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

The moment this blog title took on a whole new meaning...

...was seriously instantaneous.

From the moment I opened my eyes I could feel it. Still on the vent, my left eye - for some reason - in excruciating pain, my arms tied down...but I could still feel it. Once they took me off the vent, barely 12 hours after coming out of surgery for the last time, I could REALLY feel it.

I could feel what I hadn't felt in years. Air - moving so quickly and deeply and effortlessly into my lungs at such a rate I wasn't actually sure I was breathing. I remember one of the first things I asked out loud was to my mother - "Am I still breathing?" It was such an amazing feeling, but a very unsettling one at the same time. For over ten years I have fought for every breath. Every time I took a breath in it was a constant battle to get enough oxygen into my lungs to sustain me. And the pain. Sometimes just a dull constant ache, other times sharp acute pain that left little spots in from of my eyes. And don't forget the ripping. For the last year I had been experiencing an almost debilitating pain in my left side. A pain that I could feel and HEAR as it felt like something was being ripped from my chest with every breath. I was never sure how that could be. How or what exactly could be ripping?! And my Lord, if it is ripping, that canNOT be good. Turns out though, I was right. There was in fact ripping going on. Remember the complication during the transplant? Where they had to literally cut my lung away from my chest wall? Well turns out that since my left lung had adhered itself to my chest wall, every time I took a deep (well, I guess DEEP is generous, but you know what I'm saying) breath my lung was literally being ripped away from my chest. Talk about pain.

But now - it was like I wasn't breathing. So much air all at once and I couldn't feel a thing. Being so in tune to my breathing and coughing for so long made this kind of breathing feel wrong. I strained to listen to my lungs as a put the words "Inhale. Exhale. Repeat." into practice. Over and over trying to wrap my mind around the fact that:

1. I was actually still breathing
2. I was in a horrific amount of pain - but not the pain I was used to. In fact, I decided almost instantly that if this was the trade off - searing pain shooting throughout my body every time I shifted my weight even the slightest - I would take it, and take it over and over, everyday, if I could breathe this deeply. My lungs were the only things that WEREN'T hurting.
3. I was breathing and not coughing. I was talking without getting winded.

And I never want it to ever go away.

For the next few days the concept of "Inhale. Exhale. Repeat." would consume nearly every coherent (and incoherent for that matter) thought I had. It didn't help that my nurses, Chris, mom, dad, my sisters, and my doctor's were all instructing me to do the same. I kept flying into a panic, sure that I wasn't breathing and insisting on knowing IMMEDIATELY what my blood oxygen stat was. I wasn't wearing oxygen so I felt that at any moment my stats would plummet and I wouldn't have my safety net to make sure I was OK. The thought of not breathing was petrifying. But there were the numbers: blood oxygen levels rarely dipping below 97% on room air. It was UNREAL. Its still unreal. Officially two weeks post transplant and the effortlessness of taking in a deep breath still catches me off guard. Walking around and not being out of breath - crazy. Walking and talking at the same time? That's been absolutely impossible for YEARS now. So much pain - but so much freedom.

Weeks ago, getting up from the living room and making it the bathroom required 2 minutes to get myself mentally ready. The walk to the bathroom usually required me to catch my breath over the course of about 10 minutes before I could get up the energy to make it back to the couch. Its been the last 6 months that I finally realized that there wasn't gonna be any more "getting better." That I was in fact dying, and that the day-to-day fight was only gonna keep me going for a short while longer. You might not have seen it on the outside, but I was finally understanding what was going on on the inside. They never came out and said it directly, but my pulmonologists all knew it. My suspicions were confirmed a few days after transplant. One of my doctors who had been in the OR mentioned getting a chance to take a look at one of my lungs once it had been removed during surgery. The look on his face said it all, but I made him tell me anyway. "This happened at just the right time."

You can say that again.

The way every aspect of this journey has fallen together so far is still overwhelming me on a daily basis. The timing of being listed, to getting my call, and then to be discharged after only 9 days is not the normal case for double lung transplants, that's for sure. The way the apartment I wanted for us to have whenever we did get to Jax was available exactly when we needed it, even though the complex managers had warned us that they have very little availability so it may be difficult to get it when the time came. The way it was THE perfect apartment - first floor, brand new carpet installed two days prior to our moving in, freshly painted walls, the perfect size for Chris, my mom and I to share for three months, the way our furniture was able to be moved up here and fit like puzzle pieces into the space so we didn't hafta rent anything. The way Chris and Mom's jobs are helping make their time off during my recovery as easy as possible. The way I was able to get home from the hospital, just in time for my best friends in the world to make a special trip down to Jacksonville to visit me, not knowing whether I'd still be in the hospital or not...

Only God makes these types of things so beautiful. It would be so easy for us to focus on all the negatives - the pain, the expense, the not knowing what will happen next, the inexplicable loss my donor's family is going through, and will continue to go through...but God has shined a light on this journey so bright, its made that almost impossible. Don't get me wrong, there have been, and WILL BE, days where it all feels like way too much. The pain, the discomfort, the frustration of finding a balance between the life I was living, the life I want to live and the life I will be able to live. Overwhelming doesn't even begin to describe it. But in those moments God always gives me something, something to remind me that this is His doing. And that the things He does, he does right.

Life immediately post transplant has been incredible. My favorite thing to do now is walk. Yes, you heard that right. Walk. And if that's not God's doing I don't know what is! Since day 2 after transplant they had me up and walking. By day 4, I was walking 1-2 MILES a day. MILES people. Do you have ANY, ANY, ANY idea how long its been since I have walked a mile in a full day? Much less at once, without getting winded, without hurting, or without needing oxygen?? If you do know, let ME know would you? Its been so long, I honestly couldn't tell you. I can honestly say I am hooked on walking. Anywhere and everywhere, I am up to move. You can't even imagine what it's like to not be able to just walk out to your car to go to the grocery store without it draining everything out of you. I went to Target for the first time post transplant the other day and you know what my mom said to me? "Slow down!" Holy crap...that's awesome.

As it is right now, I need to stop here for a while. I'm headed back out to Mayo for a few more doctor visits. Slow day, so nothing but really goin over meds, progress at the PFT yesterday and hopefully my biopsy results from yesterday. Like I said before there is much more to tell, so I'll be back to the blog maybe tonight, but def tomorrow.

Enjoy the day folks... :)

Much love...



Erin

Have you ever been at a complete loss for words?

Yeah, well, not me. Not today atleast.

 

 

Infact, who knows...this blog may end up being a two-parter. I have that many words today.

 

 

First off let me just say -- God is good, people. Real good. If you don't believe that, I don't know how you're gonna believe this ride my family and I have been on the last few weeks. Its that good.

 

 

Most of you know by now, but in case you've been living under a rock these past two weeks, I'll bring you up to speed and start at the beginning:

 

 

Date: July 31, 2012 -1am.
Location: Winter Park Memorial Hospital in Winter Park, FL.
Status: BORED OUT OF MY MIND AND PRAYING FOR SOME FORM OF ENTERTAINMENT.

 

 

Don't you just love it with God turns up big and in your face? In response to poor television no less?

 

 

It was that quick. One minute I'm posting badly posed photos of myself on FB and praying to God lift the boredom, next minute I'm in a full out panic as I attempt to fight my way out of oxygen, IVs and heart monitors.

 

 

Why? I got the call. The call this entire blog was initally created around - the call for new lungs.

 

 

Around 1am I had finally decided hope was lost on the TV front and had settled down in bed to attempt some form of sleep. Moments after the TV went dark my cell phone rang. Chris had left not long ago for home, so assuming it was just him letting me know he had gotten home ok, I almost didn't answer it.

 

 

Thank GOD I did. Honestly, when thinking back, THAT is the true miracle of this entire thing.

 

 

As I rolled over to screen my call and decide whether or not I would be answering I noticed the 904 area code and my heart nearly fell out of my chest and across the floor. 904 = Jacksonville, FL, i.e. MAYO CLINIC.

 

 

Mayo Clinic - the place I would get my lung transplant barely 12 hours later.

 

 

My hands shook so hard answering the phone I honestly don't know how I answered. When I heard "Mrs. Taylor, this is Dr. (I actually don't remember who I spoke with) at the Mayo Clinic. I think we have lungs for you," I could only reply with, "Are you sure?"

 

 

I had only been on the lung transplant list for TEN DAYS. TEN DAYS. I hadn't even gotten my mind completely around what that truly meant, much less what it would mean when I actually recieved my call. I had never heard of people being called up that quickly. I mean, obviously, it appears that happens, but still. Average list time is over a year for double lung transplants. No where close to my ten days. I had assumed I wouldn't be listed that long, cause when I was listed ten days prior they told me I was number 4. But even with such a high number I thought I would have a few months...weeks atleast?!

 

 

To say I was upprepared would be somewhat of an understatement. After I had the Dr assure me he had not called me by accident, that ERIN Taylor was the "Taylor" he meant to call - because seriously, Taylor is a pretty common name and if I drive all the up to Jacksonville just for yall to be expecting Frank Taylor instead of Erin, I was gonna be pretty upset - I frantically began pressing my nurse call button at around a hundred hits a second. I had lost complete control of fine motor functions and could not stop myself from hitting it over and over until I finally had to force myself to just chuck it down the bed away from me. When the nurse came into see me I just started rambling over and over about how I had to go, I had to go right now, RIGHT NOW. I could see she was thinking seriously about some form of emergency sedation on my part, but lucky for me she let me explain my panic enough that by the time Chris got back to pick me up I wasn't some drooling nincompoop. I was able to get out the fact that I was on the lung transplant list and that I just got my call for lungs and that I had to get to Jacksonville RIGHT NOW and that I was walking out of here as soon as my husband got here, whether I was being discharged legitemitally or if she was chasing after me with AMA papers. She got the message and left me to my panic as I quickly dropped the bombs on Chris, my parents, and my aunt. Each conversation was about 30 seconds long, mainly along the lines of, "Its me. They've got lungs for me. We hafta go right now." Details of the rest of each conversation are pretty vague, although I do remember when my aunt asked me "Ok what do you need me to do?!" all I could respond with was a frantic "I DON'T CARE!" followed by the sound of my cell phone cutting her off without so much as a goodbye, love ya, or see you soon.

 

 

Dragging IV poles, oxygen and heart monitors around a hospital room isn't as easy as you might think. I was nearly blind with sheer panic so its a miracle I didn't somehow end up passed out - or knocked out - on the floor. I picked up everything I had and started throwing it all in my bag so fast all I could do was pray that I hadn't left anything important behind, not that I really cared at that moment if I did or not. About 8 minutes had gone by since I  had hung up with the Mayo doctor at this point, and suddenly my phone started ringing again. Checking to see who it was almost gave me my second heart attack in 15 minutes. Mayo again. And I swear, if they called it off I was sure I was gonna need sedation of some kind, some sort of emergency care after the panic that had been screaming through my body the last few moments was surely not healthy. This time though, God could obviously tell I was on the verge of a mental melt down, and He showed me mercy (the beginning of many many many moments of mercy throughout the next hours, days, weeks). The Dr had called to tell me that the surgery to recover the organs from Miami was set for 12 noon, so not to kill myself trying to get to Mayo, just be there by 8am.

 

 

Oh, Jesus. Thank you. You sure know how to take care of me.

 

 

At that moment, things finally begun to fall back into focus a little. I was able to call the fam back, let them know they would have time to get to Jacksonville before I went into surgery (something I knew they were all upset about the possibility of missing), and Chris and I were able get me out of the hospital and back home for a few hours. As I walked through the door I realized I had NOTHING prepared like they tell you to. Readybag? - Nope. Car gas tank on full? - Not a chance. For the first little while, I just wandered around our house in a fog muttering to myself, breaking out in sweats, crying, getting really excited, then back to muttering. As I was coming to the conclusion that the Psychiatrist who cleared me for this surgery may have acted a bit prematurely, I finally was able to think of something productive to do. Shower. I mean who knew when I'd be showering again. So after I showered, dried my hair and threw about 4 things in a bag randomly, I realized I was back to zero again. Chris suggested I go hook up on the oxygen for a while and try to sleep while he got everything else together. During the next few hours he cleaned up the remainder of the dishes, took out the trash and pack a few things for himself. Around 5:30am he woke me up and we headed out of our house, potentially not to return until sometime in November, potentially with me breathing with new lungs!

Chris and I before being wheeled back into the OR for transplant.

 

Cut to Mayo Clinic 8am - I'm in my ICU room, the room I will return to after surgery, as my doctors and nurses come in and out, taking blood work, xrays, hooking me up to IV fluids and having me sign my life away. Mom, Dad, Kellyn and Jillian arrived shortly after, along with other family members. At this point all my adrenaline was gone and I fell asleep as the rest of my family sat in the room and, honestly I don't know what. I'm sure they'd tell you if you asked. Finally, we got word that the lungs seemed viable and that the recovery team was enroute back to Mayo and thats when things started going pretty fast. The "knock-out" team came in, explained the deal with the sedation and gave me something to relax. After a big, beautiful prayer by my daddy, goodbyes to everyone, and a finally wave to the room, they rolled me back to the OR around 2pm. It seemed like we were a GO, but it would come down to literally the last minute before we could know for 100%. At this point, I might still be returning home without new lungs (called a "dry-run") if the lungs finally got to Mayo and were deemed unfit.

If you have ever had surgery, I don't know what your experience is, but I honestly don't recall being wheeled into the OR awake. At the very least I've been under some sort of conscience sedation. Not this time, folks. WIDE AWAKE. And if you think the OR set ups on Grey's Anatomy seem daunting, come check out a double lung transplant OR at the Mayo Clinic. Those TV sets might as well be the set of some backwoods hillbilly medicine lady with a dirty rag, a wobbly old wooden kitchen table, a bottle of moonshine and a rusty knife. This was intense. Seriously intense.

Luckily it was only intense for about 30 minutes. I don't remember them saying so, never heard it announced, but it must have been. The lungs were there. And they looked good. We were a GO. And I was out.

 

Apparently much went on while I was out. The removal of my lungs, one at a time. The first one, which had essentially no function left at all, was the left one and it proved to be a challenge to remove. Over the years of infections, bleeds, scarring and other issues the lung had actually attached itself to the wall of my chest and partly to my diaphram. They literally had to cut my lung from the wall which resulted in quite a lot of extra bleeding throughout and after surgery. After the left was successfully removed, the new lung inserted and the incision closed, they rolled me on my other side to repeat the procedure with the right lung. The right lung, thankfully, was removed easily and the new lung replaced without incident. I was finally closed up and rolled back out to my ICU room at around 9pm. By 10pm I was still under, but they let my family back to see me for a few minutes. My parents and sisters went back to the hotel at that time to try to get some sleep while Chris stayed at the hospital. The doctors watched the fluid coming from the chest tubes they had inserted and were not happy with the excessive amount of fluid coming from my left side. After a few hours of pumping me full of Lord knows how much fluid, blood and different clotting medications, they finally determined that they would need to back into the OR and fix the bleeds themselves. Once inside they found and controlled the bleeds and removed two clots that had formed. A few hours later I was back in ICU, being woken up around 8am with my ventilator still in.

 

It was over. The biggest surgery of my life was over, and I had made it through. I had new lungs and soon I was going to be breathing like I haven't been able to in ten years. I can't truly explain the inital thought process  in those first few moments of waking up and realizing what you've just gone through. Through all the fog I still remember thinking, "Holy crap. I did it. And damn, my eye hurts like hell!"

 

Yup, my eye. Nothing is ever what you expect is it?

 

Well, go ahead and get used to that idea. Because the "unexpected" would remain the theme for the next two weeks.

 

Whew. You tired yet? Me too. Remember what I said about a 2 parter? Yeah, well looking like its going to be atleast that. So for now, I'll stop for the night and pick back up tomorrow evening. I hafta be back over to Mayo bright and early tomorrow morning (6am) for my first round of blood work, xrays, and brochoscopy since I was discharged, and my VERY FIRST  pulmonary function tests since before the transplant. To say I'm a little anxious about tomorrow would be putting it kindly. My last FEV1 numbers were a pathetic 22%. I can't even imagine what tomorrow's will be like. As always, I'm keeping my "expect the worst, hope for the best" mentality. That's the only way I'll make it through without freaking out over the result, whether its good or bad. So if you're reading this Sunday night or before 8am tomorrow morning (time of PFT) send up a prayer for me if you're willing. If for nothing else, for peace of mind. That can carry me a long way right now.

 

So for now, goodnight. And thanks. Thanks again and again for continuing on this journey with me. Its been crazy - CRAZY - the last few weeks, but we've had the most amazing support and it has meant the world to us. Between you all and my God - this has been an absolutely mindblowing experience. And its only the beginning.

 

Much love to all...

Erin

It was NOT a drill.. Erin's GOT LUNGS!

It was NOT a drill. Erin received her new lungs on Tuesday July 31^st at the Mayo Clinic in Jacksonville, FL. In Erin’s place, I am blogging to keep all her adoring fans updated on her journey. Don’t worry, she will take back over soon enough!

Erin arrived at the Mayo Clinic and was in her room waiting for her scheduled surgery, by about 9:00 am on Tuesday. Family began to arrive at the hospital around 9:30 am excited and nervous for the final “Go” from the surgical team. As Erin and the family waited, the surgery time moved from noon to 2:00 PM while the harvesting division of the transplant surgical team went to get Erin’s new lungs from Miami.

Erin went down to the OR with a smile and a wave at 1:50 PM and went into surgery at approximately 3:00 pm, when the all-clear was received from the harvesting team. The Mayo OR gave the family calls a number of times throughout the surgery to update on how Erin was handling everything and where they were in the process. Finally, at 8:25 PM, the large group of Erin’s supporters got the exciting call that they were closing her up.

Erin returned to her ICU recovery room at around 9:00 PM sound asleep with her team of transplant specialists. The family was allowed to go in about an hour later to see her and say a quick prayer. Dr. Keller was there when I arrived and I got to ask plenty of questions, which he was thankfully willing to answer. At that time he explained that there was some bleeding around the left lung which could potentially cause some setbacks.

See, the left lung has been Erin’s nemesis over the years. With little, if any, true function left (due to a number of embolizations and bleeds) the lung had attached itself to her already inflamed pulmonary wall. When it was time to transplant this lung, there was quite a bit of bleeding that took place from its removal and continued into the night on Tuesday.

By midnight, and after approximately 35 minutes of sleep at the hotel, Chris gave us a call to let us know that Erin was heading back into surgery to control the bleeding that was coming from the left lung area. Back to the hospital we trekked. She was in surgery for about 2 hours and they were able to control the bleeding and remove two clots which had formed over her time in recovery. These clots had to be removed through surgery since they would not drain and could subsequently cause increased pulmonary pressure and collapse of the new lung.

By the time the family arrived back at the hospital in the morning, Erin was stirring. Being that I was one of the first in the room, I was concerned when I saw her lifting her hands (especially since the Dr. had explained to me that they might have her unconscious and on a ventilator for 24-48 hours after surgery). Chris quickly explained that they were waking her up and they were ready to get her up and moving. Things had obviously improved drastically since her latest surgery.

Erin awoke with a little confusion and fight against her ventilator but quickly calmed and focused to understand what was taking place. She was on narcotic medication at that point so was pain free but was lucid enough to spell things on her hand and show us that amazing sense of humor that is unique to Erin and, as we have seen, never failing.

Over the past two days the doctors have been working diligently to control pain and move her forward in her recovery. Let me please tell you, she is SUPER WOMAN. I have been saying it on Facebook since I started updating everyone, based on her incredible courage and strength before the surgery, but she has truly earned the name throughout this process. Yesterday and Today she has been weaned off many of the extra machines that go along with a transplant and has pushed herself to get better and better.

Erin is doing PT for her lungs and she is incredible! It’s just amazing how she is so competitive with herself and is working so hard in increase her PT numbers despite the fact that she has been told that most transplant patients don’t even EXPAND THE LUNGS ON THE FIRST DAY! Well, Erin didn’t get that memo, and neither did her husband! So, the funny part is, Chris thought she was supposed to be doing that every hour on the hour so he set his alarm and woke her up all night to do her PT. Well, yesterday morning, the nurse explained that she was only supposed to do PT during waking hours…. SOOO she earned a little extra credit.

She is awesome.

Yesterday was her birthday. She turned 28 and got the most amazing gift anyone could get. Life. Thank you Jesus for this gift, and we pray that the gift that this donor gave to Erin and our family will be a comfort to the family who lost their son/father/uncle/friend. He was able to provide a precious gift, and I can guarantee that Erin will take full advantage of the opportunity that has been given her. I only hope in my life and death I can provide such a gift to someone, I can tell you that Erin has and will continue to.

Yesterday Erin had machines removed, had a complete meal and took a motivating and awe inspiring walk. She walked around the entire ICU floor and wasn’t winded or tired. She was amazed and so were all the folks on her floor. Less than 24 hours after her surgery, she was walking… Wow.

Today she has continued to improve. More machines are gone and plans are being made to remove the chest tubes which are draining fluid from her pulmonary cavity tomorrow and the next day. The infectious disease doctor stated that would make her feel like a whole new person, especially since that is one of the most painful areas of Erin’s body right now. Great things are continuing thanks to the diligent prayers of Erin’s many friends and Prayer Warriors.

Erin’s husband has been her rock throughout this entire process and we all are so very thankful for him. He encourages Erin and knows just when and how to push her to get the very best out of her. Throughout their years of dating, and now years of marriage, I don’t know that Chris ever anticipated what his role would be in this stage of Erin’s life. I can now easily tell you, we would all not be where we are today without him, and we are so thankful!

I would like to thank you all for your many prayers and messages, Likes, texts and calls. It has meant so much to our family to feel the love and support that has been given to us all. Erin has always been a miracle but this has proven just how great His power is beyond a shadow of a doubt.

I know this is long winded but so much has happened and I didn’t want to leave anything out. Erin will be back soon. She looks forward to updating you all as she improves and feels better. Keep following, her posts to come will surely be entertaining!

I JUST GOT THE CALL!

Holy crap people this is not a drill!

At 1am I recieved my call from Mayo Clinic - they have  LUNGS  for me!!


As its stands right now, my surgery is scheduled for 12 noon on Tuesday. Right now I am getting discharged from Winter Park Memorial in Orlando, headed back to my house to geab some stuff and then we are off to Jacksonville. 


Unless we get up there and they determine that the lungs are not viable, it looks like by this time Tomorrow I will be breathing with a new set of lungs. If the lungs are not viable, this will be referred to as a dry run and then the surgery will cancelled. Ill remain on the list at my current stop and the waiting will start over again.




So, here we go guys. This could be it. Thank you to everyone who has kept my family in their thoughts and prayers through this. Please continue to lift us up today. Pray for my team of doctors, that the surgery is a success and they are guided by God's hands. Please pray for my family as they wait during surgery. Please pray for my donors family. Today they will say goodbye to someone they love. Ask the Jesus hold them as they say their final farewells to their loved one. Ask that they feel your prayers for them through this. And finally please lift me up in prayer. I need all the prayers I can possibly get.


Thank you...I love you all.




XOXOXO


ERIN