment I was in was depressing enough.
People were dying in the rooms next to me. Blank walls with nothing but signs to remember to wash your hands.
Overall, my anxiety was the worst part of my mental health. I couldn’t identify my triggers; I never knew when I would have a panic attack. My jaw would lock, I would go silent. I couldn’t handle talking or exposure to light, and my legs would begin to shake. Gravol and Benadryl became the go-to the nurses would push to calm me down. My OCD definitely contributed to my anxiety. If I didn’t have my meds by 9PM, I would be an absolute wreck. I would be calling the nurses station to see where my nurse was with my meds; it didn’t really make sense because all patients needed their meds at 9PM anyways. I started wanting to get my day over sooner with and looked forward to my cocktail of sleeping meds. Eventually, every nurse on the unit knew my night time schedule and I was getting my meds at 8PM. Finally, my mind was at ease.
As the days go on, I realize just how much stronger I am from all of these experiences. I remember the day I realized I was so close to death. So close to giving up, I actually asked my doctors to intubate me and put me in a medically induced coma. I couldn’t fight anymore, but I did. It wasn’t long after I got my call for lungs. I had my favourite nurse that day and we were not expecting the doctor to come and tell us the news; we were in complete and utter shock. When I say we, I mean myself, my mom, and my dad. I called my sister and asked if she wanted to see me before my surgery, catching her off guard she asked what surgery. When she got there with my nephew and brother in law, I finally realized just how close this was to happening. My nephew was more interested in all the medical equipment, but I was able to get some snuggles by bribing him with Goldfish.
August 1, 2017, I am living in an apartment across from Toronto General Hospital. I am there three days a week for physiotherapy. This involves walking on a treadmill, doing a variety of arm and leg exercises with weights, and spending some time on the bike. As a personal trainer and someone who was so active before transplant, it is extremely stressful. I want to push myself harder but I know it’s not safe enough yet. My lung function is tested every week and is continuing to increase. I have blood work every week and all my levels are normalizing and checking out great! I get an x-ray every two weeks along with attending clinic. My lungs are becoming clearer and clinic visits mostly consist of waiting 3 hours for a doctor to tell me everything is perfect. After that, I’m good to go!
This isn’t meant to be an easy read: this is reality and as such is never easy to mentally grapple. This is the reality that thousands face everyday. Please feel free to share this with your loved ones, friends, groups, acquaintances, anyone who needs a reason to register as an organ donor.