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.

Pump It Up!

And so the wait continues on this long journey to new lungs. I have not posted in a while as there hasn't been much to report. I go about my days doing what is required to stay as healthy as possible. There is a lot of rinse and repeat action that takes place daily, but not enough blog fodder. In all honesty, I didn't think I would be waiting this long for lungs, and the longer it takes, the more I'm convinced it will be a long time before I get the phone call. I have been on the list for about five months now. I am extremely grateful for the stability in my health. I have not been in the hospital since October, which is the longest I have gone without IV antibiotics since I was a kid. I'm not sure how I'm doing that, but I just thank my lucky stars I'm able to maintain the health I have during this time.

Anyway, I'm not here to bore you with my lack of life. I do have some fun stuff, or at least fun to me, I want to share. As most of you know I now have diabetes. It's an extra little present that CF gives us in adulthood. So nice of CF, right?! I was diagnosed with diabetes two years ago and I'm still learning how to manage it effectively. It's not easy, but I'm dealing with it.

A couple of months ago, I decided that I was fed up with multiple insulin shots every day, so my doctor presented me with the idea of using an insulin pump. It is a much more effective way to manage diabetes and reduces the need for so many needles. I did some research on what pumps were available and what the daily and weekly requirements of having one would be. I was ready to take the plunge. After jumping through the mandatory insurance hoops, I finally received my t:slim pump. It was like Christmas in February when it arrived!

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.