Poster child of Lung transplant

Well folks, you're officially reading the blog of a 4 month post transplant patient. One who was referred to as "the poster child for lung transplant" (I tried not to be offended by the "child" part lol) by her Mayo docs yesterday. Went to mayo and they are super happy with my progress, which makes me super happy! They let me finally get a FLU SHOT which I was sorta freakin out about. They wouldn't let me get one at first because of the possible complications of introducing a virus into my newly suppressed immune system. But, since I am doing so well, they went ahead and allowed me to get one. So, THANK THE LORD for that! I was freakin about about rollin into flu season with new lungs, no immune system and sick people everywhere. But atleast I'm protected from the flu, and my pneumonia shot is still good (got it last year - lasts 5 years) so hopefully I'll avoid anything super cray cray. Oh, and lung function is the highest it's been, so in the words of my beloved Phil Robertson, I'm "happy, happy, happy."

Speaking of Mr. Robertson - does anyone out there LOVE Duck Dynasty the way I do? These people -- well, lets just say, these are my people. They have beards, they are funny and they kill birds. What's not to love?? And I promise, Ol Si is my Chris in 30 years. It's crazy the similarities between them. I'm serious, it's like looking into the future watch that crazy ol coot. You heard it here first people.

Not the greatest pic in the world, but there it is - my SIGNED poster :) Thanks to the great Boyce Adams - husband to my best friend Katie - for snaggin this for me. Prolly can't make it out, but its signed by Phil and says "Erin, Take a deep breath Rom 1:16 - Phil Robertson" Gotta love it :)


Been back to work for a little over a week and I am really enjoying getting back to "normal" - if that's what you can call it. Not sure if this can be considered normal - it waaaaay exceeds any normal I'm used to! Planning on heading back to school in the Spring, so ill be workin on that the next few weeks. I'm pretty excited, but - well lets be honest. My first attempt at college didn't exactly go as planned, so fingers crossed this one turns out better than the last.


Well, guess that's about it for now. Nothin super exciting happening right now. Sorta seems like this blog as served its purpose. Not sure where I'm gonna go from here with this thing, but I'm either gonna hafta stop writing or I'm gonna hafta start coming up with stuff more interesting than my day to day activities lol.

So, hope everyone is having a great and are gearin up for a great holiday season. I'll be heading up to North Carolina the weekend before Christmas and I CANNOT WAIT! The countdown begins - 22 days!

Have a good one everybody...



Much love...



Erin

Thankful - doesn't even describe it

Happy Thanksgiving!!




Gotta love google right? :)

Chris and I just got home from celebrating with friends and family all day. I hafta say, this has been the best turkey day in YEARS. For the last few years, I have spent more thanksgivings sick and in the hospital that I have OUT of the hospital. And those I was out - I was still feelin like crap. This year -- total 180. We did the whole eat thing (and I'm fairly certain I ate at least HALF my weight in food - which is more impressive than it might sound considering the fact that I had to JUMP into my jeans today). I had fun, energy and even walked with my cousins, soon-to-be cousin-in-law, and a friend down to the intercostal waterway (annnnd a flooded field my cousin tried to present as the intercostal - we're smarter than you think Amy lol).

After our foot tour we left for a visit to a friend's house. God bless Italians. I'm not generally much for Yanks, but every so often you meet some northern Yanks or Pollocks and you just fall in love...(and I mean that sincerely, I'm not makin fun!)












To say that I'm thankful for the major change in my life would be absolutely INSULTING. The way this whole transplant thing is goin, I'm not sure I'll ever be more thankful to God for anything more. If there is something bigger ahead - well, I just can't see it. But then again I honestly didn't see makin it TO transplant, much less THROUGH it. So I guess anything is possible.

More than my life, I'm thankful for the people in my life. This entire journey would not have been the same without the incredible people who have stuck by me. My husband-who stuck by me at my absolute worst and who has driven me to the hospital more times than I can count in the wee hours of the morning. Who never left my side before or after surgery, and who has been better to me and for me than anyone I've ever known.

My parents - who traveled back and forth over and over, took a ton of time off from their jobs to make sure I was taken care of. My sisters who left their families at home to be with me during and after surgery, and who kept the pictures, phone calls and videos of them and my nieces comin when I was able to see them. Nothin can put a smile on my face quicker than those girls. Their husbands, my brothers, who have supported me and my sisters while I was in recovery and took care of the girls while their moms were with me.

The rest of my family - grandparents, aunts, uncles and cousins and in-laws who made sure we had what we needed and kept my husband fed while I was in the hospital.

My sweet sweet friends. All the beautiful women who I love so much. Whose love and support I couldn't have done this without. To so many amazing people back in Stanly County - they leave me at a loss for words. All the calls and cards and fundraisers for us has kept me in constant tears. Seriously I don't think I have cried as much in my entire life!! I def do not feel worthy of all the support, donations and most importantly prayers. You all have literally saved me. Without y'all I probably wouldn't not be where I am now.

My amazing doctors. Dr Layish here in Orlando has worked his butt off to keep me alive the last few years. And let me tell you - I made him work for his money!! :) He is one of the greatest doctors I've even known, and I am eternally grateful for all he has done for me and for his Mayo recommendation. He will always be a very special person in my life. My Mayo team - Drs. Keller, Mallea, Alvarez, and Erasmus. Truly some of the smartest men in the world and have saved my life. They took such incredible care of me. I'll never been able to repay them for giving me my life back.

My donor and his family. The 30 year old man from Miami who made the decision to donate his organs when he died. Who saved my life and gave me a life worth living. I wonder if he could even comprehend what he would be able to do for someone when he passed. I spent so much time at the beginning completely terrified of whether these lungs would "take." I don't worry about that anymore. Whether I get one year with these lungs or ten, I will always be thankful and grateful for the chance to live this way, even if its for a moment. I'm thankful for his family, that they decided to honor his decision instead of contesting it. I'm grateful for the life of their son, and their influence in it. His lungs were perfect. Whatever he did in life - he did good. I just hope that he's in heaven now, sitting next to Jesus thinkin, "That's awesome. That's why I did this." I also hope he knows how grateful I am, how I carry him, whoever he is, with me everyday, and that I will never take his life for granted.

Most importantly, I'm thankful for my God. For whatever reason, he put me here for something. I've been told so many time how inspiring my story is, what a miracle this all is, and how so many have seen Jesus' hand in all this. I don't know how or why - but I'm startin to agree. Like I said, don't know why it needed to be me, but Im ok with it. He's given me this opportunity. To some how make a difference somewhere, so I hope this wasn't my entire purpose, to go through this. But if it is...I'm ok with that. He's delivered me from the hell I was living in. And for that, I am eternally grateful.

I hope you all have had an incredible thanksgiving. You all have meant so much to me through this. I will be forever indebted to you all.


Much love...xoxo
Erin

I'm Outta Here!!....kind of

Good news people!

Yesterday, as many of you know, was my full work up day at Mayo. Blood work, xray, PFT and bronch. Blood work and Xray were great as usual. My Prograf (immunosuppressant med) levels were a little high, so we lowered that a bit but otherwise everything was good. Xray looked the same as it did from a month ago, which is super. All that is great, but sorta the more boring of the results. Bronch results came back and, again, no infection and no rejection!! Whoo hoo! Thanks for all the continued prayers for that - they are def workin!

Now for the coolest results -- my PFTs. As you know, they have been steadily climbing each week. Last time I did a PFT, my FEV1 (the score that gives you the best idea of your lung function) was up to 88%, and my Dr said they wouldn't be surprised if I hit 100% before I left. Well, my FEV1 was NOT 100% -- it was 103%!!!!

Yep, you read that right -- 103%. I am officially breathing better than I ever had in my ENTIRE LIFE. Heck, Im prolly breathin better than some of you! LOL!! Sorry, don't mean to be ugly, but this is so stinkin incredible I sorta wanna gloat for a minute, haha! So... who wants to race?? :)

Went back over today to go over all my results with Dr Mallea as usual. And the best part of the last two days was during this meeting. I was given the OFFICIAL OK to head home!!! I won't be able to leave just yet though, not for another almost two weeks. I have a few more appointments next week (luckily nothing that should keep me from leaving) that I have to go to, but as soon as those are over we can start packin up! Unfortunately we only brought the bare minimum here to Jax so we really can't start packin up till we're right about to leave. But since we only brought a few things, hopefully it won't take long (and it won't cause me to down a bottle of Xanax that day LOL). So as of right now, we don't have an EXACT move out date. Probably lookin like sometime during the middle of the week of Nov 5 (at the earliest). They might be adding one more appointment with my infectious disease Dr but Im not sure when that's gonna be. It might end up holding me up just a bit longer. Mom will be coming back to Orlando for a while to help me get settled and unpacked and to help me with gettin to a few appointments when I get home. Hopefully it won't take any more than a week or so once we get back to Orlando, and she can FINALLY get back home to NC for good!

Another great thing about having the "go ahead" -- I can finally drive again! I haven't driven in close to 4 months (remember, I was in the hospital for about two weeks right before my transplant, so its been even longer than just this surgery/recovery). Im gonna need to practice in the parkin lot or somethin before gettin back on the road LOL! Mom says she'll let me drive sometime tomorrow. Just be glad yall don't live here in Jax - this could get interesting!

Can you believe this? This entire thing is almost over. I can't believe that not even four months have gone by since I was evaluated, listed, transplanted - and now Im almost going home. This has been such a whirlwind it still doesn't seem totally real. I don't think it will be completely real until I get back home and get back to work and school (yup, going back to school in the Spring! That's a whole other thing for yall to pray for, lol!!) I honestly thought this entire process was gonna be much longer. The wait list part I was SURE was gonna be MONTHS, not TEN DAYS! That still blows me a way. The fact that (unless crap hits the fan) I'll be able to be HOME for Thanksgiving (something that hasn't been possible for the last two Thanksgivings --been in the hospital with infections previously)!! Same thing for Christmas. I haven't been in the hospital for Christmas yet, but I was sick the last time - on IV meds - and had just gotten out of the hospital the year before so I was still feelin like crap. I'm actually gonna be able to ENJOY the holidays this year! CRAZY -- and so awesome!! :)

So all in all a great morning. Except for the GI testing I did this morning. Ughhhhh. Terrible. First test was to make sure the muscles in my throat were acting normally and things weren't getting "caught up" and not going down properly. Which honestly I thought was kinda stupid. I mean if I was having problems swallowing I THINK I would have found that out by now. I don't think I would have put on TWENTY FIVE POUNDS in three months if I wasn't gettin things down. I would think that would be something they would do right after surgery if anything. (When you get intubated the tube they insert can make complications to your throat and vocal chords, so I guess thats the point of that one) They inserted this HUGE tube up my nose and down my throat which was AWFUL and then kept messin with it tryin to get it in just the right place. I swear that thing was in for like 20 minutes and it HURT. And since they were testing my swallowing there was NO sedation and no numbing to make it even remotely pleasant. I sat there visibly shaking, hurting, and gagging for what felt like for-freakin-ever. The other test I am STILL doin. Its just as awful. They took out the large tube and entered a much smaller one (one good thing). Its attached to a monitor that is recording the PH levels in my gut. Basically testing to make sure the meds I'm taking are controlling my acid reflux. The LAST thing you want to happen with transplanted lungs is something coming back up and get into my new lungs. It could cause lots of problems, mainly infection. I have to keep this wretched tube in my dang face until tomorrow morning. I hafta say, its very uncomfortable and is DRIVING ME BONKERS. It makes it hard to eat and every time I swallow it tugs like crazy. Every time I lay down I hafta hit this button, when I sit back up I gotta hit another button. When I start eating I gotta hit a button, when I'm done I gotta hit ANOTHER button. When I cough I gotta hit a button, if I have any reflux, another button, when I take meds, another button....its absolutely OBSURD. Im 30 seconds away from ripping this crap right outta my face. *sigh*....I just gotta make till 7am...just 7am. Pray for me people, I might go completely outta my head before then. I hafta keep tellin myself Ive been through worse. But quite honestly Id sign up for another transplant just to get this dang thing outta my nose lol.



Pretty nice huh? Needless to say, we came straight home after Mayo. And it was a drive-thru situation for dinner. And now I've posted this mess on my blog, so I guess all that was for nothin, LOL.

So that's where I'm at. Uncomfortable, irritated, and completely thrilled! Hello Dr. Jekyll/Mr. Hyde! Thanks, as always, for all the prayers and support through these last few months. Its becuase of yall that this has been such an incredible journey for me and my family. I hope by following along these last few months God's grace and power has been a big of a blessing to you as it has been to us. Prayers work people! And GOD IS GOOOOOOD! :)

Much love...xoxoxo

Erin

Well, where to start...

Ok, I admit. I've been slightly MIA from blog-land. Sorry to those who care!

The past week and a half or so has been a pretty good one overall. Lots of tests, results, etc. While I'm sure you'd rather hear more interesting news, but in the interest of a complete and thorough report, I'll start with the boring stuff.

Last weeks tests and results:

Went in last Tuesday for the last WEEKLY blood draw, chest xray, PFT and bronch. Ill still be doing the blood work and xray each week, but the PFTs and bronch will be cut back to once every two-three weeks, which I guess is a good sign. Of course they can (and will) schedule whatever they think is necessary based on how Im feeling, xrays, etc. But for now, Im gettin a little break. Won't be havin another PFT/bronch day until next week...nice :)

Anyway. As usual, they were pleased with the initial results they had - chest xray looked the best yet, bronch was great, altho they did clear away a few mucus plugs from my lower lobes. That is normal, and one of the reasons for the bronchs. Once they removed my old lungs and put in the new ones, for some reason the "cough reflex" was lost. Happens to all lung transplants. So right now its very difficult for me to cough. You would think that someone whose been hackin herself to death for 28 years would know how to cough, even with new lungs...but apparently no. My cough now is this forced, barking thing and its very strange. I have to allow myself time to heal more and teach myself how to cough again...how bizarre. A CF patient who doesn't know how to cough. Never thought Id see the day....

So in order to keep me clear, since I cant do it myself, they cleaned out a little crap (thankfully not much and even better -- no INFECTION STILL!!!), and took the usual biopsies to check for rejection.

Cut to the next day - back in for the results. Dr Alvarez (my favorite - he's such a cute little man and super funny...even though I don't think he means to be...but he sure does amuse me), let me know he was thrilled with the Xray, but apparently my biopsy is showing A2 mild rejection again. He also said he was very confused as to why its showing that. I was curious until he told me that nothing else looks like rejection - my blood results looked great, stats are great, and xray is perfect. And the fact that my PFTs were up 14% from the week before (77% baby! Haven't had those numbers since HIGH SCHOOL) that it didn't make sense. He said they've only seen that a few times, so they weren't really sure what to make of it. So he said the doctors were gonna look at the pathology slides at their weekly meeting to double check. He told me that my PFT numbers were some of the BEST they have ever seen at this point in recovery!! Which is awesome, but also terrifies me to death. (The whole bigger they are harder they fall mentality?) Anywho...so basically he modified one of my meds, but thats really it. He said that the biopsies are just a snap shot of what the tissue is like at one moment. It could be a matter of some white blood cells that get "lost" for a moment and that we just happened to look at that very moment. (He actually went into this long explanation about a BMW in a bad neighborhood, and if u were to see it you might think it was a good neighborhood cause you saw the BMW, but really its the only one in the neighborhood cause the driver got lost for for a minute...yeah I know. Like I said...goofy little man, but it made sense, I guess lol) And since everything else looks SO good, he's happy with where I am, but to keep them (as always) updates on ANY changes. So all in all, I guess a pretty good report. If they're happy, Im (for the most part) happy.

So now to the more exciting stuff -- last Friday, August 31st, marked ONE MONTH POST TRANSPLANT!! How crazy is that?? Chris and I enjoyed our first weekend alone since pre-transplant when my mom headed over to Tampa to be with my sister Kellyn during her back surgery. By the way, thanks for all the love and prayers for her last week! Shes still pretty sore, but doing good. Hopefully this surgery will relieve a of her pain from a car accident she was in about two years ago. Shes been fightin a LOT of back and neck pain for a while now, and Im just happy she's finally getting some relief. She still has a LOT of neck pain, but that will require surgery on more disks ...so please keep her in your prayers for recovery, pain relief, and whenever she has her other surgery, that it goes smoothly. I know she'll be glad when all this is over!

Chris and I spent Friday workin out/walkin, and had a nice afternoon poolside ( me not in the water and under a canopy since I can't really be in the sun now - :/ - but still nice and relaxing). It was pretty nice and NORMAL! Saturday was restin and football alllll day, a little more poolside, then we grilled out with my cousin. I almost forgot I was in recovery! Of course until Sunday, Monday and yesterday when my muscles have been aching non stop and I have been super tired! I keep forgetting that my body is still healing from MAJOR surgery and I think I have a tendency to overdo it. Its hard not to when, even though you hurt still in your chest and back, you feel better than you have in over a DECADE. Oh well...still gonna keep pushin myself. No pain no gain and whatnot...

Dad came down Sunday and left super early this morning ( :( ). We had a good time just hanging around for the most part, and he and mom had a chance to just have an afternoon just the two of them which I know they enjoyed. Its been over a month since they have been able to hang out together without a group! I think mom is plannin on heading back to Albemarle just for the weekend this weekend which I am happy about. I know she needs a break and to just be home for a while. And she misses those sweet grandbabies of her's in Albemarle! She got to see Mabree last weekend, so Im sure her Mylee/Shelby withdraws are getting pretty bad!

Well that's really about it for now. Told you - nothing super exciting this week, which honestly Im kinda happy about. Its nice for things to be low-key after all the drama and chaos of the past month! Im really hoping this lasts!

Oh and one more thing! I wanted to say a HUGE thank you to everyone who has sent cards, donations, giftcards, and gifts to us the last month! You have no idea how grateful we are to have such awesome people in our lives. The financial contributions have helped SO MUCH. Money is still super tight for us, but the help so many have given has kept our stress levels almost tolerable! LOL! I know there are a few fundraisers in the works for us and for those of you organizing and those participating -- THANK YOU, THANK YOU, THANK YOU! It means so much to us. I just hope that we will be able to return the favor sooner rather than later. We have some of the most amazing people in our lives and we are beyond blessed.



Much love...


Erin

Gotta love when a plan comes together!

Have I mentioned how much I LOVE my transplant team here at Mayo Clinic? Cause I do. These people are brilliant. Every person here at Mayo is amazing. I have never had such an incredible experience at any hospital Ive ever been at. I can't say Im surprised though...I mean its Mayo. If you ever find yourself in need of a specialist for anything, please consider this amazing medical center. Ever person, from housekeepers, to nurses, to the physicians runnin the show have the most incredible compassion, drive, and professionalism. They truly are the epitome of what customer service and health care should be. To be cared for in the way I have been...I'd pay more. Lots more.

Last week I posted about my biopsy results coming back showing mild rejection. As you may remember, its something expected, something most transplant patients experience the first month after transplant, but still...not anything fun, and def not what you want to hear. My team at Mayo worked so quickly to make the necessary adjustments to my medications, that
I had not even had the opportunity to experience what it would feel like to be in rejection. This past week has been nerve-wracking for me as I went through my routines, hoping that the treatment they prescribed was doing what it needed to to fix the rejection. Praying hard that if nothing else, it wasn't getting worse.

Wednesday was a typical appointment at Mayo - blood work first thing in the morning, followed by a chest xray, pulmonary function tests and a bronchoscopy and biopsy. The standard stuff. But this one was one that was particularly stressful for me cause it would give my doctors and I a look at how the rejection was doing, as well as if I was still clean infection wise. Luckily, as the appointments went on and my chest xray came back looking fantastic and my pulmonary function tests we up 10% from the week before, I began to feel certain that the rejection must at LEAST be staying the same, and not getting worse. While I was having my bronch, they decided I needed IV magnesium, so my appointment turned out to be two hours longer than usual as that completed infusing. Apparently the low magnesium was the only "issue" that needed to addressed! But, of course, I still had no idea the status of the rejection and wouldn't until the next day. I left that afternoon -- all my staples FINALLY moved by the way! (yay for a fast healing incision!) -- feeling better, but still on edge. I had nearly the exact same initial report when I had left the week prior, only to be told I was in mild rejection not 24hours later.




Yesterday's X-ray - see all the black? That's air people! And lots of it!


Cut to Thursday, midday. I was back at Mayo, waiting on my Doctor to give me the word. Not a few minutes after I FIRST walked in the exam room, my anxiety level went through the roof. Moments later, my hearts racin and I am all but dripping with sweat. I could feel myself completely shutting down if that doctor didn't get in there NOW and give me some kinda news. Any news at this point. Luckily he didn't keep me waiting long, and boy he didn't disappoint with the news! Of the 5 samples they took during the biopsy, all but ONE was completely normal!!! I have officially moved from A2 rejection to barely A1 in 9 days! He told me that it usually takes about 3 weeks for it to correct itself so they were THRILLED with how quickly and completely I was responding to treatment. Thank you GOD! You have no, no, NO idea the complete RELIEF I felt in that second! Not that I can't return to A2, or even higher, rejection by this time next week -- but for now, all systems are GO! Oh, and still NO infection at all. :)

This "dance" with rejection and infection, unfortunately, has just begun. That is seriously the toughest part of this transplant business. I mean the surgery and the recovery is brutal...but the mind war this other STUFF is waging on me is enough to make me completely crazy. I can't believe how stressful this all is. I just have to keep prayin and tellin myself that this is where I need to be, where I am supposed to be, and that all this came my way the way it has for a reason. I usually have no problem talkin myself into anything. But man...this is not easy people. I'm gonna hafta work on my sales pitch or Im gonna find myself shufflin down the road in a bathrobe and slippers mutterin things to myself while a group of professionals in a white van with a straight jaket close in quickly behind me...

Pray for me people. Seriously. I need all I can get.

On a lighter note, I started cardio pulmonary rehab today. Talk about wearin a person out. Ive been feelin so good lately I had forgotten how COMPLETELY OUT OF SHAPE I am. Didn't take long for me to get alllll caught up with that though! Did some cardio on the treadmill, which truly wasn't bad at all. But then came the weight lifting. Ever tried to lift weights with no muscle? Not easy. In fact, pretty embarrassing. I think I was able to lift more when I was in the 5th grade. And the fact that the 70 year old woman next to me at the weights was doubling anything I even tried didn't help my feeling of complete and utter humiliation. Ugh...here's hopin this doesn't last long. Its not good for my ego! :)




Leavin Mayo...future's so bright, gotta wear shades!


But Im excited. As whooped as I was after ( took me about a 2.5 hour nap when I got home ), I still felt fantastic. It has been sooooo long since I could work out in ANY CAPACITY without it turning into a complete nightmare. As pathetic as my performance was, I am so happy I was able to just get through it. That in itself is HUGE. God is good...everyday. Have you noticed that? :)

So, its finally the weekend. Oh, and Dad came down yesterday! So Im excited to spend some time this weekend with both my parents and Chris...and its lookin like tomorrow is gonna be a great day weather wise, so I am hopin to maybe hit up a flea market or somethin. I'm still lookin for some inspiration for a "recovery project," so maybe I'll get somethin goin tomorrow.

Thanks as usual to all for the continued love and support. It never goes unnoticed or unappreciated! Your thoughts and prayers are keepin us truckin down here. Please, keep them comin!


Much love



Erin

Have you ever been at a complete loss for words?

Yeah, well, not me. Not today atleast.

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

 

 

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

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

 

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

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

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

 

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

 

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

 

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

 

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

 

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

 

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

 

Much love to all...

Erin

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

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

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

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

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

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

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

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

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

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

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

She is awesome.

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

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

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

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

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

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

I JUST GOT THE CALL!

Holy crap people this is not a drill!

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


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


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




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


Thank you...I love you all.




XOXOXO


ERIN

Well, it's official...

I just recieved a phone call from Kelly Norman, my lung transplant coordinator at Mayo Clinic, and its OFFICIAL:

I am actively listed for a double lung transplant.

I am at a loss for words right now. I cannot believe how much my world has turned upside down in 24 hours. I went from not knowing exactly what my plan was, to on the active list for lungs in the blink of an eye. So many emotions are running through me right now its hard to explain. Im so happy, scared to death, sorta sad, but filled with hope. For the first time in a long time, I feel like I have a real shot at a normal life again. That I can travel, play sports again, and just enjoy doing the things I love without them completely draining me. I don't know what Im gonna do with myself when I have all this free time to myself that's usually filled with breathing treatments and stopping to cough or catch my breath.

I thought thatd it'd just be nothing special when I got the word. I have known I was going to be the whole time. But now everything seems so real. And to make things even more real, Kelly informed me that I am number 4 on the list for my blood type. FOUR people. And to make it even more real - the three in front of me are all under 5 foot 6 inches tall. Which means I am in a different height group than they are which means I am even closer to the top of the list.

Confused yet?

Here's the deal. When you get listed for transplant many things go into consideration when determining your place on the list. Mainly blood type, diease severity, height, weight and a few other criteria. Since the lungs must have the same blood type and must be generally the same size, a person of my blood type (A+) and my height (5'10) would not be able to take donor lungs from someone with type B blood and who was only 5'5, and vice versa.

So as it sits right now, I am technically number four on the list, but could possibly be called before the other three if the lungs from a donor are closer to my size than the other three. So, according to Kelly, I should "be ready" at any time. I was told at the start of this that there have been peole who have been listed and waited 6 months for lungs, but there have been people listed on a Thursday and gotten new lungs on Saturday. I heard that, but you know the old saying "in one ear out the other..." Yup, that was me.

Holy crap.

Can you see now why I am in such shock? I honestly thought that when I got listed I'd be further down the list and would have a few months to wrap my head around all this. Get myself ready for the move to Jax, get my financial situation in place, etc. I mean I def could still hafta wait for months, but the possibility that it could only be a few weeks, maybe even a few days?? Holy crap.

Well I think thats all I can say for now. Im still processing all this, but just wanted to make sure everyone is caught up. So, now, when you see a blog or Facebook post with just the words, "I (or she/Erin) got the call!!" you'll know what it means...that we are high tailing it to Jaxsonville and I may very well be breathing with new lungs within just a few hours.

Whew...what a day! God is good people...so, so good.

Much love...Erin

Mayo Visit - Monday June 16

Yesterday (Monday) was another Mayo visit. As I mentioned in my previous post, it was hopefully the final procedure I have to do in order for the liver transplant team to make a decision as to whether or not I am a candidate for a liver transplant along with my double lung transplant.

My day started around 10:30am for admissions and pre-procedure work up. This consisted of the usual changing into a hospital gown, going over medical history and the dreaded IV access. This procedure was one I have been dreading, mainly because I had had a similar procedure during my initial eval and to say it was terrible would be kind. Luckily, this procedure went WAY more smoothly than the last. The staff at Mayo is so awesome and they took great care of me. They had me so out of it I didn't even mind when they went in to access the jugular vein and were unable to access it because of my crappy veins and had to start over on the other side of my neck. This of course is a more difficult way to gain access but like I said - my nurse kept the juice flowing and I stayed happy.

The procedure itself was done up in intravenous radiology so that also helped. They weren't just shovin probes into my vein blind. This procedure is (usually) done by accessing the jugular vein in my neck and inserting a stent so they can access the vein with a probe. They inserted a probe into the vein and attempted to access the liver from there. When that was unsuccessful they started over on the other side of my neck. They were able to get into a good vein and send a probe down into the area of the liver and take blood pressure readings. After that they removed the probe and inserted a different one that takes small pieces of liver tissue. They took about 4 samples that are being sent to pathology. I should hopefully have the results of that later this week, although I won't get the final word on the liver decision for a few weeks. Right now I am back at home resting and nursing a VERY sore neck. I'm trying to take as few pain meds as possible so right now I'm holding an ice pack to it. I have a feeling I'll be caving in and takin a dilaudid very soon.

So. As it stands right now, I THINK things are looking good liver wise. A previous procedure done a few weeks ago resulted with a MELD score (model for end stade liver disease) of 7. A MELD score is a numerical scale that determines a patients need for a liver transplant. Less ill is less than 6, gravely ill is 40. However, do to the nature of cystic fibrosis, other things need to be considered for my case, thus the latest liver biopsy and blood pressure tests. The higher the pressure the more likely the need for a transplant. The doctor that performed the procedure said that my number was a 6. Normal range is between 0-5, so mine is just slightly abnormal, but on the low end of abnormal. So hopefully that will be a good result, not a bad one! Again, I won't know the results of the liver biopsy until later this week.

Based on MY understanding of the procedures I've had done and the results of each, I think I'm gonna be able to skip the liver transplant - for now. BUT, again those are just my thoughts, and is no way the official word on this. There could end up being things that I am not aware of that factor into this that may affect their decision. And just because I don't hafta get one now won't mean I won't need one later. Regardless, I still have liver disease and if it continues to get worse, chances are I WILL need a liver transplant at some point, even if its not now. So, we're still waiting for the final word. It will probably be a few weeks before we get a decision one way or the other. More waiting - as usual!

I wanna take this time to send out HUGE thank yous to all of you who have been keeping up with me, Chris and my family through this. The prayers and love that have been sent our way have meant so much to all of us and are truly carrying us through this process. Please keep us all in your prayers as we wait for the word on liver transplant. If they decide I need both liver and lungs, many more tough decisions will hafta be made.

For now though, its time for some pain meds and some TV. Much love to all...Erin

Here we go...

Well here it is. My blog - Welcome and bear with me as I get better at this. Hopefully it will turn into something worth reading sooner than later.

So.

As many of you already know, I'm currently in the process of being evaluated for a double-lung transplant and possible liver transplant. I'm being evaluated at the Mayo Clinic in Jacksonville, FL and so far I'm glad with my choice. The staff at Mayo have been excellent so far. They have put me through the ringer test wise, but they honestly have some of the most capable, and genuinely helpful people on staff I have ever met. Being able to finally leave a hospital after two weeks of tests and procedures withOUT looking like a junkie with track marks after all the need sticks and subsequent blown veins has been a nice change of pace. Don't get me wrong, I love most of my staffers over at Winter Park Memorial Hospital where I am normally admitted, but they can't hold a flame to Mayo. Sorry, but its true.

My CF specialist Dr. Daniel Layish here in Orlando was the one who recommended me to Mayo. I can't thank him enough for that. I haven't even finished the complete eval yet, but I am confident with where I am. Dr. Layish has been one of the best doctors I have ever had. He's kept me goin the last four years and I trust him completely. If he had told me to go to the backwoods of Tennessee and have a transplant done by an old hillbilly with a rusty knife and a bottle of moonshine, I'd have been on the first plane outta here. Well...maybe not. But seriously, his opinion means the world to me and I am so thankful he's been my doctor since I moved to Florida.

The initial evaluation process was two weeks long. Most of you followed me and my mother via Facebook during that time so you have a pretty good idea of what went on. Lots of tests, CTs, MRIs, ultrasounds, biopsies, blood work and procedures. NOT my idea of a good time, but necessary for the lung transplant team to, in their words, "find out everything that's wrong" with me. When I was first told that, I - ever the one to make inappropriate or off the wall comments no matter the occasion - asked the doctor if he was sure he wanted to do that. That he could be opening a Pandora's box of complete madness. What was his response? Nothing. Absolutely nothing but a look that said he wasn't sure if I was stupid or crazy and that maybe the psych eval should be the first thing on the list of procedures to complete. Regardless of what he was thinking, I passed the psych eval. How? I'm still asking myself that.

I've had to return twice since that two week stint, and still have (hopefully) just one more visit to do one final test. This process has drug on longer than I had originally hoped when I opted to come in and get all my tests done at once rather than space them out over weeks and months, doing one or two at a time. My thoughts were I'd come in, do my tests and by the next week I'd know one way or the other if I was ready to be listed for lungs or not. I've never misjudged something so bad in my life. I was hit with multiple setbacks almost immediately. Gallstones, calicifications in my right breast which would need to be biopsied to check for cancer, diagnosed with polycystic ovary syndrome and the biggest setback - a possible need for a liver transplant as well. The gallstones are currently being managed by prescription pain medication because they don't want to risk any more possible damage to my lungs by putting me under the type of sedation required to remove the gallbladder. We did the biopsy while I was there those initial two weeks and the results (thankfully) came back benign. The polycystic ovary syndrome isn't really something that would affect me transplant wise, but since the normal treatment for it is oral birth control, and oral bc can cause blood clots in the lungs (def something I DON'T want) I am being referred to an endocrinologist to determine the best course of treatment. The only real hold up now is this liver business.

As it stands right now, I have officially been accepted as a potential lung transplant reciepient. Got my official letter from Mayo a few days ago. However, my being listed for lungs is being held off until we complete liver testing to determine if I would need a liver as well. Monday is a majorly unpleasant procedure day to determine the blood pressure across the liver. Once that is done, they will be making a decision about how I am to be listed.

There are benefits and drawbacks to being listed as a double lung + liver transplant recipient. One of the positives is there are generally few people on that list, so the wait time can potentially be shorter. As in Mayo's case, I would be the only person on the list so I would be number one. Which means if that happens my call for transplant could be very soon. Also, a liver is commonly referred to as "a poor man's bone marrow" and contains many of the antibodies and lots of other stuff from the donor which would help jump start my immune system and help fight off rejection. Many who recieve both have less instance of organ rejection and that's the most important thing after transplant - rejection and infection. Either can be easily, and quickly, deadly.

But remember what I said - drawbacks. Always drawbacks. While it could be a case of getting the transplant sooner, it could just as easily be the other way around. Once your listed that way, you have to get both organs, which means they both must be viable. If one or the other isnt viable, you're skipped over. Which means I might miss my chance at life-saving lungs because someone just couldn't put down the booze (or various other reasons). Also, the surgery itself is much more complicated and invasive. But I'll get more into the liver aspect of all this as it becomes necessary. No sense posting a bunch of information that won't be relevant.

So thats where I'm at. Waiting. Waiting for them to finish up tests and give me the news as to which way I'm headed. I have a feeling there will be much, much more waiting to come though, so I guess now is as good a time as any to start getting used to it. Thanks for choosing to wait along with me.

Much love.. Erin