Friday, December 7, 2012

Another set of lungs...

#recycleyourparts #donatelife #cfawareness #breatheeasy

Today's post isn't really bout me. But it is about a lung transplant.

Most of you know I work with a non-profit here in Orlando called the Breathe Easy Foundation. This organization provides financial assistance to improve the quality of life for patients with cystic fibrosis and to help lift some of the financial burden they face. Anyone familiar with living with a chronic, terminal disease is well aware of the obstacles they face daily - the inability to work full time because of poor health, the possibility of no insurance because of pre-existing conditions, difficulty paying regular bills due to lack of income, difficulty affording many "special" needs many require because of their financial and physical limitation. So much goes into PAYING to live. It can get overwhelming QUICKLY. I have been very lucky all my life that my parents were able to provide a quality of life that many with cystic fibrosis don't have, and even luckier that Chris and I have been able to bring in enough money to keep us in that same lifestyle. Until recently, with this whole transplant thing, I never had to worry about how I am going to afford treatment or meds, much less how the power bill was gonna be paid or food put on the table. So many of you stepped up and helped us through this time. As I have said before -- and will continue to -- we are eternally grateful we have so many amazingly generous people in our lives. You guys have made all the difference.

A few years back, when Chris and I moved to FL, I was introduced to the founder of the Breathe Easy Foundation, Kevin Przybyl. Kevin also has cystic fibrosis. He was the first person I had met with CF that I had any sort of true contact/friendship with. Many with CF develop friends with other CF patients and they become each other's support system. I never had that. Not that I was missing it tho. I never liked to dwell on my disease. I knew I had it, didn't hide it, but just wanted to live as normal a life as possible. Meeting and speaking about CF constantly with other CF patients just didn't align with that "live like your normal" lifestyle I was committed to. But I digress.
Because of my limited exposure to others with my disease, my exposure to the problems and struggles they face was also limited. Between my own family situation and my lack of acquaintances with CF, I was pretty if ignorant of most issues these patients were fighting.

It wasn't until I moved to FL and began working at the Cystic Fibrosis Pharmacy of Orlando and with the Breathe Easy Foundation that I began to get my first glimpse into the struggles so many face. Things most of us take for granted - being able to put enough gas in the car to get to our specialists office for a check-up. Having enough money to afford the life saving medications and treatments that are absolutely essential to maintaining even a SEMBLANCE of a healthy life. Being able to buy enough food to maintain a 4000-5000 calorie a day diet because of our inability to absorb enough nutrients to maintain a healthy weight. And the list goes on as one's health begins to decline.

Workin with these two organizations have been very eye opening experiences. I've met some amazing people who go above and beyond to make a difference for their patients. Lois Adams and Bev Donelson at the CF Pharmacy have been serving the needs of CF patients around the world, literally since I was born. (More about that in a different post!) The BEF has only been in existence for a few years, but already it's making a difference in the lives of patients around the country. From assisting individuals by providing gas cards so they can get to clinic, gift cards to grocery stores so they can stock up on high calorie items, providing financial assistance to lung transplant patients for their transplant expenses, to remodeling patient rooms at Winter Park Memorial Hospital here in Florida for the expressed use of its CF patients. As most of you know, CF patients often go into the hospital for a week to two weeks (or longer) for what's commonly referred to as a "tune up," which consists of lots of tests, blood draws, IV antibiotics, chest physio therapy - and who knows what else! The BEF provided funds through its Community Based Projects initiative to purchase new, large and comfy recliners for the patient's or their caregiver's use in two rooms. We also purchased large flat screen TVs, installed new laminate hardwood floors and new paint. Making these rooms clean, bright and with some upgrades have made them into the "healing spaces" patients admitted for long term care need.

Plaque on the wall inside on of the remodeled rooms indicating the donation to WPMH.

New TV, paint,etc...we did the floor and the recliner we provided is not the one shown in this picture.

I have been seriously lucky to meet many people in the Central Florida healthcare/medical industry, as well as some amazing and dedicated people in this community. One of our board members is a CF Mom, Cassie Snyder. Her son, Brent, has CF and is in his mid twenties (he's just a few years younger than me). It was determined earlier this year that Brent needed a lung transplant, not unlike myself. He actually was going through the transplant evaluation up at Mayo in Jax when I was there for my actual transplant! Brent went on to be listed locally here in Orlando at Florida Hospital's new lung transplant program.

Wednesday night around 10pm, Brent finally received his call for lungs! The initial call was just "we might have lungs" that had changed to "yup! We've got lungs" by 1am. So off to FH to start the "possible" transplant. Remember, it could all get called off at the very last minute (called a dry-run) because the lungs are not viable. Luckily for Brent, his lungs were a GO! By yesterday (Thursday) at 2pm, his surgery was complete and they began closing him up. The doctor informed Cassie that everything went great, and that the lungs were working "Beautifully!" How awesome! I was beside myself all day waiting for this news!! I have no idea how my family and friends got thru my surgery. I was consumed by it all day! Bless you people...I can tell you, I didn't get thru it alone. Thanks to the good folks at Pfizer and their little anxiety pill, I was able to not lose it completely until Cassie called me with the news. By 8pm Thursday night Brent was completely off the vent!! THAT is some craziness.

Brent and his mom Cassie before getting wheeled back to the OR for transplant!

Brent was the first CF patient to undergo a double lung transplant at Florida Hospital's new lung transplant program. The news media was there and recorded the event - even getting some video footage the moment the lungs arrived from Georgia. I can't wait to see this! I'm not sure when/how/where it will be shown, but I'll try to figure it out and if I can share it somehow I will.

Man. It seems like lung transplant is everywhere lately. It continues to floor me, this incredible miracle God keeps allowing me to be apart of. It has changed my life in so many was. And now with Brent joinin the ranks of us CF patients who are suddenly breathing with O2 stats at 100, up from low 90s at best - this just keeps changing my life in ways I never expected. It's just freakin incredible.

I know I've mentioned before how important organ donation is - but truly I can't say it enough. The miracle you all witnessed with me and now have been able to see with Brent, none of it would have been possible if it weren't for the incredible generosity of our donors and their families. The people who chose to donate their organs when they passed are truly the Heroes of these stories. The most incredible thing you can do for another human-being is to save a life. It is truly to be Christ-like, as He is the ultimate lifesaver. It is a debt those of us on the receiving end will never be able to repay. But that won't keep us from living everyday for the miracle and blessing that it is, and to carry these selfless people with us in our hearts and in every deep breathe we take.

If you haven't considered becoming an organ donor, or if you have, but are still unclear in your choice, I encourage you to learn more about making this life saving and life changing decision. Click on the section here in my blog about organ donation and transplantation to learn more and to find links to become a registered donor. *Remember! Just expressing your wishes to your family members may not guarantee your donation. It is much easier on your family at such a difficult time if the decision is already made and its not something they have to decide on. Make sure you register by checking out the links I provide in this blog to make sure your wishes are fulfilled. As a lung transplant recipient - I appreciate your willingness to consider being a life saver!!

Congratulations Brent and Cassie! It's been a long time coming and I couldn't be more excited for you. I am so glad Brent will be enjoying this second chance. Please keep this awesome guy and his family in your prayers through his recovery for healing, no infection and no rejection!

Much love...


**To learn more about the Breathe Easy Foundation or the Cystic Fibrosis Pharmacy of Orlando visit them online at:

You can also like them on Facebook (Kevin A Przybyl Breathe Easy Foundation & Cystic Fibrosis Pharmacy) or on Twitter (@BreatheEasyUSA & @cfpharmacy)

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