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.

I'm telling you all this because transplant is now my only option to survive. I have known for about a year that transplant would soon be my only option. It might be a surprise to most, but knowing how I feel and my daily activity, I knew we would start the process for new lungs sooner rather than later.

During my last hospital stay, my doctors talked with me and said it was time to refer me to the transplant team. As much as I was ready for this, it was still a punch to the stomach. I have known about transplant since I was a kid, but now it was becoming my reality.

In July I got a call from the transplant team to set up, what they call, an evaluation. This consists of four long ass (yes, I will swear in this blog, if you don't like it, this blog might not be for you) days of testing for every thing under the sun. Blood tests galore, scans of every kind, and breathing tests, walking tests, swallowing tests, educational sessions, psych evaluations, and clinic appointments.  I had my evaluation last monday to thursday. I walked away from those four days almost wanting new lungs right then and there. It was tiring, overwhelming, and just all around exhausting. My mom was with me, and so was Tom. Unfortunately, my dad had to go back to Chicago to work. He was missed, but both my mom and Tom did a great job in supporting me.

Let's take a minute to pause. For me, this has been my reality for the last few months so to type it out is not the biggest deal.  Some of you might not be breathing at this point. It's okay, you can stop holding your breath. It's a lot to take in, it has been a lot to process for people who already know. I know my head is spinning, and most of this post feels like I'm just pouring out words, a little too much verbal diarrhea if you ask me, but my thoughts are just coming so quickly at this point.

Because this post is already getting long, I'm going to leave you with this information. To summarize, my lungs are quite weak, with only 27% lung capacity, I'm not functioning daily as well as I used to. My doctors have decided a transplant is best for me, and so I went through the evaluation process to determine if I am an eligible candidate. I don't know right now if I will be put on the list, but I will find out Tuesday. My next post will detail how the list works and where I will fall on that list.

The blog as a whole will obviously be detailing this big journey of mine. I have not always been so forthcoming with my emotions, I always let people think I'm fine. Well, this will be the place where I will definitely be writing how I feel. It will be raw and hard to read at times, but we all know I'm a positive Polly, so there will be uplifting moments as well. This blog will also serve as a way to pass the time while on the list. I love to cook, so I may share recipes, and chronicle my days with Tom and what we get up to in California. This will be my space to say it all. I hope you join me on this journey and don't hesitate to ask questions along the way. One thing I ask is for prayers and positive, healing thoughts during this process. I'm a tough cookie, but my family and I will need all the support we can get during this roller coaster we have already started to ride. Thank you!