July 17th, 2010, Kevin and I finally became husband and wife. Yes, I say finally even though we are only 23 and
21. Yes I say finally even though we have so many lessons yet to learn and so many life experiences to embark
on. I say finally, because neither Kevin nor I were supposed to make it to this day. If our parents were truthful with
themselves, they’d probably admit that they didn’t see their children enjoying a normal life, graduating high school
or attending college, and they definitely didn’t envision their children getting married. You see, Kevin and I both
have cystic fibrosis and we are both transplant recipients. While we might have those two things in common, most
of the rest of our lives have been a bit different.
Kevin was born in 1986, by the time he was a year old, Kevin had been diagnosed with cystic fibrosis. He mainly
suffered from malnutrition and digestive issues and by the time he was 2 years old, Kevin had cirrhosis of the liver.
From that point on, Kevin frequented the hospital a couple of times a year for lung infections and visceral vein
bleeds. Even during his years spent doing treatments, IVs and receiving blood transfusions, Kevin tried to maintain
his active lifestyle and enjoyed taking part in outdoor activities such as four wheeling and hunting. Unfortunately,
by the time he had reached his 10th birthday, it became evident to both Kevin’s doctors and family, that he needed
a liver transplant. After the rigorous testing involved with transplant evaluation, Kevin was listed at St. Louis
Children’s Hospital for a liver transplant. He continued to live in Kentucky and kept in close contact with his
transplant doctors in St. Louis while he waited on the list. After nearly two years of waiting, and continued declining
health and lack of adequate transplant offers, Kevin’s physicians considered a relatively new and radical idea,
Kevin would be placed on the double lung transplant and liver transplant list. Knowing cystic fibrosis was a chronic
lung disease his doctors knew that a lung transplant would be in Kevin’s future, even if he got a liver transplant. On
November 11, 1998, Kevin received his lifesaving double lung and liver transplant. He was only the third person in
the St. Louis area to have that transplant combination. Kevin’s battle was far from over. He often admits that his
first 6 months after transplant were worse than anything he’d experienced prior to the surgery. He suffered from
pulmonary edema and he lived in the hospital for nearly four months post transplant. Luckily, Kevin’s tenacity and
zest for life couldn’t keep him down, and by the summer of 1999, he had returned to his hometown and begun truly
living his life. After Kevin’s transplant he was able to focus on all the things he was passionate about. Being from a
small farming town, Kevin learned the ropes of how to tend to his family farm. He became an avid hunter and fisher
and enjoyed spending the rest of his free time four wheeling and hanging out with his friends like everyone else his
age.
I was born in 1988. I was diagnosed with cystic fibrosis soon after birth. I was born with a blockage and it was an
immediate red flag for cf. Unlike Kevin, I had severe lung problems from day one. My very first hospital stay was at
the age of 6 months, and following that, I was regularly admitted to the hospital for lung infections two to three times
a year. I was swallowing pills by the time I was two, I could tell you all the positions for chest therapy by the time I
was three and I was helping flush my own IVs by the time I was four. I grew up knowing that this was my life. I still
enjoyed ‘normal’ childhood things, but they always had a medical aspect. All of my favorite baby dolls went to
surgery with me. Each one got IVs and broviacs. I had more bags of medical supplies to play doctor than I had
Barbie dolls. As I grew older, my hospital visits became more frequent and lengthy. Throughout middle and high
school, I would spend multiple weeks in the hospital, followed by multiple weeks on home IVs. Since I couldn’t take
part in sports, I put all of my efforts into my schooling and I took pride in knowing it was the one thing I could control
and determine the outcome. By my sophomore year in high school, shortly after I turned 16, I had to quit school. I
couldn’t even walk to the dinner table without getting into horrendous coughing fits that left me without any oxygen
or strength to eat. In the spring of 2005, my family and I traveled to St. Louis Children’s Hospital in hopes of finding
some answers. After the week long extensive testing, we received a call that I had the highest score for my blood
type, and I was to relocate to the area immediately. In June of 2005, we moved to St. Louis and I was officially listed
on June 6th, 2005. Just one week later, I got the call and received my double lung transplant on June 13, 2005.
My immediate recovery was much less interesting than Kevin’s. I felt amazing right away, and I wouldn’t let anything
hold me down. I was out of the hospital in 11 days. I joked that it took less time for me to recover from a transplant
than it took for me to have a cf tune up. After two months of rehab and growing stronger and healthier each day, I
was suddenly stricken by a line infection in my broviac that turned into sepsis. It set me back quite a bit and caused
some long term damage to my kidneys, but within two weeks, I was released from the hospital, and shortly after I
was able to move back home to Kentucky. Once home, I returned to high school. I caught up with two semesters I
missed and rejoined my classmates in the middle of junior year. I was able to attend my prom, get a job and drive. I
finally was living the life of a teenager. In 2007, I graduated from high school in the top 7 of my class with a grade
point average exceeding 4.0. I couldn’t believe I had accomplished so many dreams I never thought I’d ever even
have the opportunity to attempt. I set off for college that year and I lived on campus nearly two hours away from my
family. It was during this time, that my life changed in a completely unexpected way.
By now I’m sure you are wondering how Kevin and I ever crossed paths. It’s amazing that it actually took us this
long, really. We both are from Kentucky, but we lived nearly two hours apart. We always saw the same cf doctor
and went to the same hospital. Our families knew of one another, but we’d never really met. While I was living in St.
Louis post-transplant, Kevin and I were introduced briefly, but I joke that we were more interested in talking to each
other’s parents than actually talking to one another. Unfortunately, the meeting wasn’t very impressive to either of
us, and we never thought a thing about the encounter again. ---Until, a mutual cf friend mentioned his name around
Christmas 2007. I naturally thought I should look him up on facebook and add him as a friend. It was purely as a
‘one cf /transplant friend to another’ type thing at first. I quickly realized that Kevin’s profile stated he attended the
same university I did and I simply suggested we should meet for lunch between classes. He ‘commented’ me back,
informing me that he did not go to that school anymore, but he would gladly make the two hour trip to take me to
dinner. Needless to say, we did go on that dinner date, and it ended up being more than a ‘friend’ thing.
Most people assume that Kevin and I were a match made in heaven because we had so much in common with
cystic fibrosis and transplants, but the truth is, the only benefit we gained from those commonalities was the fact
that we could bypass the awkward “… so I have cystic fibrosis and I had a transplant…” conversation that was
always the prelude to every other relationship. We could skip that and go right to the ‘normal’ dating process. We
talked about our hobbies, our goals and our lives, not about our lives as cf and transplant patients. I fell in love with
Kevin because he was everything I wasn’t. He was free, had such a beautiful spirit, and he showed me a refreshing
passion and zest for living. I was generally uptight, cautious and had a plan for everything. While I always lived by
“Life is not measured by the breaths you take but the moments that take your breath away,” Kevin actually enforced
that in my life. I quit planning everything and began enjoying more, living more and actually breathing more. I
learned things I never thought I’d care to learn, like fishing and tracking animals and I began loving this life he
showed me. When he asked me to marry him 1 and ½ years after we first started dating, there wasn’t any
question.
Our life together hasn’t been easy. On top of regular couple issues, we’ve dealt with some pretty devastating
periods of time. The first year we were together, I was diagnosed with chronic rejection. I’d never been sick, not
even had a cold since I’d been transplanted, and out of nowhere, it felt like my lungs were going to give out at any
moment. Kevin was sick at the same time with pneumonia, so we couldn’t be there for each other. Shortly after I
was successfully treated for the rejection, Kevin was admitted to the hospital and he began dealing with rejection
that lasted for nearly 4 months. I couldn’t be with him during this time, because I was still so vulnerable from all the
rejection treatments I’d recently received. Miraculously, Kevin’s rejection was treated and we were able to get back
to planning our life together. We’ve endured the frustrations of insurance, doctors and medical bills but we’ve tried
to keep it from overshadowing our happiness. Kevin and I know our futures will not be easy and parts won’t be fun.
We have a lot of living to do and a lot of things left to learn, but we both agreed, that we didn’t want to live another
day, or learn another thing, unless we were hand in hand. We don’t know what to expect from day to day. We’ve
seen the ambiguity of transplant and know that nothing is a certainty but we are living for the moments, especially
the ones that take our breath away.
21. Yes I say finally even though we have so many lessons yet to learn and so many life experiences to embark
on. I say finally, because neither Kevin nor I were supposed to make it to this day. If our parents were truthful with
themselves, they’d probably admit that they didn’t see their children enjoying a normal life, graduating high school
or attending college, and they definitely didn’t envision their children getting married. You see, Kevin and I both
have cystic fibrosis and we are both transplant recipients. While we might have those two things in common, most
of the rest of our lives have been a bit different.
Kevin was born in 1986, by the time he was a year old, Kevin had been diagnosed with cystic fibrosis. He mainly
suffered from malnutrition and digestive issues and by the time he was 2 years old, Kevin had cirrhosis of the liver.
From that point on, Kevin frequented the hospital a couple of times a year for lung infections and visceral vein
bleeds. Even during his years spent doing treatments, IVs and receiving blood transfusions, Kevin tried to maintain
his active lifestyle and enjoyed taking part in outdoor activities such as four wheeling and hunting. Unfortunately,
by the time he had reached his 10th birthday, it became evident to both Kevin’s doctors and family, that he needed
a liver transplant. After the rigorous testing involved with transplant evaluation, Kevin was listed at St. Louis
Children’s Hospital for a liver transplant. He continued to live in Kentucky and kept in close contact with his
transplant doctors in St. Louis while he waited on the list. After nearly two years of waiting, and continued declining
health and lack of adequate transplant offers, Kevin’s physicians considered a relatively new and radical idea,
Kevin would be placed on the double lung transplant and liver transplant list. Knowing cystic fibrosis was a chronic
lung disease his doctors knew that a lung transplant would be in Kevin’s future, even if he got a liver transplant. On
November 11, 1998, Kevin received his lifesaving double lung and liver transplant. He was only the third person in
the St. Louis area to have that transplant combination. Kevin’s battle was far from over. He often admits that his
first 6 months after transplant were worse than anything he’d experienced prior to the surgery. He suffered from
pulmonary edema and he lived in the hospital for nearly four months post transplant. Luckily, Kevin’s tenacity and
zest for life couldn’t keep him down, and by the summer of 1999, he had returned to his hometown and begun truly
living his life. After Kevin’s transplant he was able to focus on all the things he was passionate about. Being from a
small farming town, Kevin learned the ropes of how to tend to his family farm. He became an avid hunter and fisher
and enjoyed spending the rest of his free time four wheeling and hanging out with his friends like everyone else his
age.
I was born in 1988. I was diagnosed with cystic fibrosis soon after birth. I was born with a blockage and it was an
immediate red flag for cf. Unlike Kevin, I had severe lung problems from day one. My very first hospital stay was at
the age of 6 months, and following that, I was regularly admitted to the hospital for lung infections two to three times
a year. I was swallowing pills by the time I was two, I could tell you all the positions for chest therapy by the time I
was three and I was helping flush my own IVs by the time I was four. I grew up knowing that this was my life. I still
enjoyed ‘normal’ childhood things, but they always had a medical aspect. All of my favorite baby dolls went to
surgery with me. Each one got IVs and broviacs. I had more bags of medical supplies to play doctor than I had
Barbie dolls. As I grew older, my hospital visits became more frequent and lengthy. Throughout middle and high
school, I would spend multiple weeks in the hospital, followed by multiple weeks on home IVs. Since I couldn’t take
part in sports, I put all of my efforts into my schooling and I took pride in knowing it was the one thing I could control
and determine the outcome. By my sophomore year in high school, shortly after I turned 16, I had to quit school. I
couldn’t even walk to the dinner table without getting into horrendous coughing fits that left me without any oxygen
or strength to eat. In the spring of 2005, my family and I traveled to St. Louis Children’s Hospital in hopes of finding
some answers. After the week long extensive testing, we received a call that I had the highest score for my blood
type, and I was to relocate to the area immediately. In June of 2005, we moved to St. Louis and I was officially listed
on June 6th, 2005. Just one week later, I got the call and received my double lung transplant on June 13, 2005.
My immediate recovery was much less interesting than Kevin’s. I felt amazing right away, and I wouldn’t let anything
hold me down. I was out of the hospital in 11 days. I joked that it took less time for me to recover from a transplant
than it took for me to have a cf tune up. After two months of rehab and growing stronger and healthier each day, I
was suddenly stricken by a line infection in my broviac that turned into sepsis. It set me back quite a bit and caused
some long term damage to my kidneys, but within two weeks, I was released from the hospital, and shortly after I
was able to move back home to Kentucky. Once home, I returned to high school. I caught up with two semesters I
missed and rejoined my classmates in the middle of junior year. I was able to attend my prom, get a job and drive. I
finally was living the life of a teenager. In 2007, I graduated from high school in the top 7 of my class with a grade
point average exceeding 4.0. I couldn’t believe I had accomplished so many dreams I never thought I’d ever even
have the opportunity to attempt. I set off for college that year and I lived on campus nearly two hours away from my
family. It was during this time, that my life changed in a completely unexpected way.
By now I’m sure you are wondering how Kevin and I ever crossed paths. It’s amazing that it actually took us this
long, really. We both are from Kentucky, but we lived nearly two hours apart. We always saw the same cf doctor
and went to the same hospital. Our families knew of one another, but we’d never really met. While I was living in St.
Louis post-transplant, Kevin and I were introduced briefly, but I joke that we were more interested in talking to each
other’s parents than actually talking to one another. Unfortunately, the meeting wasn’t very impressive to either of
us, and we never thought a thing about the encounter again. ---Until, a mutual cf friend mentioned his name around
Christmas 2007. I naturally thought I should look him up on facebook and add him as a friend. It was purely as a
‘one cf /transplant friend to another’ type thing at first. I quickly realized that Kevin’s profile stated he attended the
same university I did and I simply suggested we should meet for lunch between classes. He ‘commented’ me back,
informing me that he did not go to that school anymore, but he would gladly make the two hour trip to take me to
dinner. Needless to say, we did go on that dinner date, and it ended up being more than a ‘friend’ thing.
Most people assume that Kevin and I were a match made in heaven because we had so much in common with
cystic fibrosis and transplants, but the truth is, the only benefit we gained from those commonalities was the fact
that we could bypass the awkward “… so I have cystic fibrosis and I had a transplant…” conversation that was
always the prelude to every other relationship. We could skip that and go right to the ‘normal’ dating process. We
talked about our hobbies, our goals and our lives, not about our lives as cf and transplant patients. I fell in love with
Kevin because he was everything I wasn’t. He was free, had such a beautiful spirit, and he showed me a refreshing
passion and zest for living. I was generally uptight, cautious and had a plan for everything. While I always lived by
“Life is not measured by the breaths you take but the moments that take your breath away,” Kevin actually enforced
that in my life. I quit planning everything and began enjoying more, living more and actually breathing more. I
learned things I never thought I’d care to learn, like fishing and tracking animals and I began loving this life he
showed me. When he asked me to marry him 1 and ½ years after we first started dating, there wasn’t any
question.
Our life together hasn’t been easy. On top of regular couple issues, we’ve dealt with some pretty devastating
periods of time. The first year we were together, I was diagnosed with chronic rejection. I’d never been sick, not
even had a cold since I’d been transplanted, and out of nowhere, it felt like my lungs were going to give out at any
moment. Kevin was sick at the same time with pneumonia, so we couldn’t be there for each other. Shortly after I
was successfully treated for the rejection, Kevin was admitted to the hospital and he began dealing with rejection
that lasted for nearly 4 months. I couldn’t be with him during this time, because I was still so vulnerable from all the
rejection treatments I’d recently received. Miraculously, Kevin’s rejection was treated and we were able to get back
to planning our life together. We’ve endured the frustrations of insurance, doctors and medical bills but we’ve tried
to keep it from overshadowing our happiness. Kevin and I know our futures will not be easy and parts won’t be fun.
We have a lot of living to do and a lot of things left to learn, but we both agreed, that we didn’t want to live another
day, or learn another thing, unless we were hand in hand. We don’t know what to expect from day to day. We’ve
seen the ambiguity of transplant and know that nothing is a certainty but we are living for the moments, especially
the ones that take our breath away.
Below is a story Christena wrote to be published in a book about transplant. Hope you enjoy it
as much as I did!
as much as I did!
| By Christena Jones |
