Casey Jo's Lung Transplant Journey: Update

Me, Casey Jo & our Mom
Casey Jo finally got her phone call yesterday.  I decided to post it today since today is Cystic Fibrosis Awareness Day....It seemed fitting.
UPMC called Casey yesterday and told her that she is not eligible at this time to be on the lung transplant list.  She is too 'healthy' at this time.  They want her to have as much use of her 'native' lungs as possible. They will be reevaluating her every 3-4 months, or if she gets worse, she can come in and they can retest her.  Since she has already gone through testing, she already has a foot in the door.  All she is waiting on now is to get progressively worse to be eligible. 
How does she feel about this?
She said she is okay with what the doctors said, but would just rather have it sooner than later.  "I'm tired of living life this."
 I, personally, have mixed feelings about it.  I am worried about her going through the surgery.  On the other hand, I hate seeing her have a hard time breathing, having coughing fits to where she cant catch her breath and being constantly worn out.  Thank you so much for all your wonderful comments and prayers! We greatly appreciate them.
This isn't the end.  This journey is just beginning! I will post updates whenever anything comes up.
Thanks y'all!

Wardrobe Wednesday 5/29

I love this light flowy shirt.  Especially on a hot day like today!

Shirt: TJ Maxx
Pants: American Eagle

Bracelet: Racers Boutique

Shoes: Toms

DIY: Front Porch Ferns

I feel like my home is never complete in the summertime without a fern on the front porch. Maybe it's because my mom always had one on the front porch when I was growing up, but I just love them. 

One thing I hate doing is going to a greenhouse or Nursery to get ones already planted in fancy planters. They are always super expensive!!! Instead, I love to do it on my own!

A few weeks back I decided to plant some. I even got these cute planters from Dollar General for about $8 (I think!).  I love how something that only takes about 10 minutes to plant, makes such a difference in the front of my house!

The first thing I did was get those floral blocks  (I got mine at Walmart for a couple bucks I think) and stick them in the bottom of the planter. I do this for two reasons. 1 it takes up space that you would be wasting soil on. 2 they absorb moisture so it keeps your plants watered longer. 

Here is the first one finished. Look at how gorgeous those leaves look!

Planting completed. I absolutely love this.   Anyone else always have ferns on the front porch in the summer?

My Fab 5 of the Week- May 26

My Fab 5 of the Week
#.1  I Love, Love, LOVE this new Revlon Nail Art Moon Candy nail polish. I got it in Galactic.

#2  Lily got fixed on Tuesday.  Broke my heart! Nate got her an inflatable collar so she wouldn't have to wear an E-collar.

#3  The hubs and I went to our nephews graduation. 

#4. Casey Jo finished up her round of testing for transplant this week.  We find out if she is gets on the list by Wednesday.
#5. I Finished Jodi Picoult's The Storyteller.  Oh. My. Goodness!!!!! My aunt recommended it to me and I am so glad she did! This was sooooo good! Warning: It will make you cry.  I has something to do with the Holocaust.

Casey Jo's Lung Transplant Journey: Day 4

Today was our fourth and final day. Casey Jo met with her social worker and one of the transplant Pulmonologist. 

Casey Jo and her awesome social worker Brittany

The meeting with the social worker went great. She was so kind and very informative. She talked about fundraising, Angel Flights, insurance and a few other concerns. She told us that it is important to start fundraising now even if I'm not eligible to be put on the list at this time. It makes it easier to start early because post transplant is expensive too! With follow appointments, travel, and anti-rejection drugs, costs or those can get overwhelming. The Angel Flights is a program that allows patients 'on call' to be flown to Pitt from where they are. Brittany gave us information to look into that idea. 

The meeting with the transplant Pulmonologist went as well as expected.  She said basically the same things we have already heard previously this week. Some of the questions Casey asked were about her rejection meds. She answered as best as she could since we are not in that situation yet.  She basically told us not to be surprised if Casey Jo is not eligible for a transplant at this time because she seems "too healthy" at this point. There is a fine "window" of time when Casey should be bad enough to be on the transplant list. They want her to get as much use out of her "native lungs" as she can. They want her sick enough to need it, but not too sick where she can recuperate from the surgery.  The Doctor also said that it is great that Casey came in this week to get established.  Even if she is not eligible now, UPMC will keep reevaluating her every 3-4 months to make sure she isn't getting any worse.  If she does get worse, she will be able to get on the list quicker since she is already established. All the doctors are getting together Tuesday for a meeting where they discus Casey's case. We should get a call by next Wednesday letting us know whether she is on the list or not. We are feeling positive she wont be a candidate at this time.....but you never know! This has been such a wonderful and overall positive experience so far. 

Thank you so much for all your prayer and sweet comments!!!!
If you are not a fellow blogger, and you are trying to comment on this post below, make your comment in the comment box, and under it says "Comment as," click on the drop arrow to the right of it and select anonymous. Just make sure you add your name in the comment so I know who commented. All of your wonderful comments really brighten Casey's day

Casey Jo's Lung Transplant Journey: Day 3

We were back at UPMC today for Day 3. Today, Casey Had an Echocardiogram, 6 minute walk test, seen a behavioral health specialist, and had lab work done.

The Echocardiogram was the first thing on her list. (That was one test I couldn't go back with her). 
They first put an IV in for a 'bubble' test. Then hooked her up to the machine and had the ultrasound of her heart. Through the IV they pushed sodium chloride with little bubbles and took pictures of her heart as it expelled the bubbles. All together they took about 70 pictures of her heart.

Casey Jo was very unenthused about my taking her picture for the walk test!
Then her 6 minute walk consisted of walking up and and down a hallway while having her oxygen checked every few minutes and seeing how far she went. 
The band on her head was to monitor her oxygen intake. Her fake nails made it hard for an accurate reading so headband it was!!

Walking test
Next, we saw a transplant therapist. She was very nice. We talked about Casey's mental health. She said Casey seemed to be in great mental health condition. The one problem Casey has is trying to figure out what she wants to do with her life post transplant. The therapist said most people with a congenital disease do the same thing. Casey's problem is that she doesn't know how to be well. (It is the opposite problem for someone who has never been sick and needs a transplant, they don't know how to be sick)  She has been sick for so long and she knows all the things she can't do, and if she tries to do them, how awful or exhausted it makes her feel. Casey can't see the big picture. She has been sick for so long, she doesn't know what to do with her life after transplant because she has no clue what healthy feels like; so she doesn't understand what she will be healthy enough to do.

Casey getting her 25 tubes of blood drawn

The last thing on our list to do was getting her blood drawn. She has bad veins from all the IV drug use she has been subjected to. She is a very hard stick. (I know this personally because I usually become her personal phlebotomist when her home health nurses can't get any blood from her.) She had some tests that the doctors said they were going to add to it. So I asked her phlebotomist what all tests were ordered. (Just to check and make sure everything that needed to be ordered, was actually ordered. We don't want them to forget something and have to be redrawn.) -I will spare you all the details, but this girl was rude and really ticked me off. She finally told me I could ask for a copy at the front desk. (I already knew that, I have worked in lab, duhhh!) She missed Casey the first time (understandable, like I said, she has HORRIBLE veins!!!!) however, before the second stick she threw in a little attitude that was enough to bring out (What Sarah Palin calls) "The Momma Grizzly Bear" in me! Thankfully she got it on the second try. (I promise I'm not one of those annoying family members who complain about how many times their loved one got stuck. I was a phlebotomist, soon to be MLT, and I know how hard it is to get blood from a chronically ill patient. Been there done that and totally understand!) When it was all said and done, she had 25 tubes of blood drawn. 
That was all for today. Thank goodness because Casey Jo was extremely exhausted! Tomorrow is her last day of testing. Yay!!!

I just want to say thank you for all of your wonderful comments and prayers! They are working!!!

If you are not a fellow blogger, and you are trying to comment on this post below, make your comment in the comment box, and under it says "Comment as," click on the drop arrow to the right of it and select anonymous.  Just make sure you add your name in the comment so I know who commented.  All of your wonderful comments really brighten Casey's day!

Casey Jo's Lung Transplant Journey: Day 2

Day 2 of Casey Jo's Lung Transplant Journey at UPMC

Today, Casey Jo met up with her financial specialist, met with the transplant coordinator, one of the surgeons, pulmonary testing, and met with a nutritionist/dietitian.  

The financial analyst went over what her insurances would cover and what they would not.

Her transplant coordinator answered some questions Casey had:

Q: "Can Hemi come to the hospital and visit me?"
A: He can't come inside, but it can be arranged for Hemi to be brought to the hospital garden area and  then Casey could go out to see him.

Q: "What happens to my used CF lungs?"
A: They can be given to research if you consent to it.

Q: "How long will the whole transplant take?"
A: 4-6 hours

Q: "I've seen movies about people getting weird cravings or super powers from a donor organ after transplantation, have you ever hear of that?"
A: Never

She also went over more of the procedure before the Surgeon came in to talk to her.  She commented on how healthy Casey Jo seemed.  She said she wouldn't be surprised if she isn't a transplant candidate just yet because she may be "Too healthy" at this point.  They want her to get as much use out of her "native lungs" as possible before they actually transplant.  However, they want to do it while she is still semi-healthy so she can make a great recovery.  (Every lung transplant is different, people with CF can seem a little healthier than other transplant candidates, but their disease makes them just as much in need as others with different lung ailments) 

By the time the surgeon came in, everyone else had pretty much answered our questions. He spent the remaining time talking to Casey Jo about Pulmonary Rehab, and elaborated more on the procedure.

Next, she did 3 Pulmonary tests:
Pulmonary Function Test

PFTs: (Pulmonary Function Tests) Casey's PFT has been getting low. As in the high twenties. However, the last time she had one done in Cleveland, it was 33%. Today it was 34% Go Casey Jo!!!!

Diffusion Study

Diffusion Study:  (Lung Diffusion Testing) Usually the norm is around 80%, anyone below 50% needs oxygen.  Casey's is 47% (She knows she needs oxygen, but is stubborn and is waiting until last minute to get it because it's "not pretty to wear.")

Lung Volumes
It's a "chick" in a box! (Kudos for you if you actually got that! -SNL skit lol!)

Lung Volumes:  (Lung Volumes) The norm is 80% also, Anyone with an obstructive disease such as CF is usually higher. Casey's is 150

Blood gasses being drawn

In correlation with these tests, the doctor ordered blood gasses to drawn.  If you know anything about blood gasses, you know they hurt like a mother!!!! (The go for the artery, not the vein!) Unfortunately, the Respiratory Tech tried 2 times and was unsuccessful. Bless her heart, she felt bad about it and was really nice.

Casey Jo walking on the treadmill

In addition to those pulmonary tests, she also had to walk on a treadmill to see how low her oxygen gets when she walks.

That took up most of the day.  The remaining 15 minutes we sat with the nutritionist and talked about pre/post diet. A CF patient can NEVER eat enough! No matter how much Casey eats, she will never get fat! (Lucky!) Some things that she told us that really stuck out from the obvious were food poisoning, and  what she will NEVER be allowed to eat ever again post transplant.  She has to be super careful on where she eats after transplant.  If she were to get food poisoning, if could really be detrimental to her health.  Some foods she must never be allowed to eat after transplant are exotic fruits, grapefruit, and blood oranges.  There is something in the fruits that react with her anti-rejection drugs. (Which she will have to take everyday for the rest of her life.) 

That pretty much covered today!

Casey Jo's Lung Transplant Journey

If you have ever read my blog, you know about my sister Casey Jo.  (Click Here if you are new and want to read Casey Jo's story.) Casey Jo was diagnosed with Cystic Fibrosis as a baby. She is an amazing little fighter! This past weekend was the Great Strides walk for Cystic Fibrosis.  We did an amazing job! Team Casey Jo was 3rd in raising the most money!!!

5/20/13 Day 1
Casey Jo & Me

Today was kind of bitter sweet for me.  Casey Jo's disease is progressing to the point to where her doctor thinks she may be eligible for a lung transplant.  This is good and bad.  From the medical stand point, it scares me to know my sister is getting bad enough for the doctors to contemplate a transplant.  (Especially since I am in lab school, the thought of infection or rejection scares me to death.) However, this is good because if she gets a whole new set of lungs, she can Breathe Easy. So, since she is at this stage of her disease, her doctor is sending her to Pittsburgh this week for testing.  Casey Jo and I want to document her journey together.  So I will be documenting what happens this week.

Casey Jo with our Mom

May 20, 2013
Day 1

Today we had to be at UPMC at 7:30 this morning for Radiology testing.
She had 5 tests done:
  • CT (Computed Tomography- to look at the lungs and measure them)
  • Barium Swallow (To check for acid reflux.  If she would be a candidate, they need to make sure she doesn't have acid reflux so if/when she gets the transplant, she won't aspirate on food.)
  • VQ Scan (Ventilation/perfusion scan- nuclear lung scan that radioactive tracer gas or mist is inhaled into the lungs. Pictures from this scan can show areas of the lungs that are not receiving enough air or that retain too much air. Areas of the lung that retain too much air show up as bright or "hot" spots on the pictures. Areas that are not receiving enough air show up as dark or "cold" spots. During a perfusion scan, a radioactive tracer substance is injected into a vein in the arm. It travels through the bloodstream and into the lungs. Pictures from this scan can show areas of the lungs that are not receiving enough blood. The tracer is absorbed evenly in areas of the lung where the blood flow is normal. These areas show up with the tracer distributed evenly. Areas that are not receiving enough blood show up as cold spots. -according to Web MD)
  • Chest X-ray (To look at her lungs)
  • EKG (A standard heart test that is done)
After all that was done, we went to Transplant Orientation.  There, we listened to a doctor talk about the process of getting on the 'list', process of the transplant, signed papers, asked questions.  The doctor was nice, compassionate, and very informative. 

Just because Casey is going through this process doesn't mean she will automatically get on the transplant list.  She will be doing a series of tests this week to see if she will even be eligible to even be on the list.  She may not even be bad enough to get one. Which is good and bad.  Part of me hopes her health isn't bad enough for one.  The other half of me wants her to get one so she can breathe and know what it feels like to do more things she is physically not able to do. The doctor said one year after transplant, 85% of patients are alive.  Five years after transplant, 55-60% of patients are alive. Those numbers scare me.  However, a friend of the family had a transplant about 16 years ago and is doing very well.

Do you know anyone with Cystic Fibrosis? Did they have a transplant? How did it go?
If you have any questions, Casey Jo & I would be happy to answer them :)

My Fab 5 of the Week

#1. I bought Physicans Formula mascara this past week.  I am still trying to figure out if I really like it.  I am still on the search for the perfect mascara!

#2. I painted my bathroom and living room this week.  I love the colors!! Especially my living room! It is called Homestead Resort by Valspar.  I got it at Lowes.

#3.  I was getting ready to fall asleep when I looked down and saw Lily fast asleep holding her stuffed animal. I just love my fur baby!

#4. Let me just say, this is so cool! I love this polish!!! Revlon Nail Art Moon Candy.
#5. Yesterday was the Great Strides walk for Cystic Fibrosis.  I am so lucky to have such a great family and friends who came together to help raise money and walk for the Cystic Fibrosis Foundation. It was suppose to rain yesterday, but luckily it never did! Our team, Team Casey Jo, was the top 3rd in raising the most money!!!!
I hope y'all had a wonderful week!

The Higher the Hair, the Closer To God....With Sugar Dust!

Do you want to get some volume and pump up your hair without hair spray weighing it down???
Here's the solution:
Sugar Dust!
A couple of weeks ago when I went to the salon, my girl Liz showed me this awesome product! You want to know what is even better? Holiday Hair had a deal going on: buy one get two free! Say What?!?! ...That right, buy one get two free on many of their products! (I got shampoo, conditioner and Sugar Dust!!!!) If you are near the Connellsville, PA area, stop in the Holiday Hair and have Liz hook you up!

First, I start at the back of my head.

I pull the hair up.

Next, I shake some of the powder onto the part of my hair.

Then tease away!

I pull over and smooth out.

I repeat it a couple of times. Each time going forward on my head.

Next, I just comb hair back to blend & smooth down.

Finished product...all without hairspray!!!
Have you ever used Sugar Dust?
 What do you think??

My Fab 5 of the Week- Mother's Day

This Week for my fab 5 of the week, I want to celebrate the 5 special mothers in my family.
This is my Mom & I
This is one of my favorite pictures of us.
My Dad with his sister, Dad & Mom.
My mom (top right) with her brother, sister, Mom & Dad.
My Grandmother, with her Mother
 My Great Gram with her siblings, Mother & Father.
Happy Mother's Day y'all!

DIY Memorial Crosses

With Memorial Day coming up, My sister & I decided to make some memorial crosses to put on our grandparents grave. I know this may seem a little morbid to some, but I love to remember my grandparents, and honor them. These were so easy to make!

For my grandmother's cross, I bought a natural twig & moss looking cross from Crafts 2000 for $3.99, flowers, a little bird and nest.  They were all pretty cheap.

First, I started off with taking wire cutters and trimming the flowers short enough to place inside the cross.
Next, I start putting them in just to see where I want them to go.

Once they are arranged where I want them, I hot glue them into place.


The next one is done with the same concept.

Using wire cutters to trim

I like to place the flower on the side of the cross to make sure the stem isn't too long.

Getting some help from my sister, Casey Jo.

Hot gluing the side pieces first into place.

Next I arrange the front before hot gluing.

I like making them so much better than buying them from walmart.  They cost about the same to make, but I think they look better if you make them yourself. 
What do you think?

Related Posts Plugin for WordPress, Blogger...