Tomorrow is my ONE YEAR Lungiversary! We are celebrating LIFE.... early, late, everyday-- forever... LIFE! Daniel's life, my life and all the lives that this whole journey has touched. So, in honor of one FULL year without rejection we naturally had a BLOOD RED Velvet cake (which turned our tongues red and seemed to be a favorite color of Dan's)... We're having a quiet celebration as I know that for Daniel's family it will be a most somber day.. missing their son, missing their husband and missing their Daddy, uncle, friend, teacher, etc! I'm praying that they are comforted by all the LIVES that he helped to save. Giving Eight of his organs, many, many people will going on living normal, healthy lives as I am. This is me blowing everybody KISSES... BECAUSE I CAN, now!!!!
I am now connected to my new family! Daniel's! I'm loving it!! THANK
you, Daniel's family, for the donation of his lungs in order for me to
go on living!!! One year ago today his life was ended and I've had a
year of milestones, health and blessings! I always live each day with
gratitude but
this takes it to a whole new level! I went into the
surgery with less than 10% lung function and last week my PFTS
(Pulmonary Function Tests) were at an all time high of over 100%. I'
m
not sure if I ever had it that high except for maybe when I was a
child.. not even sure about that, though.
 |
| Team TrishKevCaro!! Reunited for 50th Birthday at the Oasis in Austin May 2015 |
I HAVE new lungs and have a
lot of people to be thankful for! I've said it all before, but I'll say
it again... I would not have been able to come this far without YOU
all... THANK YOU to everyone whom has blessed me throughout my life..
who is in it now and even those whom I don't see so much or at all...I
know you are there, as I am here! I still love you and your
prayers/thoughts mean the world to me. Spread the love! I know I
am/will! Doing the "HAPPY" dance!
Thank you, Thank you, THANK YOU!
I will post here some highlights which Kevin, Caroline or I have pinned to Facebook over the last year just so those of you who do not have a Facebook account can catch up! Sorry about the redundancy for the folks that read our wall.
(Trish Taylor – CF - bilateral lung transplant June 14, 2014)
HAPPY 4 MONTH LUNGAVERSARY!
It was a little after 3:00 in the morning when I awoke to the sound
of.... nothing. Well, nothing but the air movement of 4 pairs of lungs
next to me in a state of slumber. 3 pairs belonged to our beloved long
haired dachshunds. There they were: flat on their backs, paws in the
air, tongues sticking out and obviously enjoying the comfort of a soft
bed and a climate controlled environment. The fourth pair of lungs
belonged to someone else 4 months ago, but they were hers now. The sound
of them breathing again was almost surreal. There was no wheezing or
crackly sounds of stick mucus as her chest rose up and down in a relaxed
unlabored cadence. The air movement was crystal clear and it sounded
to me like a cool breeze signaling the beginning of autumn. I have
awoken hundreds of times in the middle of the night listening to her
distressed breathing as well as violent coughing fits that sometimes
resulted in the gurgling sound of blood due to burst air sacs in her
chest. But not tonight….
Sure, my wife has been home (and
sleeping with me and the pups) for a month now, but something was
different tonight. The silence of her slumber was almost deafening to me
this evening, almost as if there was something wrong and I needed to
take action. But there was no sound of sickness in the air anymore, and
in the power of that moment I was humbled by the Grace of God and our
long 22 year journey that had led up to this moment. My emotions got the
best of me and there was no more sleeping for me tonight. But that
didn’t matter. The woman of my dreams who was months away from leaving
this world was breathing again. My small miracle who has not been able
to blow out candles on her birthday cake for ten years is alive and back
home, living life as usual. Or as usual as you can get.
You see,
Transplant city is very deceiving: it can trick you into thinking you
are healthy and do not need to abide by the rules of the town anymore.
The reality is the 30 pills and 1O insulin shots daily are your
lifeline, no matter how good you feel. Many transplant survivors have
succumbed to this false sense of good health, the penalty being organ
rejection and possibly death.
As I have said before, we are in Transplant city now. We are planning to stay and are not looking back!
Trish is home from her 4 month checkup. She got a clean bill of health
(no rejection issues), and got her feeding tube out. Having a tube
coming out of her stomach for the last 4 months required a lot of
patience, and today it rewarded her with a long hot shower without any
tubes coming out of her body! She has recovered about 90% from her
stroke and is talking up a storm ! Her lung functions are fantastic and
expected to increase even more as time progresses .There are al ways
minor obstacles such as moderate leg swelling, an intestinal blockage,
hair loss and a temporary fever spike, but that is part of the territory
now and we are prepared for the next small miracle as well as the small
obstacles
We are starting to enjoy life again, walking, biking
and doing other things which require a lot of breathing (wink wink).
There are unknowns on the horizon, such as hospital bills, insurance,
and her health of course, but Trish is compiling a new bucket list of
things to do and there is no time but the present, Carpe Diem!
We are both grateful for all of you who have joined us on this journey ,
we REALLY couldn’t have done this without all your prayers and support
and pledges. And it is only just beginning.
Take a special moment
to give praise to Caroline Wright, Trish’s cousin and caregiver who
spent 4 long difficult months in Houston by her side. There will be a
special place in heaven waiting for you my dear.
I arrived home
from work tonight to the smell of yummy homemade vegetable bean soup
that Trish had made . Having the stamina to cook again is another hidden
pleasure that we are both enjoying!
To the outside world, it
might look like a normal evening in the life of a married couple, but to
us, every single moment of the day is a celebration. Life is indeed
precious, and although we are enjoying the new life ahead of us, my
thoughts go out to the donors family who are still mourning the life of
their loved one: a family we hope to meet someday to show them that a
part of their lost love Iives on due to their generosity of organ
donation
Breathe easy my friends,
Kevin
Took the dogs for a ride tonight. It was a beautiful night in the neighborhood.
— with Kevin Willette.
Happy 6 month Lungiversary - Trish Taylor - bilateral lung transplant June 14th 2014
The sun is up and providing much needed sunlight here on the 22nd floor
of Methodist Hospital in Houston. After several consecutive gloomy
days, it was great to see the sun again as it shone down on Transplant
City. From my vantage point up here, I look out and can't help but
wonder how many miracles are happening on this early Monday morning. We
are staying at a hotel near the hospital, and most of the night I am
awakened by the sound of helicopters traveling to and from the multitude
of hospital helipads. I wonder what miracle they are carrying in that
small igloo ice chest en-route to a recipient who has been on a waiting
list for months, possibly years. In some cases, the organs that make it
to their destination are
deemed to be unusable by the transplant
team. Nevertheless, the recipient gets 'the call', then spends hours in
the hospital getting admitted and pumped full of rejection drugs before
getting the news that the organ is bad and it is a "dry run".
Fortunately we never had to experience this!
I feel this
electricity of hope, fear and anxiety in the air every time I visit this
place, and it takes me immediately back to that day when Trish received
her miracle.
It was a day I could never describe the feelings we experienced:
Getting "the call",
Sadness for the donor and their family.
Anxiety about the future,
having to say our goodbyes before the surgery.
Then the 4 longest hours of waiting I would ever experience, and then
the elation of the surgeon coming out to relay the good news.
The ups and downs of the 3 week recovery in the hospital.
These emotions rush through me as if it were that day all over again, and I wrestled to keep myself under composure.
I am sitting in one of several waiting room babysitting Trish's
Starbucks Latte as she undergoes a barrage of testing for her 6 month
checkup. Tears ran down my cheeks as I looked down on Transplant City,
and I wondered again as I have thousands times before why I was created
with an over abundance of emotions? As I get older, I welcome this trait
as more of a 'gift'. For a brief instant it all makes sense: it is a
part of me, and I am at peace with this for the first time in my life.
The moment passes, and also for the first time in my life, I think
seriously about drinking the rest of Trish's coffee.....
Finally,
the testosterone got the best of me, the tears evaporated, I puffed up
my chest and sat back down in the waiting room in true 'lemming'
fashion!
As I looked around, I saw a lot of people with one thing
in common: they didn't want to be here. They were all filling in the
slack time reading a book or communicating via their smart phone, bored
and tired of the hospital routine. And I don't blame them at all. A
clinic day in the hospital is long, and patience is definitely a
prerequisite. But somehow I am far from that feeling of boredom. My
small miracle is here with me, and there is nowhere else I would rather
be. Well, some place else other than the hospital would be nice, but I never question what I am not in control of.
It is now Tuesday morning and as I am writing this, Trish is undergoing
a bronchoscopy to check for any signs of rejection. All the test
results from yesterday's visit look great, and after the bronch today,
we will be free to travel back to Austin and enjoy the holidays
together. The last 3 Christmases and New Years were spent in the
hospital, so we are crossing our fingers that things will be different
this time around, free of oxygen tubes and full of energy. For some
strange reason I am starting to miss the hospital turkey dinner (just
kidding).
On the other hand, our donor's family will be spending
their first Christmas without their precious loved one. We hope next
year we will be able to meet with the family and thank them for their
unselfish sacrifice. They will be in our prayers also this season as
well as all of you who have been on the journey with us.
Yesterday, there was a memorial service at Methodist for a wonderful
gentleman we met in the transplant support group here (an 8 year post
heart recipient). He definitely lived life to the fullest and never took
a day for granted. Fly free Willie, you are in Gods hands now.
Never take time for granted. This Christmas, grab your loved one, look
'em in the eyes and tell them how special they are. We are all small
miracles in our own way.
There is "No day but today...."
Breathe Easy my friends.
Kev
JUST BREATHE UPDATE (Trish Taylor – bilateral lung transplant– June 14th 2014).
Unwanted Gifts
A Blessed Christmas season to all! This is the time to reflect on the
events of the past few months and renew our faith and spirit as we move
into another year full of “Small Miracles and Minor Obstacles”.
Life has a way of throwing curve balls just when you think you have
figured out all of the pitches. It is considered successful if a
baseball player can hit a least 1/3 of the balls that are thrown at him.
So if you feel like life is failing you 2/3 of the time, in baseball
terms you are doing pretty good!
When I was a kid, I experienced
the magic that Christmas brought in the form of wonderful gifts under
that artificial pine tree with the angel stuffed on the top. I couldn't
wait to see what was underneath all that wrapping paper. And sometimes
it brought disappointment when I received a article of clothing from a
distant relative. If I got lucky, sometimes it would even be the right
size! But I eventually ended up wearing those clothes, and I began to
like how they looked on me. What I learned from these experiences is
that there are gifts given to us that are under the guise of something
unwanted. What seems to be a disappointment at first turns out to be
something to cherish in the grand scheme of things. I believe that it is
up to us to figure out the meaning of these gifts and how they are
supposed to play a part in out lives. Somehow this story is taking on a
“We are all made imperfect but perfect in Gods eyes' theme. I suppose
this is pertinent for the holidays though, so I am not too far off
topic!
It fills me with joy to know that I am a part of Gods plan,
and there is a reason and a purpose for everything that happens to us.
But it is difficult for me to feel happy this season when I know other
friends are in pain due to their loss of loved ones. My heart goes out
to beautiful Carla who lost her dear husband this year. A great man who I
had the privilege of playing music gigs for several years. I am forever
changed by his wonderful personality and musical talents. Our donor's
family is also without their spouse this season and it is hard for me to
feel good with so much loss. How can I be happy when others are
hurting? This question has plagued me my entire life; but in my 'old
age', I am finally comfortable with this unwanted gift of empathy.
The greatest gift I have ever received is sleeping peacefully this
morning as a chilly cold wind blows out of the north. The wind chimes
are singing and welcoming the change in weather, and I think back to
last year at this time. My small miracle's health had started its
downward spiral, and after another Christmas in the hospital, I was
totally prepared to give up everything I owned, pick up the anchor and
move to Houston in order to save her life. If my own lungs were a
perfect match, I would have gladly given my life so that she could live
on and continue touching the lives of others. But Trish and I were
chosen to relocate to “Transplant City”, so we are settling in and
enjoying each and every day.
We had dinner the other night with
two other friends and family we had met in Methodist hospital who had
received single lung transplants at the same time as Trish. It was great
to see them living life again, and we all shared common stories of the
fight to live and getting over all the bumps in the road. We prayed
together and toasted the triumph of surviving the last 6 months.
And I toast each and every one of you that has played a part of our
drama that has unfolded over the past year. I have already said that we
could not have done this without all of your support and unselfish
sacrifices. It has been said that you have never truly lived until you
receive a gift from someone that you could never repay. We are both
humbled by all of your unselfish help and support.
My small
miracle will wake up shortly and come downstairs and fill the air with
the smell of freshly brewed coffee. Who could ask for more than that!
Breathe easy my friends
Merry Christmas
Kevin
Yep,
pretty much! Meds are expensive! Be grateful if you don't take a
multitude of cocktails everyday because you don't know how much it can
cost. Even woth the outrageous premiums they are getting,insurance
companies these days companies are barely covering anything, without a
fight, at that. We are changing (no option) companies next month and
we are scared to death but are not going to worry. Things will all work
out, I'm sure.
San Antonio Road Trip... Riverwalk! Mosaic... artwork and then some!
February 22, 2015
Still crazy after ALL these years!! Two kids in a castle, so very
long ago. His Majesty in Blue Tights and his Princess in her (rented)
RED(?) dress (the only one that remotely fit me)! We were on "top of the
world", like Royalty. Happy Anniversary to the man of my dreams.
Almost 20 years (19 and counting) of Wedded Bliss! And, so it was...
they lived Happily Ever After, together!
Today,
in honor of my Donor... Daniel and his family, I have reached yet
another milestone and going strong!!! This marks my 8th month
Lungiversary. So much has happened since that morning I got THE CALL
which I can replay so vividly in my mind. This has changed me forever!
That was my "REbirth", so to speak! I have learned so much and tried to
be an inspiration of Grace and Courage throughout the journey to all
who have been following my story! Today, being National Donor Day as
well as "Happy Heart Day", my love goes out to Tricia, Daniel's wife and
his 2 children. She said to me just yesterday: "It's one of the only
things about this loss that makes us feel better." With every passing
holiday which comes and goes without his presence in theirs, I truly
feel even more gratitude beyond measure. "Grief is the last act of love
we give to our beloved. Where there is deep grief, there is deep love."
This is Daniel..."my brother", who is infused in my soul (and body),
forevermore.
THIS IS FROM KEVIN'S Wall on Facebook
Trish Taylor (Bilateral Lung Transplant May 14th 2014)
Happy 8 month Lungiversary!
Last year at this time, Trish and I were celebrating what was probably
our last Valentine’s Day together. We were busy getting all the
information needed to begin the process of getting her evaluated for a
lung transplant. With all that going on, it was difficult even to
consider having any celebration at all.
Going out to a romantic
dinner was a little cumbersome in her condition, but at this point we
were used to it. We were also used to the stares we received as we sat
down in the restaurant accompanied by the gentle hum of the oxygen
concentrator supplying our own background music. Today we still receive
stares only because of the mask Trish wears to protect her lungs from
any germs potentially invading her immune suppressed system. The lung is
the only transplanted organ that is exposed to the outside air and all
the germs and pollutants that come with it. And that is why a lung
transplant is more risky than all the other organs. The survival rate is
a lot lower also, but at every turn we hear of great success stories of
15-20 year survivors. How wonderful it is to hear this news and it
makes us hopeful for the future and the discovery of new drugs and
techniques that help prolong the lives of recipients.
Trish’s
lung donor (Daniel) was a special person who lost his life very suddenly
without any warning, leaving his wife and family with a huge dark hole
in their lives. Their choice to donate Daniel’s organs was a multi life
saver, and it gave his wife added strength knowing that her husband’s
death was not in vain. Special people receive transplants each and every
day only because of an unselfish decision a person can make to become
an organ donor. Thank you Daniel!
Today is National Donor Day as
well as Valentine’s Day so our hearts have an extra special value. We
gladly give our hearts to that extra special person in our lives, but we
also have the chance to give our physical hearts to help someone in
need in case we happen to leave this earth before our time. If you are
not already a donor, take a little time and think about what it would
mean to you to become one. It isn’t for everybody, but there are
definitely more people on the transplant list than there are available
organs, so we can use all we can get!
Today, we are celebrating
Trish’s 8 month lungiversary. We are having a very laid back day since I
am recovering from an emergency wisdom tooth extraction and an equally
painful lymph node infection. Add having an adverse reaction to the
antibiotics they gave me and that is enough to warrant a laid back
Saturday, enjoying the 70 degree weather and each other. Later, we will
hunt down a box of chocolates and dial in a couple of romantic comedies
to watch. And also think about the road we have been on in the last
year, and about the journey ahead of us in Transplant City. It’s all
about now folks, no day but today!
Breathe easy my friends,
Kevin
I
was at my follow up, (9 month) clinic appointment today in Houston. I
am doing so well that I didn't have to stay for the scheduled bronch
tomorrow. Yay!!! Again, I met three post transplant recipients...two
were CF and another, sweet gal (Shelly)who lives in Houston. She had
schleroderma that led her to COPD. We sat down on a couch adjacent to
hers in waiting room and she asked, "Are you Trish Taylor? " I said,
"How did you know?" I was mind boggled. She was followin
g
my post tx progress from Kevin's daily posts on the lung
transplantation forum. I am so enamored with all the support and love I
am still getting. We traded stories of our journies until I had to go
in for tests and then Kev and she compared notes thereafter. That is
just how it is with "lungers"...so cohesive, informative and supportive
of "their own". I'm eternally grateful to everyone one of you, and not
JUST my tx family. That means all my friends who've given so much love
after I've been back home. Of course, Kevin was at my side, through it
all. Love that man!
Five people unknown to one another less than a year ago, but forever connected through gifts of lung donations.
— with James Hartness, Trish Traylor, Butch Miles, Don Parker and Wally Wilson in Lago Vista, Texas.
James's 70th Birthday party!!!!
Went to a fabulous party in Lago Vista (the Hill Country) this afternoon
for a wonderful person's 70th Birthday ...with his lovely wife
Beth Riddle Hartness, whom I met during my transplant journey. They were so informative and such a support during our time in Houston.
James
had a single lung transplant as well as some of the other people at the
party that we met along my journey. The ones donning the masks, no
doubt, are the ones who have had lung transplants. Butch
Charles J. Miles and
Linda Benjamin-Miles,
Cheri and Don Parker, as well as Bunny and Wally Wilson, whom we met for the
first time today, came. Everything was scrumptious and perfect. Thanks
so much for a delightful afternoon of reminiscing with laughter
I
haven't been on here for very long lately, just to check messages.
I've been under the weather with a tummy bug for the past 3 days. I'm
looking forward to rounding the corner to better things. I don't wish
this bug on anyone is really painful and constant nausea. Xoxo
Me ' n my honey, Kevin Willette, celebrating my 10th month lungiversary at the Domain.
As y'all might remember, last year I spent some time in Texas with my cousin
Trish Taylor,
who was born with cystic fibrosis, a genetic disorder. Trish was on
oxygen 24/7 when I got to Texas. She was averaging about 3 hours of
sleep per night, because she coughed so much. Worst of all were the
increasingly regular bouts of coughing blood. She was, without a doubt,
in the end stages of her terrible disease. On June 14, we got the call
that would save Trish's life - and by 'sav
e,'
I mean prolong it and enhance it and improve it immeasurably. Through
the tragic and accidental death of a very special man in a nearby Texas
town, Trish would receive a gently-used, healthy pair of lungs, to
replace the tired, broken old lungs that had been ravaged by her
disease. Almost ten months later, my beloved cousin is THRIVING. Her
life was saved by the miracle of organ donation. PLEASE BE A DONOR if
you can. It won't hurt, I promise. (o; And it might be the sweetest,
most important gift you ever give. #donatelifemonth
I
was so enamored by this email I had to share with you all. If you know
who this is, then you will know that this man has inspired so many
people over the 30+years with his teaching. He inspired me for the
whole year I studied with him and to this day...9 years later. Thanks,
Reggie Ezell
for making my 50th really special. (He doesn't do Facebook really, or
he might have put it on my wall. ) This is THE REGGIE, folks:
Dear Trish,
Every day is a miracle. So how many miracles old does that make
you? Your mere presence makes the rest of us want to be better, live
what we believe. Thank you for being the living miracle and joy we can
turn to when doubt gets the better of us. Thank you for being born into
this world and making it happier to live in. Love. Reggie
TURNED 50 THIS YEAR!!!! WOW!!!
May 26th, 2015
A dear friend threw me a Birthday Party
with only a few, close friends and I was
MOST grateful! You don't turn 50 every day...
especially having Cystic Fibrosis.
Celebrating
my 50th birthday weekend with my honey and doggies Today. Saw Tomorrowland
yesterday,
Caroline Wright
arrives on my actual birthday. It doesn't get any better than this.
I'm so thankful and happy to be alive still. And, grateful to my donor,
Daniel, for the gift of life. In a couple of weeks, I'll be
celebrating my one year Lungiversary. It's a miracle!
Last night at the
Capital City Scribes Calligraphy Guild meeting. I became VP (again). YAY! Looking forward to delving back in with
Carol McCall at the helm as President! We are so blessed to have her expertise, dedication and innovation! Let's GET ON IT, Carol!
I'm
now connected to my new family! Daniel's! I'm loving it!! THANK you,
Daniel's family, for the donation of his lungs in order for me to go on
living!!! One year ago today his life was ended and I've had a year of
milestones, health and blessings! I always live each day with gratitude
but this takes it to a whole new level!
I went into the surgery with
less than 10% lung function and last week my PFTS (Pulmonary Function
Tests) were at an all time high of over 100%. I'
m
not sure if I ever had it that high except for maybe when I was a
child.. not even sure about that, though. I HAVE new lungs and have a
lot of people to be thankful for! Thank you, Lord!! I've said it all
before, but I'll say it again... I would not have been able to come this
far without YOU all... THANK YOU to everyone whom has blessed me
throughout my life.. who is in it now and even those whom I don't see so
much or at all...I know you are there, as I am here! I still love you
and your prayers/thoughts mean the world to me. Spread the love! I
know I am/will! Doing the "HAPPY" dance!
Tomorrow
is my
ONE YEAR Lungiversary! We are celebrating LIFE.... early, late,
everyday-- forever... LIFE! Daniel's life, my life and all the lives
that this whole journey has touched. So, in honor of one FULL year
without rejection we naturally had a BLOOD RED Velvet cake (which turned
our tongues red and seemed to be a favorite color of Dan's)... We're
having a quiet celebration as I know that for Daniel's family it will be
a most somber day.. missing their son, missing their husband and
missing their Daddy, uncle, friend, teacher, etc! I'm praying that
they are comforted by all the LIVES that he helped to save. Giving
Eight of his organs, many, many people will going on living normal,
healthy lives as I am. See the ICU photos from one year ago tomorrow as
well as me blowing everybody KISSES... BECAUSE I CAN, now!!!!
