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