This document summarizes the speaker's experience receiving a double lung transplant. It describes their declining health due to cystic fibrosis, including needing oxygen support and gaining a feeding tube. They underwent four "dry runs" where donor lungs were found but deemed unsuitable. On Christmas Day 2014, suitable lungs were found and the successful transplant surgery took place. The speaker details their recovery process, including physical therapy and managing medications. They express gratitude for the support received throughout their journey.
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A Lung Transplant Journey
1. Welcome to TransplantME. I will be putting this
slideshow on to illustrate the experience of my lung
transplant
2. It all started when I was young and my sister dressed me up in
a ballerina outfit. This kind of treatment directly resulted in my
diagnosis of Cystic Fibrosis. Not really but I like to think so.
3. This was me, four years ago. From this point on in my life, I
started losing weight rather rapidly. After surgery I will be
bigger and better than this.
4. The sicker I got, the more the infections nestled into my lungs
and it was not long until I would need oxygen 24/7.
5. This may look like a lot but it’s not as bad as what’s ahead. I
was needing to take pills, home IV medications, and inhaled
medication.
6. My body started working so hard to breathe that I was burning
more calories than I was taking in. This G-Tube was placed in
order for me to get extra nutrients while still maintaining my
appetite. When everything was said and done, I was taking in
around 6,000 calories a day.
7. I started to slowly gain weight. At my low point, I weighed 114
pounds. The number you see here was the weight I needed to
reach in order to be on the transplant list.
8. The pounds started pouring on shortly after I started my
relationship with Mega Stuf Oreos.
9. I decided in November of 2013 that I was going to start getting worked
up for a double lung transplant. Around that same time I also started
preparing for fundraising. This is my symbol. I needed something
unique that represented who I was and what it was I wanted to
accomplish. A friend made this design for me and I fell in love with it.
10. The first thing I did for fundraising was attack social media.
Facebook was my best friend. One of my high school buddies
put together my website which made fundraising easy. I
started receiving donations almost immediately and felt it was
important to personally thank each one that donated.
11. We have put in several orders for hundreds of shirts and I love
handing them out to the nurses and doctors at UNC.
12. The neat thing about having your own shirts is you can take a
selfie and not feel conceited. I love my shirts.
13. Bo made the first ever TransplantME.com shirt. However, the
cost for doing it on your own is more than having a professional
do it for you.
14. Once I had my brand, my website, and all my transplantME
swag, the time had come to go raise some money. Chick Fil A
was an easy fundraiser and required very little work.
15. The Chick Fil A crew. The cow freaked out little Katherine
Jurney.
16. I wrote Volcom and told them about my fundraising and wanting
to use the Volcom Stone in my design. They said no, but sent
me three huge boxes of items that I could use.
17. Slowly but surely I was getting some of my requests for
raffle/auction items for upcoming fundraising events.
18. The word was spreading about my story and my need for a
double lung transplant and people were putting on small events
to help raise funds.
19. My friend Kate put on an event in Austin, Texas. She put it
together with no help from me or the TransplantME group. Not
only did they have a good time but they also raised a nice
amount.
20. On a few occasions I had people who wanted to do something
nice and treat me like a king for a night. VIP seats,
autographed memorabilia, and an experience I will always
cherish.
21. One thing I learned throughout this whole process is how
important friendship is. Sometimes one business might not be
able to donate much, but if they team up with other businesses,
the outcome is tremendous.
22. All the volunteers for Blue Door Cut a Thon fundraiser. Thanks
to all involved especially Bekki Johnson.
23. I knew when I started fundraising I would be able to dedicate
my time to one event. I wanted this one fundraising event to
draw people in, make money, and have fun. The First Annual
Eric Buchanan Golf Tournament was one of the best
experiences I have had in my life.
24. We sold out! The country club had to borrow more golf carts
from other locations in order to fill the needs. Thank you Matt
Mercier, Bobby Rosenberg, Jenny Alday, Dan Meyers, Scott
Rohrer, and Bo Jurney!
25. You know it is going to be a good time when the Hooters girls
show up to help. Oh, and free Beer never hurt either. Loosen
those wallets up with some liquid courage!
26. Friends from childhood, high school, and college all came together to
make this day a huge success! The Cardinal Mooney Cougars don’t
think twice about helping a friend. Thanks to you all!
27. This is a short video (5 Minutes) of the tournament. Thank you
Michelle and Diana for following everyone around and making
me feel like I was there.
28. My brother-in-law has been my biggest cheerleader when it
came to spreading the word and getting things done for me. He
went around to local bars, asked if they could save bottle caps
for him, and he started making these custom bottle cap corn
hole boards. He is taking special orders and each one is made
to order.
29. *Warning* From here on out, there are going to be some slides
that are graphic. I am not going to hold back on my experience
and I wanted this to be as real as it was. The weekend before
my huge golf tournament I got a call for a set of lungs. I was
told to go to the ER and wait.
30. This stuff is not fun to drink. It tastes bad and well, it’s called
“Go Lightly” juice. I guess we can see why it is not fun.
31. This is the moment I found out that I was going to have my first dry run. A dry
run is when the doctors find a set of lungs that look good enough to transplant
so they call me up and get me prepared in ER. Once the surgeon goes out to
get the lungs, I am moved to the OR prep room to sign waivers, meet the
nurses and anesthesiologists and get a arterial IV started. The surgeon who
went out to harvest the new lungs decides if the lungs are good enough for
transplant, or they are not good enough. Obviously, a dry run is when the
lungs are not good enough and I get sent home.
32. One trick to staying positive when things are not looking good
is surrounding yourself with the people you love the most. Oh
and using heavy earth moving equipment helps out as well.
33. Being home with family will put a smile on your face no matter
what is going on. I love my two sisters. We share a bond like
no other.
34. A sense of humor helped pass the time between the four dry
runs.
35. I used to love working out but when you can’t breathe, it makes it very
difficult and not as much fun. While on the transplant list I was
required to exercise for 20 minutes 3 times a week. I didn’t have much
but what I did have I needed to make the most of.
36. This was taken on evil Thanksgiving 2014! You are thinking,
“yay he reached his goal of 150.” This number, although
accurate, was due to the fact that I had a blocked bowel. A trip
to the local ER resulted in a long ambulance ride to UNC.
37. I have kept every hospital band from the four dry runs. This
was the last….
38. My faith in the Lord has grown tremendously in just over a year.
I cannot decide if it is because I was close to death and would
eventually stare into its eyes while on the surgery table or if
God was calling me on his own. I started receiving feelings of
overwhelming joy and peace throughout my days. I would be
way out of line if I did not give ALL the credit to God. He put
everything in motion and guided my life every step of the way.
39. This was me, Christmas Day 2014. Hours after surgery but still
awake enough to tell everyone I am O.K.
40. This was my first walk with new lungs. It was late Christmas
Night less than 24 hours after surgery. Notice the rack of IV
medicine behind me? They brought oxygen along but I did not
need it.
41. My little buddy came to visit me the day after. You can see I
still have an IV in my neck, four chest tubes, and one of the two
drains in my abdomen.
42. Bo and I. Words cannot express how I feel about this guy. I get
choked up just thinking about it. Throughout this whole thing,
start to present, Bo has been my biggest supporter. He has
invested so much time and energy into TransplantME that it is
almost unhealthy. A man that puts his family and loved ones
first is the one that already has it all in life. Thank you Bo
Jurney. Without you none of this would be the same.
43. Neck IV is out and bandages changed. I got the closest thing to
a bath. I also had to get a picc line in my right arm in order to
receive my IV drugs.
44. I started this slideshow as soon as I got out of the ICU. I have
been working hard to collect pictures throughout the whole
transplant experience in order to give a more visual idea of
what is involved. These are just a fraction of the pills I will
need to take my whole life as well as a nebulized breathing
treatment that is bright neon yellow and requires a filter to
prevent second hand exposure. I thought I had a fair
representation but apparently I was wrong as I take a lot more
than this.
45. These two klunkers were my chest tube boxes that would help
drain the fluid from around my new lungs. I had a total of 4
chest tubes. Wherever I went I had to bring these two boxes,
an IV pole, and a catheter bag. It gave a whole new meaning to
going to the restroom because by the time I got there, I needed
to rest.
46. They were able to take one chest tube out rather early but the
other three stayed in for a while longer. This is the chest tube.
You can see just above where her bottom hand is there is a
white piece of tape. The white piece of tape is where the tube
entered my chest.
49. I know I look like a goof ball in one of these pictures but I was
so focused on washing my hair, I didn’t care. These cool
shower cap looking things have a dissolvable soap and water in
them. You heat it up and then wash your hair with it!
50. No tubes, no wires, and no oxygen. This is what it was all
about. What you don’t see is the inside of my body that is
completely wiped of all immune system. My body is extremely
vulnerable to infections and disease. The hardest part of this
journey has just begun but I will be ready.
54. This whole experience has been nothing short of amazing. I have gotten support
from people I never thought would show interest in my progress. I have been
humbled time and time again. Often I get asked if this transplant was hard on me
and I tell them no. No because instead of falling just on my shoulders, in a way, it
fell on all of our shoulders. All of you who are reading this have supported me
and eased my burden in some fashion. I have grown so much spiritually and put
my faith in God. Now I want to give back. I have been quietly working behind
the scenes on a project that will literally change the lung transplant process here at
UNC. A few days ago I got the approval from the University of North Carolina
Cardio Thoracic surgery department to help raise funds for a device called XVIVO
Lung Perfusion. I will be posting more about that later. In the meantime, just
because I have been transplanted does not mean my journey is coming to an end.
It is actually just beginning. I will occur the most expenses now until my one year
mark. The possibility for rejection or infection is around 50% the first three months.
More than likely I will experience one or both of these and need to be admitted
back into the hospital and my required stay in Durham will be extended. My
prescriptions are forever changing and therefore will need more authorization
from insurance and probably more money as well. We will be holding the 2nd
Annual TransplantME Golf Tournament in May, June, or July. This time, I will be
there and be giving half of the proceeds to another person in need of a double
lung transplant but who is less fortunate than me. Stay posted and thank you
again for all you have done.
Editor's Notes
Welcome to TransplantME. I will be putting this slideshow on to illustrate the experience of my lung transplant.
It all started when I was young and my sister dressed me up in a ballerina outfit which led to my diagnosis of Cystic Fibrosis.
This was me, four years ago. From this point on in my life, I started losing weight.
The sicker I got, the more the infections nestled in to my lungs and it was not long that I would need oxygen 24/7.
This may look like a lot but…no it’s just a lot. I was needing to take pills, home IV medications, and inhaled medication.
My body started working so hard to breathe that I was burning more calories than I was taking in. This G-Tube was placed in order for me to get extra nutrients while still maintaining my appetite. When everything was said and done, I was taking in around 6,000 calories a day.
I started to slowly gain weight. At my low point, I weighed 114 pounds. The number you see here was the weight I needed to be in order to reach the appropriate BMI for transplant.
The pounds started pouring on shortly after I started my relationship with Mega Stuf Oreos.
I decided in November of 2013 that I was going to start getting worked up for a double lung transplant. Around that same time I also started preparing for fundraising. This is my symbol. I needed something unique that represented who I was and what it was I wanted to accomplish. A friend made this design for me and I fell in love with it.
The first thing I did for fundraising was attack social media. Facebook was my best friend. One of my high school buddies put together my website which made fundraising easy. I started receiving donations almost immediately and felt it was important to personally thank each one that donated.
We have put in several orders for hundreds of shirts and still have some for sale on my website.
Bo made his own and that is why I decided to go to a professional.
So once I had my brand, my website, and all my transplantME swag, the time had come to go raise some money. Chick Fil A was an easy fundraiser and required very little work.
The Chick Fil A crew. The cow freaked out little Katherine Jurney.
I wrote Volcom and told them about my fundraising and wanting to use the Volcom Stone in my design. They said no, but sent me three huge boxes of items that I could use.
Slowly but surely I was getting some of my requests for raffle/auction items for upcoming fundraising events.
The word was spreading about my story and my need for a double lung transplant and people were putting on small events to help raise funds.
My friend Kate put on an event in Austin, Texas. It was at a really nice bar/restaurant and she not only got to have a good time but she also raised a nice amount.
On a few occasions I had people who wanted to do something nice and treat you like a king for a night.
One thing I learned throughout this whole process is how important friendship is. Sometimes one business might not be able to donate that much, but if they team up with other businesses, the outcome is tremendous.
All the volunteers for Blue Door Cut a Thon fundraiser.
I knew when I started fundraising I would be able to dedicate my time to one event. I wanted this one fundraising event to draw people in, make money, and have fun. The First Annual Eric Buchanan Golf Tournament was one of the best experiences I have had in my life.
We sold out! The country club had to borrow more golf carts from other locations in order to fill the needs.
You know it is going to be a good time when the Hooters girls show up to help.
Friends from childhood, high school, and college all came together to make this day a huge success!
My brother-in-law has been my biggest cheerleader when it came to spreading the word and getting things done for me. He went around to local bars, asked if they could save bottle caps for him, and he started making these custom bottle cap corn hole boards. All the proceeds go to me and he has been busy.
The weekend before my huge golf tournament I got a call for a set of lungs. I was told to go to the ER and wait.
This stuff is not fun to drink. It tastes bad and well, it’s called “Go Lightly” juice. I guess we can see why it is not fun.