My Transformation (part 1)

I think that I am still dreaming and at anytime I will wake up. Was it just 3 short years ago that I started to become sick? Not even 2 years ago that I was diagnosed with Bronchiolitis Obliterans and was told I would need a double lung transplant. Was that me? I think it was...however, it was the old me. I am now someone totally (but not completely) different from who I used to be. This is a good thing, because I have learned some pretty valuable lessons along the way. My eyes have been opened to see who people really are. Who will be there for you when the times are really tough...and who really isn't there for you when the times are tough. I do feel really blessed with family and friends who have been there helping, supporting and most of all loving me, Doug and our kids along this crazy journey. Doug and I still just cannot express our gratitude enough. We have found a loving church family that is very important to us. If it weren't for finding our church, I don't know if I would've found God again and I don't think I could've made it this far on my journey if it weren't for them (or more importantly, Him).

So on July 17, 2012 at 7:25 AM I got "The Call" from Dr. Budev at The Cleveland Clinic. One of the coordinators had called and asked how I was...told her I was 'hanging in there" and she said she had Dr. Budev on the line. Dr. Budev greets me and tells me that she has a set of lungs available to me if I wanted them. She told me the lungs were from a young woman and that she had been exposed to Hepatitis B. Normally when an organ is made available to you, you don't have a choice as to if you want it or not. In this case, with the donor being exposed to Hepatitis B I had the right to decline them. Dr. Budev went on to tell me that the donor had been treated and was not infected with Hep B, that she was immune to it, but that it was possible that I could contract the disease later. She told me that she didn't see it as a big issue and that since we already knew about exposure it would be "easy" to treat if need be. She went on to say that with my rare blood type and body size that it may be awhile before another set of lungs would become available. I told her that I would take them. She told me to be at the Clinic between 11 and 12 so I could get prepped for surgery.

Doug and I quickly got the kids up...called his parents to come get the kids...and finished up last minute packing before we hit the road. I was excited and fairly calm most of the way to Cleveland. I was texting and calling everyone. As we got closer to Cleveland the more anxious and nervous I got. Just to think that in a matter of hours I could possibly be getting "new" lungs. I was also thinking about my possible donor and wondered who it was, how they had passed and the emotions that their family was going through.

We arrived at the main building close to noon. Doug got me in a wheelchair, hooked up my 5L of O2 and we were on our way to the 5th floor...Cardiac ICU...to get me prepped for surgery. We had gotten on the elevator and I asked the man close to the floor buttons if he could press 5 for me. He said, "Sure thing"  and pressed 5. Doug wheeled me off the elevator and as the doors closed behind us he said, "That was Jerry Springer!" Ha! Thinking back to it he was right! We got a good chuckle about it and I was hoping that this was a good omen. :)

Sitting in ICU we waited and waited and waited some more. We were told surgery was scheduled for 10 pm, then it moved to 10:30 and we were told that there were "issues" with the OR at the donors hospital. My friend, Jody, wanted to come and visit and I'm glad that she did! She helped pass the time as we chatted. She was also there when I got my next call from Dr. Budev. It was 10:00 (still July 17) when I had heard that our church family was gathering together at church for a prayer service for me as they thought I was going into surgery around that time. Doug had also told me that he had been getting calls and texts and facebook messages about people from all over saying prayers for me, the doctors and surgeons and the donor. I could definitely feel God's arms around me...I felt a sense of peace at this time too. A little after 10, Dr. Budev called me and told me she had good and bad news. She said that the bad news was the lungs that she had called me about earlier that morning were no good after all. She said that the team had gotten there and there was more damage then suspected so they didn't take them. All I said was, "Oh, OK." Dr. Budev went on to say, "The good news is that I have another set available for you and they are perfect!" I started to cry. She told me that this very rarely happens...having 2 sets of lungs become available within a short amount of time....let alone my rare blood type and body size. She told me this was a miracle and the lungs looked absolutely wonderful and I would be in surgery at 6:30 am. I thanked her and hung up. Doug and Jody were both there looking at me anxiously waiting to find out what I was told. Prayers were being answered!

I tried to sleep, but of course it wouldn't come. About 10 till 6:00 am, they came to get me for surgery. Doug walked with us out of the CICU and I thought maybe he would be able to stay with me a little longer, but nope. :( I was starting to get more anxious (and scared) and tried to think of other happy things. Once in the OR, I tried looking around, but then didn't really want to. I was put on a really small bed and I remember thinking I was going to fall off of it during surgery. :) One of the women nurses in there had made eye contact with me and I talked to her. I think she could sense my anxiety because she stayed with me until I was out completely. We had talked about me just a little bit and then I asked about her and where she was from. She told me she was from Port Clinton...which reminded me of my late uncle Dave. He had died suddenly a few years ago. He took care of himself and was an avid runner. He and my aunt were staying with another aunt and uncle at their place in Port Clinton when he suddenly just died. He had an infection in his heart that he didn't know about. Anyway, the nurse took hold of my hand and I asked if she could stay with me until I was out completely and she said of course she would stay with me. That  made me feel better. Dr. Mason was my wonderful surgeon. Before I was put out, he leaned in, looked me in the eye and told me, "Today is a beautiful day to get new lungs!" I agreed and thanked him. I also thought back to the day Doug and I was married (August 10) and our pastor said, "It is a b-e-a-u-ti-ful day!" I was a little more comfortable.

Obviously, I do not remember the surgery. I asked Doug (probably about 2 weeks later) about details. He said that the first incision was made at 7:08 am and Dr. Mason was out to talk to him around 11 am to let him know that everything went well with surgery. So on July 18, 2012, I got my new lungs! I remember things here and there. I thought I was on the phone with my dad and he asked if I wanted my mommy and I told him yes. Come to find out later, this was after surgery and I was in CICU and he was actually there and asked me if I wanted my mommy. :) I also found out later from Doug that they had to keep sedating me because I was awake and trying to take the tube out of my throat. Doug was told that they were sedating me more then other patients and that doesn't usually happen. I just wanted to try out my new wings is all! ;) I recall someone telling me that the day was July 19 and it was Alexa's birthday. Before I know it, I was asked if I was ready for the breathing tube to come out. I opened my eyes really wide and heard someone laugh and say that my eyes were as big as saucers and they would take that as a yes. I was told to take a deep breath and as I did so they pulled the tube out. I saw a bright flash as they pulled out the tube...this could've been the time when I had the small stroke that has affected the vision in my left eye. After pulling the tube out, Dr. Mason said that he had some important questions to ask me. He asked me if I knew what I just had done. I told him I just had a double lung transplant. He asked me if I knew where I was. I told him I was at the Cleveland Clinic. Last, he asked if I knew what day it was. I said...you're trying to trick me on this one. I told him I had surgery on July 18 but that it was now July 19 and my daughter's 11th birthday! He chuckled and I think I impressed him. :) And to think...I took my "first breath" on Alexa's birthday! If you can recall...I got listed on June 12, which was Austin's 15th birthday and took my first breath on Alexa's 11th birthday! How amazing is that? (Doug was taking bets when I got listed as to when I would get my new lungs and I told him it would be on or near Alexa's birthday..he didn't believe me.)

The next few days were a blur and the pain meds really messed with my head. At one point, I thought I was in the middle of a war and I had to get out. The pain was crazy. Some of the chest tubes came out within the first few days and I had 2 "bulbs" that were still attached to drain fluids. I was in the CICU until that Friday (the 20th), then I was moved to the step down unit. It was on Friday morning when I noticed that something was wrong with my vision. I thought I had seen it Thursday night, but with all of the drugs and I hadn't had my glasses on, I wasn't sure. When I look at people, their right eye is missing. It's not blacked out or blurred...it's just missing. I was watching TV Friday morning and it had closed captioning on and I couldn't read part of the closed captioning. I had to keep re-focusing...and this was making me nauseous. I told Dr. Budev about it and she ordered an MRI. Not fun because I had to lie flat on my back for about an hour and my head was tightly enclosed in the machine. Not fun. Lots of pain. The MRI showed that I suffered a small stroke and that my vision was part of the brain that was affected. I was told it could get better or it could get worse, that we might not really know. I'm going to see a neurosurgeon next week and will find out more.


Stay tuned for more...it is getting late and I am pretty tired. :)

....to be continued.....