Listed

It's been a while since I last posted, but my material was limited and I have not been feeling the best lately. However, I now have a lot of news ...

On Wednesday, October 16th, 2013, I was officially listed for a double lung transplant.

Over the last few weeks I have slowly come to the realization that I am ready. It was the hardest decision I have ever had to make because a successful transplant is in no way guaranteed. It comes with huge risks, and some people don't make it off the operating table. However, the life I live now is not much of a life at all. My body and disease are my sole focus these days. This is not a life, it's not even close to being alive. My brain is still trying to get used to the idea that my body is failing me. So here I am, tempting my fate, standing on the edge of the cliff waiting to jump. All I can do now is wait for the phone call that could come at any time, day or night, to say they have new lungs for me.

Wednesday was my first transplant clinic appointment, and I knew going into my appointment that I was going to tell my team I wanted to be listed. They wholeheartedly welcomed the news and were very much in agreement with my decision. My nurse coordinator answered all of our questions and then told us she would list me by the afternoon and tell me my lung allocation score. This score determines where you sit on the list in terms of priority, as it's a measure of how sick you are. Having a score of 1 means you are too healthy to even be considered for a transplant, and 100 means you need lungs today to survive. The team likes to see their patients in what they call the "transplant window", which means that they are sick enough for a transplant, but healthy enough to survive a year or more waiting for lungs. I am in that perfect transplant window. My score is 37.09. My nurse assured me my score will go up before I get lungs because my body will continue to fail. In theory, the higher the score the sooner you will get lungs. However, the lungs must also be a match in blood type and size. Of course they cannot predict when lungs will come for me, but they average about 6 months to a year. Tom says I'm so special I will probably get the call sooner.

My clinic appointment was not all about transplant, I also knew it was time for a hospital admission. My breathing has become more labored, I'm more tired, and I have lost some weight, all signs that my lungs are more infected than usual. My team also agreed to my request for a hospital stay. I got a room late in the day on Wednesday, and I knew I was particularly stressed. The first day and night in the hospital are hell to me. Medicine orders are wrong, X-rays need to be taken, blood work needs to be done, a million questions are asked, and all of my control goes out the window. Have I ever mentioned that I'm a control freak when it comes to managing my care? Well, now you know my little secret, and trust me, it's not pretty when I feel like I'm losing control. Getting admitted on Wednesday was a particularly bad admit. My thoughts were all over the place and I was getting told left and right what to do. Many tears were shed. I cried and shook uncontrollably for a solid ten minutes while Tom held me tightly and told me it was okay.

The next morning also started off a little shaky, but after some long discussions with the people who know me best around here, everything straightened out and I started to relax. To anyone who is thinking of putting themselves on the transplant list and admitting themselves into the hospital on the same day, DON'T DO IT! It is more stress than the mind and body should ever have to endure.

My control issues extend further than just that night. Getting listed has changed the control of my care. I no longer have any control over this transplant. It has not sunk in completely that my phone will not be put on silent for a very long time, or that I have to surrender to this daunting process. It's a lot to swallow, and I think my brain is protecting me from thinking overwhelming thoughts all at once right now. It will sink in, over the days and weeks ahead, what this means for me and my family. I have to admit to myself that I have "end-stage" lung disease, and the treatments and care my family and I have given myself for the past 25 years are not good enough anymore. I have exhausted all treatment options and now we just have to try and keep me alive long enough to get new lungs.

I'm sure this is hard for a lot of people to grasp. As my mom asked when I told her the news, "Do I say Congratulations, or Holy Crap?" I told her I wasn't sure, but either would work for right now. The 'Congratulations' is saying I will have a new lease on life, and will be able to do amazing things! The 'Holy Crap' is saying that this is bigger than all of us, and it is a lot to wrap our heads around. Either way, any words from family and friends are always appreciated, no matter the sentiment.

It is hard to be so far away from family, but I chose to move to California to get the best possible care for myself. I know this is hard on my whole family, so if you know them, or see them around, please give them a hug. I know they will need all the support they can get during this difficult and stressful time.

If anyone has any questions you can always leave a comment and I will answer to you personally or in a blog post. In the next few days I will write more and will probably be asking for help from all of you.

Thank you again for reading and following my journey. This is a hard road to go down, but it's the best and only option I have left. I am optimistic about my future and what new, beautiful, healthy working lungs will do for me and my life.