Not related to lung transplant...but had to post

Today 26 people were killed - 18 were children under the age of 10 - in Conneticut this morning in what the news is calling one of the worst school massacres in this nation's history.

Please indulge me for a moment here - for I am pissed.



First of all - it sends me into a BLIND FREAKIN RAGE at the thought of someone doing this to children. The killings of the adult victims are no less tragic by ANY means...but children? Really?

What in the HELL could a child EVER do that could make you so angry that you saw fit to SLAUGHTER them??? I mean these are DEFENSELESS children. And don't get me started on the mental scars left on the ones who survived!

Apparently the gunman was a 20 year old man. 20 years old. WHAT IN THE WORLD happened to you that mad you decide that gunning down a school full of babies was the best way to get your revenge. Un-freaking-believable. Have too many hair pulls when you were 5? Someone call you a sissy and you never got over it? Ahhh I know...it was wedgies right? It always come back to underwear up your butt.

I don't understand the minds of people. The rage, the desire to hurt innocent people. I mean not that its any better, but why not focus on the people who ACTUALLY hurt you? I mean I am not promoting revenge in anyway, but it just seems more rational atleast. John Smith hurt me - I hurt John Smith; not John Smith hurt me, I think I'll go take out little Cindy, Johnny, Jenny and Dan over at the local elementary school.

All I can say is this - there's a special place in Hell for people who hurt children. And its a goooood thing that man was found already dead. I can't imagine him getting too far if he'd lived. I know I'd join the hunt. I'm pretty sure that's one lethal injection I'd gladly sign up to administer.


I know...I get a little dark when I'm pissed...especially when my anger is triggered by someone hurting children.

And I'm not even a huge fan of kids. I love my neices don't get me wrong. I'm pretty good about tolerating most children, but I'm just not one of those mothering types. Wasn't ever really. I've gotten a lot better since I became an aunt, but still...just not a big "kid person."

But let me tell you something. I will lose my shit entirely if EVER anyone so much as looked at my nieces the wrong way. And the things I would do to someone if they ever HURT one of them...well, I won't go there. I might scare you away and that's not my intent.

 GOD HELP THE PERSON THAT EVER MESSES WITH THESE 5 GIRLS.

Secondly - the families. These poor families. To have a child ripped from your life in such a horrific way - especially here at Christmas - is beyond anything I can even concieve. The mothers and fathers, who have spent the last few weeks buying and wrapping gifts for them - some just as exciting to have their child open them as the kids are - are left to do what now? Leave them under the tree? Pass them out amongst your other children (assuming that child lost wasn't their one and only child)? Give them away? And who is gonna be in charge of THAT?! The people who, instead of organizing activities and Christmas eve services for their families and now organizing a funeral for their child? And for those who have other school age children living - how do you convince them to go back to school, knowing that's where, instead of feeling safe, cared for and protected, they will be scared to death. Images of masked gunmen appearing in the door ways, expecting any loud bag - even if its just a locker door slamming loudly -to be the last sound you hear? Images of bloodied children and teachers lyin on the floor of their school...

I don't think you could convince me to go back thats for sure.

These thoughts are just a very VERY few that are haunting me right now.

Today is not a good day people. My mind is not a pretty place to be right now.


I hope this tragedy doesn't detract from what we all know to be the Reason for the Season. His name is Jesus and He is just as appalled by what has happened today - even more so even - than we are. I can imagine that despite my dark and somewhat dangerous mind set right now, He knows my heart. And while He might be a little wary of even that right now, I don't think He blames me for my anger. I'm gonna be workin hard to get passed this in the next few days, and He is gonna hafta help me on that front for sure. I just hope I simmer down sooner than later, cause I WILL NOT let this damper my spirit and my gratefulness that I am ALIVE this Christmas and feeling the best I have in over a decade. No matter what has happened - He has been gracious with me. The least I can do is remember Him, and celebrate His birthday with a joyful heart, rather than one shrouded in anger.

So pray for me people. I'm gonna need all the help I can get on that one.

And please remember the families and victims of this senseless tragedy in your thoughts and prayers. They are gonna need even more than me. And that's sayin something...


Love & Prayers to you all -- Erin xoxo



 

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

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