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

Things are finally startin to wind down...

So the last couple weeks have been good overall. Same ol, same ol with Mayo - solid appointments, everything still looking good. Cardiopulmonary rehab is winding down...got the word last week that I am progressing wonderfully and that as soon as I complete one more education class (Oct 24) I will have completed my CPR requirements and will be able to get the go ahead when its time for me to head home. Spoke with my transplant coordinator and she assured me that assuming everything stays as good as its been, there shouldn't be any reason to keep me here past Nov 2 (the day of my last scheduled appointment)!

You can't even begin to understand how ready I am to get back home. I am ready to get back to a normal life -- whatever that is for me! I have some plans I wanna start putting into action, but I'll leave those ideas for another day. And I know my mom is ready to get home. Being away from my Dad and all hasnt been easy but she's been awesome through this and I can't even begin to thank her enough for being here with me through all this. I'm not gonna know what to do with myself when she leaves!

The moving back to Orlando bit is gonna be a PROCESS. We are having some professionals come in a do a clean of the air ducts and vents in our house as well as a DEEP clean before I can move back in. My cleaning capabilities are somewhat limited right now, and I need a super clean environment to move back to. I'm also thinking about the possibility of having a cleaning service come in once a month to do a deep clean on a regular basis. I can do some basic cleaning, but I can't breathe in the dust and chemicals I'd encounter while trying to thoroughly clean the house, so that's gonna be something I have to figure out in the next few weeks. It'll depend on the cost, and obviously funds are limited with Chris having been out of work for almost three full months. The donations and gifts we have recieved have seriously kept our bills paid up and we are SOOO grateful to everyone who has been so generous to us during this time. You have serious kept us from being stressed to the max and that is SO important for me right now. So, THANK YOU - THANK YOU - THANK YOU!!

So anyway, I am working on getting a duct cleaning service and a housekeeping services scheduled as soon as possible. I won't be able to do the cleaning until I get the ducts/vents done so we'll most likely be in Jax for a few extra days after I am "let go." And don't even get me started with packing this place up and moving it all back!! I HATE moving -- I truly HATE it. My OCD goes into severe overdrive. Everything has to be packed in plastic containers with lids that latch. This way I can see into every box, the are easier to carry because they aren't crazy shapes and they have handles to hang on to, and when loading them into the moving van they stack nicely because they are the same shape and size and they sit on top of each other nicely. I like things neat and organized and those liquor boxes and random packing boxes just don't cut it. I also have this thing with making schedules on moving day and get VVEEERRRRRYYY flustered when things get off schedule. Its crazy I know. I was so glad I didn't hafta be there for the move DOWN. But that didn't stop me from making a schedule for Chris, Kellyn and my cousin Joel. As well as multiple lists of the items I needed, broken down into what rooms they were in and a brief description if needed. If you think thats bad that was NOTHING compared to what I was GOING to do, had I had more time. I didn't get a chance to make my itemized list with picture references and descriptions, along with going through the house and marking each item with color coded post-it notes. Whew...even typing that wears me out!

Lord, I do like a tangent don't I?!

Back to things that matter...we have had a nice last couple weeks - sorry I haven't been better are posting. Ever since my workout restrictions have been listed I've been pretty sore and tired from workin out so hard. I'm tryin not to overdo it, but I can't help it. When you haven't been able to workout in ten years, you sorta feel like you gotta make up for lost time!

Other than working out, I had some fun times with Kellyn, Mom, Chris and Mabree the other weekend. Kellyn came to Jax with my sweet neice for the first time since my surgery. It was soooo great to see them! I had missed them both, but especially my girl Mabree. She is so funny and I have so much fun playing with her. I got a chance to really play and run around with her for the FIRST time that weekend. When she was young it was no big deal that I couldn't  run around and be active with her, well, because she was immobile. But as she's gotten older, she has proven to be a girl with no STOP button. She is wide open and I love that about her, but it was getting increasingly difficult for she and I to really play much. I honestly just couldn't keep up. And the more oxygen I was needing throughout the day just made it that much harder. But the weekend she was here in Jax, I seriously had a ball! I could finally keep up with a three year old....LOL how pathetic is that?

 

We went to TJ Maxx and looked around (its Mab's favorite store...love that we have a little Maxanista - momma's teachin her well!! LOL). We also took Kell and Mabs down to my favorite farmers market/art market here in Jax - the Riverside Arts Market (or RAM, as its referred to here). Its a great market right on the river and has tons of vendors selling hundreds of different craft and art, local farmers with fresh produce, homemade jerky, local honey, handmade spice blends and lots of other specialty food items; facepainting, a gymnastics course, balloon animal guy and a crafts tent for the kiddos, live music, dancers, and DOZENS of food vendors with lots of creative and tastey dishes from latin to southern to greek and italian to stuff I don't really recognize. Its a blasty blast and Mabs had herself a pretty good time (see the cute pink tiger below!)

The next weekend my dad came down for a visit. We headed out to Jax Beach on Saturday and hit the fishing pier. The day was BEAUTIFUL and there was an amazing breeze - what more could you ask for for a day at the beach! I love that here in FL, beach days continue well into Oct/Nov! We spent about an hour just hangin on the pier watchin all the fishermen (and women) haul up quite a variety of ocean life -- including a sting ray!! I wasn't able to react quick enough to get a pick, but it wasn't too big anyway so oh well. You all know what a sting ray is - remember the Croccodile Hunter? - so just google it if you wanna see a pic. After the pier we headed down to the sand to relax under my canopy. Because of the suppressed immune system and some of the meds I am on, my risk for skin cancer has risen CONSIDERABLY, so I hafta be super careful when out in the sun. For the first time since I was a little girl I am back to wearing sunscreen. Oh well...I can breathe. :) Chris and I took our usual three mile walk (we have a route established when we head to the beach for my workouts) and by the time we got back to mom and dad the sky had gotten pretty nasty so we rushed to pack it up and head in. All in all though - a pretty fab day!

 

 

 

 

Which brings us (finally) to this past weekend. Chris and I had every intention of making Saturday a lazy day. We were well on our way when mom called (she had headed out to run some errands, leaving us in bed late into the morning), letting us know that she had just found out that there was an airshow down at Jax Beach and that we should head out there cause, well it was on the beach, free, and who doesn't enjoy a good airshow! We got ourselves up and out to the beach in time for some really good times watching military and civilian planes alike flying past us, so close to wear we sat on the beach you could almost see what color eyes the pilots had! Some of the planes put on some awesome ariel acrobatic manuevers that I never thought a plane was possible of doin. It was awesome and a fantastic way to spend an afternoon.

 

 

 

 

Well, so thats about it. You're all caught up! Tomorrow is a long day over at Mayo. I'm in for the works - blood work, xrays, pfts, bronch, biopsy - so I'll prolly be out of comission most of the day. And starving. The blood and bronch requires fasting before, and my bronch isn't till the afternoon! By the time I finally get over the sedation itll be after 6 and I'll be good and famished by then! So, as I always do, I'll ask you for your prayers for tomorrow. Prayers for good results (increased pfts, clear xrays, and no rejection or infection!!) and that I am able to refrain from eating my hand or something. Also, I don't know if I have mentioned this before, but bronchs can be dangerous. I have a GREAT team of doctors here and I trust them completely. But they are human, and mistakes happen. Any time they go in and do a biopsy, there is a possiblity of a number of things going wrong. One thing is that when they cut the tissue for the biopsy they end up tearing a hole in the lung. Needless to say, thats not the GREATEST thing to happen to a recent lung transplant recipient. I really haven't thought much about the "risks" during all this, but this past week I was talking to the wife of another lung tx recipient who was actually just a few doors down from me while I was still in the hospital right after my surgery. She had told me that they had to go back to the hospital the week before because they punctured a hole in the guy's lung during his bronch!! UGH...I would be livid (assuming that the worst that happens). So please pray I leave tomorrow without a hole in my lungs! :)

Many thanks, as usual, goes out to all those who attended the Toss for Taylor cornhole tournament, the GGI Annual Golf Tournament, the Premier Jewelry party, and the Thirty One party, and a special thanks to those in charge of putting on each. The generosity of all of you continues to be a HUGE blessing to us. We could not be where we are with this recovery if it weren't for each one of you. We are continuously overwhelmed by all the love we are CONSTANTLY receiving. You all are in our prayers everyday. We hope you will be blessed by something or someone as much or more as we have been.

I'd also like to ask for your prayers for a few others who need them desperatley right now:

Leon Peel
Jane Lisk
and one unnamed request

Each of these people are fighting cancers of different kinds, at different stages. Please lift them all up in your prayers and the battle this TERRIBLE disease. Pray for healing and strength for them and their families. Please reach out to these families and express your love and support to them, as you have done to me and my family. The encouragement from friends, family - even strangers - means so much when battling something a disease that is so devasting in every way. Its truly what motivates you to fight.

Much love...xoxo

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

Three Weeks Post Transplant...

Well, its official.

I am three weeks post transplant. And so far - all is well.

That first week out of the hospital was pretty packed with meals out, trips to different stores to get things here at the apartment set up, and getting things I'll need for my rehab/recovery. This week was relatively quiet. A few short trips to different places, a few visitors - but mainly just a lot of time resting. I'm still fighting quite a bit of discomfort so there were a few days the pain got the better of me and I honestly didn't feel like doin much.

But then there were days like Saturday where we spent a few hours at the Riverside Arts Market near downtown.

Have I ever mentioned my slight obsession with farmers markets, flea markets, and just about all other kinds of "markets?" Well, lets just say its significant. It could be 100 degrees outside or hurricane force winds blowing and I'm goin.

I love goin to markets where there is a blend of produce, art, locally made cheeses and baked goods, jewelry - anything unique or hard to find outside of the market grounds. I love talking to the vendors. They are always so passionate about what they bring. One of my favorite vendors from Orlando, Argyle Gifts, was actually up here in Jacksonville this past weekend and I was so excited! I've purchased quite a few things from them over the years and I always love catching up with them to see their newest pieces. The specialize in creating jewelry, candleholders, wind chimes and other items from old silver serving peices. They frequent estate sales, thrift stores, garage sales, and buy online silver from all over the world, some new, some hundreds of years old. One of my favorite pieces if a baby spoon ring that I literally wear everyday. This past weekend my mom purchased a pair of earrings made from silverwear that had the most beautiful pattern on it. I can't remember exactly what he called it, but apparently it was the silver pattern of King Edward (?) before he abdicated the throne for some reason. (sorry I don't know my history LOL) Apparently, once he abdicated the throne they sold the pattern off and it began being reproduced, but not for royalty anymore. Or something like that. So, its got some cool history, even if my understanding of it is sorta iffy. Regardless, they are beautiful! And super unique - yay!








So after browsing the market, Mom and I buying some fantastic spoon jewelry, Chris loading up on locally made honey and a variety of locally made beef jerkey, we headed back to the apartment. Later that evening we had what my family affectionately refers to as a "Fam Jam" which basically is anytime more than about 3 of us get together at once. This evening, two of my cousins, my cousin's roommate, and my friend Amanda from Orlando came over for a spaghetti dinner. It was so much fun just to hang out, eat and relax for a while. Later that evening the boys left to head out for a few (much needed on Chris' part - bless him) beers, while Amanda stuck around the apartment and caught up.

Speaking of Chris, I want to take this opportunity to brag about my husband for a minute.

As most of you know, Chris and I have been together for going on 13 years  (5 years married this May). It wasn't long after we first got together that Chris found out about my cystic fibrosis. It wasn't something I kept a secret or anything, but it wasn't something we discussed a lot either - mainly cause I was so healthy it really never was on either of our minds much. It wasn't until college when I started getting sick that it became something we had to "deal" with. I'd be lying it I told you I wasn't sure how our marriage was gonna pan out early on. Not because I didn't love him, or doubted his love for me, but when your dealing with a chronic, terminal illness...well, it makes things difficult to say the least. Knowing that you or your spouse can/will die because of this illness at some point, and not knowing how soon/late that's going to be makes finding a balance tricky sometimes. It wasn't long after we got married that I could no longer work fulltime because of my constant illness. Going on disability at age 24 was humiliating for me. I felt like a huge drain on my family, my husband...everyone. I could work part time - at best - and my ability to be a great "housewife" was seriously lacking. For the last 4 years or so I have been plagued with guilt over the fact that our relationship felt SO one sided. Chris works 10-12 hour days almost everyday, rarely ever taking a day off. Anytime he takes a new position somewhere he goes through a process of making sure they offer wonderful insurance (for me mainly, since he hasn't been SICK in about 7 years), that he is guaranteed XX amount of pay to make sure that he is able to pay for ALL of our bills, and that he is withing XX miles of our house so that if he needs to get home to help me, he can get there quickly. When he comes home from his long days at work, he's the one that takes care of the dog, takes out the trash, vaccuums the house cause I physically can't, always helps me make sure I have my oxygen in whatever room I want to be camped out in, brings me drinks and food cause I am to short of breathe to make it to the kitchen to get it myself. He does most of the laundry and dishes. And hardly EVER complains. Don't get me wrong...he doesn't do it all with a smile, but I don't expect him to. Hell, I sometime WISH he'd be more upset about it. Cause let's be honest...I don't know if I'd be so nice about doing all that. I'm just not as selfless as he is, and thats just the truth.

Take the past three weeks. Chris has been absolutely AMAZING. He stayed all but ONE night at the hospital with me, and that was only because I insisted he go back to the hotel my parents were at just to get one good nights sleep. Nights at the hospital were not great. I was up, in incredible amounts of pain, every two hours. And everytime I woke up I would need him - to bring me something to drink, to help me move to a new position, to rub my back, shoulders, feet or whatever part of my body was in agony. And then there was the constant disruptions of any hospital - the IV alarms that go off when a med is done infusing or my pain med was almost out, the nurses coming in to take vitals every four hours, the xray techs that started rounds at 5am everyday, followed by the blood draws at 6am and the surgeon rounds at 7am. I don't know how he managed everyday. But he did. He was there, encouraging me, comforting me, helping me, and sometimes antagonizing me to work harder and walk further everyday. Its because of him that I am where I am in my recovery.

Its because of him that I am alive right now at all.

I know that when we got together he couldn't know the impact he would have on my life as this disease destroyed my body. I know that cause I didn't know either. I would have never expected someone to be there for me like he has been. I never thought that the thing that was literally destroying my body, would be the thing that would bring us and tie us together in such an unimaginable way. We've had a very tough last few years. But in these last three weeks....somehow all that makes sense now.
These years have forced me to learn to rely on someone other than myself. That was never something I was good at. I was always incredibly independent, never compromising on what I wanted, no matter what. It was my way or the highway. (And I mean that literally. I've actually kicked someone out of the car on the highway before because they refused to do as I said.) I am still not great at relying on help. Still not great at not having the final say, of the control over everything. Probably never will, which is why my relationship with a small anxiety medication will probably be for life. Ive took to it kicking and screaming, but honestly I didn't have a choice. I was dying, and I couldn't do it alone.

Enter Chris. My best friend and soul mate. May sound cheesy, but its true. We were meant for each other and its clearer to me now than its ever been. He was meant to help me through these last few years. I don't know why it had to be so difficult...probably because Im so stubborn it would take an absolute disaster to break through my thick head. But coming out the other side of this, my life seems to have a different perspective. I can finally become the wife I want to be. To have a marriage thats set on a more equal footing than it once was. I can get a job that actually pays a few bills. I can participate in household stuff (to some extent), maybe even have dinner ready when Chris comes home. I finally don't feel like a liability. You have no idea how excited I am for this new life. How excited I am to have a marriage that gives us both what we deserve.

Well, I think thats all for now. Tomorrow I head back to Mayo for my follow up visit after the labs and tests I had done today. I'll update you all on my current status tomorrow. Send up a prayer that the med adjustments we did last week have brought the mild rejection under control and that infection is still non-exisitent.
Have a great night...much love...
Erin

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