Surprise! and other news

I made it through my very first bronch...piece of cake like everyone said. My mom recorded me afterward just so I could see how messed up I was. I remember being extremely nervous and shaky. They took me back to the room, took my vital signs, and the last thing I remember is the nurse telling me she was going to give me some meds to help me relax. I looked down at my picc and saw "Versed" on the label. I thought to myself "Oh, that should work" and it definitely did. Can't recall a thing and was most certainly relaxed. It took a while for the sleepiness to wear off. After the bronch, I went to lunch with my dad, brother, and stepmom at Olive Garden. It was yummmmyyyy!! Even though my terrible nausea had started right after they pulled my g tube two days before, I still was able to enjoy a little of the meal. Not long after I became pretty miserable. The nausea seemed to only hit right after I consumed things. I kept eating though because Lord knows I need to gain and keep the weight. Then the nausea became constant. So through Christmas I was sick. The entire time. To make matters worse, Mira was with me and had some sort of 24 hour virus. So Christmas Eve, SHE was throwing up constantly. My poor mom was up and down with her all day. I managed to get a little shopping in with a friend. We battled the crowds and finished up last minute stuff. All the gifts I got were amazing. I bought a netbook with the money my dad gave me for my bday and Christmas. I got NC State stuff from the F and also Eclipse (YAY!!), a purse, State jacket, and pots and pans from mom, giftcards from lots of people....the list goes on. Although it's not about the gifts. Being able to be home with family and friends was the best gift of all and celebrating my bday with new lungs was incredible. I blew out all the candles in one breath! Just amazing. My bday was supposed to be pretty low key since I'd had a bronch and we didn't know what I'd feel like later. My mom decided to meet us out at my favorite restaurant. I waited for Ron and Kathryn to get home so we could ride out there. I walk in and BAM!! "SURPRISE!!" Everyone is standing in the back room ready to celebrate with me. Apparently, my cousin was the mastermind and she was incredible. I mean, she knew I wanted to have everyone with me. Thanks to her, I did. Best cousin ever. I had no clue. Seriously. I even had someone there from rehab! Alex and her mom were able to make it out. So thankful to have met them. They are awesome. I just can't believe everyone kept the secret, lol. After all the bday festivities and Christmas with all the fam, my mom decided since I was so very miserable we should go to the ER. Since throwing up is super bad with my lungs due to the risk of aspiration, we wanted to get it under control. So I was admitted. On Christmas. It could have been worse. I could have been on o2. I've been thinking a lot lately about my donor. I've started to think of this person as someone who shares my body. It's not just me anymore. Like Stephanie Meyer's Host. This person is with me and experiencing everything through me. He/she will never die but live on through me living. Helps me deal. What a marvelous gift I've been given. There's no way I can ever give back but I can live. That's all I can do. And I will. Donor, I will live for you and for me. For now, I'm still in house. I should be leaving tomorrow if all is well in the tummy department. Fingers crossed and prayers sent! Love to all. Happy Holidays!

Latest Happenings

Hello all! Welp, my suture holding in my j tube fell completely out of my tummy the other morning. I was ok with that! I wasn't doing tube feedings anymore and the tube was just annoying me as well. I promise, this was totally unintentional. So my mom called and told my coordinator and she scheduled me to get my g tube out. I am currently tube free! Well except for my picc line. Hopefully that comes out soon as well. I'm happy for the moment. Danielle (the bestie) and RonReg (the F) also accompanied me and my mom for the tube removal. Danielle actually went back with me. It made a "pop!" noise when they took it out. Lol. Today I had clinic and that went superb. Dr.Zaas said I looked great and the xrays looked good. No results on the blood work yet. We'll hear soon though. Tomorrow is my bronch. I've spoken to two people about it and they said it super easy compared to everything else we've gone through. I'd like to have you all say a prayer for someone. Her name is Leah and there's a good chance she could or is being transplanted as I write. I heard earlier. Please keep her in your prayers. She needs this.

On another note...I can't wait to go on a cruise with my best next year! It will have to be after the wedding, but a good time indeed. I'm hopefully seeing Traci tomorrow. Man I miss her. That's about all for now. Love to all!

Update from clinic and SNOW DAY!

So my very first clinic visit went a little off course. Turned out, I had a huge pneumothorax (sp) and didn't even get to see my doc. I had all the tests(xrays, blood, pfts) and was in the cafeteria waiting for my appt time when the coordinator called. She informed us we needed to get to the main hospital because I had a big air pocket which caused my lung to partially collapse. Bear in mind, I only had minor pain in my left lung. I figured it was just related to the surgery. It required a small chest tube which wasn't too painful when they put it in, however, extremely painful once it was there and the meds wore off. So I was in the hospital for a couple days and on my favorite floor (7800). Felt like home, lol! I had my 2nd clinic visit yesterday and it went extremely well. I've picked up so much weight already. Almost 5 pounds and without using nocturnal feeds. Dr. Zaas said in a few weeks if my weight is still steadily going up, I can get the tubes removed! Oh that's so exciting. These tubes can be painful. While I was there, they took out my 53 staples (imagine if I was normal human size how many that would be!) and my sutures. So that felt better. He also took my off my iv antibiotic (yay!), a pill, and a neb. Still have the picc line until after my bronch though which happens to be my 26th bday. I'll take it. Better than being on o2 and not being able to breathe. I'm def expecting it to come back showing acute rejection because that's normal. Very treatable. I'll be sure to update as soon as I know anything. It will be a while from Dec 23rd though. I most certainly miss driving and my music and my friends. So many of whom have been supportive and there for me though. I love you all. All the prayers and such have truly done so much for me and the Lord has shown how amazing He truly is. I can't wait to finish up my Christmas shopping. Ya'll gon' have a lovely Christmas! Been getting visits from Amy, Traci, Danielle, Kathryn (soon), Katy and Mira and Sat. Busy busy! The first time I saw my little bunny (my daughter) I cried. She ran to me and just laid her head on my lap. She spent the night and I was in Heaven. She's my Heaven I swear. So people have been asking what I want for Christmas to which I answer sort of like this "what more could I ask for?". My 2 bests, Traci and Danielle, have decided getting inked and pierced is a great gift and I must agree. So we may make a day of it. Get the date of my transplant tatted on my neck then get my nose pierced. Pain? So what! Last night it snowed and now it's raining which is actually freezing rain so rehab is off for the day. Later on I'm pretty sure we'll venture out for some shopping and wrap some Christmas gifts. I'm excited! That's all for now. Love to all.

Transplant

Wow. I've been gone for quite some time, eh? So I've had transplant! I was in the hospital for about eleven days after. I would have been discharged sooner, but there were issues with medications and prior authorizations, blah, blah, blah. I wasn't ab;e to have an epidural so I went through quite some pain for a while until they figured out a good regimen for me. I'm now out and living amongst the Durham folk. Going to rehab every weekday, unless I have a clinic visit. Thanks so much for all the prayers. Everyday seems a little better. Coming out on the other side of all this is incredible. I've had so much support from friends and family it's just amazing. I managed to have one person sneak a pic in right after my surgery. It's not that clear, but it's right after. They were pretty strict about that stuff. We're sneaky sneaks though! LOL. I'll write more later. Love to all.

Great news all: we've solved the enzyme issue! I had been taking 9 Zenpep to have it barely work at all. See, I'm a bit different. I open the capsule and empty the content of it onto my tongue. I have no problems with taking any other sort of pill...just the enzymes. I know the only other alternative is Creon. So I finally told my doc and transplant coordinator and the switched me to Creon. Creon has way smaller contents. It's almost practically crushed so that's fairly hard to adjust to. I'm dealing though and my stomach is doing better. I was supposed to receive a phone call about my status for transplant by this past Friday but of course no information ever came. I left a message with Lauren, the coordinator. She was out of the office Friday so I hope I know by Monday. I'm currently sleeping with 02, doing an albuterol nebulizer every 3 hours, doing activities on o2. I can't stay off of antibiotics. They've switched me from Meropenem to Ceftaz. That doesn't seem to be working either. I feel we're at the end of the rope here and no one is taking me seriously. I AM sick for Pete's sake. I run a fever pretty constantly lately. Rehab has been great but today was a bad day. I've been exhausted and had a fever for most of it. On the up side....I bought my wedding dress Saturday!! It's so beautiful and different....very me. I can't wait to walk down the aisle in it. Waiting is the hardest part! Last night me, mom, and Andy took Mira trick or treating. She totally has the hang of it and definitely loves candy, haha. She was a pirate. So cute. She's so grown lately. She hugged me bye and says "I love you baby." Really? Oh goodness. I'll update soon. Love to all.

It's been a long while since I've updated. I've had the nissen surgery along with a j tube added to my g. It was a rather long recovery. I didn't want to eat for a long time. Had very bad nausea. When I was discharged from Duke, I came home and just slept. All day, all night, everyday. I didn't realize until after I was out of it, that I was depressed. My emotions are so up and down its insane. Seems like the Zenpep isn't working so well for me. I may need to switch enzymes yet again. I don't care anymore what brand it is....so long as I can start gaining weight. I'm currently down to about 87 lbs. I'm finally able to eat normally again, although my tummy did shrink so I can't eat nearly as much. I went wedding dress shopping yesterday! I do believe I've found "the" dress ;) Today was the last day of the fair, so mom, Mira, Demetrius, his mom, his neice, and I all went. I just wanted to see how Mira acted her first time out. She LOVED it! She's a little dare devil like mommy. I was so proud. Welp, tonight I'm just relaxing with the f and resting up for rehab tomorrow. I've finally completed ALL the testing for transplant screening. Tuesday the team will be discussing me and Fri I should know the verdict. So for now its get through rehab and gain weight. I'm ready for my second chance!!

Fall Finds

I came across some photos that were done for me for free about 2 years ago. Man, I wish I could wake up and look this good! LOL. I'm always bummin it in this hospital.

Way Seven: Accent

Ron Regular: How do I love thee? Let me count the ways.....7: Your Accent. I love thee like grandma loves her porch swing. I know I make fun and emulate the country accent. But the reality is is I love it! I love all accents. Always have. But there's always been something about a beautiful woman with one. And wouldn't you kn...ow it, I have a woman with a southern accent, who's absolutely breathtaking, and wants to only be with me. Talk about blessed. Amazingly enough, I had no clue you were that country until I met your mom. Wow. You could call it an awakening. You know what though, if this is my awakening I never want to go back to sleep.

September 30 at 12:58 am

Way Six: Dimples

Ron Regular: How do I love thee? Let me count the ways.....6: Dimples. There is nothing I think sets off your gorgeous smile like your dimples. Baby, you smile or make a poppysmic type movement with your mouth and I am putty. You have the most amazing dimples. I wish there was a way to bottle you and take you where ever I go. Your dimples are so friggin hot.

September 29 at 12:04 am

Way Five: Attitude

Ron Regular: How do I love thee? Let me count the ways.....5: Attitude. Your way of looking at things is constantly challenging me to be a better man. Your strength is undaunting. When you have your mind made up it is set in stone. Good or bad. You continually surprise me and make me proud to be your fiance. You are a fighter, a l...over, a nurturer, a comic, a mind changer, a listener, and an academic. All these things solidified by your ability to excel, improve, and create. You constantly surpass what I expect of you. I can't wait to see whats next.

September 28 at 1:10 am

Way Four: Laugh

Ron Regular: How do I love thee? Let me count the ways.....4: Your laugh. I don't even know how to explain the joy I get from hearing your laugh. I am so blessed to create the sweet sound of laughter with you daily. For some reason you think I'm funny...or a damn fool. either way your laugh makes me the happiest man in the world.... Its fitting that the other "ways" tie into this one as well. Eyes, smile, and unfortunately cf. The deep gut busting laughs are my faves. When I'm hopping around the house or bending over in front of you (that happens often and in a variety of ways LOL) my heart is full because I know you are happy. I waqnt our life to be full of laughter, joy, smiles, and happiness. The love we share is stronger because we can laugh together. I will do everything in my power to make sure you are continually laughing. It is truly the most beautiful sound to me.

September 27 at 12:28am ·

Way Three: Eyes

Ron Regular: How do I love thee? Let me count the ways....3: Your eyes. They say the eyes are windows to the soul. Its true, but I can see in my soul when I look into your gorgeous blue eyes. I see the man I need to be and want to be for you. I also see unparalleled beauty. I see joy. I see your hopes your dreams your fears yo...ur love and your strength. I love that I can see you. And with those gorgeous blue eyes, I love that you can see me....thru and thru. I love you.

September 26 at 1:29am

Way Two: Smile

Ron Regular: How do I love thee? Let me count the ways......2: Your smile. I love your smile! It is radiant and always makes me happy. The dimpling of your skin, the joy in your eyes, the curl of your mouth, and the complete gorgeousness of my Love. It's shows me your innocence and your thoughts, it increases your beauty(makes i...t hurt you are so damn fine) and is infectious. Your smile makes my heart leap, stop, and speed up all at the same time. Not healthy but very welcome.

September 25 at 1:36am

Way One: CF

Ron Regular: How do I love thee? Let me count the ways......1: This may sound odd to you, but way one is your cf. Your cf sucks, BUT it also has made you who you are. I love that it has created a strong, sensitive, and pragmatic fighter. I have always been drawn to you. It's your nature mixed with your genetics that has created the... most perfect and amazing thing in my life. I am ready for a full life perfectly imperfect with the woman engineered just for me. I still don't understand a lot but I am willing to learn about it all. Cf, you, your family, your everything.

September 24 at 1:59am

How Do I Love Thee?

Ron Regular How do I love thee? Let me count the ways.
I love thee to the depth and breadth and height
My soul can reach, when feeling out of sight
For the ends of being and ideal grace.
I love thee to the level of every day's
...Most quiet need, by sun and candle-light.
I love thee freely, as men strive for right.
I love thee purely, as they turn from praise.
I love thee with the passion put to use
In my old griefs, and with my childhood's faith.
I love thee with a love I seemed to lose
With my lost saints. I love thee with the breath,
Smiles, tears, of all my life; and, if God choose,
I shall but love thee better after death.

September 23 at 1:37am

Could it be? A functioning tummy??

As many of you may know, I was under the impression I was getting my g tube switched for a g-j tube yesterday (Monday). A phone call from Edana the day of informing me it was just a clinic visit with the surgeon kind of left me baffled. All this time (over a month!) I had been planning on this nissen and tube replacement surgery only to be told it's just a clinic visit. Wonderful. I had left a message for Edana on the office phone about starting some IV meds because I'm short of breath and my chest is getting ridiculously tight all the time. Definitely time for a clean out. Since I didn't have surgery, she reserved a bed anyway to start me up on IV's and then send me home. This is all BEFORE my clinic visit. Yes, I fell apart upon hearing I'd be admitted even though I wasn't getting the procedure done. I was most certainly in a foul mood on the ride to Duke. The visit with Dr. Perez was fairly quick, although the new information he gave us was very unexpected. With transplant, I will require a nissen (wrapping of stomach around esophagus to reduce reflux). Since they're replacing my g tube with the correct one so I can start doing nightly feeds again to gain weight, Dr. Perez thinks it will be better to just go ahead with the nissen now. When I get my new lungies, the chance of reflux will be even less since I will already have the nissen done. Dr. Perez also mentioned cutting my pylorus to allow liquids and solids to fall into my intestine. There's no point really in getting the nissen done if my stomach won't move my food into my intestine. Obviously, if I become too full, things will reflux and I'll aspirate. So the decision has been made to do all 3 surgeries at once. Nissen, pyloroplasty, and g-j tube. Big day, right? Supposedly (I use this term because the lines of communication are constantly getting crossed in here) I'm doing my final test tomorrow (solid gastric emptying) to reconfirm that my stomach empties hella slow. Docs love to schedule time consuming and painful tests unnecessarily it seems. I mean, it's practically set in stone that I'm for sure having all 3 done at the same time. Whatev. Gives them something to do. Another test to analyze.

Let's move on to something other than hospitals and cf, shall we? My outstanding fiance has posted 5 (so far) incredibly sweet things on my facebook wall. I am going to copy and paste them in order one at a time on my blog. If you don't know him, he's just marvelous. He does whatev it takes to make me crack a smile. Never have a known a man to love so openly, willingly, unconditionally as he. I'm so blessed to have this man that constantly makes an ass of himself just to get my lips to form a smile. I don't deserve him. I wish I felt half as good as he is. Why he chose and continues to choose me, I'm not sure. I love him with all I have.

Yes, I'm 25 and riding on a kiddie ride with my daughter!

Me and Miracle in the 'copter ;)

The worst part is the little sting....RIGHT.

Today is my best friend's 18th birthday. She is so special to me. Everyday I'm proud of the woman she's become and will continue to grow into. Welp, yesterday was pretty horrible. Actually I'm just referring to the part where I had a tube run through my nose and down my throat. Yeah, not fun. I went in as calm as possible. I mean, how bad can it be?? They sprayed my throat (which had me gagging BEFORE they even started feeding the tube through), swabbed my nose; both to ensure I was numb in those areas. Well I wasn't numb. At 1st the tube stung a little but it was definitely bearable. She told me to let her know when the tube was in the back of my throat. Words weren't necessary. My gag reflex and the vomit that followed was a pretty good clue. The tech would stop when I gagged, wait for me to regain control, then try to move the tube again. This was just strenuous and rather repetitive. What I needed was for her to push the tube down regardless of my body's need to clear what it thought was choking me. The other tech decided to take over and informed me to just swallow as much as I could and she was going to just keep feeding the tube further down until it ended up where it needed to be. We finally got it in place about 10 minutes later. That's 10 minutes of constant gagging and throwing up and coughing. Then it was easy. Sip water, swallow. Sip water, swallow. Repeat until it's been done 10 times. Then out came the tube. I felt so traumatized. Never in my life have I been so shaken up over a test. Honestly, I thought this would be a cake walk compared to some other stuff (like 23 tubes of blood at 5 am)...but I was sorely mistaken. Note to self: Do NOT wear make-up when doing a test like that again. My whole face was covered in black streaks and all my foundation was gone. Completely. My entire face swelled and it looked like I'd been crying for hours. I was completely wiped out after that. I had a ridiculous headache and just wanted to sleep. My mom and I left and I got groceries. Sadly, this is a task I can no longer perform alone due to my lack of air. Afterwards, I went to pick up the little from daycare and from there we met up with my friend, Kassandra and her friend Meghan, and grabbed a bite to eat. We went to Khanki. Mira was pretty happy with it this time. She stood up in my chair and would yell "I SEE IT!!" in reference to all the smoke when the chef was cooking. She was still a bit unsure of the fire, but she didn't cry. Miracle ate about half of my rice (which was a TON because I didn't get veggies. Meaning I got extra rice.) Kassandra wanted to walk around a little after, so I took Mira to the little kiddie ride area. She would walk up to one ride and act as if she wanted to get on and then say "I don't want to ride." Needless to say, it got a little frustrating. I finally was able to coax her into a helicopter WITH me. That was a funny picture. I'll try to load it. Then it was home with mommy, movie time, then bedtime. Twice she fell out of bed and just had a fairly restless night's sleep in general. I was absolutely exhausted today. I spent the day resting as much as possible. My lung function seems to have gone down. My chest is getting tighter and tighter. I'm almost positive it's time for antibiotics again. Monday I'm getting my g tube replaced with a g-j tube (finally). It requires an overnight stay and more pain in the tummy area. Yippy. I just keep reminding myself one day it will all seem small compared to the amazing life I'll live after my new lungs. It will be like being reborn. I'll think of things in relation to when I got transplant, not in relation to my actual birth. What a marvelous time that will be! Love to all.

Almost!

I'm on my last station at rehab. The darn NuStep. I hate this machine. So monotonous. 6 minutes! I met someone named Melanie with cf who's closer in age than most other people here. Most people here have pulmonary fibrosis or emphysema (sp?) or something like that. A lot of seniors. Several youngins. Melanie's a sweetheart. Then there's Jessica...really quiet and keeps to herself. I've just recently learned her name. Good news. One of the women here was listed for transplant on Friday! Wonder when she'll get the "call"? I'm super shocked I stayed. Every fiber of my being wanted to walk right out the door about every 3.8 seconds. I didn't though. If I leave, how badly do I really want transplant? Not badly enough. I can't give up. I have a daughter to raise. I have friends to support and family to love. 2 minutes. There's a guy here fresh outta transplant and he looks awesome. Moves pretty slow, but he can breathe, lol. I can't wait for that to be me. No more tubes coming out of random parts of my body. I can wear whatev and feel awesome. No weird bulges under my shirt. When I tape up my feeding tube, it looks like I have a smiley face under my shirt, haha. That's nice and all...but the only smile I want to show off is the one on my face ;) DONE. Dueces ya'll.

Rehab

So I'm at rehab right now waiting to be checked in. I really don't want to be here today. Really. The chicken plate sale Saturday went absolutely phenominal. We sold out of all 400 plates within 3 hours!! Raised over $3000 ;) How amazing that was. Ron and I went to Lungapalooza yesterday which was just pretty boring. Next time I think I'll be sure I can do the actual walk before going. I had some stuff come up last night (completely unrelated to cf) that is making me question my relationship. I just don't know this is the right thing. I'm at a loss and not sure what to do. My mom is picking up Mira and she's spending the night with her tonight so when I leave rehab it's straight home to the couch for me. I've been so exhausted lately. The work my body's doing for my lungs right now is wearing me out. Put that on top of rehab, busy weekends, and just small everyday stuff and I'm constantly fatigued. This too shall pass. One day I'll have new lungies and will be running circles around everyone. Just a little longer. Just another day. Just another hour. Just another minute. Just another second. When I feel the thought of one more day is unbearable, that's how I break it down. I can obviously survive one more second. Then I go from there. Maybe I'll write more later. Maybe I'll be sleeping. Who knows?

Eva's Story

I decided to let the emotion in tonight. Reread Eva's story. I've been crying for about an hour. Wow. God help me...

Breathe It In

I know we aren't supposed to question things but I am right now. WHY?? Why her? My fiance's bestest has health problems and they aren't minor. She is such a marvelous person and so caring. Seems to me like it's always the people that deserve to live the most that have so many options taken away. Poked and prodded, being a guinea pig, numerous medical tests and still being partially clueless. WTF?! Sometimes, life just pisses me off. So many people are so ungrateful for the simple things. I won't delve into what these "simple" things are, but I'm sure you can figure out what I mean. The way I try to see it is: Most people don't have a terminal illness. Meaning, they don't treasure every little moment. I have been blessed to experience what it's like to know how a big of a deal it is to see my babygirl smile. To have a man love me and all that comes with me. To have parents that are always on my side. Having friends that know what to do/say when things get rough. A family that will always pull together if needed. The sun on my face. Wind blowing through my hair. Making snow angels. Dancing in the rain. These things I cherish. All the others like me do as well. At the end of the day, Kat and I have a lot in common. I can come to her upset and she for the most part knows what I mean. She gets so much of what I'm experiencing. Just the unfairness of it all. We're beginning to lean on one another and I'm so thankful for her. No one likes to have a normal life choice just ripped from them due to an illness. We fight. That's all we can do. I fight for me. I fight for her. I fight for us all. Don't take one single moment, no matter how miniscule it may seem, for granted. We don't.

Longbranch Event II

Longbranch Event I

Stupid technology

Grrrr....I'm throwing in the towel on the collage business for now. Getting slightly frustrated. The Longbranch had a decent turnout for our fund raiser. We raised quite a bit of money and everyone had a great time. Last weekend was a yard sale and that was absolutely incredible!! This weekend is the chicken plate sale.....right around the corner. Whew, I know everyone's ready for a break. Rehab has been going fine since I've gone back. Stayed out for a while because I just feel such overwhelming emotions when I'm listening to the lectures. The working out part isn't too bad. I know the doctors just want us to be very educated on everything that goes on but dang....it freaks me out tremendously. I was able to keep Mira overnight on Tuesday! My mom came over and we all had dinner together. It was great family time and the little was loving her very own room. She wanted to stay upstairs, lol. Sorry I can't write much more than that right now because I have to go pick her up from daycare. Love you all!!

Collages

Oh jeepers....please bare with me as I try to figure out how to do this collage thing....

The Week's Events and SHOWER

Maaaan!!! Sorry for the week break followers! I've started pulmonary rehab....it's not that bad. Mostly I'm just bored. I'm not nifty like most other people who carry around their iPods and such. I have a solitaire game...which I did NOT bring and a blackberry which is essentially good for nothing. So I was bored out of mind most of the time. Only 23 sessions though! Tuesday was great because Ron and I hung out with his parents. They played wii and the laughs were just endless. I swear I'm the luckiest girl in the universe to be blessed with wonderful future in-laws. I can't wait to be Ron's wife. Gah. Not much happened the rest of the week. Friday night was pretty awesome. Ron and I decided to go to Karaoke night and I talked his best, Kathryn, into coming with. It was a blast! So nice to have us all hanging out together. We were all happy. Ron took me to see The Last Exorcism....it was good until the end. WEIRD. Left questions in my little dome piece. Sometimes it's not that difficult for me though...sadly. Today was the fundraising meeting. Still have a lot to get done but we're slowly but surely making progress ;) Having the family be so incredibly supportive is wonderful. Traci drove from Asheville straight to the meeting! That's about 3 hours! Kristina decided to come without her mom at first (I think) and then her mom wound up coming. I love having so much support. My papa taught his children well. He taught them to ALWAYS be there for one another. Even though he's no longer with us, his lessons and wishes are still living inside all of us. How marvelous. After the meeting, Danielle and I decided to eat at CrazyFire....can you say YUMMMYYYY??!! Oh my it was so delicious. NOw I'm just hanging at the house waiting for Ron to get off of work. My oh my I love that man. OH EM GEE. So today as I was going to take my shower to get ready for the meeting I noticed my shampoo was turned upside down....again. NOw, the roomie can use my stuff, as long as she asks. Recently my nerves have been worn pretty thin when it comes to her and that could just be me being me...because that's just how I am. It really ticked me off though. I'm broke as crap and her using my stuff means it will be empty twice as fast. I also noticed that my poof was on the floor of the tub upon turning on the water. I have noticed that's generally where hers ends up after her shower....meaning she probably used that too. That is crossing the line. FOR SURE. I mean, gross. How about you have some respect? This is just one little thing on top of many others. I've just had it with this chick. If she doesn't leave soon, I'm going to snap at her and I'm sure it won't end well. She never pays her rent on time is short with it usually and this wasn't even supposed to be this permanent. She was supposed to have been gone already. UGH. Ok that's all for now. Love to all.

Not Me Monday

This past week I did NOT: go drop my daughter off at daycare still in my jammies without having brushed my teeth. Not at all. I did NOT skimp on a shower because I still looked really great (and didn't smell either!) and just threw on a double coat of deodorant because of the extreme heat. I did NOT keep eating my food even though I knew it most certainly could mean losing it all later due to my stomach issues. I did NOT by any means drive to the Kmart across the street and unload the trash from my car into their trashcans sitting outside the front doors.....while being parked in the fire lane. And today you would not have caught me wetting paper towels to clean my daughter's diaper bum because I was too tired and out of breathe to walk all the way to the car where I had forgotten them. Not me. Never.

Day Off

Another weekend over. Friday night I basically unloaded everything that I've been feeling onto Ron. I've held a lot in and didn't really know what to do with all my feelings. I don't think I'm quite ready to discuss it in depth here...but soon. That's part of the healing process. I've been able to eat more than once a day and also am keeping it down! Amazing progress! I badly need to reach the doctor about that drug, domperidone, so I can hopefully start eating like a normal person soon. Saturday was pretty good. Spent the majority of it with Mira, my mom, and Andy. Dropped off my wedding dress at the consignment shop. That's pretty exciting. The owner said the only issue may be finding a girl that can fit into it! I'm sooo tiny :( Watched movies that night with Ron and just enjoyed each others company. Sunday I went to church. I met my mom, Mira, Trish, and aunt Maria there. Of course you know I cried during the very first song we sang! Darn emotions. And continued the tears throughout the service. My emotional state is just so very fragile all the time. Miracle looked at me and furrowed her brow like "Mom! What in the world??" Shortly after that, she was snoozing hardcore in aunt "Rena's" (Maria) arms. Slept through the entire service. Andy wound up popping in midway, which was nice. After church let out, we decided to have some lunch. I FINALLY got my Smithfield's Chicken and BBQ fix! Oh man....was it delish. Demetrius met us there to get Mira and she was chowing down so much, we sent her with a plate for the ride home! I tell ya, I love seeing that skinny minny eat. Does my heart good. After that, it was on to the fundraising meeting at 2pm at gmas. It was a great meeting, even though a lot of people were absent. We're really moving along :) I got to see the best which was bittersweet because we didn't have time for us really. Soon I'm sure! Then it was back to the house. Today I had Mira all day long because her daycare had a teacher workday. I was trying to plan something fun we could do that didn't involve us being in the heat, so I decided to take her to a kids museum. How about it's closed on Monday's?? Ugh. So we had lunch at OG (Olive Garden) with Amy, whom I haven't seen in FOREVER! Then we zoomed over to Target so I could buy her a movie to watch. Something other than the kids shows I have to endure when she's here. I picked Open Season....I thought she hadn't seen it and since she can quote Madagascar by heart, I figured it'd be right up her alley. I turn it on....and she immediately starts talking along with the movie. Fail. Her daddy already has that one. Oh well, lol. She loved it and that's all that matters really. She fell in LOVE with a Dora book that has this little iPod looking thing attached to it. It plays songs and the book has the words to read along with it. Of course I HAD t buy it! She was playing with it the entire way back home :) Had quite a late nap and didn't really want to get up. So now...I have down time. I won't have much from here on out seeing as how we have events for the Breathe Easy fund nearly every weekend and I'm starting pulmonary rehab tomorrow. Wish me luck! Visiting with the soon-to-be in laws tomorrow night. I'm pretty excited! Love to all!!!

My Weekend

Last night was very uneventful. I find myself really hating to be alone. Maybe it's because I feel my time is so limited. My mortality has creeped up and slapped me right across the face. Recently I thought about how nice it was at my mom's. At least there was always someone up in the mornings with me and I had Mira. Not that I don't LOVE it here with Ron....I suppose there are lots of reasons for my unwillingness to be solitary. Not having Miracle 24/7 is one. Having no money, which makes me a hermit for the moment. Everyone having a job and working, as if they need money to survive, wth?? LOL. I decided tonight Ron and I should go do something. I believe we'll be kicking it at Downtown Bar and Grill for a bit. It will just be nice to get out together. We haven't done that in forever. Then tomorrow night, we're going to the movies! Excitement indeed. I'm pretty sure tomorrow I'll be over at my mom's visiting with them and Mira because she's keeping her Saturday night. Then Sunday, we're going to church. I personally can't wait to go. I really hope the Lord speaks through Martin and gets through to me. So far, the only place I feel at home at and I really get the message is at mine and Meet's old church. Awkward....haha. Hmmm, OH! Sunday night going to Les' Mary-Kay party at 8 pm. Should be fun :) Just wish I had some dollars to buy something. Soon enough. Today I applied at Wake Tech for Medical Billing and Coding. I have to do something. Sitting around is really killing me at the moment. Also, Monday I start pulmonary rehab. Yay! I'll probably write more later. Love to all.

Typical Goings On

The rest of last night went well....other than the pain I was in from moving around so much! I'm so used to sitting in that bed at the hospital all that activity yesterday had me sore. So my dad came over to visit and we went to Kmart for a few house things I needed and then we went to the mall (in the pouring rain I might add) so I could return some pants. How about I definitely walked right by the store I needed to go to all the way to the end of the mall AND went to the 2nd level only to figure out I passed it already. A long time ago. Geez. When I finally got to the store, they tried to tell me they couldn't do the return. Well, at 1st I was ok with it, mainly because I was hurting so badly. Then I realized, no way! This most certainly wasn't even my fault. So the manager let me slide and gave me the return. Then dad dropped me off and I ate some more, weighed myself (90 lbs!!) and waited for my love to come home. This morning I had to take Miracle to the doctor because she's had a little cold for about a week now. The doc said no biggie just keep an eye on it. After that, me and my om went to Cook Out...flippin YUM...then came home and finished up Kick Ass. Such a great movie. Lots of cussing and violence, but great movie. After that, it was off to the pharmacy for me to get my enzymes and some benedryl for the little. How about my cousin didn't even realize I was out of the hospital?! I mean, she just started college and she's working full time so she has a ton going on...on top of dealing with my fundraising stuff. She works at the pharmacy and when she saw me she was a bit surprised, lol. I totally can't wait for September 5th. BIG event through Lazyday.com for me and fundraising at the Longbranch in Raleigh. It's going to be awesome! Mad props to Tommy who's organized all of it. I hung out with Katy for a bit today and picked Mira up early. Mainly because when I dropped her off she had a fit. Tore me up, I almost cried. I hate that she seems to not like daycare now. I know she'll adjust. She's going through so much and isn't able to put into words how she feels and doesn't know the first thing about how to deal with what's going on. Poor thing. Now....I'm just washing clothes and chillin. Getting on the scale again in a few. I got an email today saying I have an appt on August 31st for testing (something about the tummy wrap no doubt) and then another appt for surgery on September 27th. Maybe I can be 100 lbs by then! Pray for me!!! I'm definitely working hard on it. Tonight is movie night for Ron and his best so I'm alone and missing him quite a bit. I think I'll surprise him and ask to go to karaoke tomorrow night. I know he'd love that. Love to all.

Home Again!

Welp, I managed to annoy my doc enough for him to let me go home last night. He wasn't very pleased with me but did tell me he tries to be accommodating to his patients. His intern informed me that the surgeon that is said to do the g-j tube placement also would like to do a tummy wrap at the same time...the medical term is a nissen fundoplication. That was a huge shock to me but I can sort of understand only wanting to open me once for a stomach issue. The dr. isn't quite sure it's the best route to go. So he sent me home and I'm anxiously awaiting his call for instructions. Last night it was great to be home. The lovely Trish and Shane took me home, thanks guys!! I got to sit on mine and Ron's new couch and shower in my own bathroom....it was wonderful. Even though I'm sure I'll be back in shortly, I feel it was worth it. Today Miracle's daddy dropped her off with me around 8 am and I took her to daycare. I missed her so much. He asked that I make an appt with her dr. because she's had a cough/cold for a bit now and he just wants to be sure all's well. So tomorrow morning at 10:10 that's what me and momma are doing. Ron and I got some grocery shopping done and went to Lowe's where he bought me and Mira 2 separate hampers for our clothes. Ya know you're an adult when that gets you excited. "YESSS!!! I can keep me and my daughter's clothes separate now!" Hilarious. So now Ron's gone to work and I'm counting down the time to go get the little from daycare. Maybe going to see Katy later. Love to all and I'll update when I know something!

GOING NUTS

SO I had my barium swallow test done today...at 2 pm. Turns out I have reflux! I knew this already but we needed proof and the paperwork for it. The barium was atrocious. Definitely almost threw up on the equipment, lol. I also found out that the culprit of my nausea is due to my stomach not working properly at all. It doesn't really contract to push my food down to digest it. So my food just sits and I get nauseated. There's a medicine that is not fda approved that I will start taking to help correct this problem. It's similar to reglan, but not as hard on the patient. It's called domperidone. You can get it in Canada and it's relatively cheap. I can't wait to be able to eat and keep all my food down. I swear cf affects everything. Absolutely. When I got back to my room Ron told me he had to leave to get ready for some stuff at home. I just realized I can't stay any longer this time. I just can't. I'm going crazy. I talked to the docs and they told me if I'm not on the schedule for g-j tube placement tomorrow, they'll let me go. Pray!!! My last IV med is at 6 pm tonight...but when you're on here, they make you keep IV access for the duration. So, I'll still have my needle. Gosh I'm sick of this bed, this room, these interruptions....the list goes on and on. I need my Miracle. NOW. I miss her so much. I know she misses me too. She has to have some sort of feelings going on and be confused about where I keep disappearing to. Being only 2, that's tough. For now, the lovely Trish and my redneck Shane are on the way. I feel like the bestie has slipped away from me. College and all that. Super glad she's having fun and enjoying her experience so far but I feel a little down. Oh well. She knows I love her. She has a wonderful head on her shoulders and I know she is her own woman. I'll update later if something changes. Love you all.

Lifted High

Another day in the hospital! I was told that I couldn't eat or drink anything after 12 am last night for a liquid gastric emptying "sometime" today. LOL. That sounds promising right? So I was wheeled down there and swallowed nuclear apple juice and got scanned after 1 minute, 5 minutes, 15 minutes, 30 minutes, 1 hour, and 1 hour and a half. Whew. Definitely not invasive but sort of time consuming. I saw the dr. today and he's still singing the same tune. Not really wanting to place another g-j tube. Grrrr. We'll see what the test says. Oh yeah, after I'm down there the tech tells me the longest I should have to go without eating or drinking is 4 hours. Hahaha. Good stuff. I went about 12. Tomorrow morning I'll do the solid gastric emptying which is done with nuclear eggs. Exciting indeed! Ron's good friend Tommy is doing an event for me at the LongBranch on September 5th. I'm definitely going just to mainly be there because it's being done for me. I'll probably speak on stage after all the excitement. Should be a fun time. Weird with no drinking but it's not good for me anyway. Yesterday was kind of a down day. I ate a marvelous breakfast (eggs, potatoes, cheese biscuits, AND tomato gravy) only to throw it up later in the day. I felt defeated and trapped in this room. I wouldn't take calls or text people back. I'm lots better today though. Smiles and all! Just had a wonderful conversation with the social worker. He's pretty chill. My doc informed me today that I'll get one more day of IV's then I'm off until the next flair up!! Hopefully it will be longer this time. Now if we could just figure out the tube issue, we'd be golden. Mostly, I just want to be home. My feeding tube is no longer giving me pain and I'm willing to go through another placement. I think my dad is trying to visit tonight :) I'll keep updating as news is available. Also, I'm posting a picture of my super heroes that are fundraising for me. Love you all.


My team of Super Heroes!!!

My Ring

My ring! Trust me, this picture does not do it justice. It's not a diamond due to the fact that I don't like being average or ordinary. I specifically told him early on that I don't dig diamonds. The band looks almost like a crown, which is perfect because he calls me his Queen. Man, I love him. I must say, he did very well. Thanks to the girls who helped as well: Danielle and Kat. I love you guys!! I'll try to get the proposal video up here somehow.

New news.

Welp, turns out the infection my dr. thought I had...wasn't an infection at all. It was actually intussusception. That is the telescoping of one segment of intestine into another. Yep. So they decided to pull out the g-j tube and replace it with just a g tube. Upon putting in the new g tube they flushed it with contrast to see if by pulling out the old one it had pulled the intestine back to the way it should be. Today I got the news that my intestine is good. Started me out on a liquid diet yesterday and I've moved on to full liquid today. Tomorrow I've heard I can go back to a regular diet, which is awesome....because ya girl is HUNGRY!! Other things to discuss: my dr. is not liking that I'm struggling so much already with another lung flair up and the tube issue. This is my 3rd feeding tube. He feels we just need to get the ball rolling asap on transplant. I guess he's trying to convince the transplant team to move forward with me anyway. Pretty scary stuff. See, transplant wants me to have a g-j tube. It's better because the j tube goes directly into my intestine while the g tube goes to just my stomach. So now I have a g tube, meaning the possibility of severe reflux and aspiration are likely. The dr. is setting up a gastric emptying study for me to see how my reflux does and see how my tummy empties. This will determine whether they even want to try doing tube feeds with the g tube. I already deal with lots of reflux so I feel the g tube is not a good idea. If I do require another g-j tube, the surgical team will be performing the procedure. Gah. So.....I'm a fiance now!! My marvelous bf Ron popped the question the night before I was set to come into the hospital. Took me by total surprise. He's such an amazing person. I thank God everyday for sending him my way. I didn't know love could be this wonderful. I feel like he loves me unconditionally, which is typically saved for moms and dads ya know? I pray the Lord stays strong in our relationship and stays with him for the tough road ahead. I know it isn't easy. I had visits from my mom, cousin Traci, and her mom Sissey today. It's been slow but that's better than being poked and prodded! My bestie is going off to college on Sunday :( I won't be there to see her off and I wish I could see her over the weekend before she goes. Goodness....I'm tearing up already. That girl has been such a rock for me. She is truly the best friend I've ever had. Such a big heart and just as silly as I am. I love her smart-assness (yep, you see it) too. She's just incredible. I love you Danielle and I know you will do amazing at college. Everyday you make me proud. I'm out for now. Love to all.

EXHAUSTED

Wow. Yesterday was indeed a long day. Got to Duke around 9:30 am and left about 6 pm. I am NEVER agreeing to that many appts in one day again! The 10:15 am bone density scan went fine, although I don't know the results yet. After that, it was the "What to Expect With Transplant" class with my mom at 11:30 am. Very informative and I'm super happy they have these classes for us. It was an extremely tiny room and all of us in there were pre-transplant. Most of them had their lovely o2 in haul and you could hear the whistling from the air and them breathing in and out. Then came the coughs. All of us are so used to it we all just sat and acted as if nothing was going on....because to us, nothing IS going on. How wonderful it was to cough and clear our throats with no worry of people glaring like we have some contagious disease and without hearing "Are you ok??". I know some people mean well and we definitely sound awful when we get way into the deep coughing, but it does annoy us sometimes. I felt so at home. These people know me without ever speaking a word. So comforting. Next, it was on to the cf appt. I was given a chest x-ray which I'm assuming is the same as always, bad, lol. The dr. had a serious conversation with me about how I LOOK very healthy in person but on paper, I'm really sick. Getting out of breath really bad again, can't seem to stay off of IV's. Bottom line, I HAVE to gain this weight and complete rehab. Transplant is a huge necessity right now but I can't move forward until the weight gain and the rehab. A little added stress but what's a little more, right? Also, I addressed the severe pain I STILL have over a week after the feeding tube incident. He determined it's cellulitis, an infection. Jeepers! So he started me on an antibiotic and told me if it doesn't seem to be getting better by the close of the weekend, I will be admitted. So let's all pray it gets better. Did a little walking to assess my ability to keep my sats up. I did pretty well. Whew....still had one more appt with the transplant doc. So we headed over to Duke South. Btw....the hallway to get there from the parking garage is HELLA long. I decided against a wheelchair on the way in and definitely was singing a different tune on the way out! We were wating forever and to pass the time they decided to draw some blood and attempt to get a blood gas. Blood gas was a bust and extremely painful. Thankfully, the RT isn't into torture and since she didn't get it the first try, she let me off the hook :) I was scheduled for yet another x-ray and another breathing test, but since I had JUST had those, I got to skip it. It's the little things. Finally, the dr. was ready for me. He pretty much reiterated what my lung doc said about it being crucial to gain the weight and finishing rehab. So....those are my goals. Today all I did was rest. I was so worn out from yesterday. I have to ready for this weekend! LOTS to do and man am I excited! Photoshoot with the best, shopping more than once tomorrow (HECK YESSS!!!), and Sunday is the fundraising meeting and then girl's day with the best and the rents!! How fun :) That's all for right now. Love to everyone!!!

My Life

Just wanted to post a new picture of my babygirl, Miracle Jade. She makes it all worth it. My main reason to continue this journey and fight so hard. It's all for you baby.

Back to happy April?

So, I've had a rough couple of days. Just been kind of down lately because I wish I was ready for transplant. Even though it's scary the waiting really sucks. I had Mira for a night and just realized I'm still not healthy enough to keep her full time. I had to ask her daddy to continue keeping her. He of course had no problems with it...he's been great through out this entire thing so far. She got into daycare and we decided he will drop her off with me in the mornings and I will be the one to take her back and forth to daycare. This way, she can still spend some time with me. Not my ideal situation but better than not seeing her at all. She's just incredible. She's been singing and just being the big personality she's always been. Ron got a video of me picking her up from her first full day at daycare. I'll try to post it later :) Yesterday Ron and I went on the hunt for a couch. We found one we both really like so I guess he'll be getting it sometime soon. Then on to an area rug, a floor lamp, and other decorations!! Can you tell I'm excited? Gosh, I'm such a grown-up. LOL. I was in quite a bit of pain last night and this morning. Somehow managed to have an upset stomach as well today so that was no fun. Now it's approaching nighttime and I'm waiting on a visit from my dad. He visits more lately. Tomorrow= BUSY day. Three appt in Durham. CRAZZZYYYY!!! I'll be with my mom the whole time though which is a relief. I really don't know what I'd do without her. The madness doesn't stop there. Tax free weekend which means (DUH), I'm going to SHOP, Sat I have a photoshoot with the best, Sun we have the fundraising meeting then after that the girls are getting mani/pedis. Fun filled weekend. Can't wait! I'll be posting pics.

Tubes and Such

Whew. So I HAD my little Mira back for a couple of days....then my feeding tube became clogged and I had to go get it switched out. Back to daddy's she went. She'll be back on Monday though :) I managed to get her into a really great daycare with the help of the bestest, Danielle. I know she'll just love it! I can't wait. Last week I went to my first initial meeting for pulmonary rehab. That place is HUGE and it's like an icebox in there! Starting up at the beginning of August. Possibly in one more week. Twenty three whole sessions. Hope I'm ready for the intense workouts and class time. My mom got the "Help April Breathe Easy" shirts. Very excited about that. OH...did I mention that I got my tube replaced on my bf's bday?? What a great gift right? Geez. Stupid cf!! LOL. I found out my daughter is quite the Usher fan. She definitely sings along to "There Goes My Baby" and "OMG". It's the cutest thing ever. Ron got some video of it. Danielle and I went shopping a little today for the photoshoot we have coming up next Saturday. So stoked about it. My stomach started hurting mid-way so we left a little earlier than I intended, but we came home and watched Sex Drive....which by the way....is absolutely HILARIOUS!! I recommend it to anyone that loves to laugh. The bf and I watched Flatliners last night....I love that movie; been way too long since I've seen it. Ron was a Flatliners virgin, so I got to break him in. It was a good night. Waiting on the best cousin ever currently....she's bringing Mexican and a movie...doesn't get much better than that right? Then the rest of the night will be with the lover. Man, good day!! Tomorrow I'm meeting up with momma to get the shirts and help distribute some of them. Our first fundraiser is coming up! This is so exciting! I noticed today as I was walking through the mall with Danielle that I was struggling a little. I guess the transplant really isn't that far away. Scary thought. It is what it is though. Just need to keep doing everything I can to stay healthy and complete the rehab asap. Last night my dad and I went to grab some Cook-Out....man it was yummy. I cherish the little time I spend with him. He goes through so much and deserves to have everything he wants. It's been a long time since I've been "daddy's little girl" but he's incredible. He's really been doing his best to be here a lot more and call and such. Makes me feel wonderful. I love my family. And always my friends. How blessed I am. Wonder what other things await me tomorrow?

HOME!

Well, I'm home now. I've had a lot of pain from the feeding tube and somehow managed to make it through an entire day of puking about 2 days ago. It wasn't as painful as I thought it would be. What IS painful however, is coughing. Whew, now that HURTS. LOL. Yesterday was just a very lazy day for me. Today I got my car back (YAYYY)....meaning I could listen to my music :) Went to visit my mom at my gma's house, went to Kmart with my dad, and washed some dishes. Oh...and visited the best cousin in the world to get fitted for diabetic shoes. Did I forget to mention I'm diabetic now? Another one for the list. Last night I had really bad reflux and woke up throwing up a little. Not cool. Apparently, I wasn't elevated enough. Solved that problem really quickly though. I hope the reflux isn't that bad tonight. I get to see my Miracle on Saturday AND Traci's BBQ bash is on Saturday also! Fun times indeed. Pics will def follow. Seeing Katy for the 1st time in a while tomorrow. Sure to be slightly awkward. See, she was the best for a long time and then I got really sick and I don't know what happened. She kind of went AWOL. We'll see how that goes. The bf is working late tonight so I'm all alone :( Oh well, it's healthy to be alone sometimes. Love to all!!

Tube Update

So, all went well with the feeding tube. I'm sore but went for a walk earlier and am adjusting to having another tube hanging out of my body, lol. My mom and boyfriend were here to see me off when they wheeled me down and were here when I woke up as well. That's a great feeling. As I was sitting on the table waiting for the meds to make my eyes close, I handed it all over to God. Completely and utterly just let go. He took care of me and was working through the docs. Ron prayed with me twice and that is such a comfort to me I can't even describe it. I feel so incredibly at ease when he holds me in his arms and asks that our Savior do the same. I'm tolerating my tube feeds really well and am more than likely going home tomorrow!! That's exciting. 3 weeks here and I am definitely ready to leave. No oxygen and only needed on extreme exertion. What a difference. Thank you to all those who have and still are praying for me. I love you all. Can't wait to leave and get something super yummy to eat and see my daughter ANNND sleep in MY bed!!!

Natalie Grant

"Will Not Be Moved"

I have been the wayward child
I have acted out
I have questioned Sovereignty
And had my share of doubt
And though sometimes my prayers feel like
They're bouncing off the sky
The hand I hold won't let me go
And is the reason why...

[Chorus:]
I will stumble
I will fall down
But I will not be moved
I will make mistakes
I will face heartache
But I will not be moved
On Christ the Solid Rock I stand
All other ground is sinking sand
I will not be moved

Bitterness has plagued my heart
Many times before
My life has been like broken glass
And I have kept the score
Of all my shattered dreams and though it seemed
That I was far too gone
My brokenness helped me to see
It's grace I'm standing on

[Chorus]

And the chaos in my life
Has been a badge I've worn
Though I have been torn
I will not be moved

[Chorus]




My bestest introduced me to this artist. Thank you friend. I love you and couldn't have been blessed with a better person to share everything with <3

Tomorrow is G DAY!

Hello all. Yesterday was extremely long but I got to spend it with my boyfriend so it's all good. I went walking around Duke a bit and sat outside for quite a while. My best friend Jon came and visited with Whitney...who gave me an awesome lucky turtle charm! Just so you all know, I love turtles. I have a million stuffed animals and such. I watched Jacob's Ladder last night with the bf. Ok, seriously....this movie frustrated the crap out of me. Gah. Tomorrow is a big day for me. Feeding tube placement. I'm having a lot of second thoughts and just wish it were possible for me to gain the weight without the tube. I'm not too thrilled about running around with a tube hanging out of my side. I know I'll get over it, but it's still an adjustment. My good friend Maryann is supposed to be visiting today. She had a double lung transplant at Duke as well. It's really nice to have someone that knows a lot of what I'm going through. All my testing for transplant has been done except for a few that have to be done out patient, so it's really just a waiting game now. As soon as I can tolerate tube feeds I can go home. The docs are thinking maybe Sunday. I'll go home with 3 days of IV meds left. Whew. I will have been here 3 weeks on Sunday. So ready to leave but very thankful I'm as well as I am. I'll keep ya posted!

Some people to know...

Duke Admission and Transplant

I suck at blogging. Just let me preface with that. Having said that, I will do my very best to keep this thing updated. Recently, things have taken a pretty scary turn. I was put on home oxygen at the beginning of June 2010 and sent home on IV antibiotics. I went through 3 weeks of home infusion and didn't feel I was getting as well as I should. My weight was dropping and I was still requiring O2. I called my docs at Duke and requested a feeding tube...knowing that in order to receive a lung transplant, I need to weigh more. So, the feeding tube procedure was scheduled and I was anticipating a short hospital stay. Things don't always go as planned though, and I had to be brought to Duke via an ambulance. I was starting to struggle for every breath and realized this could be it. How can things change so rapidly? The doctors realized I was very sick and found out the bug they were treating for three weeks was resistant to the drug they had put me on. The clever little bug was stubborn and it took a bit to find the right combination of meds. My doctor quickly understood this was an emergency situation and put my name in the mix with the transplant team. After that, a lot of things started happening really fast. I began evaluation testing for a double lung transplant. Scary, tedious, and exciting. I have gotten most of the testing out of the way and will require a couple of out patient visits for some of the tests. I will also begin a rigorous rehab program to get my body in the best shape possible. This by far has been the sickest I've ever been and the most afraid. I literally thought my family and friends wouldn't see me outside of this room ever again. I was almost put into ICU. I had a lot of conversations with God. I didn't want to suffer. I didn't want people to see me suffer. Thankfully, my Lord and these docs know what they're doing. They found the right drugs and now I'm not on O2 at all, walking around, laughing, eating....enjoying life. Even though I'm still in this room over 2 weeks later, I'm so much better. My feeding tube should be going in on Thursday at around 7:30 am. Due to my excessive thinness, I will have to be put all the way under. I'm ok with that. I have had incredible support from family and friends and people just stepping up when I didn't think some even cared that much. I am a fighter and will never stop. I have too much to be here for. Mainly my daughter, Miracle. She is my entire reason. I am most definitely where I need to be. Without my mother, my boyfriend, my family, my friends, my GOD....I would be nowhere. I am so blessed. Be sure to check out my cousin's blog: nonumber1.blogspot.com which also is following my journey through this transplant thing. So we begin....