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.

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.

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.

A Tribute

My friend Colleen passed away two weeks ago and I have not had the words to express my sadness over her death. Colleen had CF, and this disease took her away from us. She was only 16. CF is still taking such young lives and it is devastating.

Although Colleen and I were nine years apart, we still connected. We shared the common bond of having this disease wreak havoc on our bodies, day in and day out. Colleen's family and my family met when I was young, at a CF fundraising event in Chicago. They live in Indiana, but would make the drive to Chicago for the CF Foundation's walk-a-thon each year.

So, What Do You Do?

Before I get into my post, I would like to say, no news yet on the insurance situation. When I know more I will write an update.

So, what do you do? It's an age old question we ask others and get asked ourselves. This question is usually the ice breaker into any small talk conversation with a stranger. It always seems to be the safest question to ask someone when first meeting them. Asking someone their profession, or what do they do in their life seems to be society's way of defining each other.

Since graduating college, I have been able to answer this question without having to tell much of a back story. "Oh, I work in non-profit." Or, most recently, "I'm a part-time nanny." These answers seem to always suffice. The stranger is usually satisfied with my answer, and we move on from there.

The Bumps Are More Like Mountains

I knew going into this process that I would encounter bumps along the way. I just never realized I would get my first curve ball thrown at me before I was even listed for transplant.

Smacked By Life

Life tends to smack us in the face when we are not paying enough attention. Most of us, myself included, go through our daily routine without even thinking about it. We get so wrapped up in the little things and life is one big rush, we sometimes forget to stop and process.

Life smacked me in the face today. The past few days have been a blur for me. Worrying about getting to the grocery stores, worrying about what to make for dinner, and worrying about my house getting more cluttered by the minute. I have been talking about transplant on this blog, on the phone, and in a speech I made at my Toastmasters class last night. Transplant, transplant, transplant. It's all I have talked about, yet I've barely had a chance to think about it.