recommitting myself to this writing thing

Well, I gave it the ol college try. And just like my real-life college experience, I started out really into it and did some killer work....and then crashed and burned.

Sorry Inhale-Exhale-Repeat. You deserve better. And better you shall receive!

So I'm back ladies and gents. And with my apologies.

Of course you can imagine the topics I intend to cover are gonna be pretty in line with what they have been - CF, transplant, etc - but be prepared to see the "etc" portion grow significantly. Since life has been pretty dull (THANKFULLY) on the transplant experience front as of late, I have been able to dive into things that I have not been able to in the past and I am loving it.

And I am not ashamed to admit that I need your help, support and, well, your money. I am shameless - get over it. You knew that about me when you started following this mess. I even put a disclaimer in the "About Me" section. If you didn't read that well, that's your bad.

Gotta love how I ask (beg) for your help, all the while criticizing (insulting) and scolding you right? I am a woman of many talents, what can I say. I think its all part of the charm. And I know that's why you love me. Or at least tolerate me and talk about me behind my back like normal people.

And now dear readers, lets address what I'm doing to make a difference and how you can (should) too!

Aside from gracing the blog-o-sphere with posts like these gems, I have committed myself to doing more work with a few groups (some still in the works, so we'll stick to the biggies for now). I'll focus on each one individually so that I can really commit to telling you what you need to know. See? I'm already doing better with this who recommitment commitment!

Number 1 - and the one you are gonna wanna pay the closest attention to - is the More Than Just Me Foundation. My friend Tommy Danger - no that's not his real name, but yes he will answer to it - made headlines last year when he completed a run of 3200 miles from Seattle to Daytona Beach to raise awareness for CF. Thousands follow him on all his various social media outlets. Building on the momentum of that run (labeled More Than Just Miles) he founded the More Than Just Me Foundation that has just spear headed its next campaign for CF called More Than Just Mountains. This crazy man and three of his crazy buddies head out to Mt Kilimanjaro in Africa next month to summit for CF! Through this #MTJMtns campaign, we hope to raise ONE MILLION DOLLARS for CF. These guys will be attempting to summit the seven highest peaks around the globe over the next few years. Through sponsorships for the climbs, we hope that ONE MILLION can be raised (through individual donations and commitments from companies) COMPLETELY FOR CF. We aren't just raising money so these guys can have a good time - trust me on that one.

THE CLIMBERS:

Clockwise From Top Left: Tommy Danger, Mark Noland, John Burkett & John Renken

 

 

 

THIS IS WHERE YOU COME IN. Got a friend at an airline? Work for a company that has a giving heart and would love to see their name and logo in news outlets around the globe? Wanna get your name on the flags that will be left at the highest summits in the world? GET INVOLVED and help us out. If you have connections of any kind, we'd love to see what kind of relationship we can build. These are the things we can use your help on, should you have the means:

GEAR - climbing gear for mountains like these don't just consist of a hoodie and an ENO hammock. It takes a lot of really high-tech, expensive gear to protect these guys from the incredible high altitudes and extreme climates. If you have connections with a company that can help outfit these guys with the proper gear please get in touch with me. Even local outfitting stores who have the ability to donate some goods at wholesale costs would go a long way. No help on this front, could be the difference between life and death for these guys.

AIRFARE - believe it or not, flying to Africa is not cheap. In fact airfare for these trips can costs thousands. I know, surprised me too. I mean all I could think of were these tiny planes half duct taped together landing in fields somewhere, and honestly how expensive can that truly be? But it is cause its not flight people frequent - its not like they have tons of airports and tons of flights to get you there. If you have frequent flier miles you can transfer to Tommy, a buddy who might be a flight attendant or captain who can hook it up with a few free or discounted tickets, or you yourself just wanna pay the airfare for one of these guys - give me a shout. We can't do any of this if we can't get there.

MONEY - the climbs themselves are pretty costly, and there are always unforeseen costs - travel, food, lodging - before and after the climb. We want the safest possible round trip for these guys as we can, so being able to make sure their bellies are full and they are able to stay in safe and clean lodging is a must. Please know that when you donate $$ to MTJMtns you are giving to people with a passion for what they are doing and commitment to cystic fibrosis that I have never seen. You can be assured that they will be thoughtful and respectful stewards of the money donated and will use it only if absolutely necessary. You won't see them dining at 5 star restraunts or staying at 5 diamond resorts. Hell, getting Tommy to sleep OUTSIDE of his van usually takes an act of Congress (which by the looks of how things are shaping up lately, is gonna be an even loftier task). Trust me when I tell you if Tommy could drive to Kilimanjaro and sleep in his van, he likely would.

LIKE/SHARE/RT/REVINE/ETC - get connected with MTJMe on Facebook, Twitter, Vine, Instagram and whatever else Tommy has gotten them on. Share the updates and news with your friends and encourage them to step up and support them. Post about them to your followers and ask them to do the same. More Than Just Miles started as a grassroots campaign and still uses that following to reach most of the supporters we have. We love likes and shares and such so hit em up and help em out!


I am excited to work with these guys, and you'll likely see me doing all of the above and reaching out and begging for support all over the world in the near future (if u haven't already noticed that). I am already so proud of what they have accomplished and am even prouder to be able to call someone like Tommy a friend. I have some great friends, family and supporters of my own and I hope you guys will join me in what I have deemed the "second chapter" if you will, of this transplant journey. We can refer to it as "The Aftermath" - in which Erin has recovered and been set loose on the world. You didn't know it, but this is what you got yourselves into last year when you came on this journey with me. I hope you stick around for this new leg and continue to support me as you have. I love you all and covet your support. It has made the biggest difference in my life, and now I am trying to focus it towards making a difference for others. A little pay-it-forward-action if you will.

So please, check this group out. Links are below. And enjoy this little video one of Tommy's buddies  helped make for us to help spread the word.

BIG LOVE - E

www.mtjm.org
www.facebook.com/mtjme
Twitter: @morthanjstmiles
YouTube: More Than Just Miles
Instagram: MTJME

CHECK OUT THIS AWESOME VIDEO!!
 

Turns out blood transfusions are bad, ok

So. Here we are.

I am well into my SECOND year post transplant and things remain pretty fantastic. Lung function remains muy bueno and on xray these bad boys are kickin ass and takin names. Can't really complain about much except one thing - being a woman BLOWS. Really, guys you have it WAY to easy.

Had a few issues this summer with "female issues" (yeah - it is what you are thinkin. I know, I'm sorry, but remember - this blog is about the good, the bad, the ugly - and the REALLY ugly of the shit storm that seems to continue to be my health lol). In about a month's time I needed around SEVEN (yeah 7) pints of blood transfused. I lost THAT MUCH BLOOD. How stupid. And dangerous, especially for someone post transplant. Why, you ask?

Good question.

When you have a transplant you're put on immunosuppressant's the keep your immune system from trying to reject your new organs. Your body sees the organ as a "foreign body" and sends those bitchy white cells to your shiny new organ, thinking its a virus, or bacteria or alien pod baby. It tries to rid itself of the invader, which is what throws you into rejection.

Not good.

So yay for immune suppressant meds that keep me unable to fight any sort of infection on my own but keeps these lovely lungs happy in their new home! Take that white blood cells.

So - blood transfusions dangerous for post tx patients you say? Oh yes. Quite.

When you introduce anything that is not YOURS into your body your body doesn't appreciate the invasion. Like with organs, the potential for your body to see all this new blood as an intruder is quite high. So if I'm not careful, not only can I potentially contract something from this donated blood, but it could also send my immune system into overdrive trying to cleanse my body of the foreign substance. Also, super angry white blood cells from the DONATED blood can actually see ME as a foreign body (crazy right?) and start attacking ME!

The result? A little thing called TA-GvHD or TRANSFUSION ASSOCIATED GRAFT VERSE HOST DISEASE

What a mouthful. A deadly mouthful.

TA-GvHD is a rare but very serious condition caused by those angry white cells in the donated blood getting all crazy and attacking ME. Its a huge concern for those of us who are immune suppressed. Turns out that if you actually get TA-GvHD  you're likely not to be hangin around that long - the mortality rate of those who get it is around 90%.

YIKES.

So needless to say that a blood transfusion isn't the FIRST thing I want to have at any time. Symptoms of TA-GvHD usually take about 10-14 days to appear and as I am about 3 weeks past my most recent infusion, I think I am in the clear. Hasn't been the most settling three weeks I can assure you.

Luckily one thing that can help with counteracting the possibility of this happening when I need a blood transfusion - for whatever reason that may be - is by using IRRADIATED blood products. Its blood products that have undergone gamma-irradiation which helps prevent the donor lymphocytes (white blood cells) from proliferating against the host (ME) tissue. So that's something I must be very vigilant about going forward. Won't make it impossible to get TA-GvHD, but it can reduce the chances.

I swear. Some days I think I need to have all of my medical "ALERTS" just tattooed on my body. How I am ever gonna remember it all. And what happens if I CANT tell people the deal? Geez...stressful. Lookin like a medic-alert tshirt is in order for me lol...bracelets aren't gonna cut it.

At any rate, seems I dodged another bullet on that one. Took four days in the hospital though. Course that was after three days in for the first 2 bags a few weeks prior. When I went in the second time my hemoglobin level was a pathetic 4.8. Apparently a 10 is considered LOOOOW. So needless to say the nurses were shocked I was even conscious, much less coherent (which I was, but just barely). Somehow I had been able to talk myself OUT of driving myself to the hospital that day and waited for Chris to drive me after he got home from work (I can only imagine how that drive would have turned out).

Anyway - somehow these kinds of things (people being shocked by something about me medically - good or bad) usually doesn't phase me. I'm pretty used to it after the years. So when one nurse made the comment "I've never seen someone have such a low hemoglobin level and be awake and talking," I didn't really say much. But when she said "I've only ever seen it close to that one time and he was at two-something," I responded "Oh yeah, what happened?"

The words "He died." as her response didn't exactly make me feel great though.

Bless it.

So four days and 5 bags of blood later I was up to 8-point-something. So they let me go home. Still beneath the "Low" status but I mean geez. They had basically replaced almost all of my blood at that point.

And it only went that high AFTER an ABLATION - ugh I know. Sucks to be me sometimes.

(For those unfamiliar with what an ablation is, I'm going to trust that you can Google-Magic that later so I don't hafta get too graphic)

Of course this was after 4 bags had done little but knock my hemoglobin levels up about a point. At that point they decided they'd hafta stop the bleeding before any of this blood madness would actually make a difference...we were just kind of treadin water there for a while.

So now that that is all behind me and I'm feeling better I get to make an appointment for a partial hysterectomy. GREAT NEWS. Apparently, ablations may/may not last forever, and I can't keep risking the blood transfusion situation. I can't be on any type of birth control either which would likely help with the poly-cystic ovarian syndrome, the uterine polyps and the excessive bleeding but they have a tendency to produce blood clots in the lungs which would kinda be bad. And IUDs are out because of the POTENTIAL for infection.

Which leaves me with a partial hysterectomy at the ripe ol age of 29. Loverly.

But hey, whatever it takes to keep these lovely air-bags happy -- I'm in :)

So that's about it on the health front for now. Thanks again to all who follow along with me, even as these posts have gotten less and less frequent. Not something I am complaining about though.

You'll prolly hear more soon regarding the hysterectomy thing. Promise I'll attempt to keep that one from being to wretched.

Take care folks :)

BIG LOVE...E

One Year Later

Well, today is the day.

One year - how INSANE IS THAT?

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

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

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

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

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

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

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

BOOM BABY. I freakin love this mess.

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

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

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

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

BIG LOVE XOXO

E

Yup, I'm a slacker

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


FAR AWAY FROM HERE.


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


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


But I guess in my case it SHOULD.


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


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


And I plan on doing just that.


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


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


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


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


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


So, on to June.


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


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


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


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


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


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


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


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

Jillian and I before I embarrassed my self.


*SIGH*


Anyway.


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

 

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

Unfortunate Karaoke evening 1

Ahhh..beach time

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

.do YOU know where it is?

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

 

Poolside refreshments

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

CORN HOLE

MASTERS OF THE BAGS

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

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

a good vacation to me.

Ummmm....

DAYTONA BEACH BABY

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

(check out her blog www.howdairyyou.com )

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

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


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


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



Hope everyone is having a great summer! XO

5k Speed, almost

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

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

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


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


Official run tshirt!


Runnin the track during the last .1 of the race

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

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

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



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

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

Much love...
Erin

A little hiccup seven months in...

Ok Im gonna hafta get a little better at this.

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

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

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

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

Hope everyone has a great weekend :)

Much love...
Erin

SIX MONTHS....

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

Unlikely.

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

SIX MONTHS POST TRANSPLANT.

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

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

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

But I digress.

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

Relief...sweet relief.

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

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

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

I am a basket case, I swear.

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

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

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

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

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


 

Hello 2013

Well, its official. 2013 is well on its way, and so far - I'm pretty stoked those Mayans didn't know what they were talking about. Overrated stargazers...




Anyway, I digress.

Lets start by acknowledging that 12/31/12 was officially FIVE MONTHS POST TRANSPLANT. Five months people. Every month that goes by I still find myself amazed this has happened - and even more that the transplant has come and gone and I am now moving on in my life, healthy and breathing easy! Incredible. And made the need for celebration even more important this year!

NYE was a great, but honestly pretty low key. We started the night eating at the super fancy and romantic Waffle House for dinner - and were able to acquire our hats for the evening! 4 Eggs and triple hashbrowns later (my order, not both of ours...yeah I know), we were ready for the night!













Before joining friends to ring in
2013, we stopped by one of the many fireworks tents that always pop up this time of year and around July 4th. We loaded up with the "Excalibur" which was the baddest of all the LEGIT fireworks they had. Seriously, that's just another reason to love FL - no crossing state lines to get fireworks that amount to little more than noisy, ground spinning sparklers and bottle rockets. And no shooting them off as quickly as possible before sprinting back inside or diving behind bushes as to dodge the po po, feeling more like a crook than someone just excited about another year beginning!






At any rate, we decided to go for the baddest firework package cause we wanted a serious celebration after all we've been through this year. I could not WAIT to let these bad boys fly. Finally we made it over to our friends, Tony and Rosie's, for a little midnight firework extravaganza! Lemme tell you - Excalibur did not disappoint. We drew neighbors out of their homes and away from their sad little bottle rockets and other silly "fireworks". As our fireworks were clearly the most impressive, I was pretty excited to show off our selection. Seriously folks - best home fireworks display ever.




















The next day - 1/1/13 - was filled with cleaning and takin down Christmas decorations. Getting 2013 off on the right foot so to speak! That afternoon we headed back to Tonys to help cheer on his beloved Wisconsin in the Rose Bowl. :( Sorry Tony.





Afterwards came our 2nd annual New Years dinner - the Turkish Taylor New Years dinner to be specific. This arose out of Chris' insistence that we participate in the superstition in which we eat black eyes peas and cabbage on New Years to ensure "health and wealth" in the coming year, and my refusal to eat either as the mere thought of them sends an immediate gagging reflex through me. In order to satisfy both our desires, I went in search of alternatives that utilized both ingredients but in an unusual way. Thus the Turkish Taylor New Years dinner was born. I created a Turkish black eyed pea salad, pickled red onions and pickled red cabbage served with jasmine rice and a Turkish spice blended chicken breast. Everything is sooo good, albeit pretty time consuming. But hey, Chris got what he wanted and I learned a new method of cooking. Win - Win. And since last year was the first time we did this and well, health wise and I am doin pretty fantastic at the moment .... Well needless to say I was much more willing to embrace this as a new tradition for us this year! Double Win.





So right now I am super excited for what 2013 will bring to our lives. Lots of "life decisions" being discussed and thought about and prayed bout. So please if you would, aside from my usual request for prayers against rejection and infection, please pray for "closed doors" for us. Yup, you heard that right. Closed doors. In other words, that God will direct our decisions by putting up road blocks at decisions that aren't keeping with His plan for us. It's always hard to pray for that, but that's what I ask of you.

Chris and I want to again thank you all for everything this year. Your love and support has meant everything to us. Thanks for sticking with us these last five months. We are so excited for the next chapter in our lives - a chapter full of possibilities and uncertainties, but most of all - LIFE. We love you all and wish nothing but the BEST for you all in 2013!


Much love...xoxo


Erin

Holidays, Lexington BBQ, and Bike Rides

Whew. I am exhausted. The last week as been possibly the most amazing in recent memory. I'll back track a little and fill you all in incase you somehow missed my daily FB updates.

The Christmas "weekend" I guess you could say started off with a veerrrryyy long drive -alone- all the way from Orlando to Albemarle, NC starting on Thursday and finally arriving on Friday. I cannot begin to tell you how awesome it was to get back to NC - despite the cold weather, which I generally LOATHE. This year though, thanks to a little extra padding (up another 2 lbs this week to an whopping 144 lbs) and lungs that aren't in complete AGONY, I actually *almost* enjoyed the cold. It was so nice to be able to be in the cold and still be able to enjoy myself. Thankfully it wasn't a "wet" cold or I doubt I would be feelin the same love.

That weekend started with a Christmas party with the best group of women I know. We have been talkin about this party for well over two months now and we had hyped that crap up so high that most people wouldn't even be able to come close to fulfilling the expectations.

We aren't most people.

Our Christmas party was an evening of food, dirty Santa (sometimes a little toooo dirty lol) and wine and incredible You Tube videos. Oh and wine. And ridiculous stories. And did I mention wine? Yeah there was wine. For some, too much wine ;)

Late into the week our Christmas party somehow transformed into a "onesie" party or an adult footed pajama party is that helps you envisions this spectacle. Think 7 grown women sittin around in full sized onesies. It was a pretty amazing sight. My husband isn't the biggest fan of the onesie but honestly that's just too bad. That thing is amazing, and I love it. I tried to wear it to church that Sunday but he sorta put the kabash on that one.




Yup. That's happening




Gangster onesies




Things starting to digress...




Foxy ladies








"She Ratchet"

Have I mentioned how much I freakin LOVE these women!? Gah, I have missed them.

The next day was FamJam time. Each year my entire family (Phillips side) gets together for Christmas at Uwharrie Point/Old North State Country Club for our Christmas get together. This year my parents, sisters, and their husbands/babies got out there earlier than usual to get family pictures made. It was the first time we had ALL been together since our latest member - Miss Shelby - had arrived and it was the first time we were all together since my transplant. We haven't seen the pics yet, but big thanks to Joseph Sides and Andrea Harris from Connection Photography for comin all the way out and dealing with our CRA-ZY family. It was such a special thing for us to be able to do and I know there are some awesome pics in there! We can't wait to see them!

Once the rest of the family arrived it was the usual - football, tons of food, catching up and presents. It was so good to see everyone and watch my babies play together. The only ones missing were my cousin Braxton and his wife Katherine. She *was* pregnant and was unable to be that far away from her Dr. Turns out it was the right thing! Mr. Holden Sherwood Wall was born just a few days later -- Christmas Day!! So we welcomed another "Santa Baby" into the fam. He is so precious and I HATE SO MUCH the he decided to make his debut literally like 2 hours after Chris and I headed home!!




Mylee & Mabree




Nap time!




Momma and Shelby




Playin Santa's sleigh...yeah I was Rudolph.




Outside - bravin the cold weather.




Me and Monkee




Dr Mylee




Sweet girls...




Holden Sherwood Wall born Dec 25, 2012 -- so handsome!

The rest of the weekend was spent with friends and more family. Christmas Eve we traveled the hour to Lexington for my **favorite** LEXINGTON BBQ! People, this is serious. I know everyone has their idea of what constitutes BBQ - even more so GOOD BBQ. But let me just tell you. This is the real deal folks. Lexington BBQ is famous and rightly so. It's the best - vinegar based, super moist and I mean man - Just freakin amazing. And don't forget about the hush puppies. Ohhhh the hush puppies. So, so good. You know how hush puppies got their name? Apparently some lady had a yappy dog and she made a batch of these little babies. She would say "hush puppy!" and to reward him she would give him one. Or atleast I heard that somewhere. Not sure it's true but let's pretend it is.




Oh yes.




Pig skin love people...it's. beautiful thing.




Family friends (the "kids") -all grown up- at the Spencer's house Sunday evening.

Christmas morning rolled around and it was so awesome to be able to see BOTH our families on Christmas Day. Something that we haven't done in about 5 years. We opened presents and had breakfast at my parents house, then headed to Charleston, SC to spend the rest of the day with Chris' family. I wish we had had another couple days off to spend more time in Charleston, but atleast ALL of Chris' family was able to meet in Charleston. It's been years since that's happened too! My two oldest nieces, Elizabeth and Abigail, have gotten WAY to big. I mean its seriously stressing me. Elizabeth (EJ) is in HIGH SCHOOL and is as big as me. I remember when she was barely a year old (when Chris and I first started dating). I can't believe how old she is. It's makin Chris and I feel really old. And sweet Abigail is such a cutie and is SEVEN. It's killin me. I was there the day she was born. *sigh*



Cannot remember what was so funny, but does it matter? This picture is hilarious!




Sister in law Ashley and her new FIANCÉ Josh! :)




Our first baby Abby, the boarder collie/pit bull mix. She is not a puppy anymore lol!

Getting back home to Orlando was sad at first, but I am glad to be home. Visited with my sister and her in laws yesterday which is always entertaining (lol) and was able to spend a little time with my girl Mabree which is always a good time :)




Live music at Ella's in Tampa...




To more live music (and some dancing haha) at O'Briens...




To interesting gift card purchases at Pier 1 the next morning haha

Cut to today. Sunday Funday at its finest. Chris and I spent the morning at the Lake Eola farmers market in downtown Orlando, then headed over to Wall Street Cantina to watch our beloved Panthers beat the Saints (albeit still making us slightly bonkers with their inconsistency). After that we stopped by Orange Trail in Oakland a few minutes from our house. We rented bikes and took an hour long bike ride - my first true bike ride in FIFTEEN years (maybe longer honestly). It was awesome. My legs are killin me, but my lungs? AHH-MAZING. I mean it was crazy! One full hour of biking, up hills and a little off roading (not my idea to say the least) and I was barely breathing hard! I think I'm gonna hafta buy a bike. I'm sorta hooked I think. :)




Relieving stress with an odd photo shoot while watchin the Carolina Panthers.




And again...




Bike:30




I think he thinks its cold out...

Well. There ya go. All caught up. I can't believe 2012 is all but over. I'm tellin you, this has been a crazy year. An incredible year, but awesome. This has been the BEST holiday I have had in so long I can't even remember one ever being this good. Friends, family, new babies, havin the ENERGY to enjoy it all, NO IVS, and NO HOSPITAL. I can't barely believe this is my life now. Absolutely a miracle. I am so thankful I have been able to celebrate this new life - this amazing miracle of rebirth and faith and grace - at the same time we are celebrating the GREATEST MIRACLE - the birth of the One who gives us this grace, who provides for us in our faith in Him. Jesus is the reason for the season and lemme tell you, this has NEVER been clearer, or more significant, to me as it has been this year. He has absolutely delivered me and my family from the Hell we were in and I could not be more grateful. God is so good people.

With this amazing sense of thankfulness comes an immense sense of sadness - I guess that's the right word. It's hard to completely reconcile the feelings that come along with transplant sometimes. Most of the time I'm so happy, so overwhelmed and literally shocked by what I am physically capable of, that I don't dwell on EXACTLY what had to transpire to get me to where I am today. But atleast once a day, even if its just for a brief moment, I remember. Sometimes I am just grateful, sometimes I have a twinge of guilt. Sometimes - like at the holidays - I'm overwhelmed with a sadness and guilt I can barely explain. Its not constant thankfully, usually something I think of late at night when Im layin in bed or by myself in my car. When things are quiet and calm and I dont have the benefit of any great distractions. I don't know why God spared my life at, what sometimes feels like, the expense of another. How is it fair that I have spent the last five months feeling so amazing and getting to experience such an amazing new life, while someone else had to die for that to happen? I realize that (hopefully) the young man who died to give me life is celebrating in a way COMPLETELY UNFATHOMABLE to me in Heaven this year. I don't know where his heart was on that front, but I pray that someone who could give this gift to someone would have Jesus in his heart. I don't worry about that for the most part. Nothing can be done now if that wasn't the case. But I do worry for his family. Who had to spend this first Christmas without someone they loved. Who was acutely aware of his absence on Christmas morning when his empty stocking hung by the others filled with all kinds of things and who's seat remained empty at Christmas dinner. I pray that while there was sadness and loss this year, that there was also a sense of peace that could only be given to them by Jesus and the promise we celebrate this season - the coming of our Savior.

I hafta write a letter to the family of my donor soon. I've honestly been putting it off because, well I haven't had the words. What do you say to a donor family to explain the significance of what their loved one has done for you? How are there ever the right words to give them the peace, closure and assurance that what was done with their loved one's body was the right choice? Organ donation isn't for everyone. I know that. I can only hope the family was ok with his decision. And if they weren't, that whatever words I can find to express what his decision has meant to me will help them find a peace with it. I'd hate to think that there were people out there who regretted that decision, who felt some sort of animosity towards organ donation - or to me as the recipient - because of what happened. I have put it off for as long as I can. I wanted to do it sooner, but like I said - no words. Now I regret I didn't do it earlier. I can't help feeling like my letter may have been a source of peace for them at the holidays. Then again, maybe not. Maybe it would have been too much. I just hope that my procrastination on the letter was the right move. And that when I do write it that my words are Heaven sent and are what they need to hear, whatever it is. So throw up a couple prayers for me on that one if you don't mind. I hope to get it written and sent in the next few weeks.

Again, and as always, thanks for indulging me tonight. I know this was a long one, so thanks for hanging in there! I hope you all have had an amazing holiday season so far. The New Year is literally hours away. I can't wait to see what 2013 has in store! Love to you all -- thanks for being a part if Chris and I's life. You all have had such a huge impact in our life and each one of you has helped us in so many ways. We pray for you all everyday and thank God for everything and everyone he has put in our path. You have all made such a difference to us.

xoxoxo and Much love...
Erin