Best appt yet, BIG THANKS, and a visit from the dad-in-law

Whew. The last week has been full of activity! Some I was involved with, some I wasn't, but all were awesome and left us feeling even more thankful and blessed than ever. God's grace continues to bless my family and I continue to be in awe of how incredible this journey has been. I know Ive said this over and over, but I am still so overwhelmed by all that has happened the last two months. As soon as I think Im getting used to this new life and all the incredible things that have come along with it - BAM! I get more news that just completely floors me! Thankfully, all this flooring news has been GOOD flooring news, so we'll just hope this trend continues!

As some of you may have seen on my FB post last week, I had my standard Mayo work up, which consists of blood work, chest X-ray, pulmonary function tests (PFT) and the lovely bronchoscopy and lung biopsy. Everything went well the day of testing, as it usually does. Everything at first glance looked great, but as usual, you never really know the full results until the next day. What I did know for sure though was that my PFTs were again improved from the previous week - up to 88%! This was the first PFT that resulted in completely NORMAL results! For the first time, the doctor reviewing my results looked at me and said, " Great news, you are officially showing NO red!" To which I replied, "Huh?" She explained that all the different measurements we took, when entered into the computer, either appears black or red. Red is below normal, black is normal. For the first time since I can't even tell you when, prolly high school or earlier, ALL MY NUMBERS WERE BLACK! I am officially breathing with a NORMAL lung function!!! And she says that for the next month they will continue to climb gradually, as opposed to the near 10% jumps Ive been seeing, but that she wouldn't be surprised if I hit 100% before I head home! Can you even believe that?? I can't! To think that exactly two months ago I was hardly breathing at a sad 21% and today I am breathing at 88%!--incredible. You cant imagine the prayers Ive been sending up lately! I cant thank God enough for the amazing gift He and my donor have given to me. I have always believed in organ donation and the importance of it, but until I went through this transplant the full magnitude of it was lost on me. I have a completely new understanding of the incredibly LIFE CHANGING gift this is and the amazing sacrifice my donor and his family have made. Without his decision to be an organ donor I may not be here today, and I absolutely wouldn't be breathing NORMALLY if I was! If you get a chance, please send up a prayer for my donor and his family. Losing a member of your family is possibly the hardest thing any family can go through especially when the person is young, healthy and taken from you suddenly. Also, if you'd like more information about transplant and becoming an organ donor, please check out the donation and transplantation page of my blog!


PFT HISTORY -- look at those numbers! :)


Where were we? Oh yeah - test results! So as you can imagine I was thrilled with the PFT news! But as the recent past has dictated, that doesn't mean everything is perfect. I still haven't completely figured that one out, but oh well. My past few biopsies has showed mild rejection. We have made modifications to my meds and continued my pulmonary rehab. Its been about three weeks since my last bronch, and as I have mentioned, I have been incredibly anxious about the length of time between biopsies. I know that if things were getting worse there would be indicators - fever, congestion, fatigue, pain, etc. Luckily Ive had none of that, but honestly I never did, and still had rejection. So needless to say (as most of you know from previous posts) my anxiety level going into my follow up appointments is always through the roof, and learning about the rejection never helps. This week tho, I walked in anxious, but walked out of there on cloud 9! My doctor told me that not only was he thrilled with my PFTs, but that my X-rays were perfect and that my biopsy came back showing no infection and NO REJECTION! Finally!! As of now, my recovery is going PERFECTLY. We adjusted some of my meds, reducing the amounts of meds I am taking, which is always the goal. Of course we have to keep an eye on my blood work and the PFTs, X-rays and bronchs to make sure everything stays going well, but for now everything looks great! My only issue was that my magnesium levels were low again ( a combination of medication side effects and my difficulty with absorption due to my cystic fibrosis ). So the next day I had to head back over to Mayo for FOUR HOURS of IV magnesium to jump my levels back up before we increased my daily dosage. So for now, Im doin really well and just continuing with my weekly appointments and rehab, presumably just for another month before it'll be time to head home!

Speaking of rehab, I officially hit the two month mark post transplant this weekend (whooo hooo!), which means my weight lifting restrictions have been lifted and I am officially done with supervised rehab. Now I can finally lift more than ten dang pounds and I can do my rehab workouts at Mayo alone (you have no idea how great this is gonna be) and at my own pace (which, again, is going to be so much better) . Up until now the last few weeks have been very frustrating with so many limitations on what I can do and how fast I can go. I mean don't get me wrong, I understand the reasoning. Apparently studies have shown that by overdoing it at rehab, i.e. lifting too much weight too soon can cause wounds to open or the sutures within the lung to fail and the patient survival rate drops to only 50%! So thats def not something I want to happen so I have been going along with it, but I haven't been happy about it. This happened just in time, as my patience with the snails pace has been dwindling down to a dangerously low level.

Also last week, three fundraisers were held to help Chris and I with our ever increasing medical bills resulting from this transplant. Id like to say a huge thank you to everyone who attended the Premier Jewelry party and to jewelry consultant, Ashleigh Hinson, who donated 50% of her sales to us. If anyone would like more information about Premier Jewelry or to order some really fantastic jewelry give me a shout and Id be happy to pass along her information to you.


Premier Jewelry consultant Ashleigh Hinson, and the party hosts - my sister Jillian Stallings and her mother-in-law Donna Stallings.

Another fundraiser was actually an annual golf tournament in Albemarle NC, Chris and I's hometown. The Green Gopher Invitational is held by a number of young professionals in Albemarle every year. Each year the proceeds from the tournament go to locals who are in need of assistance and/or local charities. This year Chris and I were humbled to be one of the recipients of the GGI gift, along with the William M Hudson Memorial Scholarship Fund. We are so grateful to Ben Lisk and the other organizers of the GGI and the generosity of everyone who sponsored or participated this year. We hope everyone had an amazing time at the Friday night kick off party and during the tournament on Saturday!

The final fundraiser was a cornhole tournament held Saturday at the bowling alley in Albemarle. Ashley Huneycutt and Jennifer Coble worked hard to put that one on and I am again, so grateful. We have been shown so much love from our hometown of Albemarle and it continues to overwhelm us. Thanks to all who participated in this event as well. That was one I truly hated to miss! ( yall may not know this but Im kind of amazing at cornhole...just sayin )

Speaking of Friday, Chris and I had a visitor! Chris' father Wayne was in Jacksonville for just one day due to work obligations and we were able to spend some time with him. It was great because we don't get a chance to see his family much because of work schedules. His mother and older sister came to Jacksonville right after my transplant but Wayne wasn't able to join them, so it was great to have the opportunity to have him here! We picked him up and went to Waffle House, then we headed to the beach to relax for most of the afternoon. I sat under our canopy in my clothes and took a nap, while the Taylor men relaxed and enjoyed a little QT together! Let me tell you..those are some entertaining men haha :). After that we headed back to the apartment where we grilled out and relaxed in front of the TV. A pretty low key visit, but it was great to catch up with him and I was glad Chris got the chance to see his dad. And I think Wayne enjoyed his time at Jacksonville Beach so I think we've sold him on a return trip! :)


Chris and his father Wayne enjoyin some father/son time at Jacksonville Beach.


Cut to today. Another appointment at Mayo. I met with Dr Rosser today, the liver transplant doctor. Some of you may remember that at the beginning of this whole transplant journey I was being evaluated for both a lung transplant and possible liver transplant. Because of my cystic fibrosis, my liver has some mild scarring and blocked bile ducts resulting in less than stellar liver function. One of the main concerns with that was the possibility of liver failure immediately after such an intense surgery like a lung transplant, which would be deadly because they would not have been able to go in and transplant the liver afterwards. Partly because of time limitations, partly because it would be too traumatic of a surgery to do right after the first was completed. So the possibility was that I would need both lungs and liver at the same time. I went through the evaluation process and it turns out that currently my liver is not bad enough yet to transplant. So we went ahead with the lung transplant, but will continue to monitor the liver function closely and reevaluate as needed. So meeting with Dr Rosser today was about how we will continue to monitor the liver once I go home and what issues we are currently facing. Right now my liver enzyme levels are a little elevated. Im not having any symptoms of liver failure though so he's not really concerned. Apparently three medications I am on cause this rise in enzyme level and if adjusted early enough liver failure can be avoided. So he is going to discuss my medications with my transplant team. The good thing is he says is that my liver is "consistently off" so even though the numbers are elevated, they are fluctuating within a 20 point range and not rising. He is going to continue to monitor my blood tests and has scheduled a follow up MRI at my return appointment once I have been home for three months. Then we will follow up with MRIs and ultrasounds every 6 months for the first two years and then will probably drop to once a year if everything remains stable. So as it stands, everything liver wise is pretty much where it has been which is great news. Sometimes the trauma from a surgery like that and the follow up medications can cause serious problems so we are glad that the decision to hold off on the liver has proven to be the right choice for now! He gave me a laundry list of symptoms to look for which could indicate deteriorating liver function and instructions to come straight to the hospital if any appear. So prayers that my liver function would remain stable, or hey if your really feelin frisky, prayer for IMPROVED liver function - that would be even better!

So thats pretty much it for now. This week is pretty low key, just working out and some X-rays and follow up appointments later this week. Thank you all again for continuing on this journey with us. The continued support and love is so important to us and we are eternally grateful.

Much love...
Erin

10 years, amazing people...one lucky girl.

This past weekend was my ten year high school reunion. Ten years. When I think back of what my life was like, what I was like....I can hardly believe it. So much has changed. The usual things have changed for all of us - big moves, marriages, babies, jobs - but my life, well its been a little cray cray. Going from completely healthy and normal, to spiraling towards death quicker than I think any of us actually realized at the time, to getting a second chance at a normal life after this transplant...well its been quite the roller coaster. Unfortunately, since I am still going through rehab and recovery here in Jacksonville I wasn't able to attend the reunion, which seriously bummed me out. I don't think lots of people really look forward to reunions, but I truly loved the Albemarle High School class of 2002. We had some awesome memories from those years and I was able to experience it all with some seriously awesome people. I really hate I missed it. But, if I had to miss it for anything, I guess a double lung transplant is a good enough reason! And hey...hopefully this transplant will get me to our 20th reunion!




AHS Class of 2002 10 year reunion - only about 1/3 of the class, but some awesome people turned out. And thanks to my girls for bringin my picture so I could make an appearance in the photo! LOL!!


While thinkin about all I was missing out on this weekend, I started thinkin about all the incredible people in my life. Ones who have been in my life since I was a child, to the ones who have been more recent additions. I realized that even though things haven't exactly gone perfectly over the last ten years, I have gotten through it and have been showed grace and blessings from God more times than I can count. And those blessing start with the incredible support system I have developed over the years. From family, to friends, to medical professionals - I have acquired an amazing group of people around me that, without every one, I wouldn't be here blogging about how incredible my life has become right now.




Me the week before my transplant - skinny, weak, on oxygen almost 24hours a day, and in a lot of pain. Very sick. Couldn't hardly stay awake to eat.




Nearly 7 weeks post double lung transplant - lots of color in my face (no more sickly gray), no more oxygen, gaining weight (20lbs and counting!), more energy than Ive had in years! Feelin Awesome!


I decided that this post should be less about me and more about a few incredible people in my life. People who have gone above and beyond these last few months to show me and my family an incredible amount of love and support. Way more than I deserve I can tell you that. There are many more than just the few I'll mention here today but trust me - before this is all over you'll hear about them all! In order to express our gratitude to everyone, it will def take more than one post.

The first group are my amazing girlfriends from Albemarle. Ive know these girls since I was very young. We have pretty much grown up together and been through A LOT to say the least. Our lives have changed so much the last few years - moving away to different towns (and in my case states!), weddings, babies, deaths of loved ones (we have seriously experienced the entire dang circle of life together). We are all spread around so getting together isn't very easy and only happens every so often. So you can imagine my surprise when I walked down to the lobby of our hotel the night I was discharged from the hospital after my transplant to see the sweet, beautiful faces of my best friends in the world - Janna Brown, Lisa Wray, Katie Adams, Adrienne Averette, and Sallie Spencer (we were minus one that night until later when Brittani Edwards arrived to further surprise me the next day!). I quickly dissolved into tears, something not very characteristic of me, and remained in complete shock for the rest of the night. Their presence right after the most life changing and stressful and amazing surgery of my life was EXACTLY what I needed. They will never, ever know what it meant to me that they had road tripped it down to see me, at the time not even knowing that I was out of the hospital yet. Ive loved these girls practically my entire life, but at that moment I honestly had never loved them more. And to keep the surprises coming, they had ordered these awesome bracelets and were all wearing one when they arrived. The bracelet they gave me is one of my favorite things in the world and I wear it EVERY DAY. It seriously hasn't left my wrist since I put it on that night. The bracelets are silver with the words Hope - Love - Breathe engraved on the outside and my initials engraved on the inside. They had actually ordered them from someone who was selling them to raise money for a family friend whos child has cystic fibrosis as well. So it not only meant as a symbol of support and love for me and what I was going through, it also helped another child with CF and that is so awesome. Did I mention that I love these girls? I do. A lot! We were able to spend most of the rest of the weekend together which was so much fun (albeit exhausting). It was the best possible to spend my first weekend post transplant and out of the hospital. I will never ever forget that time.




The awesome bracelets my sweet girls had made to show their support for me. I absolutely LOVE them - both the bracelets AND my girls LOL!





Dinner at Taverna in the San Marco district in downtown Jacksonville...super yummy and fantastic company! Couldn't have been a better day!


Another group of people I want to say a special thank you to is a group I am not going to name names specifically. Im not sure if that would make them uncomfortable or not, so to these people - and you know who you are - please forgive me for not naming names. These wonderful people have sent cards, gifts, gift cards, and financial donations to us in the last few months and we cannot begin to tell you how incredibly thankful we are to have each and every one of you in our lives. The contributions and kindness you have shown us has made these past two months so much easier to get through. Almost daily, a card or letter shows up in my mailbox with such incredible words of love and encouragement. I have saved each and every one of them and will keep them forever. They have carried all of us through this and we covet the love and prayers that have so generously been bestowed on us. Please know that we will never forget your generosity and we keep you all in our heart and prayers daily. You'll be hearing from me directly soon enough, but I wanted to be sure you all knew what an impact your support has made in our lives.

Also, right now are a few groups of people who are organizing fundraisers on our behalf. I am going to be honest, this actually makes me slightly uncomfortable. Having so many people coming out to support us - while absolutely amazing and overwhelming - is still embarrassing for me. I just keep wishing that it wasn't something that was necessary. But at the same time I am SO unbelievably humbled and grateful to everyone who is organizing and participating in each. We will never ever be able to express our overwhelming amazement at the generosity of so many. It is absolutely amazing the hearts of people. God continues to bless us, through all of you, and it is my fervent prayer that the blessings you all have given to us are returned to you in a huge way.

Thanks for indulging me a little tonight. I have tons more people to thank, but I want to make sure I can do it right and by trying to fit too many in on one post seems like it would get watered down a little. And the thanks we have for all of you is NOT something that should be watered down. Annnnd Ive got another day full of blood work, PFTS, xrays, and the ever exciting bronchoscopy tomorrow. I hafta be up and at em and a terribly ungodly hour, so its time for me to get some much needed sleep. My sleep patterns are still very crazy, so please send up a few prayers for them to regulate a little more, and of course, for positive results from the bronch tomorrow. I haven't had one in three weeks, and I am super nervous about what they will show. Ive been feeling great, and the fact that they feel Im doing good enough to move them from once a week to once every three weeks is a good sign, but still....going that long makes me super anxious. I feel a shaky, sweaty Erin comin on as I wait for my results LOL! So fingers, eyes, toes and anything else that be crossed for luck - please! I'll post more hopefully tomorrow, depending on how I'm feelin post bronch. You never really can tell. Last time I was OUT for like 6 hours. Time before that it was only an hour. So, we'll be playin this one by ear! So till then, I hope all is well for everyone! Nite all! :)




My good friend THE BRONCH...ahh we shall meet again soon my friend....


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