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

A little hiccup seven months in...

Ok Im gonna hafta get a little better at this.

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

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

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

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

Hope everyone has a great weekend :)

Much love...
Erin

SIX MONTHS....

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

Unlikely.

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

SIX MONTHS POST TRANSPLANT.

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

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

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

But I digress.

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

Relief...sweet relief.

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

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

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

I am a basket case, I swear.

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

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

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

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

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