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

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

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

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

First minor setback...if you can really call it that

So yesterday was sort of an annoying day.

Most of you know that I had some tests and things done Monday. Blood work, chest xray, bronchoscopy and my first pulmonary function test post transplant. During that visit I got great feedback on my initial results: bronchoscopy looked clear and lungs were looking "better than they should be" at this point, O2 stats were 99% on room air, blood pressure was spot on and chest xrays looked "great." And while I felt that a 54% FEV1 score was LOW (well it was high compared to my 22% pre-transplant), they assured me that it was right where it needed to be for this stage in my recovery and that it will only be going up. I had them assure me of this about 10 times before I left the room, but they were all very positive and excited that my levels where were they were less than 2 full weeks post transplant.

All I heard =  that there was room to improve.

Honestly I can't imagine it feeling any better though. At only 54% FEV1 I feel like I'm at 100%. I think any more lung capacity and my entire body will just explode!


So Tuesday was supposed to be a slow day. Just a routine visit to go over my blood work and biopsy results from the bronch. And well I guess it was exactly that. Just not the results I was exactly hoping for.

Before I go on, you people hafta understand something about me:

I am completely mental. Its true...and for all of you thinkin I'm so strong and such an inspiration - well, lets just say I'll be prayin for you.

I am your typical overly competitive, ridiculous high expectations type who suffers the likings of a complete mental breakdown if things aren't progressing exactly the way I think they should or want them to. Some might call it stubborn, some call it determined...I call it mental.

I call it mental cause I allow it to utterly consume me sometimes. I am a complete control freak and knowing that you can do exactly what you are asked to do, maybe even more than asked to do, and this whole thing still might just go to crap overnight, causes me a level of anxiety few ever achieve in
life.

How I tricked that pysch guy into passin me for this surgery was a sure act of God. Now, I'm not one to question the will of God too much...I've seen too many times how things so inexplicable have turned into something so beautiful. Too many times. Now, just cause I don't question it, doesn't mean I understand it.

Now being a complete basket case when it comes to controlling my life and being someone who doesn't question the will of God has not, is not, and will never be an easy thing to do. I am in a constant battle of wills with these to aspects of my personality. If you've ever seen me in action you'd recognize a very distinguishable "Dr Jeykll/Mr Hyde" scenario happening. However, I am currently trying to master the controlling part of my personality and let God take this whole thing over completely. I've seen how He works and how I work. And as much as it pains me to admit...I suck. And after all I've been through, I can't afford to suck.

That all being said, back to yesterday.

One good thing (as uncomfortable as it was) that I wasn't anticipating to happen for another week happened. They went ahead and removed half the staples from my incisions and the sutures in my sides from the chest tubes. Not a very pleasant experience to say the least, but not the worst since all this started two weeks ago. And while today has been uncomfortable in those areas, I'm hoping that tomorrow I will be feelin the relief that comes with havin some of those out. So one good thing. But then there's always the bad thing right? (Well maybe not always, but generally enough that I feel comfortable following the "expect the worst, hope for the best" mentality when it regards my attitude) At the appointment with my transplant pulmonologist and coordinator, they informed me that based on the lung biopsy results from the bronch the day before, while we weren't culturing any infection (GREAT NEWS), they did show some signs of mild rejection.

They were quick to assure me that MOST transplant patients experience mild rejection within the first 30 days of transplant as your body is trying to reconcile what exactly is going on with this foreign THING they've just put inside you. Thus the reason for the super high doses of immunosuppressant/antirejection drugs they're pumping through me daily, and the reason they require patients to remain close to Mayo after transplant for atleast 3 months. They are able to constantly monitor my status and adjust my medications as immediately as possible to ward of infection and rejection that can be deadly. They assured me that mild rejection was something they don't even like to tell their patients about because in honesty, your body has been trying to reject those organs since they went in, and will always be trying to. They weren't made for my body. They're basically on loan. My job (and my doctor's job) is to make their stay as pleasant as possible so they'll want to stay as long as possible.

Well knowing all this is great in all, but remember what I said about being mental. Yup, knowing all that means little when you're me.

I, of course, fight it as much as I can, but its not long before I am up, pacing through my exam room muttering things to myself like, "ok lungs, don't screw me on this," while my pulmonologists decides what adjustments need to be made with my meds. Basically doubling my Cellcept and bumping my Prednisone up 10mg a day. Great. Cause my brain wasn't mush enough already. Bring on more Prednisone! He also prescribed a one time bolus dose of Solumedrol that I did by IV yesterday at Mayo.

So hopefully that will bring these bad boys back to happy, and quickly. One of the lucky things about catching this stuff early and making the necessary changes so quickly means I haven't felt any different. Again, keeping these lungs happy is my only goal until they decide they like where they are and will quit tryin to bug out on me on their own. I realize they could have gone into a more hospitible environment than I can generally provide, but I hope they just give me the chance to try!

Remember, lungs, I didn't pick you for me. God, did. Go with that.

So that's that for now. No appts today or tomorrow, but back to Mayo Friday for another chest xray. Today will, hopefully, be that slow day I was hopin for yesterday. May run a few errands with mom and Chris, but mostly just layin back and restin today. Like I said, I'm pretty uncomfortable today, so lots of activity prolly isn't happening. My cousin Joel and his roommate Mike are comin over tonight for dinner, so that'll give Chris an opportunity to grill, which he never passes up, and allow us to feed two poor college boys who's kitchen cabinets would put a homeless man to shame. I'll never understand Ramen Noodles...and one's willingness to buy them in bulk. Ugh.

So I'll do now what I do best - beg for your prayers! I've seen the power of prayer you people can generate, so I'll shamefully ask it of you again. Rejection and infection. I'd like none of either please. Thank you all again for your constant support...I'll never stop saying thank you for that.

Much love...



Erin

Today has been quite a day...

Last night around midnight I began coughin up a lot of blood. I do this from time to time, sometimes its next to nothing, other times its like something from a horror film. Well last night was somewhere in between, but since my lung function is down in the 20% range, we decided that it would be a good idea to head over to Winter Park Memorial Hospital where my CF specialist is and get on some IV meds and some pain meds. For those of you who have never coughed up blood, it is a terrible drowning feeling coupled with a terrible ripping pain in your chest everytime you cough...unpleasant doesn't even begin to describe it.

After close to NINE - yes you read that right - NINE HOURS in the ER I finally made it up to my room. Soon after the usual visits from my doctors to discuss the plan of action, my Aunt Patti shows up to check on me. After hanging out for about an hour, she gets up to leave. As she does my phone starts ringing. As I was saying goodbye, I decided that whoever it was could wait and I would call them right back. Once she left I checked my voicemail - a call from Mayo Clinic.

Assuming it had something to do with scheduling more appointments, I was in no hurry to listen to the voicemail. I decided to go a head and listen anyway just in case and was stunned by what I heard.

The voicemail was from my lung transplant coordinator, Kelly Norman. She was calling to inform me that they have recieved all my test results back from my recent liver evaluations. She went on to say that based on those results, they have determined that I am NOT A CANDIDATE FOR A LIVER TRANSPLANT!! Did you hear me?? NOT A CANDIDATE FOR LIVER TRANSPLANT!!! Finally, the first piece of good news in the last two weeks! :)

Kelly also mentioned that since I have completed the lung transplant eval and that I was determined to be a candidate for lung transplant, she will be completing the paperwork required today and that she will be giving me a call mid-morning tomorrow to let me know my allocation score and where I am on the list for my blood type.

Wow. I am in shock right now. The last few weeks have been so tiring and frustrating not knowing what is going on and when it will be happeneing. Now, all of the sudden I am less that 24 hours away from possibly being officially listed for new lungs. And who knows, I might be towards to top of the list! This could all happen in a matter of weeks! I means it could just as easily be two years, but the fact remains - I finally have a direction! Of course this means MORE waiting, but its a different kind of feeling with this waiting. This waiting feels like the kind of waiting that can save your life...not the kind of waiting you do to pass the time before you hear the next hideous procedure you hafta do before you can ever get any real answers.

I feel like such a weight has been lifted from my shoulders. Dont get me wrong. I was ready and willing to do whatever I needed to. But knowing that atleast ONE part of my body, even though it is scarred and not 100% on its game, is still doing what it needs to be well enough that I get to keep it! This also means a less invasive surgery, and much less impossing scar (not that im not used to THAT already)...but its just really nice to get some good news. Especially as I sit here alone in my hospital room hooked up to oxygen and IV meds, downing cup fulls of pills, and watchin bad tv reruns.


Thanks for all the thoughts, love, and prayers you all have sent up for me, my family, and for my little 'ol liver....we thank you! Keep it up - it works!! Thank you Lord!

Much much love...
Erin