Lotta air in these lungs :)

Just another super quick update:

Most of you probably saw my FB post about today Dr visit. I went to see my CF pulmonologist for the first time since my Tx. Dr Layish is the one who kept me going the years leading up to the surgery. He def had a difficult job! If it weren't for him I wouldn't have made it to Tx, and wouldn't be doing as well now. I got to meet with my social worker, nutritionist, and Dr Layish and they are all super happy with my progress! Last time they saw me was back in March before I even went through transplant eval and my lung function was at 27%. Between that visit and my eval it dropped 6% in about 3.5 months! Today -- 107%! An 80% jump baby! And my weight is at 141 - holdin steady at "water buffalo" status. :)

Good stuff...




Me and Dr Layish - best CF dr ever :)




Today's PFT results! Woot!!



Much love...



Erin

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

It's good to be home...

What a week. Well, last TWO weeks I guess. We have officially been HOME for two weeks now. Sorry it's been a while since my last post, but its been a little crazy since the move back. Tryin to get my house back in order, tryin to get through the tons of thank you notes I'm writing, and loads of other stuff, has kept my time for blogging to a minimum!

My first day back was a little surreal. I kept walkin around the house as we moved our stuff in thinkin, "I can't believe I'm here. More than that, I'm here and I can breathe!" It's crazy to think that the last time I was in this house I was circling the drain. Sittin in my chair in the living room is weird. (Yes, I have a "my chair" - no, Chris does not LOL) Before, I had been camped out there for days. I was strapped to oxygen 24 hours a day and could barely get up to fix something to eat without struggling HARD. I was seriously miserable. I'd be posted up in the living room hurting, wheezing, coughing up blood and puffin on my breathing machine half a dozen (sometimes more) times a day like it was my job. I feel like I should be surrounded by a variety of medical equipment, but that's no longer necessary. Weird.

But awesome.

Kellyn, Ronnie and Mabree came over last weekend. Mabree had been given Sea World tickets last Christmas by mom and dad and since I was feelin AH-MAZING I got to tag a long! Do you have ANY idea how awesome it was to be able to walk around a park of that size and not be phased by it at all? To not hafta take constant breaks to catch my breath? It was so much fun and I was so glad I was able to go and see Mabree's reaction to all the whales and other animals, and to be able to ride the Journey to Atlantis log ride with her - her face in the picture is PRICELESS! I wasn't able to ride the awesome lookin roller coasters yet, just the non-jarring log ride that gets you SOAKED, but as soon as I'm cleared for that I'm goin back. Dad got me a Fun Card (pay for a day come back all year) soooo as soon as I'm done healin I will be ridin the Kraken.



Mabree is so stinking funny!


Still feelin pretty amazing - home spirometer reading the other day showed my FEV1 at an all time high for me - 107%. I have NEVER had lung function this high before EVER. Not even when I was at my healthiest and running miles a day during track/cross country or playin soccer or basketball. I didn't even KNOW your lung function could get that high. And if I had I would have NEVER believed I'd ever reach it!

Weight is maintaining right at 140. Next goal is to put on 10 more pounds of muscle weight. I also may have mentioned this before, but I gained an inch of height. Well not so much gained, just got back. Last few years I dropped from 5'11 to 5'10. I was in so much pain and had such a hard time breathing that I had started slouching and getting all hunched over. Well I'm standing and sittin straight now so the AMAZON IS BACK BABY! I've had to buy some new clothes because my pre transplant body was shorter and much skinnier than I now. Particularly my pants. I had gotten to literally havin to SHOVE my self into my jeans. (Never thought I'd EVER have THAT happen!) I'm talkin circulation issues here people. But my shirts aren't fitting great now either - my arms (and other things north of the belt line) have gotten larger as well. So unless the clothes were on the big side before its just not happening. I plan on goin through the closet and dressers this week and makin some serious donations!

I went to the Central Florida CF Support Group education day yesterday and spoke to the participants about my transplant and this blog. It's safe to say my public speaking skills are seriously lacking. The entire time Im tellin my story, all thats goin on in my head is "Don't cuss at these people. Don't say anything ridiculous or inappropriate. Seriously, don't." I don't RECALL any major slip ups, but with my prednisone/prograf brain I honestly can't really remember. So any of you reading this today that were in attendance yesterday I do apologize. Not only for the poor delivery, but for anything absurd that may have escaped my mouth - I did try. Being a motivational speaker is officially off the table as a possible career choice. I'll stick to the blog.

Tomorrow I'm starting back to work. Part time of course, but I'm ready to get back. I'm also gonna be goin back to school in the Spring, so I'll be workin on gettin all that stuff worked out this week. Pretty excited about it, but also a little nervous. It's been a while since I was last in college and well, I wasn't exactly success story (that's prolly putting it mildly). So pray for me people. This should be interesting.

Oh and for those who may have missed my FB post last night, we had people over to our house and I cooked a ton of food. It was super fun to finally get back to cooking. It's always something I love to do, but - like everything else - had become nearly impossible for me to do much of. I decided to try my hand at frying shrimp for the first time. Spent like an hour dredging these dang things, dippin them in this homemade beer batter and frying them up. My house REEKED. I am not a fan of ANY seafood and was not happy that my entire house freakin stunk. But they cooked up quick, looked like (what I thought) they were supposed to look like and honestly I was pretty excited that I got them done without some sort of grease fire or severely burning the shrimp. I set them out right before Chris came home and he beelined right for them once he walked in the door. It was at that point he informed me that, while they looked great, they had been battered and fired with the shell and claw/leg thingys still on. I was pissed. I don't eat shrimp, much less ever tried to cook them so I had no idea I needed to do that, especially after I asked the dude at the seafood counter for like ready to cook shrimp cause I didn't feel like deveining a bunch of nasty shrimp poop. Well apparently THAT didn't happen, and my ignorance of all things shrimp didn't put me in any position to notice any thing was wrong. So needless to say those shrimp found their way to the trash and I was furious. I have decided I am giving up on cookin all things seafood. I tried to cook Salmon for Chris and I last year and that was also a complete fail. So I'm done. I gave it the ol college try. I'm stickin to what I know from now on.

Seafood - 2 Erin - 0


So there you are - pretty much up to speed now. I'm goin to end here and go enjoy my Sunday Funday, which will consist of cleaning and other house stuff today. We really know how to take advantage of our day off together don't we? Hope you all are well, and as always, big thanks to everyone for continuing to pray for us and for stayin on this journey with us!

Enjoy the day folks! :)

Much love...



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

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

Profound explanation of organ donation...

While I have much more to share about whats been happen here at Mayo/Jax the last week or so, I wanted to post this for now while I finish up an update. This was posted on FB by a friend/fellow CF patient & double lung transplant recipient. She is a huge advocate for organ donation and travels around the world discussing the importance of donation/transplantation with different cultures (specifically ones with cultural/religious apprehensions towards organ donation). The following quotes are amazing explanations of why organ donation is such an incredible thing and should be viewed as such, not something that devalues human life or has any religious ramifications. Please check out the organ donation and transplantation page to learn more about how u can help save a life! :)

ENJOY!


The following posts are geared toward the Japanese culture's fear regarding reincarnation and the afterlife...

"If you are worried that you will miss out on a resurrection or limp around in heaven if you don't have all of your parts, let's consider for a moment the power of God to create you from two individual cells that combined to from one complete set of DNA, which then duplicated and differentiated itself into a living, breathing, thinking, feeling, human being. If God can create you once from two microscopic cells, then God can certainly account for the lack of a liver, kidney, heart, lungs, corneas and some skin and bones. In addition, Jewish tradition considers saving a life to be the epitome of religious obligations. When you agree to be a donor, you can save the lives of up to eight people, and help numerous others with cornea transplants and bone and skin grafts." -- Rabbi David Krishef

"Have you had your tonsils out? Maybe an appendix? We have shed hair and nails and skin all our lives. In death the unraveling of the flesh is expected. One could say that to die is to come apart. Your discomfort with donating organs is at least partly the discomfort of losing your body and life in general. That is natural. Likewise, when we honor the bodies of the dead we show our reluctance to let go, our respect for the mystery of life, our respect for ourselves. Giving organs to those in need of them does not violate the rule of nature, which claims all flesh in time. It does not violate the life of the deceased, as the body is now lifeless. It does not violate the respect we have for life in general, as it helps preserve and enhance the lives of those around us. To be able to give life is a virtue all faiths extol. Life was a gift in the first place; to be able to hand it on is to make us partners with the Giver of Life. Win-win." -- Rev. Fred Wooden, senior minister of Fountain Street Church in Grand Rapids


Thank you goes out to Isabel Stenzel Barnes for these incredible posts and for all her and her sister Anabel Stenzel's hard work in promoting organ donation and bringing awareness to CF. To learn more about these incredible sisters, check out their website www.thepoweroftwomovie.com





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

Sore...tired of being sore.

Ugh...ever feel like you'll never not be sore again? Yeah, startin to feel that way over here.

Past week I've been tryin to cut back on the amount of pain meds I've been taking. Well, I'm beginning to think that may have been slightly premature. As these muscles and nerves that were sliced and diced grow back together and heal, a lot of the numbness around my chest and back has gone away. Great right? I've been wanting it to go away for weeks now -- its a gross, weird feeling to be numb around your body...just Ughhhh -- but now in its place is a lot of discomfort. Not so much PAIN, but discomfort. It makes for very uncomfortable sleep and puts me in a less than stellar mood to say the least. Also the last 4-5 days, I have been experiencing quite a bit of pain in my right shoulder. Like significant pain. The kind that catches your breath and makes you holler in pain for about 2-3 straight minutes. It feels like a muscle is getting "caught" or something and then this searing pain follows until I can sorta "work it out." I was at rehab this morning and told them about it. Another rehaber (I guess thats what you can call us) spoke up and she was having the exact same pain in one of her shoulders. I asked her what she was doing about it and it turns out she a rotary cuff tear that she got during her transplant surgery!! They had done an MRI and found it last week and shes meeting a doctor tomorrow to figure out what they are going to do about it.

Seriously? I swear, if through all this I end up having a rotary cuff tear...heads will roll.

So needless to say my physical therapist is very concerned and all upper body work outs have been suspended until I can meet with my doctors to figure out if I also have a rotary cuff tear. Ugh. Luckily I meet with him tomorrow, so HOPEFULLY we'll figure out what's up and HOPEFULLY it will NOT be a rotary cuff tear. I have no idea what they do for something like that, but it sounds like surgery to me, and quite honestly I've had all the surgery I'd like to have for a while!! So fingers crossed and prayers goin up that its something small and manageable.

Rotary tear. Bless it. **SIGH**

Other than the soreness, things are going pretty good down here. I have blood work and chest xrays and stuff tomorrow and its gonna be a loooong day I have a feeling. No bronch till next week though. Honestly, waiting that long between bronchs (it'll be two weeks) makes me a little nervous. I feel like thats too long and that something is going to happen that won't be caught until its too late. I know that if there was any cause for concern I would probably feel it, but I can't seem to shake the nervousness and the dread of waiting for two weeks to possibly have them tell me I'm in full blown rejection or something. I trust these doctors completely to know what they are doing, and trusting God that everything is going to work out, but its still hard. And giving myself peptalks everyday is frustrating, and honestly I don't even believe myself. So sorta useless sometimes. I don't handle stress well to say the least and this is SERIOSULY creating an increase in Xanax usage. I think I'll feel better once my next bronch is here - atleast if it gets here and everything is good. Otherwise I might have a nervous breakdown. Just thinking about it right now has started making me sweat.

MOVING ON.

Tomorrow is Chris' 30TH BIRTHDAY! We are planning to just have a few people over to hang out by the pool and grill out. I say a few people cause its a weekday and we only know about 3 other people here in Jax. I wish I could do more to make it a bigger deal, but Chris isn't exactly thrilled with the prospect of turning thirty so maybe its for the better. He's been findin some gray hairs lately - all I am sure cause by me. (Sorry babe!) We have plans to go to a concert on Thursday just the two of us at the Jacksonville Theater. A family friend of ours works with the artist and has gotten us free tickets to go so I am excited about that. I've never really heard Chris Isaak before and am not familiar with his music, but I hear he puts on a great show and itll be fun just to have a date night and do something a little different. And its even better cause its FREE which is pretty much the only way we are doin anything these days!! So big thanks to Kristin Sauter for the chance to have a great night out!! :)

I've been approached by a few people who are putting on fundraisers for Chris and I in the next few weeks and I just wanted to say that Chris and I are so overwhelmed by the support we continue to get from our friends, family - even people we have never met. Going through something like ths is so stressful and demanding on your emotions, your mind and especially your wallet. I can't thank these people enough for putting together these events, and thank each and every one of you who have committed to participating. Having so many people offer their time and resources has meant so much to us. I honestly wish this wasn't something that needed to be done. But please know that we don't take the sacrifice and generosity you all have made on our behalf lightly.

This entire experience has been an eye-opening one for me. I am not one to usually TAKE things. I'm very independent. Don't like to ask for help. I guess its a pride thing, also a control thing (read back through the posts if you missed my rant about my control issues..they are real and extreme). From the get go, I've been forced to take and recieve...my new lungs for starters. My survival hinged (and still does) on these donor lungs. Without this young man I might not be here right now. If nothing else, I'd still be circling the drain. Without the love and support from so many friends and family we would not have been able to make it through the last few weeks. I've been told numerous times that I need to accept help more graciously and easily. So, I'm working on that. I've sorta been forced into it really. But please know that while I may not be thrilled with the IDEA of having to accept so much help, it has meant more to me than you will ever know. I still wish I could refuse it all, take care of it all myself and just go about my day...but I'm learning to recieve with an open heart. And it has been such a blessing. Being able to take some of those things off my shoulders has been so important to my recovery. My stress level is SO high as I go through this, and knowing that I have such an INCREDIBLE support system has kept me able to heal and focus on taking care of myself. Without so much love I know that I would not be at the level of health and success that I am currently at in my recovery. Thanks will never be enough to everyone...

Well...thats all for now I think. Maybe next time I'll have something a little more entertaining to post. Until then...take care :)

Much love...

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

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

First minor setback...if you can really call it that

So yesterday was sort of an annoying day.

Most of you know that I had some tests and things done Monday. Blood work, chest xray, bronchoscopy and my first pulmonary function test post transplant. During that visit I got great feedback on my initial results: bronchoscopy looked clear and lungs were looking "better than they should be" at this point, O2 stats were 99% on room air, blood pressure was spot on and chest xrays looked "great." And while I felt that a 54% FEV1 score was LOW (well it was high compared to my 22% pre-transplant), they assured me that it was right where it needed to be for this stage in my recovery and that it will only be going up. I had them assure me of this about 10 times before I left the room, but they were all very positive and excited that my levels where were they were less than 2 full weeks post transplant.

All I heard =  that there was room to improve.

Honestly I can't imagine it feeling any better though. At only 54% FEV1 I feel like I'm at 100%. I think any more lung capacity and my entire body will just explode!


So Tuesday was supposed to be a slow day. Just a routine visit to go over my blood work and biopsy results from the bronch. And well I guess it was exactly that. Just not the results I was exactly hoping for.

Before I go on, you people hafta understand something about me:

I am completely mental. Its true...and for all of you thinkin I'm so strong and such an inspiration - well, lets just say I'll be prayin for you.

I am your typical overly competitive, ridiculous high expectations type who suffers the likings of a complete mental breakdown if things aren't progressing exactly the way I think they should or want them to. Some might call it stubborn, some call it determined...I call it mental.

I call it mental cause I allow it to utterly consume me sometimes. I am a complete control freak and knowing that you can do exactly what you are asked to do, maybe even more than asked to do, and this whole thing still might just go to crap overnight, causes me a level of anxiety few ever achieve in
life.

How I tricked that pysch guy into passin me for this surgery was a sure act of God. Now, I'm not one to question the will of God too much...I've seen too many times how things so inexplicable have turned into something so beautiful. Too many times. Now, just cause I don't question it, doesn't mean I understand it.

Now being a complete basket case when it comes to controlling my life and being someone who doesn't question the will of God has not, is not, and will never be an easy thing to do. I am in a constant battle of wills with these to aspects of my personality. If you've ever seen me in action you'd recognize a very distinguishable "Dr Jeykll/Mr Hyde" scenario happening. However, I am currently trying to master the controlling part of my personality and let God take this whole thing over completely. I've seen how He works and how I work. And as much as it pains me to admit...I suck. And after all I've been through, I can't afford to suck.

That all being said, back to yesterday.

One good thing (as uncomfortable as it was) that I wasn't anticipating to happen for another week happened. They went ahead and removed half the staples from my incisions and the sutures in my sides from the chest tubes. Not a very pleasant experience to say the least, but not the worst since all this started two weeks ago. And while today has been uncomfortable in those areas, I'm hoping that tomorrow I will be feelin the relief that comes with havin some of those out. So one good thing. But then there's always the bad thing right? (Well maybe not always, but generally enough that I feel comfortable following the "expect the worst, hope for the best" mentality when it regards my attitude) At the appointment with my transplant pulmonologist and coordinator, they informed me that based on the lung biopsy results from the bronch the day before, while we weren't culturing any infection (GREAT NEWS), they did show some signs of mild rejection.

They were quick to assure me that MOST transplant patients experience mild rejection within the first 30 days of transplant as your body is trying to reconcile what exactly is going on with this foreign THING they've just put inside you. Thus the reason for the super high doses of immunosuppressant/antirejection drugs they're pumping through me daily, and the reason they require patients to remain close to Mayo after transplant for atleast 3 months. They are able to constantly monitor my status and adjust my medications as immediately as possible to ward of infection and rejection that can be deadly. They assured me that mild rejection was something they don't even like to tell their patients about because in honesty, your body has been trying to reject those organs since they went in, and will always be trying to. They weren't made for my body. They're basically on loan. My job (and my doctor's job) is to make their stay as pleasant as possible so they'll want to stay as long as possible.

Well knowing all this is great in all, but remember what I said about being mental. Yup, knowing all that means little when you're me.

I, of course, fight it as much as I can, but its not long before I am up, pacing through my exam room muttering things to myself like, "ok lungs, don't screw me on this," while my pulmonologists decides what adjustments need to be made with my meds. Basically doubling my Cellcept and bumping my Prednisone up 10mg a day. Great. Cause my brain wasn't mush enough already. Bring on more Prednisone! He also prescribed a one time bolus dose of Solumedrol that I did by IV yesterday at Mayo.

So hopefully that will bring these bad boys back to happy, and quickly. One of the lucky things about catching this stuff early and making the necessary changes so quickly means I haven't felt any different. Again, keeping these lungs happy is my only goal until they decide they like where they are and will quit tryin to bug out on me on their own. I realize they could have gone into a more hospitible environment than I can generally provide, but I hope they just give me the chance to try!

Remember, lungs, I didn't pick you for me. God, did. Go with that.

So that's that for now. No appts today or tomorrow, but back to Mayo Friday for another chest xray. Today will, hopefully, be that slow day I was hopin for yesterday. May run a few errands with mom and Chris, but mostly just layin back and restin today. Like I said, I'm pretty uncomfortable today, so lots of activity prolly isn't happening. My cousin Joel and his roommate Mike are comin over tonight for dinner, so that'll give Chris an opportunity to grill, which he never passes up, and allow us to feed two poor college boys who's kitchen cabinets would put a homeless man to shame. I'll never understand Ramen Noodles...and one's willingness to buy them in bulk. Ugh.

So I'll do now what I do best - beg for your prayers! I've seen the power of prayer you people can generate, so I'll shamefully ask it of you again. Rejection and infection. I'd like none of either please. Thank you all again for your constant support...I'll never stop saying thank you for that.

Much love...



Erin