Transplanted: Our Next Big Adventure

Life got complicated after coming home from the hospital. Recovery immediately after surgery was almost a walk in the park compared to what I endured after leaving the hospital and what I still endure at times. Besides recovery and hospital stays, life events happened that led to a lot of stress in our house. When we moved to Redwood City last year, we knew it was only temporary and for the sole purpose of being close to Stanford for my transplant. It is crazy expensive to live in the Bay Area and we just feel it is time to move on.

Emotionally, Tom and I have both struggled to figure out our next plan of action. We couldn't formulate a solid plan for many months. We would go round and round in circles as to where to live next. We were feeling huge amounts of pressure to make up our minds. All of this has been happening while still trying to work out my recovery kinks. My health is pretty good overall, but I still have weekly blood draws, infusions, and tests. This has all tested our marriage immensely.

After so much back and forth, we decided to take a huge leap of faith. With my second lease on life, I'm not willing to just stay in my box. I want to expand my box and live life. So, with that said, I can now tell everyone that Tom and I are transplanting ourselves to England! In the beginning of July I will officially become an expat. This is a dream I have always had, but thought impossible. We know it is a bit crazy doing this 8 months after surgery, but in a lot of ways it makes sense for us. We love California, but for now I feel it has served its purpose and I'm ready to take on the challenge of living life in a new country.

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!

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.

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.

My Life Of Numbers

Numbers are all around us and recently I noticed myself paying more attention to the numbers in my own life. Not everyone can understand what my daily life is like, but most understand numbers. Numbers can give a more concrete picture of a situation.

The photo above represents my life seven days a week. The table is covered with seven days' worth of medicine to keep me alive. Seven days' worth of pills, aerosols, diabetes maintenance, and of course my new best friend ... Ollie, the oxygen concentrator. I want to point out something that isn't part of my everyday life, my appearance. To be completely honest, I put on my "healthy" mask for this photo shoot. I did this more for myself than for anyone else. I wanted to take pictures looking good because it is rare for me to get dressed in something other than loungewear, or to put makeup on, or even to dry my hair. Some days, showers don't get done altogether. So as much as I "don't look sick", I'm very sick. Looking all made up with my hair done, makeup on and a put-together outfit only happens every couple of weeks or so. It took many hours to get ready for these photos. My energy is low and it took me the better part of 5 hours to get my treatment done, eat, shower and be ready. Tom teased that it would take me until 4pm to be ready. Well I'm happy to report it only took me until 3pm, so HA! The rest of that photograph is an accurate depiction of my seven days a week routine.

Lungs At 26

It may be my birthday today, but CF doesn't give me a day off. CF has been kicking my butt the last few days, which is making my special day a little less bright. I'm trying to fight through the sickness I'm feeling, but a nap and a lot of tea drinking seem like the best presents I can give myself today. Tom has been so great with helping me through this time. Men seem to always want to fix things, and I just keep reminding him that cuddles, kisses and hand-holding are all that is required when I feel so crappy. He has done an excellent job at giving me as many cuddles as possible.

Events have happened lately that I have not got around to blogging about. In my little bubble of life it doesn't seem like such a big deal, but I figured I would finally share the latest happenings with all of you.

Last Saturday evening I got another phone call for lungs. Unfortunately, they were high-risk lungs once again. The doctor told me the donor was a prostitute and, at the time of testing at least, she was negative for HIV and all forms of hepatitis. The doctor went on to further explain that the donor's chest wasn't looking right and they were asking for more intensive testing to be done to find out more about the lungs and how viable they were. The high risk factor and the unknown viability of the lungs made me realize the lungs were not for me. As much as I wanted them to be right because I'm feeling so ready for new lungs, I knew it was in my best interests to turn them down. I was able to learn that I was the second person to be called that night. Another patient at a hospital in San Francisco was asked if they wanted the lungs first, but that patient turned them down as well.

2014: The Year Of The Lungs

Today marks my 100th day on the transplant list. It's been a while since my last blog post, but I put this down to anxiety and paranoia, my new, unwelcome friends. December was a hard month for me, what with the air quality in California wreaking havoc on my lungs and sinuses, giving me headaches and making me wheeze, and to top it all off I ended the month with a wonderful, snot-filled cold. It was a Christmas present I won't forget.

The last time I blogged, I talked about the need to gain weight. Even though December was rough, I managed to gain eight pounds and maintained a steady if not slightly better lung-function. All of those things are great and should have made me happy, but waiting for lungs has made my brain feel a little out of control. I started isolating myself from social media, which was actually a good thing because reading about all of my other friends and their health issues was just fueling my paranoia. I thought whatever they were going through would happen to me too. To concentrate on my health as my sole job has taken its toll on me. Thinking all day long about treatments, exercise and food has brought me to this downward spiral. However, there have been some mantras that have guided me through this rough patch.

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.

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.

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.

Baking And Bananas

I have neglected the blog a bit, but I have been busy with pulmonary rehab and other things. I had some spare time this week, so I decided to put my not-so-great baking skills to use.

I had an urge last Monday to bake. I cook all of the time and I feel comfortable in that role. I cook dinners most nights and I enjoy trying new recipes and seeing where I can take my culinary skills. Baking, on the other hand is not my forte, nor have I ever been that interested. It might have something to do with the fact I don't like sweets as much as I love salty snacks!

Monday is when that changed. I had an urge to bake chocolate chip cookies. I decided to start with something easy and go with the Nestlé Toll House recipe, straight off the back of the chocolate chips bag. I was really nervous because I know baking requires exact measurements, and in cooking I usually take liberties with my measurements. Well, the cookies turned out great and I'm pretty sure Tom has been having them with breakfast, lunch and dinner. I forgot to mention, my husband is a desert-a-holic. It is another reason I don't keep sweet things in the house. He devours ice cream, cakes, and pies like it is his job.

Love And Marriage ... And CF

Two months before my wedding, I was in a car returning from a CF event with my pediatric doctor. As our car pulled up in front of her house, she looked at me and said, "I'm not going to wish you luck for your wedding day, I'm going to wish you luck for your marriage." I must have looked perplexed because she went on to say, "The wedding is just one day, your marriage is for the rest of your life. You deserve luck for your entire life, not just one day." Her nuggets of wisdom and advice were what I cherished most about her.

She was right, the wedding was just one day, and a happy, most exciting day at that. We need luck and good thoughts for the rest of our lives.

Update On A Busy Week

This is the first chance I have had all week to sit down and write on my blog. This week has been busier than I imagined, but it was all good busy.

Let's skip Monday. To be honest, I don't even remember Monday. Tuesday is when it all started. I have been waiting for Tuesday, September 10th for over a month. On Tuesday, I started pulmonary rehab. This is an eight week program dedicated to helping people with lung disease. It is a program to help people start exercising and learn how to manage their disease. I'm in this program for the exercise. I asked my doctors months ago to get me into a rehab program where I was forced to exercise weekly. Any medical professional in my life knows how much I hate to exercise and how lazy I can be, so for me to actually ask to be put into this program was a huge step forward. This program will be good for me, and keep me strong while waiting for new lungs.

Good News And Thankful Thursday

It is more like great news in the Williamson household. I have been approved by our insurance company to have my transplant at Stanford! Yippee!

Let me backtrack by saying many people were involved in phone calls, including my husband, to the insurance company. We actually had an idea that the denial from the insurance company was going to be reversed last Friday, but I did not believe them until I got solid confirmation. The confirmation came on Tuesday from Stanford and from the insurance company. We didn't ask many questions, but someone worked some magic and all things are sorted. I thought this process would be a lot longer and I planned on giving ourselves four weeks to sort out appeals and such, and then I was already planning on what transplant center I wanted to go to for new lungs. I am grateful we don't have to move and I don't have to go through another evaluation. I am now waiting on results from one final test, and then I can be listed for lung transplant.