UPMC Trasplant Testing Update


Yesterday, Casey Jo had an echocardiogram and a CT done.  We weren't there very long at all! Today, we were there a little later.  It first started off with Casey having to get blood work done.  (Only 2 tubes! Not 20 like she usually has to get!) Then she did her usual 6 minute walk, followed by her PFTs and blood gasses.  Her PFT went from 24% last month to 29%.  It's really strange, every time we have them done in Cleveland they are lower, then a few months later when we have them done in Pittsburgh they miraculously come up. 
 
Casey Jo and Rachel
 
Our next stop was to see her social worker. Her super sweet social worker, Maureen, retired.  So today, we met Rachel! Rachel is Casey Jo's new social worker.  She seems really awesome! She briefly went over everything Maureen went over, and talked about some post transplant things.  We were sad to see Maureen go, but we think we will really like Rachel!
 
Our final visit was with Dr. Pilewski. He talked with Casey about being ready for transplant.  He talked a little about the scoring. (Many factors determine your "score" and where you're placed on the list.)  Casey is still in that limbo stage.  Even though she has a poor quality of life at the moment, she is still functioning.  So if they decide to place her, she will be pretty low on the list. She has a pretty common blood type, which means it may be somewhat harder for her to get a set of lungs soon. He said the doctors will get together on Tuesday and will make their final decision then.
 
Our Great Uncle passed away this past week. On our way back from Pittsburgh we stopped in to pay our last respects.  Please say an extra prayer for our family at this time.  We appreciate all the prayers and encouragement you give Casey Jo!!!! We love you all very much!  
 
 

Transplant Testing Week Day One

We are back in Pittsburgh for some more transplant testing! Since I no longer live close to UPMC, we had to actually stay in Pittsburgh.  We are staying at Family House, Shadyside. It's like a homey hotel for patients and their families. Casey's social worker mentioned Family Housing and also Casey's friend D. & R. Weaver had great reviews and helped us with questions and concerns! (To learn more about Family House, Click Here!)

 
Living area!

Restroom

Bedroom


This trip, our Aunt Kelly joined us girls and Mom! 
We first saw the transplant surgeon. We talked a little on how long the surgery will take which could be anywhere from 6-12 hours. Then, transplant pharmacy introduced us to at least 6 of the drugs that will be used after transplant and their side effects. Lastly, Casey's coordinator, Lisa, spoke with us and seemed to have positive thoughts on being listed. She said she'll put in a good word at their weekly meetings! 



Hospital Update: Finally Home!


Casey Jo came home today!!! It's been a very long stay but she finally gets out! She is very excited to get back home and see her dog! She had another lung function test and its up to 24%. She enjoyed all of her visits while she was there; Mike, Phyllis, Amy, Shauna, Ashley, Jason and Candace! Thanks to everyone for your continued thoughts and prayers! Casey goes back to Pittsburgh December 2-4. 

Hospital Update #2

Casey Jo has been feeling a little better. She is on three IV medications which run every 8 hours. She had another lung function test and it was 22%. She is definitely ready to be home, 10 days down though!


Casey Jo Hospital Update #1

Well at 7am they woke Casey Jo up to go down to get her PICC line! She was just a little tired. They got the line in with no problem. 
 

Casey Jo gets anxious about getting her PICC line placed so they give her something to relax her which makes her tired. She spent most of the afternoon napping today. She did wake up to eat which is great!!
Then she had a couple good friends come up to visit her, Mike and Phyllis! They brought her dinner and menus to order out! She also got to talked to Phyllis' son, Stevie, on the phone. Overall Casey Jo had a pretty good day!

Routine Cleveland Check-Up



Today, Casey Jo had a check up appointment with her CF doctor in Cleveland. 
She did lose some weight and her lung function was down to 21% from the last time of 27%
Her doctor wants her to come in on Monday and stay for 2-3 weeks for a 'clean out' before she goes to her transplant listing appointments in Pittsburgh in November. Usually she can go home on the IV meds but with the medication she will be on, she will actually need to stay to be monitored. We will keep you updated once she gets admitted!
 
Thank you for all your prayers!

Last Day of Transplant Testing

Casey Jo & Dr. P
 
For Casey Jo's last day of appointments she had to have blood drawn, a PFT, blood gases drawn, a 6 minute walk and she spoke with Dr. Pilewski, the Lung Transplant Program doctor. She also spoke with Maureen, her social worker.
She lost a little more weight so the goal of gaining weight continues. She also needs to keep up her strength so she needs to exercise. 
She won't know about being listed until next week but we still think she's 'too healthy' to be listed but who knows!

Casey Jo with Maureen
 

Another Week of Transplant Testing!


Casey Jo had an appointment in Pittsburgh today! She also has another tomorrow, and then a few on Thursday. Unfortunately, something came up and our parents couldn't make it.  So, we invited our Grandmother to come with us.  It's nice for others to get the chance to see what all happens during the Transplant process.
Today we sat though a 3 hour orientation and signed a few papers. We listened to the Transplant Coordinator explain the process, listened to the surgeon talk about the process from a surgical standpoint, the Respiratory Therapist came in and asked about tissue donation from the discarded diseased lungs, and then Casey Jo's Social Worker came in and talked about the financial side of Transplant.  We have been through it before, but it was a nice refresher! Today wasn't too bad just a lot of information to process again!
 
Thank you, each and everyone for your wonderful comments and prayers for our family.  We truly appreciate them!
 

Team Casey Jo!

Well,  the big event my family has been planning for this past year has finally arrived! Her Benefit dinner is tonight! In case you don't know about Casey Jo, you can read here story here. 


Earlier this week she was interviewed by the local newspaper, The Marietta Times.  (You might have to read it though the Marietta Times app) Just the other day, My Aunt Kelly and I were interviewed on our local news station about Casey Jo & her upcoming benefit. You can watch that here.

Aunt Kel & me in the break room of WTAP news
 
 
We have had multiple benefits for her throughout the year. Her awesome friends put together a 31 Bingo for her back in May.  My friend Brownie & her sister Andi set up a concession stand at our local spring fair. Our other Aunt asked Bob Evans to do a fundraiser for the day. We have had multiple friends come together and do fundraisers with products they sell and even let us set up and sell shirts at various events. My friend Jess even put together a Go Fund Me page! (If you would like to donate, click here.)

We put my Aunt Kelly in charge of all the fundraisers so we had one person that knew exactly what was going on at all times.  She set up a Facebook page called Breathe 2014 Easy. Check it out! She has even sells shirts of all sizes! (If you are interested in a shirt you can order them from my Aunt Kelly on the Breathe 2014 Easy Facebook page.)

Aunt Kelly has put together a motorcycle poker run, an ATV ride, and will be doing a Horse ride later.  She put my cousin Ash in charge of the Spaghetti dinner tonight.  So far, I can tell tonight will be a huge success.  My cousin Ash has put so much hard work into it and it is coming together nicely!

We are so BLESSED we come from such an awesome community! Our community has come together and helped my sister out soooo much! From all the sweet messages, prayers and donations! I am proud to say I come from Marietta, OH! 

So if you are close to Marietta, OH, come out to Churchtown K of C Hall tonight at 5 and have fun with us! We have a country store, Auction and Live band in the evening!

Casey Jo Clinic Appt. Update


 
You know what I love so much about my sister? No matter what she is going through, she NEVER complains!!! She ALWAYS finds a way to make the best of a situation, or find the humor in it.  This is the Snap she sent me the other night.  Can we say #CFprobs !?!? 
 
I took Casey Jo to Cleveland yesterday for her clinic appointment.  She still isn't feeling 100%, but she does feel better.  She gained two pounds (small victory, but hey, we'll take it!!!) and her PFTs have stayed the same.  (25%, Not complaining, it could be worse!) Dr. D decided to switch up Casey's antibiotics and see how that goes.  If she starts to feel better after a week she may get to have her IV meds discontinued!!! 
 
Thanks so much for all the prayers and wonderful comments. Casey Jo reads each and every one of them and loves them!!!!  

Casey Jo Hospital Update #3



Casey Jo has been feeling better!!! Yesterday she had a DEXA scan done. (Measures your bone health) The DEXA scan, along with some other lab work, are requirements she needed to check off for the Transplant list. Today she had another PFT and it came up to 25%! I know that's just 1%, but hey, we'll take it!!! More good news: We are coming home tomorrow!!! Casey Jo is getting discharged!!! Praise The Lord!!! 

Casey Jo Hospital Update #2


 
Yay! Casey Jo finally got her PICC today! They had a slight hiccup though. Apparently the last time they tried to put it in on the floor, they had a hard time.  It would go up to her armpit and not go any further.  They decided that she needed IR- Interventional Radiology.  It is easier on Casey Jo because they can give her better drugs for the procedure and they can see what they are doing so much better than doing it in her room. Everything went A-Okay and she is still resting from the procedure. Thanks for all the sweet comments.
 
My Aunt Kelly has asked if you have a Team Casey Jo shirt to please wear it and post it to her 'Breathe 2014 Easy' facebook page.  Casey Jo loves seeing all the support.  It really makes her day!
Don't have a Team Casey Jo shirt? No problem! You can order them from my Aunt Kelly! (Click Here and read the pinned post to order. If you are out of state please message Darrin Gray Kelly Legleitner (My Aunt) for total for shipping)
 
Thank you so much for your support!!! :)

Back In The Hospital


Casey Jo has been doing so much lately, she has just worn herself down! As much as I hate to see her being admitted, I'm glad it's because she has been doing so much.  There for a while she was so tired and had no energy to do anything.  Lately, she was doing so much, I'm not surprised she's worn herself down. She first went to clinic today and they said her PFTs are at 24%.  It's not good, but I expected worse. The doctor came in later and told her she may (FINGERS CROSSED!!!) get to go back home at the end of the week!
 
Casey Jo getting an IV put in
 
He told Casey Jo that he didn't think she would need Colistin this time....Thank goodness! He will be putting her on 3 antibiotics: Tobi, Zosyn, and Ceftaroline. Apparently, back in June, MRSA started growing in her lungs again. They were unable to get the PICC team to put in her PICC line so she had to get a regular IV for tonight. Hopefully she will get her PICC tomorrow.  Thank you so much for all the Well-Wishes and prayers.  She appreciates each and every one of them!

Transplant Testing Part 3

Casey getting her 23 tubes of blood drawn.
 
 
As some of you know, Casey Jo had some appointments in Pittsburgh on Tuesday and Wednesday. Tuesday was her busiest day. She had to do a PFT (pulmonary function test) and they also drew a blood gas. Got her weight (which she's lost some) Then she talked to the Pulmonologist and his Fellow then talked with the surgeon and her coordinator. She was also suppose to talk with social services but everything was running late and they had to cancel that appointment.
On Wednesday, she got a CT scan of her chest, did a 6 minute walk and got 23 tubes of blood drawn! 

They have decided Casey Jo's lungs are definitely bad enough for a transplant but they really would like for her to gain some weight for the operation. Having more weight on will make recovery a little bit easier and it will help with less chance of infections. They want her to try bolus feeds during the day with her feeding tube. In the past, she has tried them but made her feel extremely full and uncomfortable but they're hoping it'll be different since she's had her gallbladder removed.
 So at this time she is still not 'listed'.
They want her to email them to keep them updated on her weight. She's right on the borderline, they thought hard about her case but since there are people even worse then her they've decided to just hold off on listing. They say transplant will happen, there no question about that but just a matter of getting her body as ready as it can be to have an easier recovery. Thank you so much for all your wonderful words of encouragement and prayers!


Casey Jo Update- May Cleveland Appointment

Casey Jo had a follow up appointment in Cleveland today! 
When she left the hospital in early April her PFT was 23% and today it was up a little to 26%! Awesome! She did lose a couple pounds since leaving the hospital but has been maintaining her weight. Her appetite has recently gotten a little better but it's still hard for her to get back in the routine of eating again. 
She has been having some high fevers (102-103) even while being on three antibiotics and her doctors aren't sure why they're breaking through. She has had fevers off and on her whole life, she has her doctors stumped!
She goes back for another check-up next month, so we'll keep you updated! 


Wardrobe Wednesday!


I absolutely adore this scarf!!!
Button up shirt & Scarf: Aeropostale
 
 

Closer view of scarf

Aztec Nails

I have been so bored with my nails lately.  So, for some inspiration, I went on to Pinterest to get some ideas.  There are sooo many cute ideas.  I could definitely pull of some of them on my left hand, but when it comes to doing it on my right hand, you might as well forget about it.  I got really annoyed and decided to be boring and paint them a solid color like usual.  While digging for some polish, I stumbled across these Sally Hansen polish strips I forgot I had.  I get my cute design without having to actually do it myself! I am loving this cute Aztec design. What do you think?
Sally Hansen Nail Strips: 510 Mad About You
Orly Polish: Purple Crush

Prom Queen 1984

Out of all the birthdays, my 30th,  has to be my favorite! This year has been pretty rough on me so far.  I have been feeling down... a lot lately, and hating the world.  I didn't even want to celebrate my birthday. Not just because it was my 30th, I just felt too depressed to even want to do anything for it. Little did I know, my amazing group of besties schemed behind my back to throw me one heck of a 30th birthday party... 80's prom style!
 
Preggo at prom
 
I love these girls!
 





 
 
Do I have the most amazing friends or what!?!?
 



My First Ipsy Bag!


If you're not familiar with Ipsy, it is kind of the same concept as Birchbox.  You pay a monthly subscription of $10 and receive a makeup bag of samples, instead of a box. 

This is what April's Ipsy bag looked like.

1. City Color Eyeshadow

2. Urban Decay eye pencil. I am sure I will LOVE this because I pretty much love all Urban Decay products.

3. Benefit Lolli Tint Lip gloss.  I think I am going to love this shade. I used to hate lip gloss and thought it felt like I was applying glue stick to my lips.  Then, I started using plain chapstick brand chap stick before applying lip gloss and now I am obsessed!

4. Kiss Eyelashes.  Girls, I love me some luscious eyelashes!!!! When I go out for special occasions, I am either wearing my false lases, or I'm using my Younique 3D Fiber Lashes!

5. Cailyn Lip gloss.  I have never seen lip gloss in a container like this.  I have some gel eyeliner in a packaging like this, but this looks interesting!
 
This was my very first Ipsy Bag.  I have been getting Birchbox for probably 5 months now and already I feel that I love Ipsy more.  Even though you fill out a questionnaire when you first subscribe to Birchbox and Ipsy, I still feel like there are only a couple of things I actually like from Birchbox. Whereas Ipsy, on the other hand, I can't wait to try out almost all the products.  Do you get Birchbox or Ipsy? If so, please tell me what you think! I would love to hear what you have to say.

Team Casey Jo At Bob Evans!

Miss Casey Jo has been having a good past couple of days.  She has been eating, and going out a little.  Today she went out to eat at our local Bob Evans with her friend Mallory, and her adorable babies A & P!
 
Casey Jo with Mr. A

Mallory with her adorable little P!
 
We honestly have the best little community.  My Aunt Rhena asked Bob Evans if they would do a fundraiser for Casey Jo and they agreed.  Not only in Marietta, but the Parkersburg, WV Bob Evans also had one for her that same day.  We had so many people on her Facebook (Find Casey Jo's Facebook page: Breathe 2014 Easy) page comment on how they were going.  It was awesome! Casey Jo even made the evening news! (To check out the link, Click Here!)
 
We are so amazed by all the local support! I love seeing people around my hometown wearing Team Casey Jo shirts.  Especially people I don't even know! Makes my heart swell with pride to call Marietta/Parkersburg home.


April Birchbox



 
1. Anastasia Beverly Hills clear brow gel.  I can't wait to try this! I have always wanted to try the Anastasia brand products, but haven't done so yet.  I will be trying this out soon!
 
2. KIND Snacks. Unfortunately, I won't be trying this bar out since it has nuts in it and I'm allergic.
 
3. Paula's Choice 8% AHA Gel Exfoliant. This sample smooths, fades dark spots and boosts collagen production. I may give this one to my Mom to try out.
 
4. Color Club Nail Polish. This pretty shimmery shade will look cute on my nails!
 
5. Supergoop! This is a daily correct SPF 35 CC cream. It protects against UVA, UVB and infared-A rays.
 
This is either my 4th or 5th Birchbox.  I'm still not 100% pleased with it.  I recently started receiving Ipsy.  I think I will start posting both of them for a few months to see which one I like more. Do you receive either Birchbox or Ipsy? What do you think? Which one do you like more?
 
 

Casey Jo Hospital Update....Home again!

Good news!!! Casey Jo got to go home on Wednesday!! She has gained a few pounds but her PFT was lower from 24% to 23% but she is feeling better and is so glad to be back home!!
Thanks for all the continued thoughts and prayers! If you haven't, check her Facebook page Breathe 2014 Easy out!
 
You may purchase these shirts on her Breathe 2014 Easy Facebook page.
 

Casey Jo Hospital Update #5

What a wonderful day! Casey Jo had visitors today!!!
 
Diana, Me, Casey Jo & Aunt Rhena
 
Casey Jo with our Aunt Rhena

Casey Jo with our friend Steph's Aunt, which we claim as our Aunt Lisa too!
 
 
 
We had such a great visit with the Aunts & Diana! We sure are spoiled though! Here are some of the goodies we received:
 
Aunt Lisa gave Casey Jo some pretty flowers and this beautiful blinged out cross and a pink & teal one for Mom & I....how sweet!!!!
 
Diana brought Casey Jo an activity to keep her busy when she is awake. She put together this adorable Doggie scrapbook Casey can work on. Is this not adorable!?!?! She even brought pictures and double sided tape so Casey can start on it right away.  I can't wait to see it finished!
 
Aunt Rhena brought Casey Jo a little Hospital survival kit! Some solar powered dancing animals, coozie, hair clips, slippers and jelly beans. (Reminds us of our Mamaw...she always made sure us girls had jelly beans at Easter time!)
 
Aunt Rhena even brought me something too! I got a sudoko puzzle book, an Easter solar powered bunny, paper & pens and a nail kit, which I desperately needed!!!!

Casey Jo has been getting a TON of mail!!!! You should see the look on her face when the nurses bring her in mail.  She loves opening them and reading them.  She has even received cards from people we don't even know who are praying for her.  She feels so blessed!!!
 
Today was a great day.  After our visitors left, she took a nap and ate! Her appetite has been coming back! Yay! (Only if we can get her to continue to do this once she gets home!) Dr. D came in and talked to her a little more about transplant list placement and gave us more info. Overall, a wonderful day. 

 

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