Going trough a double lung transplant and subsequent decortication of both lungs was without question the most challenging event of my life.
I've read many recounts of people who woke up from transplant amazed at the new ability to breathe. I did not experience this. Having had extremely poor lung function for many years I had developed breathing patterns that compensated for that. I took frequent shallow breaths. I did not know how to breathe diaphragmatically, something that comes naturally to healthy people. Habitual shallow breathing, the discomfort of having chest tubes, infection brewing, all these things made it difficult to feel like I had bright shiny wonderful working lungs. I didn't really bond with my new gift for a while. Don't get me wrong, I was very grateful, but I had an inkling these lungs didn't feel at home and weren't ready to be friends just yet.
I continued to require oxygen with activity when I was discharged from the hospital. Not what I had hoped for. I was very weak on my feet and had to use a walker. I still had zero appetite, almost 100% of my nutrition was via feeding tube. I couldn't take a shower, but I was out of that hospital. I was not attached to wires and could sleep in my own bed. It may not have been quite the scenario I had envisioned, but I knew the worst was behind me and I had survived. I got through some pretty difficult days because of more love, support and prayers than I knew possible.
I was not able for many reasons to do much communication via social media while in the hospital. I'm always amazed when folks update on their condition 2, 3, 4 days out. Heck, the whole time I was in the hospital, I couldn't coordinate my brain, eyes and fingers to read or update facebook. Thankfully during that time my sister did an amazing job of sharing updates and petitioning for prayers when I was at my worst. No one asked her to do this, but it was surely a need she filled and I have only recently gone back and read and realized what a good job she did. Thank you Erica for taking care of that when I was unable and Mitch really did not have the time.
The first order of business upon settling back in to the apartment, was organizing my massive supply of meds. Kelli took care of that because honestly, my brain was still not functioning at 100%. If you're wondering if I have to take all those pills, the answer is yes. Some of them I take multiples of, multiple times a day, for a total of around 34 pills a day. At first it was a time consuming task. I swallowed them one at a time. Now, I just throw back the whole handful. A handful in the morning, a few at lunch time, dinner time and another handful at bedtime.
I had a clinic appointment the day after discharge and to my delight the doctor removed my trach canula. Just that simple, he deflated a little collar that kept the tubing in place and just pulled it out right there in the office and covered it with some gauze. There was a hole in my neck, big enough to stick your finger in, that he just covered with gauze!. The resilience of the human body never ceases to amaze me. Mitch was a little concerned that no stitches were required to close a rather good size hole in my neck that leads to my trachea. It is a little mind boggling to think that it just heals on it's own. I do have a little scar, but the hole is completely closed. It only took a couple of weeks for complete closure. Wow! Just, wow! I'm telling you, the wonders of God's amazing creation, and the miracles of modern medicine... I'll never stop saying WOW!
I was looking kind of rough, I weighed 87 pounds and felt more like an 80 year old. Mitch pushed me in a wheel chair at the clinic and at the apartment I used a walker. Only for a couple days inside then I was able to navigate the apartment slowly. I had to wash my hair in the kitchen sink, because I still couldn't shower. Let me back up here a bit. So, I think I mentioned in one of the previous posts that I went a long time without washing my hair. From November 21st to January 6th as a matter of fact. Initially, my hair was way down at the bottom of my list of concerns. Luckily for me, I happened to get it cut and colored the day I got the call. It looked pretty good the first couple of days. Then bedhead began to set in.. It was sticking out in all kinds of crazy places, but not terribly greasy till a week or so in. The nurses provide you with a cap that is heated in the microwave. It looks like a shower cap but contains a solution that is supposed to clean your hair. I'm not sure what it did to my hair, but clean, it was not. We tried this several times over the next few weeks. Finally we had to call in the pros. Sometime in early January I saw myself in the mirror for the first time. YIKES! Not my best moment. I didn't recognize the gaunt, pale, person looking back at me. My lips were chapped to the point of peeling, I had huge dark circles not just under, but all around my eyes. And that hair. You can just imagine. On the wall in my room was a flyer for a gentleman who will come to the hospital and wash, dry and style your hair. Cut it too if you so desire At that point, I didn't really care what he charged, I just wanted my hair washed with real soap and water.
Boy, that felt better!
So, back to life at the apartment. I came home on a Wednesday, Thursday I had clinic and Friday it was back to pulmonary rehab.
I was a different person than the last time I was there. I had to use the walker to make my laps around the track. I was still walking very slowly and using oxygen. I really wondered if I would ever feel normal again. When you are knee deep in the middle of something, it's hard to see change on the horizon. I was in much worse shape physically than I was in November, just before the transplant. I tried not to be discouraged, but I really thought I would feel wonderful and be breathing big, deep breaths, and really feel like a new person by this time.
I only used the oxygen for a couple days after discharge. The mind is a powerful thing, and I believe my mind convinced my body I still needed oxygen.
The first weekend I was home was wonderful, Alyssa, Casey and their families(minus one sweet Harper) came to stay for the weekend.
(Sawyer wasn't drinking the red bull, just carrying around an unopened can because he wants to be just like his daddy.)
Nothing helps to establish your center of gravity like being with your people. The ones you love and who love you.
Several of my rehab buddies who were a little further along in their recovery told me, one day you will just turn a corner. You will begin to feel like yourself again and really begin to enjoy this gift. These precious lungs. That's exactly what happened. I think I was about 2 or three weeks past discharge, and I felt myself turning the corner. Kelli had gone home for a week and said I was a different person when she returned. I was eating and gaining weight, I had kicked the walker to the curb and for the first time I was really able to begin to fully appreciate the miracle that had taken place in my life.
I think about that time my staples finally came out. I had no idea they left those things in so long!
I continued pulmonary rehab and saw improvements daily. The oxygen gone, the walker- parked, staples out, which meant I could SHOWER! Hallelujah!
I had weekly clinic visits and each week I was stronger than the previous week. At one point, I asked what my number was. Where I fell in line of the number of lung transplants performed at Duke.
This chapter of my journey neared it's end when I attended clinic in late February. The doctor said do you want that feeding tube out? And I said heck to the Y-E-S! Once again, right there in the office he snatched that tube right out. I have to say, it smarted a bit. Maybe more than a bit, but it was over quickly and the last hospital accessory was gone! The doctor said when I finished my 23 sessions of rehab, I could go home to Autryville if I wanted. Yes, I wanted! I was so ready for home, but surprisingly a bit nervous. It felt a little scary to be leaving the protected little bubble I'd been living in for 5 months, but the last weekend in February we left our Durham apartment and headed home. Home to a new life. A gift from God and an anonymous hero.
The road to get here was full of bumps and twists and turns, but I wouldn't change a thing. Not an hour of a day goes by that I don't marvel at how different my life is. How full and beautiful and wide open with possibility.
I have written a letter to the donors family, trying to adequately express my deepest gratitude. How do you thank someone for giving you life and at the same time express genuine sympathy, I haven't heard back yet, but I hope to. I want to know a little about this person I call hero. Most of all, I wanted the family to know I will do very best to live this life to the fullest, never taking for granted the miracle that it is. I don't know why God chose me to receive this gift. I'm so undeserving, but so very grateful.
I came home to a yard full of yellow ribbons. With tears in my eyes and a heart so full it felt as if it may burst, I stepped into the next phase of this journey.
The story continues and it just gets better and better!