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.

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.

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.

The Supporting Role: A Husband's Perspective

As Maggie's husband, primary carer and chief "blogmaster" of Maggie's Miracle, I am delighted to have been invited to make my first blog post. My wife insists that people want to hear my story and so she set me this assignment. Her brief was simply that I should talk from the heart, which is not easy for us Brits. But I will do my best to give you an honest and personal account of our journey together so far.

I have always loved TV hospital dramas. Growing up in the UK, I was an avid fan of the BBC shows Casualty and Holby City. For American readers, I suppose an equivalent show would be ER, which I actually have no interest in watching. Maybe it's because British TV is infinitely superior to the endless drivel of commercials that passes for American TV, or maybe it's because I now find myself playing a supporting role in my very own hospital drama!

The Cast Of BBC's Casualty

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.

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.

Thankful Thursday

Thankful Thursday is not something I came up with, but an idea created by a friend of mine. I think this post and future Thankful Thursday posts will be a good way to stop and think about what I am grateful for. So as I sit here and drink my high calorie shake, I say "cheers" to the first of many Thankful Thursday posts!

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.

D-Day, My Oscar Moment, Or Something Like That

First I would like to say thank you to everyone who has read my first post and to all the comments, emails, messages, and texts I have received of overwhelming love and support. I broke down and cried by the afternoon yesterday because I was overwhelmed with all of the support. I go through life just doing what I am supposed to do to survive, and I sometimes forget that having an illness is not normal, and for others looking in, it is a big deal how much I go through each and every day.

I acknowledge you all and your outpour of love for myself and for my family. So, thank you.

Yesterday, I told you a lot. Today is no different. The evaluation process was four full days, but four full days that went by quickly. It was a blur, and I'm still trying to count how many needles were stuck in my arms in four short days, I can tell you it was a lot more than I am used to. By the third day of my evaluation I was told that my "case" would be presented to a whole bunch of people who would decide if I was ready to be listed for a lung transplant. And, oh yeah, I was up for presentation yesterday, and oh yeah, I would find out Tuesday (TODAY) if they wanted to list me for a lung transplant.

Welcome To My Journey!

Welcome to my blog, and my first ever post.  Some who have come to read this blog know a little bit about what has been going on in my life the last few months. And to those who don't, well this will be a great place to catch up and be updated about the journey ahead for me.

Let's jump right in the deep end. Most people know I have Cystic Fibrosis (CF) and if you know a lot about it then you know there is no cure. The only available treatment to make us CF patients as normal as possible, is frankly, get new lungs. Yes, I am talking about a lung transplant. When we have exhausted all other forms of treatment, we have to resort to a double lung transplant. Unfortunately, this is not a cure either, this is actually trading one disease for another. A lot of time transplant becomes easier to manage than CF, but it still comes with its daily regimen of medications and frequent monitoring by doctors.