My Steps Towards Transplant: The Weeks Before

Yesterday, I started a series called My Steps Towards Transplant to share my story as I begin the process of getting a double lung transplant for my cystic fibrosis. In part one, we looked back on my decision to get a evaluation, which really began more than 8 years ago. I shared my experience on how I got to the point of making the decision to move forward with a transplant and how it was a relatively easy choice for me to make. You can read the full story here, My Steps Towards Transplant: The Decision to Evaluate.

Today, I want to talk about the weeks before my evaluation. The logistics or timeline, if you will, what steps I took to prepare and most importantly, how it felt.

My Steps Towards Transplant: The Decision to Evaluate

Four weeks ago, I officially began the evaluation process for a double lung transplant. But truthfully, my transplant experience started way before that. And it's going to continue far beyond that two-day evaluation. Today, I'm starting a blog series called My Steps Towards Transplant. This first week or two will chronicle my journey (so far) with transplant, from the first time I heard the words "double lung transplant" to the results of my evaluation. In the next few months/years, I'll continue to share my story as I move forward in this chapter of my life with cystic fibrosis.

I wanted to write this series for a few reasons. When I first publicly announced that I was being evaluated for transplant, I had an incredible outpouring of love and kindness. I started a public Facebook page, as a way to continue being an advocate and spread awareness about cystic fibrosis, but also to share my new transplant journey. I had over 500 likes in just two weeks and had dozens, if not hundreds of comments and messages. Family, friends and even strangers from all walks of life were getting in touch with me to say they were thinking of me and they loved me. I had so many people supporting me as I started this new process. Sadly, I haven't had a chance to update any of them on how it went, because immediately following my evaluation, I ended up getting a cold and was sick for several weeks... cystic fibrosis always has impeccable timing like that. I have chatted with family and some friends when I've seen them recently, but the majority of my friends don't know what happened, so that's why I'm writing now (p.s. here's a shameless plug to say please like my Facebook page, High Heels & Hospital Bills if you haven't yet :D ).

The second reason for this series is because in preparing for my transplant evaluation, I had questions.

What does CF "really look like?"

So it's Cystic Fibrosis Awareness Month and that means that Facebook and many other social media outlets are exploding with posts about CF. What it is, what it means, who has it, why we need funding. I personally have zero problem with talking about my cystic fibrosis for the rest of the months, but it is encouraging to see the community come together every year to bring much needed attention to this illness that affects us so deeply. I've noticed, however, a few posts, discussions and dare I say arguments about "what CF really looks like" and that it's not glamorous or pretty. I've seen this recently and on a number of occasions in the past.

Some think that the best way to bring awareness to is to show the graphic photos. Photos that bare witness to our most fragile state. Photos inside the hospital walls because most people will never have the chance to see something that raw. Others, take a different approach. They aren't as comfortable sharing that vulnerable side of their disease and they would rather post a picture where they look healthier, maybe with their make up and hair done or even a fun snapchat filter. Or maybe they don't want to be labeled as "sick" and they'd rather share the "normal", non-CF side of their lives as a way of showing the world that they're just like everyone else.

Well I, being who I am, have a few thoughts.

Ten years later.

Ten years ago today, I was admitted to the hospital. I was 15 years old and prior to that day, I had only been admitted to the hospital three times in my life. For someone with cystic fibrosis, this was actually pretty impressive. Growing up, I knew that I had CF but admittedly, I didn't know what it meant to be "sick."

I did my breathing treatments, took enzymes and vitamins and the occasional round of oral antibiotics. I had doctors appointments every few months. But between the fact that I was still very much a child and naive about my illness, my "doctor Mom" doing everything she could to keep me healthy and what I can only choke up to being "lucky," I hadn't yet experienced the harsh reality that many with cystic fibrosis face. Honestly, as a child, I barely remember even having CF. When I walked into the Pediatric Ward that Monday, I had no idea I was about to hit a breaking point. That Monday was a catalyst in my healthcare journey because for the first time in my life, I began to understand what cystic fibrosis really was. In some ways, I actually consider it to be my "first" admission because the illness I knew before was nothing compared to what I've known since.

I spent 23 days in the hospital that April. During which, I was diagnosed with CF related diabetes and a mycobacterium abscesses lung infection. I was started on insulin therapy and learned to give myself a shot with every meal. I also had a central line permanently placed in my chest, which I used for IV antibiotics, 3-4 times a day, every day, for the next 3.5 years. In a matter of days, everything I knew about my life changed.

I still believe the best is yet to come.... 2016 Great Strides Ambassador

And after all that we've been through

And after all we left in pieces 

I still believe our lives have just begun 

Cause now the past can be outrun

And I know you are the reason 

I still believe the best is yet to come

Has anyone ever told you "the best is yet to come"? Did you believe them? What was going on in your life when they said it?  I've always liked that phrase. I'm a fan of being optimistic and those words embodies positivity in every way. It says "even though things are great right now, they're still going to get better." The lyrics above are from a song by the band RED.

If I had to pick one song to describe the year 2015, it would be that one.

2015 was awesome. It seriously was. You can read about the first half of the year HERE. But to sum it up... I had the most amazing last semester including an internship, a executive board position in my sorority and a director position with ODU's Student Government Association.  I graduated with college with honors. I got a paid internship within a week in my field of study. I got the most adorable kitten in the world. And last, but certainly not least, I was able to start taking Orkambi, the first ever FDA approved medication to treat the underlying cause of cystic fibrosis for nearly 20,000 children and adults in America.

I wrote a blog about Orkambi when I first started treatment (read that one HERE), but per usual, I haven't written much since. Tomorrow will be six months since my first dose. People have asked how it's going and I have to be admit, I hesitant how I should answer. Don't get me wrong, I have definitely had positive results from this medication.... but I'm not going to lie and say that it's been some miracle cure-all.

The best Christmas gift I ever received.

Like many, I haven't quite wrapped my head around the fact that Christmas is in three days. It feels like every year, the days get shorter, the shopping lists get longer and the Goodwin tribe grows in numbers. This year was no exception with my brother Jeff's engagement. His fiancee, Brittany, has been spending Christmas with our family for a while now, but saying fiancee rather than girlfriend definitely makes it more official. Next year, she and my brother Jeremy's fiancee, Erica, will both be Mrs. Goodwin which is even more official and I am beyond excited. Now, to convince one of my older sibling to give me adorable nieces and nephews to buy (way too many) super cute presents for. Hm...

Speaking of, they say the best presents can't be bought at the store. Which I wholehearted agree. The best Christmas present I ever received wasn't something anyone purchased; it was the gift of life and it all started on December 19, 2011.

Have you ever thought you were going to die?

I don't mean a cliche, passing thought of everyone dies or the times where near-miss accident make your heart race inside your chest. And honestly, I'm not even talking about the looming thoughts of death that come with having an incurable, chronic illness.

I'm talking about experiencing a situation that was so terrifying and so overwhelming that you truly believed it was going to kill you. A situation that ripped through every rational thought and paralyzed every notion you had that you were in control.

#tbt to that time I let some guy permanently place a chunk of metal in my chest

Today is Thursday, which of course means I have to post a #tbt. While TimeHop did remind me this morning of the single most amazing best friends halloween costume I have ever had being one year ago today (said costume can be seen here), I thought I should probably blog about something slightly more "substantial"....

Earlier this evening, I had a conversation with a friend who will be getting her first mediport placed tomorrow. I realized while talking to her, that just over a year ago, I was in her exact position. (I know, because about four days ago, TimeHop reminded me of that Instagram post.....) I wrote a blog about my decision to get a mediport placed. It was not an easy decision for me. I was angry, sad and more than anything.... absolutely terrified. Thinking back to the feelings I had before my port and my perspective now, I had a reality check about how much change can happen in a year's time.

DISCLAIMER: After 23 years, I don't even flinch at "medical" stuff anymore, but out of respect to those that do find the topic less than desireable, I will say now this post contains mildly graphic images. 

If you'd like to take the long jog down memory lane, you can read my original blog post here (http://www.jillian-goodwin.com/2014/10/sometimes-hardest-thing-and-right-thing.html#more). But for those that would prefer the quick 'n easy version, carry on...