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

SIX MONTHS....

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

Unlikely.

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

SIX MONTHS POST TRANSPLANT.

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

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

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

But I digress.

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

Relief...sweet relief.

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

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

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

I am a basket case, I swear.

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

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

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

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

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


 

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

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

Life is dull...and Im lovin it.

I haven't had days like these in a long time.

Days where my husband and I wake up and have the opportunity to spend the entire day together. Where we can take our time gettin goin in the morning, then head out for breakfast together (our recent breakfast place of choice -- Waffle House). Days where I feel good enough to be up for anything! Days where we head to the beach, a mere fifteen minutes from our apartment, to get in my workout for the day.

You heard me. I'm working out. And I'm doin it on the beach.

To most of you this may not seem something worth making a big deal over. Definitely not something worth dedicating a blog post to. But for me? This is a huge deal.

Pathetic, isn't it?

My life pre-transplant was undoubtably pathetic. As I have mentioned before, getting up to walk to the bathroom was a workout and cause for a ten minute recovery session which consisted of a breathing treatment and suckin on oxygen, occasionally followed up with a thirty minute nap. I am not kidding. Needless to say, getting out and spending the day with Chris wasnt really in the cards.

Our life had been reduced to him working 10-12 hour days, while I laid around either in bed or on the couch strapped to O2, doing 4-6 breathing treatments throughout the day. On the random occasion I might scrape up enough energy to drive the 4 blocks to the grocery store, at which time I was reduced to scootin around on the motorized shopping carts (which, if Im honest WAS sorta fantastic...I can't help it. Feeling good or feeling bad - Im seriously the laziest person on Earth and up until I was forced to, it was always a dream of mine to use those motorized shopping carts at the store....my day had finally come. Yeah...pathetic remember?)

When Chris would get home I would be too exhausted to do much of anything. Which really just upped the pathetic quotient since I hadn't actually DONE any thing all dang day. How I was even remotely tired is beyond me, but I was exhausted 90% of the time, and in tremendous amounts of pain as well. Occasionally we would go out to dinner, but not often. Usually it would just be he and I laying around the living room watching tv, night after night. I was miserable so I can't even say we enjoyed each others company. We were just existing...it was pathetic.

But now - talk about a 180! Im fighting pain and discomfort while my body heals (and Im getting pretty impatient with it to be honest. How long does this crap really need to finish healing anyway, geez!). This past weekend I closed my foot in a car door of all things, so Im walking with a limp which is making other parts of my foot hurt. My sleeping patterns are all over the place thanks to the prednisone Im on for immune suppression/antirejection. And if youve had a chance to catch my latest Facebook posts, youve had the opportunity to see the face explosion I am currently fighting. And by face explosion, I mean the fattness of my face -- thanks again prednisone!

But still, a180! Did you know that its been over ten years since) I was able to walk on the beach? Oh Ive been to the beach plenty of times since then, but actually getting out and WALKING on it? No way. I could (barely) get myself onto the beach, just enough to get to the spot for us to set up, then I would plant myself in a chair under and umbrella for the rest of the time. Only time I even move would be to go to the ocean to cool off. But now, I can walk. Chris and I are enjoying our opportunity to just BE together, and we have taken that opportunity to the beach.

Now dont misunderstand - this isnt a relaxing, afternoon under the sun! Because of the meds I am on, I have to limit my exposure to the sun and canNOT get sunburned. Between the sensitivity it causes to the sun, which could mean I would burn much easier, the immunosuppression increases my chance of developing skin cancer SIGNIFICANTLY. So for now, while my med doss are so high, I hafta be super careful. Sunscreen, hat, fully clothed, etc. Usually we try to go earlier in the AM or later in the afternoon when the sun isnt as strong, or we choose a cloudy or rainy day. But being able to get outside, and WALK and not get tired AT ALL....its incredible. Every time I go out there I just keep repeating "I cant believe I can do this!" Im sure Chris is wishing I could think of something better to talk about, but for now I just cant. Its completely unbelievable to me. And a welcome change to the oh-so-boring walks I usually do on the treadmill.

We have a route we do every time - park at 16th street, then walk the beach all the way to the pier and back. Total distance - 3 miles. Time we take to walk it - 1hour. So I am officially walking a full HOUR at once, never getting winded or tired or anything! And THREE MILES! Last time I traveled on foot 3 miles was during cross country in high school. Craziness...

So between my working out and my weekly appointments at Mayo, I am really doing nothing else other than healing. So, like the title of this post says, life is pretty dull. Well, I guess to you all its dull. And I guess its dull to me in terms of the fact that things are actually going really well, and my life isn't in a complete state of disfunction and pain and misery. Just call me McDonalds, cause Im lovin it! ;)

My last visit to Mayo for PFTs showed they were UP again (whoo hoo!) to a whopping 86% of normal. EIGHTY SIX PERCENT PEOPLE. Less than two months ago I was circling the drain at 21%. That is a 65% increase! And I can feel it all the way to my toes when I breathe. Its incredible. I cant wait for next week for my next PFT. If it is any higher Im gonna freak out. I just can't imagine it being any better, but they keep telling me it will still go up, prolly for another few weeks and then it will level out. If I get to 100%...Im not sure what Im gonna do, but its gonna be drastic and I'll prolly get it on video. Oh and Im gaining weight finally! Today's weight was 135.5, the highest Ive been in years. Havent hit that high since prolly two or three years ago and then it was only 132, and very short lived, as I got sick and dropped 20 pounds almost immediately. Im ten pounds away from high school weight of 145, and Im hoping to put that on muscle-wise...my face is getting PRETTY round and Im sure most of it is the prednisone Im on, but apparently I ate 6000 calories of food yesterday (appetite stimulation is another side effect of the prednisone - finally a side effect I actually dont mind!) soooo the fat face could just be that - FAT. Who knew I was capable of fat? Not me! So stay tuned...fat girl walkin! (and hopefully soon, runnin!)

Here are a few pics for those not following me on FB...you can see the fat-face transformation pretty distinctly...its gettin quite ridiculous really.


Beach day pre-trans with Chris


REALLY enjoyin myself during the hospital stay the week prior to my transplant...had no idea my life would change so dramatically just a few days later!


A few days after being discharged from the hospital post-transplant...you can see the full face beginning to emerge...


Chris and I on the beach before one of my work-out walks...yup its fat face city over here...honestly I look like a chipmunk.


And finally, the latest and greatest. My cheeks have officially surpassed the boundaries of the rest of my head. They have a life of their own. Ridiculous is the only word to describe these things. They could blow at any second.

As my face and body continue to expand and my lung function continues to increase, I'll keep you updated...I'll have to cause if I dont you may not recognize me when I finally see you in person again. Lol!


Much love...
Erin

Well, where to start...

Ok, I admit. I've been slightly MIA from blog-land. Sorry to those who care!

The past week and a half or so has been a pretty good one overall. Lots of tests, results, etc. While I'm sure you'd rather hear more interesting news, but in the interest of a complete and thorough report, I'll start with the boring stuff.

Last weeks tests and results:

Went in last Tuesday for the last WEEKLY blood draw, chest xray, PFT and bronch. Ill still be doing the blood work and xray each week, but the PFTs and bronch will be cut back to once every two-three weeks, which I guess is a good sign. Of course they can (and will) schedule whatever they think is necessary based on how Im feeling, xrays, etc. But for now, Im gettin a little break. Won't be havin another PFT/bronch day until next week...nice :)

Anyway. As usual, they were pleased with the initial results they had - chest xray looked the best yet, bronch was great, altho they did clear away a few mucus plugs from my lower lobes. That is normal, and one of the reasons for the bronchs. Once they removed my old lungs and put in the new ones, for some reason the "cough reflex" was lost. Happens to all lung transplants. So right now its very difficult for me to cough. You would think that someone whose been hackin herself to death for 28 years would know how to cough, even with new lungs...but apparently no. My cough now is this forced, barking thing and its very strange. I have to allow myself time to heal more and teach myself how to cough again...how bizarre. A CF patient who doesn't know how to cough. Never thought Id see the day....

So in order to keep me clear, since I cant do it myself, they cleaned out a little crap (thankfully not much and even better -- no INFECTION STILL!!!), and took the usual biopsies to check for rejection.

Cut to the next day - back in for the results. Dr Alvarez (my favorite - he's such a cute little man and super funny...even though I don't think he means to be...but he sure does amuse me), let me know he was thrilled with the Xray, but apparently my biopsy is showing A2 mild rejection again. He also said he was very confused as to why its showing that. I was curious until he told me that nothing else looks like rejection - my blood results looked great, stats are great, and xray is perfect. And the fact that my PFTs were up 14% from the week before (77% baby! Haven't had those numbers since HIGH SCHOOL) that it didn't make sense. He said they've only seen that a few times, so they weren't really sure what to make of it. So he said the doctors were gonna look at the pathology slides at their weekly meeting to double check. He told me that my PFT numbers were some of the BEST they have ever seen at this point in recovery!! Which is awesome, but also terrifies me to death. (The whole bigger they are harder they fall mentality?) Anywho...so basically he modified one of my meds, but thats really it. He said that the biopsies are just a snap shot of what the tissue is like at one moment. It could be a matter of some white blood cells that get "lost" for a moment and that we just happened to look at that very moment. (He actually went into this long explanation about a BMW in a bad neighborhood, and if u were to see it you might think it was a good neighborhood cause you saw the BMW, but really its the only one in the neighborhood cause the driver got lost for for a minute...yeah I know. Like I said...goofy little man, but it made sense, I guess lol) And since everything else looks SO good, he's happy with where I am, but to keep them (as always) updates on ANY changes. So all in all, I guess a pretty good report. If they're happy, Im (for the most part) happy.

So now to the more exciting stuff -- last Friday, August 31st, marked ONE MONTH POST TRANSPLANT!! How crazy is that?? Chris and I enjoyed our first weekend alone since pre-transplant when my mom headed over to Tampa to be with my sister Kellyn during her back surgery. By the way, thanks for all the love and prayers for her last week! Shes still pretty sore, but doing good. Hopefully this surgery will relieve a of her pain from a car accident she was in about two years ago. Shes been fightin a LOT of back and neck pain for a while now, and Im just happy she's finally getting some relief. She still has a LOT of neck pain, but that will require surgery on more disks ...so please keep her in your prayers for recovery, pain relief, and whenever she has her other surgery, that it goes smoothly. I know she'll be glad when all this is over!

Chris and I spent Friday workin out/walkin, and had a nice afternoon poolside ( me not in the water and under a canopy since I can't really be in the sun now - :/ - but still nice and relaxing). It was pretty nice and NORMAL! Saturday was restin and football alllll day, a little more poolside, then we grilled out with my cousin. I almost forgot I was in recovery! Of course until Sunday, Monday and yesterday when my muscles have been aching non stop and I have been super tired! I keep forgetting that my body is still healing from MAJOR surgery and I think I have a tendency to overdo it. Its hard not to when, even though you hurt still in your chest and back, you feel better than you have in over a DECADE. Oh well...still gonna keep pushin myself. No pain no gain and whatnot...

Dad came down Sunday and left super early this morning ( :( ). We had a good time just hanging around for the most part, and he and mom had a chance to just have an afternoon just the two of them which I know they enjoyed. Its been over a month since they have been able to hang out together without a group! I think mom is plannin on heading back to Albemarle just for the weekend this weekend which I am happy about. I know she needs a break and to just be home for a while. And she misses those sweet grandbabies of her's in Albemarle! She got to see Mabree last weekend, so Im sure her Mylee/Shelby withdraws are getting pretty bad!

Well that's really about it for now. Told you - nothing super exciting this week, which honestly Im kinda happy about. Its nice for things to be low-key after all the drama and chaos of the past month! Im really hoping this lasts!

Oh and one more thing! I wanted to say a HUGE thank you to everyone who has sent cards, donations, giftcards, and gifts to us the last month! You have no idea how grateful we are to have such awesome people in our lives. The financial contributions have helped SO MUCH. Money is still super tight for us, but the help so many have given has kept our stress levels almost tolerable! LOL! I know there are a few fundraisers in the works for us and for those of you organizing and those participating -- THANK YOU, THANK YOU, THANK YOU! It means so much to us. I just hope that we will be able to return the favor sooner rather than later. We have some of the most amazing people in our lives and we are beyond blessed.



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