It's good to be home...

What a week. Well, last TWO weeks I guess. We have officially been HOME for two weeks now. Sorry it's been a while since my last post, but its been a little crazy since the move back. Tryin to get my house back in order, tryin to get through the tons of thank you notes I'm writing, and loads of other stuff, has kept my time for blogging to a minimum!

My first day back was a little surreal. I kept walkin around the house as we moved our stuff in thinkin, "I can't believe I'm here. More than that, I'm here and I can breathe!" It's crazy to think that the last time I was in this house I was circling the drain. Sittin in my chair in the living room is weird. (Yes, I have a "my chair" - no, Chris does not LOL) Before, I had been camped out there for days. I was strapped to oxygen 24 hours a day and could barely get up to fix something to eat without struggling HARD. I was seriously miserable. I'd be posted up in the living room hurting, wheezing, coughing up blood and puffin on my breathing machine half a dozen (sometimes more) times a day like it was my job. I feel like I should be surrounded by a variety of medical equipment, but that's no longer necessary. Weird.

But awesome.

Kellyn, Ronnie and Mabree came over last weekend. Mabree had been given Sea World tickets last Christmas by mom and dad and since I was feelin AH-MAZING I got to tag a long! Do you have ANY idea how awesome it was to be able to walk around a park of that size and not be phased by it at all? To not hafta take constant breaks to catch my breath? It was so much fun and I was so glad I was able to go and see Mabree's reaction to all the whales and other animals, and to be able to ride the Journey to Atlantis log ride with her - her face in the picture is PRICELESS! I wasn't able to ride the awesome lookin roller coasters yet, just the non-jarring log ride that gets you SOAKED, but as soon as I'm cleared for that I'm goin back. Dad got me a Fun Card (pay for a day come back all year) soooo as soon as I'm done healin I will be ridin the Kraken.



Mabree is so stinking funny!


Still feelin pretty amazing - home spirometer reading the other day showed my FEV1 at an all time high for me - 107%. I have NEVER had lung function this high before EVER. Not even when I was at my healthiest and running miles a day during track/cross country or playin soccer or basketball. I didn't even KNOW your lung function could get that high. And if I had I would have NEVER believed I'd ever reach it!

Weight is maintaining right at 140. Next goal is to put on 10 more pounds of muscle weight. I also may have mentioned this before, but I gained an inch of height. Well not so much gained, just got back. Last few years I dropped from 5'11 to 5'10. I was in so much pain and had such a hard time breathing that I had started slouching and getting all hunched over. Well I'm standing and sittin straight now so the AMAZON IS BACK BABY! I've had to buy some new clothes because my pre transplant body was shorter and much skinnier than I now. Particularly my pants. I had gotten to literally havin to SHOVE my self into my jeans. (Never thought I'd EVER have THAT happen!) I'm talkin circulation issues here people. But my shirts aren't fitting great now either - my arms (and other things north of the belt line) have gotten larger as well. So unless the clothes were on the big side before its just not happening. I plan on goin through the closet and dressers this week and makin some serious donations!

I went to the Central Florida CF Support Group education day yesterday and spoke to the participants about my transplant and this blog. It's safe to say my public speaking skills are seriously lacking. The entire time Im tellin my story, all thats goin on in my head is "Don't cuss at these people. Don't say anything ridiculous or inappropriate. Seriously, don't." I don't RECALL any major slip ups, but with my prednisone/prograf brain I honestly can't really remember. So any of you reading this today that were in attendance yesterday I do apologize. Not only for the poor delivery, but for anything absurd that may have escaped my mouth - I did try. Being a motivational speaker is officially off the table as a possible career choice. I'll stick to the blog.

Tomorrow I'm starting back to work. Part time of course, but I'm ready to get back. I'm also gonna be goin back to school in the Spring, so I'll be workin on gettin all that stuff worked out this week. Pretty excited about it, but also a little nervous. It's been a while since I was last in college and well, I wasn't exactly success story (that's prolly putting it mildly). So pray for me people. This should be interesting.

Oh and for those who may have missed my FB post last night, we had people over to our house and I cooked a ton of food. It was super fun to finally get back to cooking. It's always something I love to do, but - like everything else - had become nearly impossible for me to do much of. I decided to try my hand at frying shrimp for the first time. Spent like an hour dredging these dang things, dippin them in this homemade beer batter and frying them up. My house REEKED. I am not a fan of ANY seafood and was not happy that my entire house freakin stunk. But they cooked up quick, looked like (what I thought) they were supposed to look like and honestly I was pretty excited that I got them done without some sort of grease fire or severely burning the shrimp. I set them out right before Chris came home and he beelined right for them once he walked in the door. It was at that point he informed me that, while they looked great, they had been battered and fired with the shell and claw/leg thingys still on. I was pissed. I don't eat shrimp, much less ever tried to cook them so I had no idea I needed to do that, especially after I asked the dude at the seafood counter for like ready to cook shrimp cause I didn't feel like deveining a bunch of nasty shrimp poop. Well apparently THAT didn't happen, and my ignorance of all things shrimp didn't put me in any position to notice any thing was wrong. So needless to say those shrimp found their way to the trash and I was furious. I have decided I am giving up on cookin all things seafood. I tried to cook Salmon for Chris and I last year and that was also a complete fail. So I'm done. I gave it the ol college try. I'm stickin to what I know from now on.

Seafood - 2 Erin - 0


So there you are - pretty much up to speed now. I'm goin to end here and go enjoy my Sunday Funday, which will consist of cleaning and other house stuff today. We really know how to take advantage of our day off together don't we? Hope you all are well, and as always, big thanks to everyone for continuing to pray for us and for stayin on this journey with us!

Enjoy the day folks! :)

Much love...



Erin

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!

Well, I'm back

That is, back in the hospital.

Yes, dear friends, your's truly has gone from new port procedure on Monday, home, and back to Winter Park Memorial in five short days.

What a way to ring in the one week anniversary of being listed for transplant.

Long story short (or I guess short story, made even shorter) I was discharged from the hospital on Wednesday, had my usual day of feeling crappy the day after, and by Friday night was headed back across town to the hospital after an evening/night of coughing up more blood. Its safe to say these 'ol lungs of mine are wearin out quickly.

So here I sit, watching WPMH's version of cable, which features about 10 channels all about the hospital and its hospital network, Florida Hospital, 6 channels featuring the 2012 Olympics and about 5 other channels that never have anything decent playing. Luckily the Food Network is one of those few so all isn't a total loss. Well, unless you're scouring the hospital food menu while Giada cooks up one of her amazing italian dishes and all you're left with that comes close to it is the hospital spaghetti. Which in all fairness isn't half bad but still - you know you'd rather eat Giada's version.

But I digress.

Last night ended with Chris driving me, kicking and screamin as usual, to Winter Park Memorial Hospital around 3ish this morning. After we managed to get past a terribly unpleasant woman - Vicki, RN - at triage, we settled down to await the usual assesment, xrays, breathing treatments, etc in our quartered off section of the ER. It always amazes me how they insist on me doin a breathing treatment first thing. Like they assume thats not going to be my first go-to treatment when flare ups like this come along. Its CF, people, not IBS. I head straight for the Albuterol, not the Imodium.

At any rate, we proceeded to be entertained (and equally grossed out) by the neighbor sharing the other side of the thread bare curtain separating our pen from the one next to us. For hours, the 70 year old man next to us requested (very loudly) a "pee jar," explaining, to no one in particular as the nurses were doing a fine job ignoring him most of the evening, that he was on Lasix (a diuretic) and when he had to go, he had to GO and that he prolly wouldn't make it to the bathroom. I can't tell you how excited I was to have a chance to maybe experience THAT. I was tempted to start helping the man out after the first hour, holding on to all the restraint I had in the world just to keep myself from yelling out "for the love of all that's holy, please, someone get the man a pee jar!" Finally a pee jar was mercifully delivered, at which time the requests for tissues began. Apparently at some point during the begging for the pee jar, this man had developed quite a bit of mucus, mucus which was seemingly coming out of this man at an alarming rate which if a tissue didn't appear soon, he would be forced to spit it on the floor. Thankfully, one of the nurses responded to this request quicker than they had the previous, I suspect in an effort just to shut him up rather than the fear of him hockin a lugy on the ER floor. Welcome to hell.

By 7am I had to send Chris home since he had to be at work at 8:30am without having slept a minute the last 24 hours (at the time this is being written, he is officially running on 36 hours of no sleep). God bless that man. Honestly, he is way to good for me. At this point, I'm shuttin down. I'm tired, in pain, and just over it. I laid curled up quietly holding back tears for the better part of an hour. Its at that point my mom's sister Patti showed up and the flood gates opened. After a good cry, a phone call to the parents followed by another cry, and a total of 9 hours in the ER, I was FINALLY told they had a bed ready for me. Just in time for lunch.

For the next few hours I settled in - ate lunch, talked with doctors, couple more blood draws and caught up on the IV meds I missed during my stint in Orlando's version of Alcatraz. Our current treatment plan is some modifications to some medicines that seem to be thinning my blood too much, upping my Vit K and ordering a consult from the hematologist for tomorrow since latest blood work has come back showing a low platelet count. Not something that is unusual for me, but something we're hopeful will slow down or stop these bleeds. We're hoping that all these small changes in my treatment will give my lungs a break for a while so I can focus on regaining my strength and packing on some of those ellusive pounds I'm always chasing after. If this doesn't work, the next step is another bronchial artery embolization, which Dr. Layish really doesn't want to do right now.

And thats where we're at. Im tired, sore, and need a nap.

So now, I'm going to ask for what we always ask for. Your thoughts and your prayers. I'd like to ask for you to specifically pray for my husband Chris. He is amazing. His strength, patience and positivity is amazing. I truly know that without him, I wouldn't be here today. He needs your prayers for strength as he travels back and forth from the hospital, work and our house surviving on just a few hours of sleep at a time. He saves my life everyday, in one way or another and I am so thankful he's mine. Please pray that he knows everyday how much he means to me and my family and that even though I may not say it everyday, that he means more to me than anyone ever could and that his sacrifice, his dedication to me and to us never goes unnoticed.

Thank you for all the love you have shown to me, Chris and my family. Its holding us up and carrying us through this journey. We appreciate every text, call, email, and post that shows us that we are not going through this alone. Please know that each one does not go on noticed. And please keep them coming...this journey has - God willing - just begun.

Much love...E