A Scarred Body and a Scarred Past


It’s not quite seven am, on a… well, I’m not quite sure what day it is. The board on my wall says Monday, but I know it’s not Monday. My computer tells me it’s the 18th of April, but to know the day I would have to open my calendar and the day of the week doesn’t really matter that much to me. They all tend to be the same. I’m in a rehab facility trying to get stronger from a double lung transplant. In eight days I will have been in the hospital for five months. Five long, arduous, difficult, sometimes scary months. What do you miss in five months? Who do you miss in five months? Has your life progressed at all or are you doing the same things you were five months ago? If you have kids, would you miss them grow? Would you miss their sporting events, their school concerts, their parent-teacher conferences? Would you miss their laugh, their hair-cuts, helping them with their homework, playing with them? If you have pets, would you miss them? Would you feel as if you missed out on nearly a half of year of your life or would you feel like things didn’t change in that time? For many people, things don’t change in that time, before my transplant things didn’t change much for me in that time. I was going through life trying to survive it more often than I was living it.

The first couple of months I wasn’t thinking about much, I was worried about my friends and family who were worried about me. I was very sick, switching from one hospital to another because I was too sick for one to help anymore. Switching from here to there because I was too sick for one floor or another. I don’t remember much of that time, what I do remember is after transplant complaining about the fact I was so thin and weak to my doctor and him telling me, “just a couple of weeks ago you were the sickest person in this hospital and this hospital takes all the sick people from all around. We have 1,000 beds and you were the sickest person here for a while. We can’t believe how well you’re doing. You were practically dead.” It wasn’t something I didn’t know, it was just something I wanted to get over as quickly as possible. Something I wanted to put behind me and get back to my old self. I never thought I was going to die like everyone else did, I knew my will was too strong, my mind too stubborn. However, I felt a bit ungrateful at feeling impatient with my recovery. It’s been weeks since then and I’m still feeling a bit impatient and frustrated at my recovery.

I think people think a lung transplant is the end of a long road. I think I thought it was going to be the end of a long road; however, it was the beginning of an equally long road. The recovery has been tough, I woke up unable to move my legs. Unable to move at all except my arms and even those didn’t quite do what I wanted them to at first. I thought I would be able to breathe when I woke up, like the viral video going around. That wasn’t the case either. I did have a trach still - which was doing some of the breathing for me - but I was ready to try out my new lungs. Someone died so I could live and I wanted to be so grateful for them. When they let me try breathing on my own they certainly worked better than my old lungs did near the end, my old lungs didn’t work at all. I was on life support for about five weeks before my transplant, my lungs had no room for air, they were completely scarred up and full of puss and mucus. Leaving zero room for air. I couldn’t oxygenate my own blood so I had a machine called ECHMO doing it for me. It took my blood out, put oxygen in, and put the blood back in my body. I didn’t even need to take breaths, it was a bizarre sensation. Usually I took breaths anyway, just habit, but sometimes when I did I could tell I wasn’t getting air and I would feel like I was hyperventilating. It would freak me out and I would start breathing faster and it would make me feel worse and spike my blood pressure. They had to give me something to bring my blood pressure down and talk me through breathing. My nurses were some of the best I’ve ever had in those two and a half months I was there. I’m not sure if I eventually stopped trying to breathe or not. After a while I mostly slept, actually most of the time I was there I mostly slept. Needless to say I don’t remember if I eventually stopped pretending to breathe or if my body kept doing it automatically.

After I woke up from surgery and still today I don’t know how to breathe with my new lungs. It sounds crazy, right? It seems so instinctual, but it’s not when you haven’t done it your whole life. As long as I can remember I only had around 40% lung function. I kept it there for awhile, but the last several years they’ve been in the low 30’s or high 20’s. Which means I haven’t used a large portion of my lungs… well, ever. What that means is my ribs weren’t used to moving when I breathed, I just breathed into the top of my lungs. The top of my lungs is where they cut me open, cut my sternum, then wired, screwed, and stapled me shut. So my chest and sternum are very tight, making taking a deep breath into my upper chest difficult. Now that I can use my whole lungs, my ribs are very hard to move. Pushing them out of the way to use my full lungs is like lifting heavy weights with any other muscle. It’s a work out and it makes me short of breath, strange huh? Breathing is a work out and makes me short of breath if I do it right. I practice as I would any other exercise, but I have to really focus on my breath. I can’t do it without thinking yet. Hopefully soon enough breathing with all of my lungs will just happen naturally. They say it will, they say so many things will get better. I’m keeping the faith.

Right now life is tough for me. I didn’t expect to get so sick and be so sick last December. I had been feeling ok. I’m annoyed with myself for not staying healthy. I wanted to push off lung transplant for as long as possible. I suppose that’s exactly what happened in the end, I couldn’t wait much longer for one. They say I probably wouldn’t have made it another day. I just can’t help but think I could have done even more. I wanted the lung transplant to fix me, I wanted to fight my whole life to get to a point where the fighting was worth it. Where the fighting leads to an end where I could actually enjoy my life. Where the fighting lead to no more fighting and I could just live like a semi-normal person. A person with a scarred body and a scarred past but a bright future. So far I was wrong about that. I guess some people are just meant to be fighters their whole lives. Don’t get me wrong, I’m ecstatic to be alive. I love life and will never give up fighting, I’m happy even through the fight.. but sometimes fighting becomes tiring and right now I’m tired.

#lungtransplant #cysticfibrosis #hospital #death #insightful