Tuesday, August 14, 2012

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...



  1. As always, I love reading your posts. Such a beautiful story, almost doesn't seem real!

  2. The only thought that kept looping in my head while reading about your journey Erin is "AMAZING"! I continue to keep you in my prayers for a continued speedy recovery.

  3. Erin, the way you relate your journey is incredible. You are taking us along with you and some of us can feel your pain and your new energy. This is miraculous. You are a gifted writer and need to share your story in a book. You offer hope to so many who are going through what you have survived. I hope to be one of the first to have an autographed copy! :) God be with you and as your Mom says "Slow down!" and rest. You have such an amazing journey before you.

  4. I happened to post a song on my fb page; "I'm gonna love you through it" - song by Martina Mcbride. The song is referring to women who have had cancer. I still couldn't help myself but think of you, Erin. I think of how strong you are and how myself and everyone, has watched your family and friends "love you through it"! As a mother, I can't help but think about your mom and what it has been like for her as well. I know that your entire family has loved you through it...but there is no love like a mother's love. Watching your mother, and knowing your family; explains why you are so awesome! I love you like my own and If there is anything I can do... I AM A PHONE CALL AWAY...we will all "love you through it"! Thank you for being such an inspiration to so many lives; by showing strength and most importantly FAITH...God Bless you and yours!!!!! WE LOVE YOU

  5. AMAZING!!! I am laughing, crying and rejoicing all at the same time!! thank you so much for sharing this part of your journey, although I thank god everyday I am not at the point of transplant yet, it has been discussed and I have had a few intial appts. It fills with me with great hope to read experiences like yours that is for sure. I look forward to reading many more triumphs and amazing moments. CF is a daily battle that is for sure, but there is so much to be thankful for, blessed with, and people who know exactly what you go through to connect with. Be blessed and be well :)