December

I fell off the blogging wagon as soon as I got home from my transplant surgery. I apologize for not keeping you updated, but it's been a whirlwind of a time and I'm only now getting my head around it all. Truthfully, I don't know if I will ever get my head around this new life and this whole experience of surgery, recovery and ultimately, a new me. The medical team can only prepare you so much for what is to come. They can't tell you how it will pan out or how you will feel about the experience.

We made it through a wonderful Thanksgiving and my mom, Tom and I were rolling into December with our heads held high. I had finished home IVs and was going to regular clinic appointments, getting blood work and X-rays as ordered by the doctors. I was even given the opportunity to see my old lungs. The hospital keeps the old lungs for a couple of months to do research on them. They also give patients the opportunity to see and inspect their old lungs. It's not something you can do if you have a weak stomach, but I truly loved it. I was able to touch them and even squeeze some mucus out of them. I apologize for the gross nature of that sentence, but I was fascinated my them. They were truly sick lungs and I just kept wondering how any air was getting in and out of them. Each airway was filled with mucus and very thick mucus at that. I will add pictures to the end of this post if you would like to see what my old lungs looked like at the end of their life.

During the second week of December I started to feel quite lethargic. None of us could pinpoint what was wrong so we just chalked it up to recovery from such a major surgery. On December 11th, I felt like I got hit by a Mack truck. My body was sluggish and I just felt like I had some kind of virus. My whole body was heavy and achy. Moving from one sitting position to another was nearly impossible. That afternoon I took a shower to try and shake off whatever I was feeling. As I did every day, I went up close to my full length mirror to investigate my scars and make sure they were healing as they should. That day the top of my scar looked a bit strange, it didn't look so white and looked more opaque, thin, with a hint of yellow showing through. I didn't think too much of it, and continued with my shower. I sludged my way through the rest of the evening and once more checked my scar after dinner. At this point I thought I saw a tiny pinprick of a hole at the top of my scar. I decided to push the skin around this small bubble forming and before I knew it, pus was ever so slowly coming out of this hole. I yelled for my mom and Tom and told them I had an infection in my scar. They tried to downplay it and even said it's probably a zit. My instincts were kicking in big time and I knew this was nothing to ignore. It was too late to do anything that evening so off we went to clinic in the morning. After much back and forth discussion with my medical team about whether this was an issue or not, one of the surgeons came to look at it and swabbed the pus to test for infection. In the meantime they ordered a CT scan and we found fluid behind the scar and sternum. At that time it was determined this was probably serious and I needed to be admitted for IVs.

December 12th kicked off an eight day stay in the hospital trying to determine how big this infection was, how much infection I had and how we were going to treat it. There were so many unknowns. The more I stayed in the hospital, the more infections they found. We did test after test and with each X-ray, blood draw and other imaging tests I had performed, we had different and more confusing answers. The tears and anxiety came almost daily. It was a real down time for me and my support system. We were fried both emotionally and physically. We tried to keep our spirits up when we could ... Tom and I got delirious one evening and made this very ridiculous turkey-based Christmas video. We were so crazed we watched it over and over laughing at me every single time.

All of these test results showed that I had bacteria growing in my scar. I also had some in my lungs and the final blow was finding bacteria in my blood. A blood infection is not something to take lightly. My team felt it was best to call on the infectious diseases team to help come up with an effective antibiotic regimen to treat all three infections. I am a tricky case because I am allergic to many antibiotics and I am very resistant to many drugs. My body had its work cut out. After eight days in the hospital, the team said there were no more tests that needed to be performed and now I just needed to get rid of the infections. I was discharged with IV antibiotics which had to be administered for 24 hours every day.

I was released just in time for Christmas and for the arrival of my dad and brother. We had a very good Christmas and it was a great time to reflect on what I had been through and what the donor family was going through during the holidays. It was never far from my mind that they had just lost their loved one and the holidays for them would never be the same.

December came with a lot of uncertainty and a wake up call that this was not the smooth sailing recovery that I had encountered right after surgery. In the next part of this series I will cover the month of January, which marked the beginning of a new chapter. My mom returned to Chicago after Christmas, so it was now just Tom and I dealing with recovery by ourselves.