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

Tis the Season!

Ahhh...Christmas has officially arrived at the Taylor house.

Christmas is my FAVORITE time of year. Well, the season itself, what it represents, and the fact that I get to be with my friends and family - especially the ones I don't get to see often. I could skip the angry and rude shoppers at shopping malls and other retailers ( I will never understand that as long as I live. Seriously people, its the holiday of love and giving and it feels more like MMA tryouts if u venture out to shop any time after Thanksgiving, and through the New Year). Christmas decorations that pop up like two days after Halloween, and "politically correct" -- someone give me a break with this crap PLEASE -- references to the "holidays" in an effort to avoid insulting people just irritate me to no end. I cannot understand how a holiday - whose entire reason for existing is the very essence of Christianity - is being turned into a generic "Hallmark holiday" because the constant religious references OFFEND some people. Are you KIDDING ME? Sorry people, just because you want to take advantage of the pretty lights and the idea of getting lots of presents (for apparently no true reason in your world) doesn't mean that the entire reason for the season isn't Jesus. You need to get on board with that, or seriously just make up another holiday. Say on like the 26th and call it All Snowman's Day and celebrate it however. For those who live in non-snow climates, well I hope that doesn't make you feel "left out", "offended" or "discriminated against", but well, a) it was just a suggestion and b) well, I don't honestly care. Life's tough, get a helmet. Do what you will, but leave my CHRISTmas alone.

Ok, off my soapbox - sorry, that devolved quickly.

Annnnyway, like I was saying, I love Christmas. Decorating my house has always been my favorite part. I have this sick obsession with Christmas tree ornaments. I literally have HUNDREDS. Growing up I remember always having tons of ornaments. Then again, they were acquired over years and years, many of them hand made by my sisters and I and, well, that just adds up quickly. It made sense to have lots.

But I sorta skipped the handmade-by-children part and the slowly-acquire-many-over-the-years concept. In the five years that Chris and I have been putting up a tree together I have purchases literally hundred of ornaments. So many that I have already gone thru and purged some and given them to Kellyn for her and Ronnie's first tree together. Having to decorate your very first tree isn't cheap, especially when you like a tree full of ornaments and you are starting at zero. Not that that stopped me that first Christmas (altho when Chris found out that was almost the END of Christmas that year lol). I was all too happy to donate some to Kelly and Ron, especially since that meant I got to go out and replace them!! ;)

I have a sickness when it comes to ornaments. A true love affair with these beautiful, sparkly, shiny globes, crosses, snowflakes, reindeers, Santas, and every other unique little dangling pieces of lovely. I treasure every single one and love to just look at them. As soon as retailers start putting them out, I'm there, picking out new ones every year. Generally I don't like spending a lot of $$ on ornaments (I mean like individual prices), although I have been known to cave in the past and scoop up a variety of $8-10 (each) pieces of unexplainable dangling happiness. But that is the exception, not the rule. As much as I love quality, I'm also a QUANTITY person. I like my tree so full of ornaments you can barely see the tree itself. Hobby Lobby has been my best friend when it comes to quality ornaments and prices that promote quantity, LOL! They ALWAYS have great prices (most are listed $5 and under) and are ALWAYS 40-50% off. So I mean lets be honest. Getting ornaments at the $1-2 mark -- well lets just say it can get a little cray cray.

At any rate, I love the way my house looks at Christmas. I never want to take the decorations down. If it wouldn't be weird I would leave them up year round. I love the feeling of warmth and fullness my house has when all the decorations are up. A few years ago I learned I was allergic to trees (which when living in NC was a def issue). We had to commit to all fake trees at that point. That was a sad time for Chris and I. We LOOOOVE the smell if Christmas trees. However, I have learned that the advantages of the fake tree has begun to outweigh those of a real one. No more throwing $$ down the drain every year, no never-ending battle against the falling pine needles, the leveling and re-leveling, the army crawl under the tree to water it constantly... sorry but just thinkin about that now makes me totally over it. Not to mention the utter failure of our very last real tree. We attempted to "choose and cut" our tree that year. Unfortunately I was very sick and we couldn't travel up to Boone to do it properly. So we decided to stick around town and visit some of the (very) few tree farms in the Stanly County area (piedmont region) of North Carolina. Needless to say, areas that have high heats in the summer around the 100 degree mark doesn't lend itself to quality Christmas trees. The one we purchased (despite my protests and a loud and slightly embarrassing yellin match between Chris and I over the tree I did NOT want) was half dead the day we bought it and was not the type of pine tree I liked. By the time we got it home and set it up, it was well on its way to resembling one of those Charlie Brown trees. I'm talkin we lost more than half those needles just gettin it set up. My mom was over helping me and was laughin so hard I thought she would pee in her pants. Which just made me more and more angry, which would just keep making her laugh even harder. It was a vicious cycle.

At any rate, by the time it was almost up and finished, the unmentionable happened. The damn thing fell over. Yup, just fell right on over, ornaments and all. I was livid. I had never wanted Christmas to be OVER so badly in my life. Well, here I am tryin to prop the tree up and am cussin Chris for all he's worth (gotta love my holiday spirit, right?). Mom is LESS than useless at this point. She's laughin so hard all I want her to do is get off my couch cause Lord help her if I hafta clean up cause a grown woman wets her pants on my upholstery. Luckily - VERY lucky - that didn't happen. Long story short (or not), that was the last real tree the Taylor house ever saw.

While my initial reaction to no more real trees was slightly disappointed, I realized quickly how utterly fantastic fakes are. No needles to clean up, not watering, no leveling, and best of all most come prelit (never something I was good at - that was always Kellyn's part of tree decorating). And while I missed the smell, I realized there was a number of candles, sprays and now even these little green things you hang in your trees to simulate that Christmas tree smell. So thank you retailers everywhere - I officially want for nothing when It comes to my tree.

So today, I finally got all my Christmas decorations up. And I did it allllll by myself. Got the tree out, put up, lit and decorated. It's been years since I was physically able to do all that, and even when I was feelin ok I still just didn't have the physical capabilities for all that. So while my original plan was to just get all the stuff out and then I'd wait for Chris to get home from work to help me. Well, that idea sorta flew out the window once I started. It felt so good that I was ABLE to do all that I couldn't stop. I'm tellin you people -- the things you don't realize you miss out on when your as sick as I was is crazy. I don't think I even realized exactly how sad my life had become. Not until just recently a is it all REALLY coming into focus. It's so easy to take advantage of the simplest things - like decorating a Christmas tree. I'm tellin you, as long as I'm livin, I'm never takin advantage of the small stuff again.

I have a feelin this might just be the best Christmas EVER! :)




Tree 1 in the front foyer ( yeah u read that right...)




Tree 2 in the living room



Tree 2 (again)




Annnnd Tree 3 (small, but cute - in the dining room)

YUP, I have three trees this year! (It was necessary in order to be able to hang all the ornaments ;) )




One of Chris and I's wedding pics on display.




Dining room table - hangin the stockings on my bar cause its FL and I don't have a fireplace :/




View from kitchen into dining-living room




Front foyer (with tree 1) is where my new nativity scene is (thanks mom - I love!). I've never had a nativity scene of my own before and I just love this one. So perfect :)




View if the living and dining room from the front of the house looking back. Tried to get all three trees in one shot. Not the best in terms of that, but it still looks super pretty ;)

Ahhhhh I just love Christmas. Hope everyone is enjoying their CHRISTMAS season so far. Don't forget the REASON FOR THE SEASON FOLKS!! <>

Much love...



Erin

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)

Lotta air in these lungs :)

Just another super quick update:

Most of you probably saw my FB post about today Dr visit. I went to see my CF pulmonologist for the first time since my Tx. Dr Layish is the one who kept me going the years leading up to the surgery. He def had a difficult job! If it weren't for him I wouldn't have made it to Tx, and wouldn't be doing as well now. I got to meet with my social worker, nutritionist, and Dr Layish and they are all super happy with my progress! Last time they saw me was back in March before I even went through transplant eval and my lung function was at 27%. Between that visit and my eval it dropped 6% in about 3.5 months! Today -- 107%! An 80% jump baby! And my weight is at 141 - holdin steady at "water buffalo" status. :)

Good stuff...




Me and Dr Layish - best CF dr ever :)




Today's PFT results! Woot!!



Much love...



Erin

Poster child of Lung transplant

Well folks, you're officially reading the blog of a 4 month post transplant patient. One who was referred to as "the poster child for lung transplant" (I tried not to be offended by the "child" part lol) by her Mayo docs yesterday. Went to mayo and they are super happy with my progress, which makes me super happy! They let me finally get a FLU SHOT which I was sorta freakin out about. They wouldn't let me get one at first because of the possible complications of introducing a virus into my newly suppressed immune system. But, since I am doing so well, they went ahead and allowed me to get one. So, THANK THE LORD for that! I was freakin about about rollin into flu season with new lungs, no immune system and sick people everywhere. But atleast I'm protected from the flu, and my pneumonia shot is still good (got it last year - lasts 5 years) so hopefully I'll avoid anything super cray cray. Oh, and lung function is the highest it's been, so in the words of my beloved Phil Robertson, I'm "happy, happy, happy."

Speaking of Mr. Robertson - does anyone out there LOVE Duck Dynasty the way I do? These people -- well, lets just say, these are my people. They have beards, they are funny and they kill birds. What's not to love?? And I promise, Ol Si is my Chris in 30 years. It's crazy the similarities between them. I'm serious, it's like looking into the future watch that crazy ol coot. You heard it here first people.

Not the greatest pic in the world, but there it is - my SIGNED poster :) Thanks to the great Boyce Adams - husband to my best friend Katie - for snaggin this for me. Prolly can't make it out, but its signed by Phil and says "Erin, Take a deep breath Rom 1:16 - Phil Robertson" Gotta love it :)


Been back to work for a little over a week and I am really enjoying getting back to "normal" - if that's what you can call it. Not sure if this can be considered normal - it waaaaay exceeds any normal I'm used to! Planning on heading back to school in the Spring, so ill be workin on that the next few weeks. I'm pretty excited, but - well lets be honest. My first attempt at college didn't exactly go as planned, so fingers crossed this one turns out better than the last.


Well, guess that's about it for now. Nothin super exciting happening right now. Sorta seems like this blog as served its purpose. Not sure where I'm gonna go from here with this thing, but I'm either gonna hafta stop writing or I'm gonna hafta start coming up with stuff more interesting than my day to day activities lol.

So, hope everyone is having a great and are gearin up for a great holiday season. I'll be heading up to North Carolina the weekend before Christmas and I CANNOT WAIT! The countdown begins - 22 days!

Have a good one everybody...



Much love...



Erin

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

It's good to be home...

What a week. Well, last TWO weeks I guess. We have officially been HOME for two weeks now. Sorry it's been a while since my last post, but its been a little crazy since the move back. Tryin to get my house back in order, tryin to get through the tons of thank you notes I'm writing, and loads of other stuff, has kept my time for blogging to a minimum!

My first day back was a little surreal. I kept walkin around the house as we moved our stuff in thinkin, "I can't believe I'm here. More than that, I'm here and I can breathe!" It's crazy to think that the last time I was in this house I was circling the drain. Sittin in my chair in the living room is weird. (Yes, I have a "my chair" - no, Chris does not LOL) Before, I had been camped out there for days. I was strapped to oxygen 24 hours a day and could barely get up to fix something to eat without struggling HARD. I was seriously miserable. I'd be posted up in the living room hurting, wheezing, coughing up blood and puffin on my breathing machine half a dozen (sometimes more) times a day like it was my job. I feel like I should be surrounded by a variety of medical equipment, but that's no longer necessary. Weird.

But awesome.

Kellyn, Ronnie and Mabree came over last weekend. Mabree had been given Sea World tickets last Christmas by mom and dad and since I was feelin AH-MAZING I got to tag a long! Do you have ANY idea how awesome it was to be able to walk around a park of that size and not be phased by it at all? To not hafta take constant breaks to catch my breath? It was so much fun and I was so glad I was able to go and see Mabree's reaction to all the whales and other animals, and to be able to ride the Journey to Atlantis log ride with her - her face in the picture is PRICELESS! I wasn't able to ride the awesome lookin roller coasters yet, just the non-jarring log ride that gets you SOAKED, but as soon as I'm cleared for that I'm goin back. Dad got me a Fun Card (pay for a day come back all year) soooo as soon as I'm done healin I will be ridin the Kraken.



Mabree is so stinking funny!


Still feelin pretty amazing - home spirometer reading the other day showed my FEV1 at an all time high for me - 107%. I have NEVER had lung function this high before EVER. Not even when I was at my healthiest and running miles a day during track/cross country or playin soccer or basketball. I didn't even KNOW your lung function could get that high. And if I had I would have NEVER believed I'd ever reach it!

Weight is maintaining right at 140. Next goal is to put on 10 more pounds of muscle weight. I also may have mentioned this before, but I gained an inch of height. Well not so much gained, just got back. Last few years I dropped from 5'11 to 5'10. I was in so much pain and had such a hard time breathing that I had started slouching and getting all hunched over. Well I'm standing and sittin straight now so the AMAZON IS BACK BABY! I've had to buy some new clothes because my pre transplant body was shorter and much skinnier than I now. Particularly my pants. I had gotten to literally havin to SHOVE my self into my jeans. (Never thought I'd EVER have THAT happen!) I'm talkin circulation issues here people. But my shirts aren't fitting great now either - my arms (and other things north of the belt line) have gotten larger as well. So unless the clothes were on the big side before its just not happening. I plan on goin through the closet and dressers this week and makin some serious donations!

I went to the Central Florida CF Support Group education day yesterday and spoke to the participants about my transplant and this blog. It's safe to say my public speaking skills are seriously lacking. The entire time Im tellin my story, all thats goin on in my head is "Don't cuss at these people. Don't say anything ridiculous or inappropriate. Seriously, don't." I don't RECALL any major slip ups, but with my prednisone/prograf brain I honestly can't really remember. So any of you reading this today that were in attendance yesterday I do apologize. Not only for the poor delivery, but for anything absurd that may have escaped my mouth - I did try. Being a motivational speaker is officially off the table as a possible career choice. I'll stick to the blog.

Tomorrow I'm starting back to work. Part time of course, but I'm ready to get back. I'm also gonna be goin back to school in the Spring, so I'll be workin on gettin all that stuff worked out this week. Pretty excited about it, but also a little nervous. It's been a while since I was last in college and well, I wasn't exactly success story (that's prolly putting it mildly). So pray for me people. This should be interesting.

Oh and for those who may have missed my FB post last night, we had people over to our house and I cooked a ton of food. It was super fun to finally get back to cooking. It's always something I love to do, but - like everything else - had become nearly impossible for me to do much of. I decided to try my hand at frying shrimp for the first time. Spent like an hour dredging these dang things, dippin them in this homemade beer batter and frying them up. My house REEKED. I am not a fan of ANY seafood and was not happy that my entire house freakin stunk. But they cooked up quick, looked like (what I thought) they were supposed to look like and honestly I was pretty excited that I got them done without some sort of grease fire or severely burning the shrimp. I set them out right before Chris came home and he beelined right for them once he walked in the door. It was at that point he informed me that, while they looked great, they had been battered and fired with the shell and claw/leg thingys still on. I was pissed. I don't eat shrimp, much less ever tried to cook them so I had no idea I needed to do that, especially after I asked the dude at the seafood counter for like ready to cook shrimp cause I didn't feel like deveining a bunch of nasty shrimp poop. Well apparently THAT didn't happen, and my ignorance of all things shrimp didn't put me in any position to notice any thing was wrong. So needless to say those shrimp found their way to the trash and I was furious. I have decided I am giving up on cookin all things seafood. I tried to cook Salmon for Chris and I last year and that was also a complete fail. So I'm done. I gave it the ol college try. I'm stickin to what I know from now on.

Seafood - 2 Erin - 0


So there you are - pretty much up to speed now. I'm goin to end here and go enjoy my Sunday Funday, which will consist of cleaning and other house stuff today. We really know how to take advantage of our day off together don't we? Hope you all are well, and as always, big thanks to everyone for continuing to pray for us and for stayin on this journey with us!

Enjoy the day folks! :)

Much love...



Erin

Happy Halloween & Three Months Post Transplant To Me!

Happy Halloween everyone!

While this Halloween is pretty low key for Chris and I this year, it is by far the best we have had (well except one during college where we dressed up as Team Zissou from the Bill Murray movie, The Life Aquatic. Classic and seriously the best movie/costume EVER...but I digress).

I feel good. Finally. So, I am officially dressed tonight as a bigger (seriously, 25 pounds bigger lol) better version of myself. Woot!! And today is OFFICIALLY three months post transplant. Our countdown to gettin back home is gettin short...this time next week I'll be posting from HOME!!




Exploring with Chris this week :)

But! While WE are not dressing up, some little cuties I know and love are! My sweet nieces are so cute and make me smile all the time. I miss these girls so much, and haven't been able to see them almost at all since my transplant. Their mommies have kept the flow of videos and pictures coming, and without them -- honestly this would have been a very depressing three months. They have kept my spirits high and I adore these girls. So enjoy a few of the pics of my babies that have kept me smilin while I recover! :)

Aunt Erin loves you and misses you Mabree, Mylee & Shelby :) xoxo




All three of my girls with their Nonnie (my mommy!)




Mylee with her miniature horse




Smiley Mylee with mommy's phone




How cute is that baby?!




Sweet Shelby girl on game day sportin her East Carolina Pirates shirt




Mabree at church - yup that's a bird.




Me & Mabree during her visit to Jax




Pretty princess for Halloween :)




Little piggy and baby sheep - so sweet :)


Have a safe and happy Halloween everyone!

Much love xoxo --

Erin

I'm Outta Here!!....kind of

Good news people!

Yesterday, as many of you know, was my full work up day at Mayo. Blood work, xray, PFT and bronch. Blood work and Xray were great as usual. My Prograf (immunosuppressant med) levels were a little high, so we lowered that a bit but otherwise everything was good. Xray looked the same as it did from a month ago, which is super. All that is great, but sorta the more boring of the results. Bronch results came back and, again, no infection and no rejection!! Whoo hoo! Thanks for all the continued prayers for that - they are def workin!

Now for the coolest results -- my PFTs. As you know, they have been steadily climbing each week. Last time I did a PFT, my FEV1 (the score that gives you the best idea of your lung function) was up to 88%, and my Dr said they wouldn't be surprised if I hit 100% before I left. Well, my FEV1 was NOT 100% -- it was 103%!!!!

Yep, you read that right -- 103%. I am officially breathing better than I ever had in my ENTIRE LIFE. Heck, Im prolly breathin better than some of you! LOL!! Sorry, don't mean to be ugly, but this is so stinkin incredible I sorta wanna gloat for a minute, haha! So... who wants to race?? :)

Went back over today to go over all my results with Dr Mallea as usual. And the best part of the last two days was during this meeting. I was given the OFFICIAL OK to head home!!! I won't be able to leave just yet though, not for another almost two weeks. I have a few more appointments next week (luckily nothing that should keep me from leaving) that I have to go to, but as soon as those are over we can start packin up! Unfortunately we only brought the bare minimum here to Jax so we really can't start packin up till we're right about to leave. But since we only brought a few things, hopefully it won't take long (and it won't cause me to down a bottle of Xanax that day LOL). So as of right now, we don't have an EXACT move out date. Probably lookin like sometime during the middle of the week of Nov 5 (at the earliest). They might be adding one more appointment with my infectious disease Dr but Im not sure when that's gonna be. It might end up holding me up just a bit longer. Mom will be coming back to Orlando for a while to help me get settled and unpacked and to help me with gettin to a few appointments when I get home. Hopefully it won't take any more than a week or so once we get back to Orlando, and she can FINALLY get back home to NC for good!

Another great thing about having the "go ahead" -- I can finally drive again! I haven't driven in close to 4 months (remember, I was in the hospital for about two weeks right before my transplant, so its been even longer than just this surgery/recovery). Im gonna need to practice in the parkin lot or somethin before gettin back on the road LOL! Mom says she'll let me drive sometime tomorrow. Just be glad yall don't live here in Jax - this could get interesting!

Can you believe this? This entire thing is almost over. I can't believe that not even four months have gone by since I was evaluated, listed, transplanted - and now Im almost going home. This has been such a whirlwind it still doesn't seem totally real. I don't think it will be completely real until I get back home and get back to work and school (yup, going back to school in the Spring! That's a whole other thing for yall to pray for, lol!!) I honestly thought this entire process was gonna be much longer. The wait list part I was SURE was gonna be MONTHS, not TEN DAYS! That still blows me a way. The fact that (unless crap hits the fan) I'll be able to be HOME for Thanksgiving (something that hasn't been possible for the last two Thanksgivings --been in the hospital with infections previously)!! Same thing for Christmas. I haven't been in the hospital for Christmas yet, but I was sick the last time - on IV meds - and had just gotten out of the hospital the year before so I was still feelin like crap. I'm actually gonna be able to ENJOY the holidays this year! CRAZY -- and so awesome!! :)

So all in all a great morning. Except for the GI testing I did this morning. Ughhhhh. Terrible. First test was to make sure the muscles in my throat were acting normally and things weren't getting "caught up" and not going down properly. Which honestly I thought was kinda stupid. I mean if I was having problems swallowing I THINK I would have found that out by now. I don't think I would have put on TWENTY FIVE POUNDS in three months if I wasn't gettin things down. I would think that would be something they would do right after surgery if anything. (When you get intubated the tube they insert can make complications to your throat and vocal chords, so I guess thats the point of that one) They inserted this HUGE tube up my nose and down my throat which was AWFUL and then kept messin with it tryin to get it in just the right place. I swear that thing was in for like 20 minutes and it HURT. And since they were testing my swallowing there was NO sedation and no numbing to make it even remotely pleasant. I sat there visibly shaking, hurting, and gagging for what felt like for-freakin-ever. The other test I am STILL doin. Its just as awful. They took out the large tube and entered a much smaller one (one good thing). Its attached to a monitor that is recording the PH levels in my gut. Basically testing to make sure the meds I'm taking are controlling my acid reflux. The LAST thing you want to happen with transplanted lungs is something coming back up and get into my new lungs. It could cause lots of problems, mainly infection. I have to keep this wretched tube in my dang face until tomorrow morning. I hafta say, its very uncomfortable and is DRIVING ME BONKERS. It makes it hard to eat and every time I swallow it tugs like crazy. Every time I lay down I hafta hit this button, when I sit back up I gotta hit another button. When I start eating I gotta hit a button, when I'm done I gotta hit ANOTHER button. When I cough I gotta hit a button, if I have any reflux, another button, when I take meds, another button....its absolutely OBSURD. Im 30 seconds away from ripping this crap right outta my face. *sigh*....I just gotta make till 7am...just 7am. Pray for me people, I might go completely outta my head before then. I hafta keep tellin myself Ive been through worse. But quite honestly Id sign up for another transplant just to get this dang thing outta my nose lol.



Pretty nice huh? Needless to say, we came straight home after Mayo. And it was a drive-thru situation for dinner. And now I've posted this mess on my blog, so I guess all that was for nothin, LOL.

So that's where I'm at. Uncomfortable, irritated, and completely thrilled! Hello Dr. Jekyll/Mr. Hyde! Thanks, as always, for all the prayers and support through these last few months. Its becuase of yall that this has been such an incredible journey for me and my family. I hope by following along these last few months God's grace and power has been a big of a blessing to you as it has been to us. Prayers work people! And GOD IS GOOOOOOD! :)

Much love...xoxoxo

Erin

Things are finally startin to wind down...

So the last couple weeks have been good overall. Same ol, same ol with Mayo - solid appointments, everything still looking good. Cardiopulmonary rehab is winding down...got the word last week that I am progressing wonderfully and that as soon as I complete one more education class (Oct 24) I will have completed my CPR requirements and will be able to get the go ahead when its time for me to head home. Spoke with my transplant coordinator and she assured me that assuming everything stays as good as its been, there shouldn't be any reason to keep me here past Nov 2 (the day of my last scheduled appointment)!

You can't even begin to understand how ready I am to get back home. I am ready to get back to a normal life -- whatever that is for me! I have some plans I wanna start putting into action, but I'll leave those ideas for another day. And I know my mom is ready to get home. Being away from my Dad and all hasnt been easy but she's been awesome through this and I can't even begin to thank her enough for being here with me through all this. I'm not gonna know what to do with myself when she leaves!

The moving back to Orlando bit is gonna be a PROCESS. We are having some professionals come in a do a clean of the air ducts and vents in our house as well as a DEEP clean before I can move back in. My cleaning capabilities are somewhat limited right now, and I need a super clean environment to move back to. I'm also thinking about the possibility of having a cleaning service come in once a month to do a deep clean on a regular basis. I can do some basic cleaning, but I can't breathe in the dust and chemicals I'd encounter while trying to thoroughly clean the house, so that's gonna be something I have to figure out in the next few weeks. It'll depend on the cost, and obviously funds are limited with Chris having been out of work for almost three full months. The donations and gifts we have recieved have seriously kept our bills paid up and we are SOOO grateful to everyone who has been so generous to us during this time. You have serious kept us from being stressed to the max and that is SO important for me right now. So, THANK YOU - THANK YOU - THANK YOU!!

So anyway, I am working on getting a duct cleaning service and a housekeeping services scheduled as soon as possible. I won't be able to do the cleaning until I get the ducts/vents done so we'll most likely be in Jax for a few extra days after I am "let go." And don't even get me started with packing this place up and moving it all back!! I HATE moving -- I truly HATE it. My OCD goes into severe overdrive. Everything has to be packed in plastic containers with lids that latch. This way I can see into every box, the are easier to carry because they aren't crazy shapes and they have handles to hang on to, and when loading them into the moving van they stack nicely because they are the same shape and size and they sit on top of each other nicely. I like things neat and organized and those liquor boxes and random packing boxes just don't cut it. I also have this thing with making schedules on moving day and get VVEEERRRRRYYY flustered when things get off schedule. Its crazy I know. I was so glad I didn't hafta be there for the move DOWN. But that didn't stop me from making a schedule for Chris, Kellyn and my cousin Joel. As well as multiple lists of the items I needed, broken down into what rooms they were in and a brief description if needed. If you think thats bad that was NOTHING compared to what I was GOING to do, had I had more time. I didn't get a chance to make my itemized list with picture references and descriptions, along with going through the house and marking each item with color coded post-it notes. Whew...even typing that wears me out!

Lord, I do like a tangent don't I?!

Back to things that matter...we have had a nice last couple weeks - sorry I haven't been better are posting. Ever since my workout restrictions have been listed I've been pretty sore and tired from workin out so hard. I'm tryin not to overdo it, but I can't help it. When you haven't been able to workout in ten years, you sorta feel like you gotta make up for lost time!

Other than working out, I had some fun times with Kellyn, Mom, Chris and Mabree the other weekend. Kellyn came to Jax with my sweet neice for the first time since my surgery. It was soooo great to see them! I had missed them both, but especially my girl Mabree. She is so funny and I have so much fun playing with her. I got a chance to really play and run around with her for the FIRST time that weekend. When she was young it was no big deal that I couldn't  run around and be active with her, well, because she was immobile. But as she's gotten older, she has proven to be a girl with no STOP button. She is wide open and I love that about her, but it was getting increasingly difficult for she and I to really play much. I honestly just couldn't keep up. And the more oxygen I was needing throughout the day just made it that much harder. But the weekend she was here in Jax, I seriously had a ball! I could finally keep up with a three year old....LOL how pathetic is that?

 

We went to TJ Maxx and looked around (its Mab's favorite store...love that we have a little Maxanista - momma's teachin her well!! LOL). We also took Kell and Mabs down to my favorite farmers market/art market here in Jax - the Riverside Arts Market (or RAM, as its referred to here). Its a great market right on the river and has tons of vendors selling hundreds of different craft and art, local farmers with fresh produce, homemade jerky, local honey, handmade spice blends and lots of other specialty food items; facepainting, a gymnastics course, balloon animal guy and a crafts tent for the kiddos, live music, dancers, and DOZENS of food vendors with lots of creative and tastey dishes from latin to southern to greek and italian to stuff I don't really recognize. Its a blasty blast and Mabs had herself a pretty good time (see the cute pink tiger below!)

The next weekend my dad came down for a visit. We headed out to Jax Beach on Saturday and hit the fishing pier. The day was BEAUTIFUL and there was an amazing breeze - what more could you ask for for a day at the beach! I love that here in FL, beach days continue well into Oct/Nov! We spent about an hour just hangin on the pier watchin all the fishermen (and women) haul up quite a variety of ocean life -- including a sting ray!! I wasn't able to react quick enough to get a pick, but it wasn't too big anyway so oh well. You all know what a sting ray is - remember the Croccodile Hunter? - so just google it if you wanna see a pic. After the pier we headed down to the sand to relax under my canopy. Because of the suppressed immune system and some of the meds I am on, my risk for skin cancer has risen CONSIDERABLY, so I hafta be super careful when out in the sun. For the first time since I was a little girl I am back to wearing sunscreen. Oh well...I can breathe. :) Chris and I took our usual three mile walk (we have a route established when we head to the beach for my workouts) and by the time we got back to mom and dad the sky had gotten pretty nasty so we rushed to pack it up and head in. All in all though - a pretty fab day!

 

 

 

 

Which brings us (finally) to this past weekend. Chris and I had every intention of making Saturday a lazy day. We were well on our way when mom called (she had headed out to run some errands, leaving us in bed late into the morning), letting us know that she had just found out that there was an airshow down at Jax Beach and that we should head out there cause, well it was on the beach, free, and who doesn't enjoy a good airshow! We got ourselves up and out to the beach in time for some really good times watching military and civilian planes alike flying past us, so close to wear we sat on the beach you could almost see what color eyes the pilots had! Some of the planes put on some awesome ariel acrobatic manuevers that I never thought a plane was possible of doin. It was awesome and a fantastic way to spend an afternoon.

 

 

 

 

Well, so thats about it. You're all caught up! Tomorrow is a long day over at Mayo. I'm in for the works - blood work, xrays, pfts, bronch, biopsy - so I'll prolly be out of comission most of the day. And starving. The blood and bronch requires fasting before, and my bronch isn't till the afternoon! By the time I finally get over the sedation itll be after 6 and I'll be good and famished by then! So, as I always do, I'll ask you for your prayers for tomorrow. Prayers for good results (increased pfts, clear xrays, and no rejection or infection!!) and that I am able to refrain from eating my hand or something. Also, I don't know if I have mentioned this before, but bronchs can be dangerous. I have a GREAT team of doctors here and I trust them completely. But they are human, and mistakes happen. Any time they go in and do a biopsy, there is a possiblity of a number of things going wrong. One thing is that when they cut the tissue for the biopsy they end up tearing a hole in the lung. Needless to say, thats not the GREATEST thing to happen to a recent lung transplant recipient. I really haven't thought much about the "risks" during all this, but this past week I was talking to the wife of another lung tx recipient who was actually just a few doors down from me while I was still in the hospital right after my surgery. She had told me that they had to go back to the hospital the week before because they punctured a hole in the guy's lung during his bronch!! UGH...I would be livid (assuming that the worst that happens). So please pray I leave tomorrow without a hole in my lungs! :)

Many thanks, as usual, goes out to all those who attended the Toss for Taylor cornhole tournament, the GGI Annual Golf Tournament, the Premier Jewelry party, and the Thirty One party, and a special thanks to those in charge of putting on each. The generosity of all of you continues to be a HUGE blessing to us. We could not be where we are with this recovery if it weren't for each one of you. We are continuously overwhelmed by all the love we are CONSTANTLY receiving. You all are in our prayers everyday. We hope you will be blessed by something or someone as much or more as we have been.

I'd also like to ask for your prayers for a few others who need them desperatley right now:

Leon Peel
Jane Lisk
and one unnamed request

Each of these people are fighting cancers of different kinds, at different stages. Please lift them all up in your prayers and the battle this TERRIBLE disease. Pray for healing and strength for them and their families. Please reach out to these families and express your love and support to them, as you have done to me and my family. The encouragement from friends, family - even strangers - means so much when battling something a disease that is so devasting in every way. Its truly what motivates you to fight.

Much love...xoxo

Erin