Post Script from Kevin on one year lungiversary!

Kevin Willette  June 18, 2015  via Facebook

Trish Taylor (Bilateral Lung Transplant June 14th 2014)
HAPPY 1 YEAR LUNGIVERSAY EVERYONE!
My small miracle celebrated her first anniversary of her new life this past Sunday. Last week, her PFTs dialed in at 103% of Predicted Value. Woohoo! She has not seen this volume of lung capacity since she was a little girl. I cannot describe the feeling I get when I see her go up and downstairs without stopping halfway to catch her breath. The gut wrenching sounds of coughing up cups of thick sticky mucous are now a thing of the past, although those sounds I have lived with for 24 years will forever be etched in my memory. Transplant City has graciously welcomed us into the hood and we are still in awe of the events that got us here.
We celebrated the 1 year mark at one of our favorite restaurants. We sat outside in the unusually cool summer weather and looked back at all the photos we took during those incredible weeks we spent at Houston Methodist. We laughed, we cried, and marveled at the impossible logistics that all seemed to fall together perfectly to get us through what was the most amazing, emotional and incredible roller coaster ride we have ever been on! One year ago we were eating here (with the help of oxygen) the day before Trish left for Houston to be on ‘the list’. And I told her then I would bring her back here in a year with new lungs and an appetite…and I held up my promise!
We will be heading to Houston shortly for a 1 year transplant clinic checkup and we pray that everything will go well. We have had a few ‘minor obstacles’ along the way, but we celebrate the “small miracles” as they happen almost daily: they would certainly pass us by if we were not looking for them. The future is uncertain, but we take it day by day,love and laugh often, and have faith in God. At the end of the day, all you really have is
each other, so give your special soulmate a big sloppy kiss tonight and make sure they know how much you appreciate them sharing their lives with you!
We have other friends on social media that are having some hurdles to clear post transplant and our thoughts and prayers go out to all of you. The courageous stories of post-transplant recovery are unbelievable and inspiring. We hope you continue to improve over the coming days.
You WILL make it, and we can’t wait for the day that you join us in Transplant City.
To all of you who have played a part in our journey (and you know who you are), we hope we can pay you back some day with the same kindness you unselfishly gave to us to make this all happen. I’ll say this again, we couldn’t have done it without YOU! Go team TrishKev!!
And to our new transplant friends in the greater Austin area: We enjoy being in Transplant City with such great foks, and we look forward to have more “lung meetups”.
I have to go, my small miracle is tired of waiting and is walking the dogs around the block without me. I had better wipe the tears away before I run and catch up with her....
Breath freely my friends,
Kev

One Year Lungiversary!!! June 14, 2015

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.  

Kevin Willette

October 14, 2014 ·

(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

 

 

Trish Taylor

September 28, 2014 ·

Took the dogs for a ride tonight. It was a beautiful night in the neighborhood.
— with Kevin Willette.

Diane Woge‎Kevin Willette    September 22, 2014 · Hermitage, PA ·Pray all is going well for you both! Haven't read a post lately. Love reading how things are going so inspirational as I am pre tx. Thanks! Hopefully doing so great you are busy enjoying life!

Kevin Willette

December 9, 2014 ·

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

Kevin Willette

December 24, 2014 ·over 6 months.....

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

January 21 · Edited ·

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.

January 20 ·

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!

February 14 ·2015

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

Kevin Willette

February 14 ·

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

March 23 · Edited ·

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 following 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!

Beth Riddle Hartness

March 15 ·

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

April 24 ·

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

April 15 ·

Me ' n my honey, Kevin Willette, celebrating my 10th month lungiversary at the Domain.

Caroline Wright via Donate Life America

April 6 · Edited ·

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 'save,' 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

May 27 at 11:40pm ·

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.

 

May 23, 2015 at 10:41pm ·

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!


 

 

May 15 ·

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!

June 13, 2015 at 5:35pm · 

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! 

 

June 13, 2015 at 6:03pm ·

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!!!!

Happy Holidays, Merry Christmas and Happy Hanukkah!

FAITH!  A family that prays together, stays together.

2014 Happy Holidays from Sunny Texas!  As I write this, the leaves have fallen and it’s a balmy 70 degrees outside! If anybody would have told us that our lives would be turned upside down, and then back over again, at this time last year we would have told them they were crazy!  
 

Let me take you back. December 2013, I (Trish) went into Club Med just for a “tune up” (so I could be out for the holidays) as I was doing “okay” for the most part, although it’s all relative since I was on oxygen 24/7, had increasing, sporadic bouts of hemoptysis, which is bringing up copious amounts of blood when I had coughing fits and losing weight steadily, but that all goes with territory having CF.  So, I was admitted to on Dec. 10^th and lo and behold, my port wasn’t working, which is imperative to have IV antibiotics administered. I underwent surgery, first thing, and when I woke up, I HAD THE FLU again... for the second year in a row over the holidays.  Kevin got it, too, so we were both miserable and apart for the first week during my stay.  The next two weeks, inpatient, had many bumps in the road as well, but it was all in preparation for something BIGGER!

This particular stay was like no other stay!  After 19 days, my lung capacity was under 17% and my Doctor was suggesting a Double Lung Transplantation Consultation, at least.  I could tell by the desperation and tears in his eyes that he was really concerned.  I had always been opposed to having one, but when you are backed into a corner with nowhere else to go, choices limit your decision making. I was having to use more oxygen and still not being able to breathe. Kevin asked me, “What are you waiting for?”  I thought about that for awhile and came to an epiphany right then and there that if I didn’t do something soon, it might be too late and it was worth a CHANCE to LIVE and JUST BREATHE again instead of looking forward to this state of health, or worse, for the rest of my life.  I couldn’t bear to lose Kevin and make HIM endure the pain of losing me, so I fought… and WE fought HARD!  

Three months post transplant on
Labor Day... Bike riding with
my mom and Kevin.

After a pre-evaluation in March, grueling tests for the evaluation in April, which is something which I barely got through as ill as I was, having to uproot with my cousin from Hawaii from our home in Austin to be closer to the transplant center in Houston three hours away and getting on the list in May, on June 14^th “THE CALL” came in. I finally was in the ICU awaiting the operation. It seemed like a whirlwind, although the waiting prior without knowing when they would call was the longest wait of my life.  Hanging on by a thread, wondering if I would be here, on this Earth when they called me was something I prayed on and wondered about. We had friends around the world praying for me and reading our story which we put on a Facebook and a blog to share.  I totally believe in the Power of Prayer and do BELIEVE that God had His hand in all of this. PTL!  Everything leads me to that conclusion. There is no other way.  There is a time and a season for everything and although thinking about the fact that another family would be grieving and mourning the loss of their loved one for my new lease on life, I truly Believe that God has a plan and we should trust what moves us in this Universe.  People have told me since sharing my journey that I have been an inspiration and a blessing in their lives. They are stronger and pull from deep within when they think of what I went through to come out to this SUNSHINE on the other side.  Six months post, as I write this…I’m CELEBRATING my LUNGIVERSARY!!  Happy Happy!  I’m doing great and even running a little for the first time in more than 15 years.  Read more about the whole journey by scrolling backwards in time on this blog!

Beautiful Carla and Ray

Vessie Voo, Boolio and Flookie! Our fur babies!

Enough of about me, though… let’s update you on the ROCK in my life! My reason for living! Kevin!  He changed jobs last October (2013) to Emerson Process after leaving Dell, which he had been employed with for over 6 years.  This fit is so much better for him and he loves the job and people. This year, we were devastated with the sudden loss of his best buddy, Ray Cargo, in April, who was the bass player in his band after a rather quick decline when they diagnosed him with Pancreatic and Liver Cancer at the end of ’13.  We are all still in shock and miss him in our daily lives with that mischievous smile and glint in his eye.   

 Luckily, before Ray passed Air Cargo laid down tracks and made what might be the best Bluegrass CD (awesome listening) to come about from the tunes that they loved and played in the numerous gigs they shared together over the past few years in which the band was together.  Ray reminded us of the SPIRIT of Santa Claus (he looked like him too), the whole year through. Love that man!  Our hearts go out to his wife Carla and all the dear, loved ones we have lost this year. If we REMEMBER them, they will always be close! 

Our Dogters are becoming Senior Citizens now, almost… At least they sleep enough to warrant that label!  Bela, Fleck and Vestal are such a humorous distraction in our lives and make us remember the SIMPLE things like unconditional love, faith, loyalty and FOOD!   

We hope that this year finds you with peace in your lives and a thought that you can do ANYTHING that you set your mind to!  It may take awhile, but you’ll get there! We are proof of that, of course, with the help of my cousin, Caroline. We couldn’t have done it without her.   
With Love and Light along your path! 

‘O Grateful Ones,   Trish and Kevin

Thank you! Thank you! Thank you!

To all the people who have been a part of my transplant journey… I would like to take this time to thank you from the bottom of my shiny, new lungs.  If it weren’t for All ya'll, I would not and could not have done any of this with the grace, courage and endurance which I drew on like bright, sunshine to my mornings and moon glows to my nights. 

The road, thus far, has been a "relatively-easy-looking one from afar", but I realize now that it was one that took place only by the Grace of God.  He has been getting me ready for this my whole life… and I thought CF was hard. When you think that your burden is enough and you can't handle any more. Trust me, say a little prayer to TEST yourself and put a little more on you.  YOU can bear it through Him. You will do the most growing at this time. Trust is a big word, but it has worked for me, my whole life. You're stronger than you think! I'm not friends with WUSSeS!  LOL!

This is new, so it’s only natural that it seems like more of a challenge, but I know in time the Lord will reveal to me, as if He hasn’t already, what I will have in store for the rest of my earth-walking presence here.  I know it will be all good-doings and I look forward to helping others, as I have in the past with their life challenges, as well as great joy in just living and breathing. So many folks have told me that I have been an inspiration to them already, but I'm just a human being trying to survive as everyone else. A quote struck from Eric Melito's wall on Facebook which said: "You never know how strong you are until that is the only choice you have". I know each and everyone of you could, possibly do this, but it "definitely ain't for wusses!"  I am amazed at all the stories you overhear in "Transplant city".

I would like to thank a few people here and I hope and pray that I don’t miss any of ya’ll, but if I do… please know that my gratefulness IS present. If I actually listed names of everyone I know I would miss someone to remember later and then be remiss to not have mentioned them. So I won't LIST anything or anyone besides this blog.   Between the over thirty pills a day I am currently on and the stroke, my memory is just not the same in all the fog I have been through these past three and a half months. As Caroline says..."What happened to my PatPat?", meaning that I was so squared away before...I hope the cloudiness wears off.

My Donor Family, whom I am indebted to for life as I would not be here today probably. That family in perhaps their time of grief (maybe not so, as Donors can stipulate beforehand whether they want to have their organs recycled) who obviously took the worst case scenario in their lives to give a total stranger the Miraculous Donation of Life. I hope to meet them one day and show my gratitude.   I pray for that to happen and perhaps have a little closure for them knowing that ''She lives life, because life lives within her.” If my donor hadn't have come along at God's precise time, I truly believe that I would not be here today. So, that said. THANK YOU from the bottom of my "lungs" and then some!  I am so entirely grateful to my donor.

I'd like to THANK my Team of Transplant Doctors, Surgeons, Specialists, Nurses and Staff members who were instrumental in doing their jobs.  If it weren't the faith and trust I had in them, I don't know if I would have been so calm when I got the call.  Although it didn't go without a hitch, I truly believe it was amazing experience and I can't thank them ALL enough!

Most of you know by now, I am a mom to three girl “dogters”--long-haired Dachsunds whom I love like my own babies (I guess if you don’t have “babies” of your own and never could have them you don’t get it, but it brings out the selflessness, mothering instinct I need to get through life) and they were at the forefront of my mind and one of my first priorities in deciding to go through in this in the first place.  They are very sensitive and therefore, it has taken a toll on them to some extent as well as me with worry and anxiety.  THANKFULLY, I had a “TEAM” of  TRISHKEV Doggie Sitter Warriors who love them and stepped in at the blink of a eye when they were needed.  There were also others who so graciously offered to slip in for doggie duty and I appreciate you all.

Neighbors and life long friends: Stephen and Katie Nicholson (Stephen was in Kevin's HS Barbershop Quartet)

Our doggie sitter and long Bluegrass friend: Jane Laughlin

Neighbor and friend from a former house we lived in: Jeanne Corley

Next Door Neighbors and friends: Sharon and Larry Behringer

Pulling in the reins of the doggie duty, finally… is my mother, Anita Dingman, who so graciously stepped forward and came to Texas for over three months to take care of her grand-babies.  That helped me relax and recuperate in Houston so much better knowing that continuity of care from a family   THANK YOU for everything you have done, mom, I love you so much and your support and love is beyond measure. You were at my side during the evaluation process and helped me every step of the way.  I couldn’t have done that without you. I know it’s “not” a hardship when it’s your daughter, but know I appreciate you taking such precious time away from your “George” during all of this. It is, and will all worth it. Especially taking long walks and endless mile bike rides. I love you.
member would be the thing for my girls.

Also, from the beginning, I was blessed by offers from monetary donations, both great and small, in support of our financial strain during this whole endeavor. We could not and cannot do this without you. You all have so diligently and attentively supplemented and supported us. Kevin had to take the whole three weeks off when I was recovering in the hospital post transplant.  We are so grateful as this will alleviate some of our bills. I don’t know how people do this without the amount of support that I have received.  If I haven't personally written you a thank you letter, please know that I have done so in my mind and heart!  I was writing them steadily until I got so exhausted so I just could not do so anymore. I lost track of whom I wrote and didn't.... but I want to thank EACH and EVERY ONE of you from the bottom of my heart!!! For your cards, letters, checks and works of Art in the mail! It really made my day every single there was mail call! I am working on many more thank you notes every day...although my calligraphy is not up to par yet due to shakiness in my hand from the anti rejection meds and steroids I am currently taking. I am forever grateful!

To my “Houston Family” whom we lived with for a month when we first touched down on this embarkment, I owe them a huge THANKS. Pat and Lucien Lynch, thank you doesn’t even describe the words I have for you.  Taking in two people, “sight-unseen” to just have them live with you for unknown months is a gesture of pure kindness and love. From the moment I met you on that afternoon when we came to Houston for the lunch of great, Italian lasagna, when you made us feel like family, welcoming us into your home with your four-legged friends Bailey (RIP), Sam and Buddy dog, we felt at ease and right at home.  THANK YOU!  I am indebted to you forever and I know I’ve made a lifelong friend.  I’d like to say a shout out to Kevin (grandson) as well for helping us move when we finally went to the apartment, Mike who was always there to lend advice of eateries and great music venues, Carla (Lucien’s sister) who seemed to be my Lucky Charm the night before I got the call for my transplant and the rest of the family we had the pleasure of meeting.  A HUGE THANK YOU is included for the COUSIN of Lucien, Teresa Berthiame, who instrumented this whole introduction to my COUSIN, Caroline.  They are best friends in Hawaii. Sometimes, I wish I had grown up in a big, Italian family. I love you so, too!  I hope to meet you someday!

Next, I want to thank a man I don’t even know, personally… he came from nowhere, after over thirty years ago when he went to High School with my husband, Kevin.  He offered many, many dollars worth of MILES, he had accumulated through his business, to get my peeps to Texas where I needed them.  Stuart Bailey, although we never met, I’ve thanked YOU in my prayers over and over again for your generosity and love through this ride.  Facebook is so wonderful in uniting people from all walks of life.  Thank YOU so very much!

A man who has a heart of GOLD, whom I’ve never met and I have grown to know and love is Eric Melito, the “Just Breathe” T-Shirt man.  Although the whole campaign for the shirts were started when my high school class, back in the Adirondack mountains of New York, wanted to do something substantial for me… stemming from Donna Baugh-Konuch with Audre Ellis taking the ball and running, so to speak (she always did that well) . Between my lettering on the shirt and Eric and wife, Lois’ generous donation of time and profits for a worthy cause (which is what these wonderful people do for others) this has made me the biggest fan and I hope to meet you one day, Eric!  I would love that! THANK YOU, all! The support of my High School and rallying around my hometown of Corinth was so very heartwarming to see. THANK you. http://www.oneon1design.com/

Dr. Caroline (YES! Another Caroline) Willette-Hill, my sister-in-law, whom is honestly the busiest person I know who took the time to fly to Houston for one night for me.  That gesture, in itself,  made my already overstretched heart burst from love. THANK YOU, sweet sister!  I hope we can have some bread pudding sometime soon and sing some of that “Puttin’ on the Ritz” song!

Dr. Gaber and Anne King

Anne King, in Houston, has been a crucial part of this whole journey as well.  She is a post TWO YEAR double lung transplant recipient so I paid attention to her ponderings and experiences.  PLUS, she is a NURSE!  What's not to love about that!
We met in a lung transplant forum where people go to get information and give info pre and post transplant. Since she lived in Sugar Land (‘burbs of Houston), we met for lunch before the transplant and just loved the heck out of her.  She is a strong woman, who raisied three daughter’s as well is a dog person. This is one-tough-but-sweet-woman and I’ve come to know and love her throughout these moths via the messaging on Facebook as well as “Face to Face” time.  When I was backed into a corner, she helped with logistics. When I was clothes-less on the ward in the hospital post transplant, she lended me her “jammies” which we coined “Anne King” Fashion Wear. She has given me solace, consolation and encouragement.  Thank you, Anne!

My CF mentors, Scott Reuter, and cyster Christy Joseph Evans, whom really convinced me that I was strong enough and to just do it!!   I finally decided it to DO IT more than I was afraid of it.  Although mine didn't go as Scott's or Christy's (everyone's transplant story is different) I truly treasure the mentoring and friendship of their journey.

IAMPETH and LEGACIES II family I love you!  Thank you for your blessings, prayers, cards, books and donations! It was quite a shock and surprise to get the cumulative efforts sent my way after the conferences and to know you were thinking of me.Thanks to Nick Vrettos and Carol Measures Scott for spreading the word, receiving and sending the well wishes in the mail.

Sharon McGhehey who is the Doxie Grandmother and friend who put together a fundraiser auction and raised concern and donations for me. Also, Gabi Glass, at Two G Design, who took it upon herself to raise money via selling “Just Breathe” Letterpress cards of which she made with her home press.  They are some fine looking stationery, too! She is still making them to order, by the way.
https://www.etsy.com/listing/188505232/just-breathe-fundraiser-pink-ink?ref=listing-shop-header-1

Sandy, Abbey, Elena who had cards of encouragement in my mailbox weekly, or inbox, texting, messenger daily. Thank you to all of the prayer warriors out there who sent me well wishes NON STOP every day (you know who you are) as well as the mailbags that I received including works of art from people all over the world.  I treasure them every single one of them.

I know that many churches' congregation and Sunday School Classes were involved in making this go full circle.  First Baptist in Hendersonville, TN has been so great in sending me Prayer Grams and praying for me. Thank You, Sheryl Bracey!

I can’t even put into words the feelings I am having about my “soul mate for life” whom I’ve known and loved my whole life from birth!  We grew up together as cousins in two different households much of the time, but most of my memories have her intertwined as me living with her family and my grandmother. Though we are cousins, we really grew up as really, tight sisters who have been side by side through all of life’s challenges. We  know all the secrets which sisters share and some, we will go to our grave with. She is six months my elder and will “always be smarter”, and kinder and snarkier, more loving, kinder and more gentle than me.  There is not a person on this Earth that I would entrust with my soul and sanity but her.  She is the most humble and selfless person I know.  Her heart is so full of LOVE, and not just for me.   She has a multitude of BFF’s all over the world and they love her as well.  My cousin, my caregiver and so much more than that through this is all is Caroline Wright.  She used to be “Carrie” to me when we were little and I was “Patty”. She now calls me “PatPat” and I call her “Caker”.  She’s my “CareCaker”.  We have so much fun together, laughing until our tummies hurt like when we were children. She is serious and assertive when she needs to be and a mom or a companion when I need her to play that role, too.  I have been so grateful to her and COULD not have been so successful with my journey so far if she was not by my side through thick or thin.  I have been blessed by having the pleasure of her wanting to be with me and spending this borrowed time we have been so graciously given.  We always are in constant contact, but there have been many years since our adult lives in which we have not been able to come together to this extent where we could spend “every, waking moment together”.  I can’t say THANK YOU because there is so much more to it and I want to say so I will just say..  what we always say to each other since childhood. ALCAAF!

First and foremost, I am only really HALF of this whole journey. My husband, Kevin Willette, is the purpose and reason I am here today!  He is my Rock, my companion for life, my crazy one, my Caption Sugar and my reason for living!  We have been through so many things together and with the Faith in Our Lord who strengthens us and gives us renewed love and dedication every single day to trudge on through this “Journey of life”.He was ready to give up everything and come live in Houston with me for how ever long it took, even moving to another city for good, but the Lord found a way to still make him a great, viable Team Captain in our TrishKev team by staying home for the pre transplant term and allow him to work, collect insurance and have some continuity and stability for our “dogters” while Caroline and I were struggling in the Houston heat beforehand. I know it was really hard on him, and me too, but he so wanted to have a place in the forefront of this journey and he did that for sure while he rushed down immediatiely after getting the call that I got my lungs. He was there for me until I got our of the hospital, for 19 days and then some post transplant.  He grounded me, encouraged and loved me, gave me hope and focus on the future when I could not look through a second more of pain. He prayed WITH me and for me multiple times a day just allow us to get to the “next” step.  Since he is a runner, he really knows discipline and longevity, when it was time to regroup and refocus on the next part of the marathon and not just getting to the end. I COULD not and would not have wanted to this with or for anyone else.  Although he was a bit paunchy at times due to stress and total lack of sleep, as we all were, he always kept his cool with me and THAT has always been why I love him to the moon and back and then some. Baby, you know now I bark orders WAY louder, but hopefully, you won’t mind.  I love you. I love you. That’s all. Forever.