Some pics

Running with my daughter for the first time. What a feeling.

Whew....been a while.

Well....a lot has happened. My daughter turned 3 (April 2nd), I ran on the beach with her for the very first time, had another bronc (rejection free), put off the wedding until next year....mainly because I'm dealing with lots of depression and anxiety. I've been on several different drugs ranging from Paxil (made my neck muscles tighten and I looked really awful with my head cocked to the side), Zoloft (bumped up two different times and then had an incredibly low time and switched), Wellbutrin....worked BUT insurance wouldn't pay for it!! So I'm now on a different version of Wellbutrin. Seems to be ok. I still struggle daily. Getting my little every Wed, Thur, and Fri night now. Me and her daddy are splitting our time and it seems to be going extremely well. Tomorrow...breakfast with the rents and Mira, Les' wedding at 4p, then I'm going to try to make Lisa's bday celebration. 21!! Shout out Lis <3 A great family friend (actually she IS family) had surgery today and I just want to lift her up in prayer. So now I'm working on finding a job, as a seem to go crazy when I don't have anything to do. I'll be adding some pics of the beach and you can see my killa scars!

Decided to update again. I spent the night at home last night and was able to make it through a movie with Ron. We watched A Team. Great movie btw. I almost couldn't make it through. Ron convinced me though, lol. He's so incredible. My face is different now bc of the meds so that's just another thing added to the list of why I'm down. I don't look like myself. My face is all swollen. I call it the prednisone puff. Hopefully they'll back down on it soon and I'll go back to normal by the wedding. Still so much to do for that too. Went to Best Buy to return stuff today and to target to pick up cold meds. Turns out, I'm sick also. So just remember me in your prayers. I'm struggling but fighting to make it out. I feel like I'm clawing my way out of the ground. I'll make it. My babygirl needs me!

Depression.

So, recently I've been hit very hard with depression. The docs say it's probably all the meds I'm on mixed with this HUGE life change I'm going through. I don't have much to write except that I need your prayers. This is the most miserable feeling ever. I'll probably write more later. Missing Ron a ton bc I'm temporarily with my mom seeing as how she's home more often than Ron. It's still tough. Don't want to get out of bed or do anything. Maybe I should try reading. Please pray for me. PLEASE. Love to all, Ape.

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.