One Year And Counting

One year ago today I was listed for a double lung transplant. So much has happened in these last 365 days. I started this journey not needing additional oxygen and now I'm using it 24/7. I had two phone calls for high-risk lungs, and I turned them both down because I knew deep down those lungs were not for me. Tom and I moved to a new home, which turned out to be a good thing in the end. This year has been filled with so many ups and downs and huge emotional growth on my part. It has taught me patience, perseverance, and how to hold onto hope. I have a lot to be thankful for, including the fact I am still here fighting for every breath.

September was our toughest month yet. It felt like it was never going to end. It had some good parts, but even the good parts came with stress. The bad parts were definitely rough. I lost my friend Kriss to this horrible disease. I was fortunate to spend a week with her at a CF retreat and conference at the beginning of August. Not long after that, her health took an unexpected downward spiral that ended tragically in her passing. She is no longer suffering, but a lot of us here on earth mourn her loss and her beautiful spirit. Her passing was and is more challenging for me to grasp because she wasn't much healthier than I am currently. Each horrible health event that she endured led to another, until she could take no more. Losing a friend, on top of life's normal stresses, I started to lose traction on my own health.

I have been more than fortunate since I was listed for transplant. For almost an entire year, I not once needed to go into the hospital for IV antibiotics. That has never happened in my entire life. I was always in and out of the hospital several times a year. We still are not quite sure what led to such good fortune, but I am still so grateful for the time and health I have had. All that changed at the end of September. I began having difficulty breathing and needed more oxygen. I started getting fevers and that is when I knew I needed intervention to stop the infection from getting worse in my lungs. I was admitted into the hospital on September 24th and spent eight long days locked up, trying my best to regain my strength and heal my lungs.

One good part of September was when Tom was asked to play the organ with the San Francisco Symphony. He spent most of his childhood and young adult years learning and playing the organ and he plays at churches here in the Bay Area now and again. An acquaintance of Tom's had passed along his name to the Symphony and Tom happily obliged, knowing what an honor it was to work with such a high-level orchestra. He had two pieces to play for three consecutive concerts and several rehearsals. The stress of this great fortune came when I landed myself sick and in the hospital smack dab in the middle of his week of rehearsals and concerts. Tom had to literally drop me off at the hospital with my bags in tow and drive straight to San Francisco for his first two rehearsals. We both wanted to be there for each other and support each other, but it wasn't in our hands and we had to manage the best we could. I did hear from our friend that Tom did a great job and the concert went well!

I had a very difficult stay at the hospital. My anxiety was at an all-time high every evening and I felt exhausted all of the time. As I was now in hospital, my team decided to carry out my transplant evaluation testing. It is a requirement to be retested every year of being listed, to ensure I am still eligible and healthy enough to undergo a transplant. The tests were so hard to accomplish but at least I was able to space them out over a few days. The original plan was to do them all in one day as an outpatient, so this at least saved me a return visit to the hospital.

The silver lining about me getting sicker was that my transplant score went up. I started this journey with a Lung Allocation Score (LAS) of 37 and over time it has crept up, but in these last two weeks it jumped two whole points. I am now at a score of 42.02. At this point the score doesn't mean much. I am most likely competing against myself, as it's unlikely that someone else on the list has the exact same blood type and chest size that I do. If there was someone else, then they would give the lungs to the person with the higher score. Right now I am just waiting for my perfect donor to come along.

My hospital stay rolled into the beginning of October, so of course I ended up celebrating our 3rd wedding anniversary in the hospital! There was so much good and bad wrapped up into that day. With all that had been going on in our lives recently, Tom and I were in agreement that neither of us would expect any grand gestures or cards. We gave each other a free pass, and with that came a beautiful anniversary. Part of me was actually excited to spend my anniversary in the hospital. I am used to making holidays or birthdays special while I'm in the hospital. This was a first for Tom and he was feeling like it might not be the greatest place for a special occasion. I told him to buy us a candle, get some sparkling grape juice and bring us some Mexican food. Stanford has a nice outdoor space on the third floor of the hospital. It has many tables and beautiful trees and flowers to make the space a bit brighter. I told Tom we would have an outdoor candlelit dinner! Stanford even stepped up and gave us some beautiful desserts to make our night special. I had not showered for six days so I was looking mighty fine. I rolled my oxygen tank outside as Tom carried all the food and goodies. I turned on Pandora on my phone and put it to our favorite station while we ate messy burritos and tacos and drank the finest non-alcoholic bubbly money can buy. It turned out to be the most romantic evening we have had in a long time. No fancy restaurant with loud people, no dressing up, and no pressure. At one point we realized the stars were out and since I am sucker for all things celestial, I got giddy realizing we were eating outside under the stars. The evening ended with me doing a breathing treatment and Tom passed out on my shoulder in my little twin bed. It was more than perfect and I will cherish that anniversary forever.

I am finally off IVs and Tom and I are trying to find our groove once again. I'm a little slower and a little more useless than I was. I don't think I will gain back what I had just three weeks ago. My oxygen needs are more and my lung function seems to have settled at 24%. Some days the wait for lungs seems unbearable and I get angry and upset, and other days I feel motivated and hopeful. I know I have not been the best at keeping people informed, but I do know people are praying and thinking of me constantly and that is so kind and helpful.

I'm not sad to see September gone. Although there were some good moments, it brought a lot of bad juju with it.

Here's to new lungs soon!