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.

Transplant: Day 8

The last week has been a bit of a blur as Maggie continues to recover from her transplant surgery. It's hard to keep track of exactly what has happened and when. We have been taking it in turns to spend days and nights with Maggie in her hospital room, trying to get rest and sleep where we can. Ed and Stevie, Maggie's father and brother, have both returned to Chicago. Kerry, Maggie's mother, and I have been alternating nights in and out of the hospital. It's tiring work, but rewarding to watch as Maggie becomes more and more like the Maggie we know and love.

It's hard to describe just how busy and action-packed the days have been here at the hospital, although it seems like things might finally be calming down. Sleep has been a rare commodity until recently, even at night there is a constant stream of things to do, with nurses coming in and out. As I write this by Maggie's bedside, she is taking a nap, and it's amazing to watch her sleep compared to before. Her mouth is wide open as if she is catching flies, and she is taking slow, deep breaths rather than the shallow and rapid breathing of before. Her breathing is also silent. For years, every breath she took came with crackles and wheezes, similar to the sound of rice krispies covered in milk. But now it is totally silent. She was curious to listen to her new lungs, so the other day the nurse gave her a stethoscope. She asked inquisitively, "What is that whooshing sound?" The nurse replied, "Maggie, that is the sound of air rushing into your lungs, that's what normal lungs should sound like!" There were no crackles, no wheezes or other strange noises. Even at birth, her lungs were not completely clear, so this was truly a new experience for her, and quite an emotional one at that.

Transplant: Day 3

It's Saturday afternoon here at Stanford and I thought another update was in order. It's hard to keep track of everything that has happened in the last few days, it has been so action-packed. Maggie only came out of surgery on Wednesday afternoon and yet today, just 3 days later, she took her first walk outside her hospital room. In true Maggie form, she called the shots and told her nurses that even though she was tired and exhausted she wanted to get up and walk. It's the best thing she can do for herself at this stage, to get out of bed and move as much as possible. Recovery, it seems, is not about resting and more about working! She is physically exhausted, if only because it is impossible to get any sleep around here. There is a constant stream of people coming into her room day and night to administer medications, perform chest x-rays, educate us on how to care for her after transplant, and a whole host of other things. It is a lot to take in, but an amazing experience to witness her progress.

As Maggie was walking back into her room today, she caught a glimpse of herself in the mirror and burst into tears. These were tears of pure joy, as she realized that she had just managed to walk without feeling out of breath, for the first time in years. She can't can't come to terms with having somebody else's lungs inside her, her mind has not had a chance to catch up with her body over the last few days. She is so, so thankful for this amazing gift from her donor.

Transplant!

On Tuesday, at around 11 pm, Maggie received her third and final call for lungs. I had just gone to bed and Maggie was downstairs finishing up her treatment. She came marching upstairs, yelling at me to get up. After a brief discussion and a moment of shock, she took a quick shower, we packed some bags and then drove to Stanford Hospital. The roads were empty that time of night and we arrived in what seemed like a very short amount of time. There was hardly any time to discuss what was happening, let alone how we were feeling, and before we knew it we were at the hospital.

She was admitted to a regular hospital room, where an assortment of tests were done. We were told to expect surgery around 7 am the next morning, so we had a long wait ahead of us. However, time passed extremely quickly, and our friend Anna Modlin was kind enough to sit with us. She has had a lung transplant of her own and so was a great source of advice and comfort as we prepared for what lay ahead of us. We didn't know whether the surgery would go ahead at this point, the donor team had to travel to the donor's location, check if the organs were suitable and then harvest them. We were keeping our expectations in check in case it turned out to be a "dry run". Around 4 am, orders were received to take Maggie up to the operating room and prepare her for surgery. There was suddenly a sense of urgency and we were hurried out of the room. I said goodbye to Maggie and she was taken off into the operating room. For the next hour or so, she was given light sedation and we waited to receive news from the donor team as to whether the surgery would go ahead. They don't put someone fully to sleep until they are absolutely sure the surgery will go ahead. Finally, around 6 am, the hospital heard from the donor team and they started to put Maggie to sleep and prepare her body for surgery. This was going to happen!

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.

Weight For It ...

Wednesday was transplant clinic day. I was not looking forward to this appointment because of the early start. I'm used to having clinic in the afternoons and now my clinic is in the mornings, bright and early. Tom and I live fifty miles from Stanford Hospital and with California traffic that means a long time in the car, no matter the time of day.

My appointment was to start at 7:30 am, which meant leaving the house at 6:15. I thought foolishly that we could actually make it on time because who the heck is on the road at that time!? Well, it seems a lot of people are trying to get to work and beat the "rush hour." It's always rush hour here! With starting so early there is no way I was going to get up any sooner than I had to, so I prepared my treatment for the car the night before and decided I was going to go in public shower-less. Up at 6 am, in the car by 6:15, it was a doozy, let me tell you.

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.