One Year Later

Well, today is the day.

One year - how INSANE IS THAT?

Today I spent a lot of time going over this day one year ago. I've been reading over my posts from this moment and through my initial hospitalization and subsequent discharge. The transformation in the life that took place at that time and is chronicled through those posts is INSANITY. The 180 degree shift was over and done so quick that if I hadn't committed to this blog, I think I'd hardly remember anything at all from it a year later!

So many beautiful notes and texts, calls and messages have been sent my way today. I realized quickly that Im not the only one celebrating this day - which honestly floors me. My support system through this has been like none other, and nothing like I ever anticipated.

Let's be honest - I've never been the easiest person to get along with, much less LIKE, so the fact that so many people care is just nuts to me.

But man am I grateful. More than you'll ever know - more than I'll ever be able to express.

I'm a little emotionally drained for today. Turns out this much love is exhausting :)

This wont be a long post for those reasons, but I do want to say this::

God is amazing. He truly is. If you don't believe so, take sometime and re-read this blog from start to finish. If you don't truly come away in complete awe of my Jesus than, well Im not sure what to say. Sorry, but its true. This blog started as a way to keep friends and family in the loop. Something I honestly did out of laziness - I didn't want to have to repeat myself to everyone. How pathetic is that? But it has become so much more than a blog about ME and what I have gone through. Cause lets be clear - none of this was EVER ABOUT ME. It was always - always - about Him. About showing the world that He is faithful to those who put their faith in Him. That He will show up BIG and BEAUTIFUL in the most epic and perfect way, EVERY TIME. You don't have to be perfect - cause man, He KNOWS how incredibly UNPERFECT I am - always have been. I have always been a far cry from someone you would refer to as a "good example". But that right there proves my point. He doesn't pick and choose based on deeds, or money, or who YOU THINK you are. He is faithful because of LOVE. An unconditional, die-for-you, all about you kinda LOVE. And if HE IS FOR US WHO CAN BE AGAINST US? Nobody and nothing. Not pain or disease - He will deliver you from that in the most precious and intense way possible. Cause He is who He is. The great I AM.

BOOM BABY. I freakin love this mess.

Its a hard thing to get your mind wrapped around. One person dies, one lives because he died. Joy and pain. You can't have one without the other it seems. But in the great, big, beautiful, eternal story - it all comes out Joy. For me and for my donor. For my family and his. He may not know it - his family may not know it yet - but this story, these choices, these lives...they have both been gearing up for is moment. To be able to use us both, that our lives are intertwined forever and both point directly to Him.

Aren't the parallels here crazy? There are tons of parallels in the Bible that point to someone's sacrifice for someone else out of love. Never in such an eternal way as Jesus' sacrifice for us but you can see it can't you? This man died - not FOR ME necessarily. I mean we don't know each other. He would have never been able to guess who was saved because of him. But because he chose organ donation, one selfless choice - he saved my life. My life here in Earth has been given a second chance because of the person he was and what he knew to be the right thing. Because he wanted to be a change for someone. He was certainly a change for me. He saved my human life. And because he did, I can tell you know that he also saved my eternal life. Cause there is no better way to figure out where your heart really lies than to give your self and your life over to Jesus and let him take over the arrangements. He used this man and his kind heart to change mine. And to both - ill never be more grateful.

A story like ours can only be possible because of a God like Him. It's too perfect, even through the pain and the heartache, to be conceived by anyone but Jesus. Man isn't that smart or creative to construct such an overwhelming story. We just aren't. We are frivolous, silly humans barely capable of doing more than eating, sleeping, and wanting more than we deserve. None of us have the capacity to create in LOVE like this. And my donor and I are no one special. There have been thousands - MILLIONS - of stories like ours through history. Jesus does WORK. With even the least of us. Believe me.

Well, that's prolly gonna hafta be it for now. One year down - here's to many more to come. Thank you Jesus. Take care of my friend up there.

BIG LOVE XOXO

E

Yup, I'm a slacker

I know it and you know it. Im not great at this blogging thing. Atleast I know where my strengths lie.


FAR AWAY FROM HERE.


Can you even consider this a blog if you don’t post more often than I have been guilty of lately? Obviously this isn’t something I have ever done before but I mean geez. I need to get back to this or just close it down.


As you may have imagined, posting to the blog was starting to get a little monotonous for me – and I am sure for you all as well. Not because of anything bad. But because everything was so GOOD it didn’t exactly make for interesting posts. Does that make sense? How sad it is that we (myself included) have been so conditioned to think that the only thing worth reading (or writing) is the uber exciting or unimaginably horrible. Average day-to-day activities just don’t excite anyone.


But I guess in my case it SHOULD.


How quickly I have gotten used to this new life. I’m going to be honest – I hardly think about what I have been through anymore. I am more focused on other things and other people’s struggle. I guess that’s a good thing. But sometimes I don’t even think about it until I am meeting new people. And usually I am not the one making a big deal out of it. I guess that just shows the impact it really did make on others. I still find it odd to think of it as a big deal. Cause I mean it was, but when you approach something that big and you don’t really have any other options it just sorta is what it is. And I guess because everything has been so EASY in terms of recovery…I guess it just seem like a big deal to me anymore. I know it was, but its hard to think of it like that anymore. In my mind it seems as routine as an appendectomy. In truth, I think when my appendix ruptured years ago the recovery from that was more painful and left me in “recovery mode” far longer. Now this transplant is just something that happened. Its done with, over. I’m just focused on moving on.


Sometimes I feel bad about that. Like I should be more conscience of what I went through and focus on it and my donor more. That’s not to say I don’t. I still have a point every day where that man – whoever he is – goes through my mind. But its no longer the consuming thoughts I used to have. I will never be able to express my gratitude to this man, but to dwell on him seems odd to me. I feel like he didn’t make the decision to donate his organs for the recipient to just sit around and dwell on him and not live. If it were me I would want the person who got my heart or my lungs or whatever organ they to LIVE.


And I plan on doing just that.


Im taking this part of him everywhere I go. I always know he’s there, just no longer at the forefront anymore. He’s along for the ride. Our lives will forever be intertwined, but this is still my life. A life I am still living because of him, but my life nonetheless.


So, all that being said - lets back up a bit and recap.


May was CF awareness month. Of all the things for me not to post about. Honestly. I am a sorry excuse for a CF advocate. I did lots on Facebook, but still. Oh well. What can I do now?


I also had a small hiccup and was in the hospital for a few days. Luckily this time I was not in for ANYTHING lung related. Of all the times I have been in the hospital this is the FIRST time I have not had to be on oxygen. It was the STRANGEST thing. I kept thinking something wasn’t right, like I was missing something. It was a fantastic feeling to be honest. I almost forgot all the issues I have cause it was such a NORMAL hospital stay (is there one of those??). Of course until the nurse comes in to give me pain meds or change out my IV and shes dressed from head to toe in the oh-so-lovely contact precaution yellow gowns, face mask and gloves! Then I was like “oh yeah.” Still technically “sick” I guess that will never not be the case, huh?


Like I said though, the issues I was having was female in nature if you get my drift. Without being to graphic (I can’t believe I actually wrote that here on this blog!), I have several issues with my reproductive system that causes tremendous pain and an amount of blood loss that actually caused me to need a blood transfusion while I was there. Obviously, anytime you have to have blood products as a transplant recipient there are tremendous risks involved. You can catch various things from donor blood, normally most isn’t an issue but with my almost-non-existent immune system, complications can arise. So its usually considered a last resort. But my blood work came back and all my numbers had tanked so it was necessary. Since the cause of these issues is still present I will be talking to Mayo when I go next to discuss more “permanent” fixes. Not sure exactly what that’s going to be as of yet, but the words “partial hysterectomy” were mentioned. I can’t have a blood transfusion every time I get a period so we’re having to go a little more extreme than others might have to. More on that topic once I know more.


So, on to June.


I would like to take this time to apologize to the graduating class of 2013 from Albemarle High School in Albemarle, North Carolina. Bless your hearts.


In case you didn’t know, someone had the brilliant idea of inviting ME to be the keynote speaker for my alma mater’s graduation this year. I know. I know.


Well, let’s just say it was prolly 1) not what the administration assumed I would speak about 2) they will likely never have another speaker like that ever again, and 3) I can say that because I am pretty certain they will never as me back and no one else is ridiculous enough to give the speech I did.


Let me be clear – I don’t THINK it was bad. I mean luckily I didn’t cuss a room full of children, parents and grandparents out and quite frankly that was a huge concern of mine. Turns out there was like a pool going to see how many cuss words I would let loose. Not sure if that was just a joke when I was told that, but I wouldn’t have taken that bet that’s for sure.


Still, when your mom counts how many times you used the word crap in a speech, there is prolly a little something lacking.


Just want to say I tried people. You took your chance – hope it wasn’t terrible for everyone.


I was a nervous freakin wreck with this mess. Turns out I’ll never be a motivational speaker!! Thanks to my sister who provided a little “liquid encouragement” in the parking lot I was able to get on stage and not lose it. Don’t get it twisted – it was just a SMALL encouragement. Maybe shouldn’t have mentioned that here, but what can they do to me. I wasn’t paid to do that so the only real thing they can do is not ask me back which, let’s be honest, prolly wasn’t gonna happen anyway.


I’m such an ass. Most people would get on here and speak about what an honor it was (which it actually was) to be asked to speak, and give their congratulations to the Seniors (which I do), but as you can see my focus is always just a little off. Sorta like my speech.

Jillian and I before I embarrassed my self.


*SIGH*


Anyway.


After that nightmare came our annual “Fam Jam” at Daytona Beach. Every year for as long as I can remember my family on my mother’s side as decended upon unsuspecting Daytona to wreak havoc on its beaches and in its bars. This year was no exception. Except that this year was a little different for me. Every year I have been since I moved down here has been fairly miserable for me. I am either just getting out of the hospital before, or right after the week is done I am IN the hospital. Quite frankly it was just annoying. And forget about me having a great time. I could hardly ever breathe, and toting around oxygen poolside is not exactly anyone’s idea of a good time. I was exhausted all the time, and walking from my room to the beach seemed like walking across country.

 

Sunnin poolside (and yes I am wearing like 55 SPF)
 

Unfortunate Karaoke evening 1

Ahhh..beach time

You can BARELY see my port anymore cause of all the FLESHY-NESS..

.do YOU know where it is?

Trying to act like I know what I am doing with a camera

 

Poolside refreshments

Typical FL weather....daily storm, like clockwork at 5pm

CORN HOLE

MASTERS OF THE BAGS

My sexy cousin Fat Jacob (love you boo ;) )

Pool, beach, cowboy hat, GOT LUNGS coozie, and a Coors Light? Sounds like

a good vacation to me.

Ummmm....

DAYTONA BEACH BABY

My glorious (and newly engaged) cuzzo Carly and I...typical

(check out her blog www.howdairyyou.com )

Last year I was only at Daytona for two days. Most of my time was spent going through my evaluation at Mayo. How crazy is that? How DIFFERENT everything has become in less than a year. I honestly was sorta thinking that last year was gonna be my last year going, which is why I went at all. Just to go one last time. Guess God had other plans! J

This year was a blast. I could walk and run. Unload my car all by myself. Haul things to and from my room with little to no effort. I even walked for what seemed like miles down the road from one bar to another one night. You can FORGET about that happening in previous years. I know – this doesn’t exactly seem like “exciting” accomplishments. But I’m telling you – unloading the car and pushing a heavy ass cart full of my crap across the parking lot and up to my room with no help was damn near a thrill for me.


The little things. Doesn’t take much does it?


 Now we are into July. Lot's more to come, and even more to update you guys on - including my most recent Mayo Clinic visit - but you'll hafta check back later for all that.



Hope everyone is having a great summer! XO

5k Speed, almost

Wow. Been a crazy eight months. Yep you heard that right -- 8 months.
8 months since a young man in Miami passed away, and by his selfless gift he saved my life. It still is almost unbelievable some times. The idea that my lungs are not my lungs. That part of me is not ME. And that my body works better without ME in it. Weird. Does that make sense?

I dunno. Don't guess it really needs to.

More news on my bionic body :: she dragged her ever-growing ass across the finish line of her very first 5k post transplant this past weekend - The Gr8 to Don8 Organ Donation 8k/5k. Well, it was really the first in about 11 years, so lets just say it wasn't the most exciting run, nor the prettiest, but it was 3.1 miles and I ran (almost) all of it. I crossed the finish line with a mildly embarrassing 48min (pretty sure it was somewhere between 45-48, I didn't look until i had already crossed and remembered they had a big clock posted for time) 5k speed. A far cry from the 20min 5ks from high school, but what can you do.


Organ Recipient 5k run number - 64! (Square root? = 8!)


Official run tshirt!


Runnin the track during the last .1 of the race

I realized half way through the run why I felt so sluggish opposed to the memories of how it used to feel when I ran. Aside from the obvious lack of muscle tone (its a work in progress people), I am enormous. Yup, officially hit the 152lb mark. Through the run I was VIVIDLY aware of the constant jiggle coming from a mysterious place behind me, one that I have never been aware of before. It was my ass. Its finally happened. I have an ass. Don't get too excited, we aren't talkin about a JLo booty...just one that fills in the seat of my jeans. No more frog/old man butt for me! But it has been quite an adjustment. There is just so MUCH of me. I mean, Im not FAT - but it definitely feels that way! I am OVER 30lbs heavier than I was the day of my transplant, and I have NEVER been this heavy in all my life. Learning how to maneuver this weighty body has been a strange, but welcome sensation. Except when I learned that it was partly to blame for the slow go through the neighborhood during the race...

At any rate. I ran. And it was pretty stellar. My donor lungs and my body worked pretty well together. I wasn't breathless at all, so that was pretty fantastic...and thinkin about my donor during that run made me more thankful than ever that he decided to donate his organs and that I was the lucky one to receive them. These bad boys are the real deal!

April is organ donation awareness month. By choosing to donate your organs when you pass you can potentially save the lives of eight people, not to mention the healing of many more through tissue and tendon donation. Be someone's hero and sign up to donate your organs! Learn more at www.donatelife.net or by reading the organ donation/transplantation section of this blog. Even if you don't think your organs would be accepted for one reason or the other - sign up anyway! You never know what can be used. Id love to hear from those who are donors - new donors and previous donors!



8 months, 8 lives that can saved through one organ donor, race number 64 (8x8), today is April 8.... I like 8s. 8 is a good number.... :)

Thanks again for all the continuous support! Remember to recycle your parts! :)

Much love...
Erin

A little hiccup seven months in...

Ok Im gonna hafta get a little better at this.

So its been a pretty quiet month overall. Except for last weekend when my good friend Kevin was called for his lung transplant (he also has CF). He's on the list at Mayo, just as I was. Unfortunately it turned out to be a dry run. So he's still on the list. But he IS number one, so...it could be any day!

Ive been doing great, steadily gaining weight and working out. I have an organ donation/transplant 5k in April. The goal there is to actually run the entire thing. Not worrying about time, just finishing. We'll see how that goes. I don't know if I'm mentally able to not worry about time. Thats just not in my nature, lets be honest. To many 5ks in high school has left me unable to do handle failure well...and running anything over a 30 min 5k (I'm giving myself a long time to run this obviously) is just not gonna work.

One thing I am slightly concerned with tho is a recent change to my meds. They asked me to hold the medication Valcyte which is protecting me from getting CMV (cytomegalovirus) - google that if you want. My white count was low in my latest labs so they told me to hold it to see if they improved. Only problem with that is that it allows the CMV antibodies that were present in my donor lungs to make there way to my lovely immune system, remarkably feee of CMV antibodies. How i never got CMV growing up is beyond me. Over 75% of the population is positive for CMV antibodies, yet somehow in all the sickness i had, never was it CMV. OF COURSE NOT. Soooo Ive been payin attention to how I'm feelin, Spiro numbers and temp and such as so far no real change. But this morning i woke up with a sore throat and i little cough, but nothing productive, more just a tickle. No fever or anything and from what I can tell my lungs sound clear and air is moving easily (yes I have my own stethoscope). For all i know they are just allergies, but I'm getting freaked out. Ive called Mayo and am waiting for a call back. I did follow up labs yesterday but I don't think the results are in yet. They would be able to tell if I am now positive for CMV. This was something we knew was going to happen at some point - anytime you have "mismatch" between the donor and the recipient - but still Im sorta freaked. Soooo until I get a call back Ill be home, laying down and re checking my vitals every hour or so. Lol - can you say paranoid much?

But Id appreciate some good thoughts and prayers that if this issss CMV that it'll get taken care of easily and without any extra issue. Annnnnd that Mayo calls me back like soon. Not exactly how a was hoping to welcome my SEVEN MONTHS post tx, but hey whatcha gonna do. I just hope I don't hafta go to the hospital or anything cause I have a hair appointment tomorrow and seriously things are startin to look a little unfortunate up there...

Hope everyone has a great weekend :)

Much love...
Erin

SIX MONTHS....

So its been a while since my last post and I apologize. But I mean come on -- did you really think I was gonna be sitting around my computer when I can get out and LIVE now?

Unlikely.

Don't worry though peeps, I haven't forgotten you. With that in mind I invite you to celebrate with me

SIX MONTHS POST TRANSPLANT.

Yup, that's where I am at today. I honestly forgot about it. My six month anniversary was actually yesterday. But me being the incredibly busy and oh-so-important person that I am was too busy to think about it. Then when I remembered I felt like a total shmuck. *SIGH*

How in the WORLD did I not even think about that yesterday? I thought about it a few days ago. So why in the world that on the DAY that marked 6 months on a completely new life did I go the entire day without even mentioning it or anything?? Geez...

Oh well, nothing I can do about that now. Other than celebrate it today, and I think that'll work. I mean I was TECHNICALLY not breathing on my own until the first anyway...sooo yeah, we'll go with that.

But I digress.

So, you may have seen if you follow me on FB that 2 weeks ago I had my 6 month follow up appointment at Mayo. I was honestly terrified. It have been three months since my last bronch, xray, PFT, etc. But, luckily, after all the usual mess, plus an MRI of the abdomen (checkin on my liver), everything came back and I am HEALTHY AS A HORSE!! :) Blood work looked great, Xrays were clear, MRI of the liver showed no change, PFTs were up to 111% and my bronch showed NO INFECTION and NO REJECTION!!

Relief...sweet relief.

I mean, I do a lot of vital stat taking, monitoring of my spirometry levels and such everyday. Plus blood work once a month. So you'd think that if there was anything going on I would have a vague inclination right? Well, that's the idea with all that monitoring atleast, but I mean lets be honest - I'm freaking paranoid, and not exactly the most optimistic person in the world. In short -

I'm waitin on the hammer to fall. For the shit to hit the fan. For everything to go to hell in a hand bag....whatever little phrase you associate with everything falling swiftly and completely to crap.

I try not to. And usually I do a decent job. But atleast once a day I feel a little pain in my back or chest, have a tickle in my throat or just feel odd. Aparently these things are all normal and a part of the healing process. But still. I don't like it. It freaks me out and I immediately wanna go to the doctor and have them do a full work up to make sure I'm ok.

I am a basket case, I swear.

But that's just part of this I guess...and I knew it would be. And trust me, I wouldn't change it for anything in the world. Just something else to get used to I reckon.

Aside from all that though, things are going pretty smoothly. I am workin on getting ready for my very first 5K race in over 10 years. Yup that is happening like next week. Needless to say I will likely be WALKING most of that, but I mean hey - walking 3.1 miles is HUGE compared to what I was able to do...which was little more than a walk to the bathroom. So, I'll take it.

I am also planning on 2 more 5Ks this year (maybe more, who knows) -- one in April, one sometime in the fall. So I am hoping that by the last one of this year I will be running most if not all of it -- and not like a pathetic run. Like a semi-respectable run.We shall see I guess...

I'd like to take this opporutnity to send up a big THANK YOU to my donor. Thank you so much for taking such good care of these bad boys. They are amazing. My life is amazing. I am so glad you were my donor -- whoever you are...

So here's to a new year, new lungs, new health and new adventures..... I'm ready. BRING IT ON. :)


 

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...


Erin


**To learn more about the Breathe Easy Foundation or the Cystic Fibrosis Pharmacy of Orlando visit them online at:
www.breathe-easy.org
www.cfpharmacy.com

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

Thankful - doesn't even describe it

Happy Thanksgiving!!




Gotta love google right? :)

Chris and I just got home from celebrating with friends and family all day. I hafta say, this has been the best turkey day in YEARS. For the last few years, I have spent more thanksgivings sick and in the hospital that I have OUT of the hospital. And those I was out - I was still feelin like crap. This year -- total 180. We did the whole eat thing (and I'm fairly certain I ate at least HALF my weight in food - which is more impressive than it might sound considering the fact that I had to JUMP into my jeans today). I had fun, energy and even walked with my cousins, soon-to-be cousin-in-law, and a friend down to the intercostal waterway (annnnd a flooded field my cousin tried to present as the intercostal - we're smarter than you think Amy lol).

After our foot tour we left for a visit to a friend's house. God bless Italians. I'm not generally much for Yanks, but every so often you meet some northern Yanks or Pollocks and you just fall in love...(and I mean that sincerely, I'm not makin fun!)












To say that I'm thankful for the major change in my life would be absolutely INSULTING. The way this whole transplant thing is goin, I'm not sure I'll ever be more thankful to God for anything more. If there is something bigger ahead - well, I just can't see it. But then again I honestly didn't see makin it TO transplant, much less THROUGH it. So I guess anything is possible.

More than my life, I'm thankful for the people in my life. This entire journey would not have been the same without the incredible people who have stuck by me. My husband-who stuck by me at my absolute worst and who has driven me to the hospital more times than I can count in the wee hours of the morning. Who never left my side before or after surgery, and who has been better to me and for me than anyone I've ever known.

My parents - who traveled back and forth over and over, took a ton of time off from their jobs to make sure I was taken care of. My sisters who left their families at home to be with me during and after surgery, and who kept the pictures, phone calls and videos of them and my nieces comin when I was able to see them. Nothin can put a smile on my face quicker than those girls. Their husbands, my brothers, who have supported me and my sisters while I was in recovery and took care of the girls while their moms were with me.

The rest of my family - grandparents, aunts, uncles and cousins and in-laws who made sure we had what we needed and kept my husband fed while I was in the hospital.

My sweet sweet friends. All the beautiful women who I love so much. Whose love and support I couldn't have done this without. To so many amazing people back in Stanly County - they leave me at a loss for words. All the calls and cards and fundraisers for us has kept me in constant tears. Seriously I don't think I have cried as much in my entire life!! I def do not feel worthy of all the support, donations and most importantly prayers. You all have literally saved me. Without y'all I probably wouldn't not be where I am now.

My amazing doctors. Dr Layish here in Orlando has worked his butt off to keep me alive the last few years. And let me tell you - I made him work for his money!! :) He is one of the greatest doctors I've even known, and I am eternally grateful for all he has done for me and for his Mayo recommendation. He will always be a very special person in my life. My Mayo team - Drs. Keller, Mallea, Alvarez, and Erasmus. Truly some of the smartest men in the world and have saved my life. They took such incredible care of me. I'll never been able to repay them for giving me my life back.

My donor and his family. The 30 year old man from Miami who made the decision to donate his organs when he died. Who saved my life and gave me a life worth living. I wonder if he could even comprehend what he would be able to do for someone when he passed. I spent so much time at the beginning completely terrified of whether these lungs would "take." I don't worry about that anymore. Whether I get one year with these lungs or ten, I will always be thankful and grateful for the chance to live this way, even if its for a moment. I'm thankful for his family, that they decided to honor his decision instead of contesting it. I'm grateful for the life of their son, and their influence in it. His lungs were perfect. Whatever he did in life - he did good. I just hope that he's in heaven now, sitting next to Jesus thinkin, "That's awesome. That's why I did this." I also hope he knows how grateful I am, how I carry him, whoever he is, with me everyday, and that I will never take his life for granted.

Most importantly, I'm thankful for my God. For whatever reason, he put me here for something. I've been told so many time how inspiring my story is, what a miracle this all is, and how so many have seen Jesus' hand in all this. I don't know how or why - but I'm startin to agree. Like I said, don't know why it needed to be me, but Im ok with it. He's given me this opportunity. To some how make a difference somewhere, so I hope this wasn't my entire purpose, to go through this. But if it is...I'm ok with that. He's delivered me from the hell I was living in. And for that, I am eternally grateful.

I hope you all have had an incredible thanksgiving. You all have meant so much to me through this. I will be forever indebted to you all.


Much love...xoxo
Erin

I JUST GOT THE CALL!

Holy crap people this is not a drill!

At 1am I recieved my call from Mayo Clinic - they have  LUNGS  for me!!


As its stands right now, my surgery is scheduled for 12 noon on Tuesday. Right now I am getting discharged from Winter Park Memorial in Orlando, headed back to my house to geab some stuff and then we are off to Jacksonville. 


Unless we get up there and they determine that the lungs are not viable, it looks like by this time Tomorrow I will be breathing with a new set of lungs. If the lungs are not viable, this will be referred to as a dry run and then the surgery will cancelled. Ill remain on the list at my current stop and the waiting will start over again.




So, here we go guys. This could be it. Thank you to everyone who has kept my family in their thoughts and prayers through this. Please continue to lift us up today. Pray for my team of doctors, that the surgery is a success and they are guided by God's hands. Please pray for my family as they wait during surgery. Please pray for my donors family. Today they will say goodbye to someone they love. Ask the Jesus hold them as they say their final farewells to their loved one. Ask that they feel your prayers for them through this. And finally please lift me up in prayer. I need all the prayers I can possibly get.


Thank you...I love you all.




XOXOXO


ERIN