A little hiccup seven months in...

Ok Im gonna hafta get a little better at this.

So its been a pretty quiet month overall. Except for last weekend when my good friend Kevin was called for his lung transplant (he also has CF). He's on the list at Mayo, just as I was. Unfortunately it turned out to be a dry run. So he's still on the list. But he IS number one, so...it could be any day!

Ive been doing great, steadily gaining weight and working out. I have an organ donation/transplant 5k in April. The goal there is to actually run the entire thing. Not worrying about time, just finishing. We'll see how that goes. I don't know if I'm mentally able to not worry about time. Thats just not in my nature, lets be honest. To many 5ks in high school has left me unable to do handle failure well...and running anything over a 30 min 5k (I'm giving myself a long time to run this obviously) is just not gonna work.

One thing I am slightly concerned with tho is a recent change to my meds. They asked me to hold the medication Valcyte which is protecting me from getting CMV (cytomegalovirus) - google that if you want. My white count was low in my latest labs so they told me to hold it to see if they improved. Only problem with that is that it allows the CMV antibodies that were present in my donor lungs to make there way to my lovely immune system, remarkably feee of CMV antibodies. How i never got CMV growing up is beyond me. Over 75% of the population is positive for CMV antibodies, yet somehow in all the sickness i had, never was it CMV. OF COURSE NOT. Soooo Ive been payin attention to how I'm feelin, Spiro numbers and temp and such as so far no real change. But this morning i woke up with a sore throat and i little cough, but nothing productive, more just a tickle. No fever or anything and from what I can tell my lungs sound clear and air is moving easily (yes I have my own stethoscope). For all i know they are just allergies, but I'm getting freaked out. Ive called Mayo and am waiting for a call back. I did follow up labs yesterday but I don't think the results are in yet. They would be able to tell if I am now positive for CMV. This was something we knew was going to happen at some point - anytime you have "mismatch" between the donor and the recipient - but still Im sorta freaked. Soooo until I get a call back Ill be home, laying down and re checking my vitals every hour or so. Lol - can you say paranoid much?

But Id appreciate some good thoughts and prayers that if this issss CMV that it'll get taken care of easily and without any extra issue. Annnnnd that Mayo calls me back like soon. Not exactly how a was hoping to welcome my SEVEN MONTHS post tx, but hey whatcha gonna do. I just hope I don't hafta go to the hospital or anything cause I have a hair appointment tomorrow and seriously things are startin to look a little unfortunate up there...

Hope everyone has a great weekend :)

Much love...
Erin

Tis the Season!

Ahhh...Christmas has officially arrived at the Taylor house.

Christmas is my FAVORITE time of year. Well, the season itself, what it represents, and the fact that I get to be with my friends and family - especially the ones I don't get to see often. I could skip the angry and rude shoppers at shopping malls and other retailers ( I will never understand that as long as I live. Seriously people, its the holiday of love and giving and it feels more like MMA tryouts if u venture out to shop any time after Thanksgiving, and through the New Year). Christmas decorations that pop up like two days after Halloween, and "politically correct" -- someone give me a break with this crap PLEASE -- references to the "holidays" in an effort to avoid insulting people just irritate me to no end. I cannot understand how a holiday - whose entire reason for existing is the very essence of Christianity - is being turned into a generic "Hallmark holiday" because the constant religious references OFFEND some people. Are you KIDDING ME? Sorry people, just because you want to take advantage of the pretty lights and the idea of getting lots of presents (for apparently no true reason in your world) doesn't mean that the entire reason for the season isn't Jesus. You need to get on board with that, or seriously just make up another holiday. Say on like the 26th and call it All Snowman's Day and celebrate it however. For those who live in non-snow climates, well I hope that doesn't make you feel "left out", "offended" or "discriminated against", but well, a) it was just a suggestion and b) well, I don't honestly care. Life's tough, get a helmet. Do what you will, but leave my CHRISTmas alone.

Ok, off my soapbox - sorry, that devolved quickly.

Annnnyway, like I was saying, I love Christmas. Decorating my house has always been my favorite part. I have this sick obsession with Christmas tree ornaments. I literally have HUNDREDS. Growing up I remember always having tons of ornaments. Then again, they were acquired over years and years, many of them hand made by my sisters and I and, well, that just adds up quickly. It made sense to have lots.

But I sorta skipped the handmade-by-children part and the slowly-acquire-many-over-the-years concept. In the five years that Chris and I have been putting up a tree together I have purchases literally hundred of ornaments. So many that I have already gone thru and purged some and given them to Kellyn for her and Ronnie's first tree together. Having to decorate your very first tree isn't cheap, especially when you like a tree full of ornaments and you are starting at zero. Not that that stopped me that first Christmas (altho when Chris found out that was almost the END of Christmas that year lol). I was all too happy to donate some to Kelly and Ron, especially since that meant I got to go out and replace them!! ;)

I have a sickness when it comes to ornaments. A true love affair with these beautiful, sparkly, shiny globes, crosses, snowflakes, reindeers, Santas, and every other unique little dangling pieces of lovely. I treasure every single one and love to just look at them. As soon as retailers start putting them out, I'm there, picking out new ones every year. Generally I don't like spending a lot of $$ on ornaments (I mean like individual prices), although I have been known to cave in the past and scoop up a variety of $8-10 (each) pieces of unexplainable dangling happiness. But that is the exception, not the rule. As much as I love quality, I'm also a QUANTITY person. I like my tree so full of ornaments you can barely see the tree itself. Hobby Lobby has been my best friend when it comes to quality ornaments and prices that promote quantity, LOL! They ALWAYS have great prices (most are listed $5 and under) and are ALWAYS 40-50% off. So I mean lets be honest. Getting ornaments at the $1-2 mark -- well lets just say it can get a little cray cray.

At any rate, I love the way my house looks at Christmas. I never want to take the decorations down. If it wouldn't be weird I would leave them up year round. I love the feeling of warmth and fullness my house has when all the decorations are up. A few years ago I learned I was allergic to trees (which when living in NC was a def issue). We had to commit to all fake trees at that point. That was a sad time for Chris and I. We LOOOOVE the smell if Christmas trees. However, I have learned that the advantages of the fake tree has begun to outweigh those of a real one. No more throwing $$ down the drain every year, no never-ending battle against the falling pine needles, the leveling and re-leveling, the army crawl under the tree to water it constantly... sorry but just thinkin about that now makes me totally over it. Not to mention the utter failure of our very last real tree. We attempted to "choose and cut" our tree that year. Unfortunately I was very sick and we couldn't travel up to Boone to do it properly. So we decided to stick around town and visit some of the (very) few tree farms in the Stanly County area (piedmont region) of North Carolina. Needless to say, areas that have high heats in the summer around the 100 degree mark doesn't lend itself to quality Christmas trees. The one we purchased (despite my protests and a loud and slightly embarrassing yellin match between Chris and I over the tree I did NOT want) was half dead the day we bought it and was not the type of pine tree I liked. By the time we got it home and set it up, it was well on its way to resembling one of those Charlie Brown trees. I'm talkin we lost more than half those needles just gettin it set up. My mom was over helping me and was laughin so hard I thought she would pee in her pants. Which just made me more and more angry, which would just keep making her laugh even harder. It was a vicious cycle.

At any rate, by the time it was almost up and finished, the unmentionable happened. The damn thing fell over. Yup, just fell right on over, ornaments and all. I was livid. I had never wanted Christmas to be OVER so badly in my life. Well, here I am tryin to prop the tree up and am cussin Chris for all he's worth (gotta love my holiday spirit, right?). Mom is LESS than useless at this point. She's laughin so hard all I want her to do is get off my couch cause Lord help her if I hafta clean up cause a grown woman wets her pants on my upholstery. Luckily - VERY lucky - that didn't happen. Long story short (or not), that was the last real tree the Taylor house ever saw.

While my initial reaction to no more real trees was slightly disappointed, I realized quickly how utterly fantastic fakes are. No needles to clean up, not watering, no leveling, and best of all most come prelit (never something I was good at - that was always Kellyn's part of tree decorating). And while I missed the smell, I realized there was a number of candles, sprays and now even these little green things you hang in your trees to simulate that Christmas tree smell. So thank you retailers everywhere - I officially want for nothing when It comes to my tree.

So today, I finally got all my Christmas decorations up. And I did it allllll by myself. Got the tree out, put up, lit and decorated. It's been years since I was physically able to do all that, and even when I was feelin ok I still just didn't have the physical capabilities for all that. So while my original plan was to just get all the stuff out and then I'd wait for Chris to get home from work to help me. Well, that idea sorta flew out the window once I started. It felt so good that I was ABLE to do all that I couldn't stop. I'm tellin you people -- the things you don't realize you miss out on when your as sick as I was is crazy. I don't think I even realized exactly how sad my life had become. Not until just recently a is it all REALLY coming into focus. It's so easy to take advantage of the simplest things - like decorating a Christmas tree. I'm tellin you, as long as I'm livin, I'm never takin advantage of the small stuff again.

I have a feelin this might just be the best Christmas EVER! :)




Tree 1 in the front foyer ( yeah u read that right...)




Tree 2 in the living room



Tree 2 (again)




Annnnd Tree 3 (small, but cute - in the dining room)

YUP, I have three trees this year! (It was necessary in order to be able to hang all the ornaments ;) )




One of Chris and I's wedding pics on display.




Dining room table - hangin the stockings on my bar cause its FL and I don't have a fireplace :/




View from kitchen into dining-living room




Front foyer (with tree 1) is where my new nativity scene is (thanks mom - I love!). I've never had a nativity scene of my own before and I just love this one. So perfect :)




View if the living and dining room from the front of the house looking back. Tried to get all three trees in one shot. Not the best in terms of that, but it still looks super pretty ;)

Ahhhhh I just love Christmas. Hope everyone is enjoying their CHRISTMAS season so far. Don't forget the REASON FOR THE SEASON FOLKS!! <>

Much love...



Erin

Today has been quite a day...

Last night around midnight I began coughin up a lot of blood. I do this from time to time, sometimes its next to nothing, other times its like something from a horror film. Well last night was somewhere in between, but since my lung function is down in the 20% range, we decided that it would be a good idea to head over to Winter Park Memorial Hospital where my CF specialist is and get on some IV meds and some pain meds. For those of you who have never coughed up blood, it is a terrible drowning feeling coupled with a terrible ripping pain in your chest everytime you cough...unpleasant doesn't even begin to describe it.

After close to NINE - yes you read that right - NINE HOURS in the ER I finally made it up to my room. Soon after the usual visits from my doctors to discuss the plan of action, my Aunt Patti shows up to check on me. After hanging out for about an hour, she gets up to leave. As she does my phone starts ringing. As I was saying goodbye, I decided that whoever it was could wait and I would call them right back. Once she left I checked my voicemail - a call from Mayo Clinic.

Assuming it had something to do with scheduling more appointments, I was in no hurry to listen to the voicemail. I decided to go a head and listen anyway just in case and was stunned by what I heard.

The voicemail was from my lung transplant coordinator, Kelly Norman. She was calling to inform me that they have recieved all my test results back from my recent liver evaluations. She went on to say that based on those results, they have determined that I am NOT A CANDIDATE FOR A LIVER TRANSPLANT!! Did you hear me?? NOT A CANDIDATE FOR LIVER TRANSPLANT!!! Finally, the first piece of good news in the last two weeks! :)

Kelly also mentioned that since I have completed the lung transplant eval and that I was determined to be a candidate for lung transplant, she will be completing the paperwork required today and that she will be giving me a call mid-morning tomorrow to let me know my allocation score and where I am on the list for my blood type.

Wow. I am in shock right now. The last few weeks have been so tiring and frustrating not knowing what is going on and when it will be happeneing. Now, all of the sudden I am less that 24 hours away from possibly being officially listed for new lungs. And who knows, I might be towards to top of the list! This could all happen in a matter of weeks! I means it could just as easily be two years, but the fact remains - I finally have a direction! Of course this means MORE waiting, but its a different kind of feeling with this waiting. This waiting feels like the kind of waiting that can save your life...not the kind of waiting you do to pass the time before you hear the next hideous procedure you hafta do before you can ever get any real answers.

I feel like such a weight has been lifted from my shoulders. Dont get me wrong. I was ready and willing to do whatever I needed to. But knowing that atleast ONE part of my body, even though it is scarred and not 100% on its game, is still doing what it needs to be well enough that I get to keep it! This also means a less invasive surgery, and much less impossing scar (not that im not used to THAT already)...but its just really nice to get some good news. Especially as I sit here alone in my hospital room hooked up to oxygen and IV meds, downing cup fulls of pills, and watchin bad tv reruns.


Thanks for all the thoughts, love, and prayers you all have sent up for me, my family, and for my little 'ol liver....we thank you! Keep it up - it works!! Thank you Lord!

Much much love...
Erin