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 16

On Monday, November 17, 2014, Maggie was discharged from Stanford Hospital. The photo below, in which she is shown sporting this season's 100% HEPA filter mask, was taken outside the main entrance of the hospital as we were getting into the car. It was quite an emotional moment, to be going home just 12 days after her double-lung transplant surgery. During that time she spent 1 day in the Intensive Care Unit (ICU) and the following 11 days in what is called the Intermediate ICU. The ICU has a 1:1 nurse to patient ratio, where as the Intermediate ICU is more like 1:2 or 1:3, still with close monitoring. Her initial recovery progress was extremely fast, then towards the end it slowed down as we waited for the last remaining chest tube to stop draining so it could be removed. Maggie received such wonderful care from all the staff at Stanford, I really can not thank them enough for looking after her so well.

Discharged On November 17, 2014

Coming home has been a lot for Maggie to take in. In many ways her mind has still not had a chance to catch up with what her body has been through over the last 2 weeks. Maggie now has to learn how to use her new lungs and is still trying to figure out what "normal" is meant to feel like. We have been instructed to call Stanford immediately if anything seems wrong or concerning. Of course, it is difficult to know what is a problem and what is just part of the healing process. In these early days, the best policy is to call if in doubt, even if just to be reassured that everything is fine.

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!

Moving Right Along

Moving is not for the faint of heart. The days leading up to our move were agonizing, stressful and anxiety-ridden. We found ourselves resisting the change we had committed to make. We were trying to sabotage our own decision, one we knew would be beneficial in the end. What were we so afraid of? Fear stops us from doing so many things in life, but the lease was already signed. We couldn't stop, all we could do was complain, yell and even cry a little bit.

Moving day came, the truck got loaded and unloaded, and smiles came back to our faces. Our furniture was set down in our new place and it felt like home almost immediately. Our shoulders relaxed, our shouting went back to talking, and our eyes were certainly dry. It took us, ok, it took Tom approximately three days to unpack every single box. He's a pretty awesome husband, that's for sure!

Life transitioned quite smoothly after that. I went for a doctor's appointment two days after we moved. The drive to the hospital was so short, we could not stop talking about it to anyone who would listen to us at clinic. My lungs even improved slightly from all that packing and unpacking that I was doing.

Throwing Curveballs Our Way

Life has a funny way of pushing us down one path or another. Sometimes things have to be so blatantly obvious for us to accept a new direction in our lives. This coming Monday, June 9th, Tom and I will be moving! We are moving from Walnut Creek to an area called Redwood Shores, about half-way between San Francisco and San Jose. In this post I will focus on the questions you must be asking : What?, Why?, Where? and How?.

What? I know ... "what the heck?" is what we have been saying throughout this process. We never expected to pick up our lives and move while I am waiting for a transplant, especially this late in the waiting process. My health is really deteriorating, but continue reading and you'll see that it makes a lot of sense.

Thank You!

I'm still trying to gather my thoughts on this last week and our fundraising efforts. Many times I had to pinch myself to see if I was dreaming or not.

I want to tell you how thankful I am for your support to make sure my family is by my side while I recover from my transplant. I am so humbled by how many people have reached out and given so selflessly to us. I have witnessed the amazing human spirit this last week and I am so thankful to have all of you cheering me on during this process. My family and I truly could not do this without you.

You have all gone above and beyond to make sure we know you care, and so many times I had to pick my jaw up off the floor because of all your generosity, ensuring our financial needs were met for when that call comes. Tom and I thank you all so much, and my parents are so grateful for your support.

Your Help Is Needed

I want to start by saying thank you to everyone who has contacted me, and who is praying for my family and I during this time. Your messages have not gone unnoticed, and I appreciate all of the love and support that has come my way.

Many of you have asked what you can do to help, and as much as my prideful self would love to say we don't need any help, we do indeed need some assistance for this transplant.

A surgery of this magnitude has a long recovery process that involves a lot of monitoring of my new lungs and my body as a whole. After the transplant has taken place and I am deemed "healthy enough" to be discharged from the hospital, Tom and I are required to live within 30 minutes of the hospital, and that must include the awful traffic we have here in the Bay Area. Right now we live over an hour away. This means that we will need to relocate to temporary, fully furnished housing accommodations when I leave the hospital. The doctors have given us an estimate of 3 to 4 months living near the hospital. This is necessary partly in case an emergency arises, but also because I will have to be at Stanford at least 3 days a week for those initial few months. I will be participating in another pulmonary rehab program after transplant to get my new lungs and body back in shape. I will also have doctors appointments and blood tests on a weekly basis.