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.

Home Sweet Home

(I got home the 12th of September and just getting around publishing this... sorry!)

I can't believe the joy and bittersweet feelings I had the last time I left our apartment in Houston. I knew I would NEVER come "home" to this place again, the place that grounded me, nurtured me and brought me back to the place I am now.  I know, it's just a "temporary home", but it was a safe haven in the Transplant City whirlwind that I have been in for the last four months in Houston!  Mostly, it was just because I was transitioning from one chapter to the next and with that... something always has to come to an end.  To start something new is incredible and sometimes scary.  Leaving this place, too, I was leaving the life and love I have come to know all over again!  The "childhood life" with my cousin Caroline.  We grew up together and this was the time I have so longed for since adult life to really reconnect with her.  I know I probably drove her crazy from time to time, but it was such a blessing to have her there, always, by my side. We go together like peanut butter and chocolate, caramel and caramel.. and yeah, peas and carrots.

With the excitement of leaving Houston and knowing that I was going home to resume a normal life again, or actually MORE of a normal life than I had been having for maybe the last ten years, considering I couldn't do a lot of the things I had done in the past because of physical limitations like Breathing and exhaustion.  NOW, I felt like I had the world ahead of me again.  Of course, it goes to saying that all the "warnings" from the health care professionals and ones who had gone trhough it all before were swirling in my head... hoping that I wouldn't make that "fatal" mistake and do "something I wasn't supposed to do" in the slew of restrictions I was supposed to follow... and there are MANY! With common sense, though, I think I will manage to get along with my new lungs I am still adjusting to.

With every waking day it just gets better.  The incision hurts less, the side affects of the drugs are beginning to decrease a litttle, I think the levels of the drugs in my blood are probably better stablized as well and I am getting better sleep at night rather than getting up multiple times in pain or to cough, etc.

In the hospital again... getting out MAYBE Monday!

Hello!  It's me, Trish.... writing you from my transplant floor in Dunn4 at Houston Methodist. As Caroline said, I came into the hospital again with a minor complication which we didn't know whether or not it would require surgery. I was doubled over and writhing in pain coming to the ER... I haven't had labor pains, but I felt like I was rushing to the hospital to deliver a baby!  In waves, it was excruciating pain, like 10 out of 10 and then would ease off again for another 8 to ten minutes and then back again for another minute of  severe, intense pain.  Poor Caroline was worried and driving so fast!!!

Beforehand, I was doing so well and working harder than ever with my post double lung transplant regimen, but after I was told by my docs to start eating and then changes to my other meds took place, I don't know what happened but as I have learned from pros on the transplant forum this is par for the course.  I can't say that it was a lesson learned 'cause I still don't know really what caused it.  At least now, when it comes on, I can't kinda tell what it will feel like. Although I was also told that it could feel and be like a multitude of other symptoms. Great!  LOL!

At the least, I got to come in and see all the friendly faces at Dunn4 and interact with them a lot better. They all can see that I am a chatterbox now. Last time, I could barely speak and couldn't get clear thoughts out fluidly.  It's all coming together with baby steps since the hemmoragic stroke during the transplant surgery on June 14.  I also met another couple yesterday whom the husband had a double lung transplant the week before me and he was in here for a gall bladder operation!  Seems like he maybe wasn't following the dietary restrictions, but it's all a new journey we have to learn and adapt.  It's hard when you've built a life time of habits doing completely the opposite things. 

I was praying last night in the wee hours of the morning, as I always do, and just sending vibes of light and warmth to all the people who have crossed my path during the start of my journey from my CF doctor in Austin who suggested that I get evaluated as soon as I could (perfect timing), to the nurse who was taking care of me last night plus all my loved ones, friends, people from around the world who have prayed for me, blessed me with donations for our huge financial strain we have undergone for just a taste of one more time to JUST BREATHE!  I will tell you that I didn't get a lot of sleep, as you know if you've been in a hospital "it ain't a happenin'" so I was up for hours saying all the peoples' names in my head that I remembered *hundreds or thousands, it seemed* and imagining that a happy, light blanketed stream of love would become engulfed all around you and you could feel all the brightness and love you have covered me with.  If you are on the page reading this post, then THAT is you!  Consider yourself loved and hugged by me!  I love you soo much!

An Unplanned Minor Obstacle On The Road To "Normal"

Trish very quietly took a trip home to Pflugerville this past Saturday, August 16, with her doctor's blessing and encouragement... sort of a dry run before she is allowed to leave Houston and go home for good.

YAY! I can eat with my mouth again!

Unfortunately, it didn't go as planned. She's had a lot of nausea with her transplant medications, which is normal, but the nausea got much worse on Monday. By Tuesday night, she was vomiting and in excruciating pain. Kevin took her to an excellent acute care facility in Pflugerville, where the docs ran some tests and did a CT scan and gave her IV meds to stop the vomiting. As soon as she was a bit more stable, we loaded her into the car with lots of pillows, and got on the road heading south.

After a three-hour journey that felt like it took months, with my poor dear little cousin gritting her teeth and occasionally squeaking in pain in the passenger seat, as I drove as fast as I dared and tried to avoid all the bumps in the road... here's what I posted on her Facebook page yesterday (Wednesday, August 20):

I brought Trish to the ER at her Houston transplant hospital today with a slightly more serious minor obstacle. As y'all know, she happily began eating real food a couple weeks ago. Last night, not so happily, she started having severe pain--doubled-over pain--and nausea. She's been admitted for IV meds, tests and labs, observation, and what will hopefully be a non-surgical solution to this problem... in the delicately immortal words of Charles Dickens, 'just a bit of undigested pudding.' Please keep sending bright thoughts and prayers her way!!! She loves all of you and is so grateful for your kindness and concern, as am I. xoxoxo and aloha from Caroline

Even as I write this, she's getting better. This was a mechanical problem, not a bacterial one, and not a rejection issue. No surgical intervention will be necessary! Her lungs still look good. We're hoping very much that she'll be back on track very soon, and released to go home very soon, too!

Thanks so much for all your love and prayers and support!

xoxoxo and much aloha,
Caroline (Trish's cousin) 

Update: 6 week Lung a versary

I, Trish, wrote this yesterday.. on the 6 week Anniversary of my new Birthday, June 14th, when I received the miracle of new lungs and the gift of life!
 

Walking to the mailbox! HOT!

Things are progressing right along, I think... I had clinic last Wednesday and the doctor said I was doing extremely well. There are still minor glitches along the way, but I have a feeling that will always be a factor with lung transplantation. It's a scary thing. I can't thank the donor family enough each morning when I take the first concious breath of life in the morning like a new baby from sleeping the 9 hours of non interrupted sleep from coughing the night before. Thank you!

I had a bronchoscopy on Thursday and haven't received the results back from that yet. They take a biospy when they are in there to check for certain  viruses, bacterial infections and rejection. Hopefully, no news is good news!

I still haven't had the swallow test yet, so no food or drink.. going on Day 10,000, it seems. I know.. have patience.. All in due time... but... this is getting ridiculous. (Yes, I can have GUM now... I guess think this clumsy girl/Gardiner woman won't swallow that?!!) (of course, I have a feeding tube in 24/7

It's already been 6 weeks and I can't wait to go home and start really living again. A normal life.  (At three months, I am shooting for). I know it's all a journey that is that is just the destination, but when it's tearing you from the the dogs and people I love, it's hard.  I couldn't do this alone, or with anyone else, though, than my dear cousin Caroline.  We have so much fun together. I keep her in stitches and she me.. yet we have become so much better acquainted now in life than ever before.. besides when we were growing up and saw each other practically every day. I love her so much.  She thinks I am strong, but I couldn't have done this without her. Really! 

From this, in ICU, this... to being all silly
in the following one at clinic visit! 
I have comeso far and simply say that
I AM more amazing than I thought I 
would be...but don't you go asking
Caroline and Kev..They'd tell you I had
a meltdown or TWO!

I am still doing speech therapy from the hemorrhagic stroke I had in surgery and that is coming along, but not as fast as I like. I, at least, see a little progress everyday and didn't have any residual, physical disabilities. That's good. I gotta keep exercising my tongue and cheeks for the muscles you normally use for speech. There are still tight and sore. Overusing them, too, is a detriment, so I know when enough is enough. It's tough to stop blabber talking when you're on prednisone, though.

I am doing a 20 minute mile already and usually do two miles at a time which, I guess, is good. Some people post-transplant for two or three years can't even do that, I've heard. They could.. they just don't push themselves or are motivated as much as I am. I have motivated some folks already!! YAY! 

Caroline, look!  A staple remover, come
on, remove them for me NOW!!

I got all of my staples out (42 total) 21, last clinic which was great! There still sutures in there, though, that I think were poking me, and the culprit all along, but I don't know if they will dissolve on their own or not. Otherwise, they will cut them out.They're mostly in the side. Any cut or wound, though, is prone to major infection and will not heal like most people, since I am so immune suppressed/compromised right now. Gotta be careful with EVERYTHING! Even poking my finger with a nib.. and some may know how easy that is with those pointed ones. LOL!

I have gained a little weight so far. 88.6 today... up from 82. Getting up there. I would like to be back at my fighting weight of 96. I hope to grow my Bertha Butt back. HEE HEE!

Before my bronchoscopy on Thursday, 24th

So, that's it for me, I think.

Love you lots
Trish

The attached pictures are pretty graphic:

Don’t look at the ones at the end if you don’t want to see my incision, old lungs and staples.  I'll warn you.

 

Wires on the right to hold my sternam together after surgery.

Don't look at these if you can't handle looking all stapled up and with chest tubes in.

This shows the size of the chest tubes (drain) from either side. I had 4 originally in

there and then two came out in ICU, one five days later and then the last one right

before I came home.. about at the 15 day mark. WHEW! Those were the Pitts.

Chest Tube

Stomach feeding tube with 42 staples. They opened me like a
a clamshell to insert my new lungs.  In the meantime, they had
to break my sternam. That is the side view of the xray on the
right side.

TRANSPLANT: it ain't for wimps, y'all. Caroline's son , Matt, calls me the Trishinator 3000. I think I’m only the version short of that.. the Trishinator 2014. 

And, last, but not least the bloodiness of my old lungs which I pay homage to for getting me this far in life.  Now, I have to rely on my gracious, donor's lungs for the rest of my life. A miracle, I wake up to everyday!  Don't go don't further if you can't handle bloody!

DON'T LOOK IF DON'T LIKE GORRY and BLOODY! 

 

This this is the right lung.  The left is below.
What I want to know is "Is this a coffee cup sized
container" or a "Big, bathing tub like they use to
wash a baby"  LOL!

These lungs were so super inflated that I didn't
have an ounce of space in my tight, little compact
body and ribs for these lungs to expand. AND, they had so
much air trapped inside as well as infection that it
was good that they took them as soon as they did.
The reason why they look so "healthy" is that there is
still blood flowing, rather draining in them.. right after
they took them out.  "No, I don't have a picture of my
donor's lungs like this"... but it's up there, at the top in the
X-ray!

Update...from Kevin at post 23 days after transplant

This is what Kevin wrote on Facebook on July 7th

JUST BREATHE UPDATE (23 days post – Trish Taylor – double lung – June 14th 2014 TrishKev Team - Home Base Austin, Texas).

My Smaller Miracle.

Since Trish is getting into the 'recover and exercise' phase, it would be very boring to update you folks every day with trivial stuff like "Trish walked around the block again", or "Trish swallowed some Greek Honey Strawberry yogurt with her meds, then walked around the block again". If I did, you guys would be dropping off of my wall like Humpty Dumpty....

The photojournalism job will lie solely with Caroline as I do not have a strong enough telephoto lens to capture the speedy Trish from 200 miles away. If we encounter anything that we think is out of the ordinary, interesting or changes in health, either Caroline or I will post and update you . Otherwise, silence is a good thing. I remember not getting an update out until well after 1:00 one night and I was getting texts asking if Trish was OK since they had not heard from me! 

Don't worry folks, we will keep you informed about our small miracle as she progresses and dances in the street.

About this time, you are probably asking "Why did you title this 'Smaller Miracle'?"
Well, Trish has been losing weight and our coordinator looked into it and found the smoking gun. Turns out Trish was only getting 800 calories a day through the feeding tube and she is supposed to get 2500!!!!

Are you screaming "WHAT?" at the top of your lungs?

Just a lesson in hospitaleeze.... While I think hospitals in the USA have the best technology and tools for healthcare in the world today, they are still run by people. And anywhere in the world, people always make mistakes. So ya gotta watch everything that goes on in there with an eagle eye. Your life could depend on it!

So my smaller Miracle is smaller (or lighter) than she was last week, but soon they will put steak and potatoes in her feed bag and she will be back to just my "Small Miracle". I love her whatever size she is anyway!

Breathe Easy my friends,  Kev

http://www.youcaring.com/medical-fundraiser/operation-deep-breathe/150515

Help support this cause if you will and can!

OPERATION DEEP BREATHE Day 1-Day 10

June 14, 2014, from Caroline

please please please send your good thoughts and aloha and prayers toward the city of Houston, and specifically toward a sweet little redhead named Trish. this morning we got The CALL: Methodist Hospital has a gently used pair of lungs that might be just right for her. we're on our way to the ER in a few minutes. she's my beloved cousin and... well, please keep her in your thoughts and prayers. much aloha to all y'all!

June 14, 2014, from Trish

I GOT THE CALL !!!!!!!!!!!!!!!! I am headed to the hospital.... PRAYERS everyone!!! HOPE this is my lucky day.. I love you all.... next time you see me, I'll be RUNNING!!! I can't wait! Love xo

June 14, 2014, from Kevin

JUST BREATHE Update...the lungs won't be here for another 2 hours, so we won't know if will be a go for transplant for 3 hours or so.....

Kevin had just arrived from Pflugerville... Trish was so happy!

June 14, 2014, from Caroline
hallo darlings. here's (not much of) an update: we're still in ICU, still waiting. they've told us they might be ready for Trish in an hour. the process: first they recover the lungs from her dear donor, may he or she rest in peace, and then they fly 'em here, and then they will take Trish into the OR. it's very likely she won't be out of surgery till midnight 

The transplant team converges

or so. OHOH WAIT... we just got an update: the lungs look great! it's a GO! they're coming in a few minutes to get her. please keep your prayers and karmic good wishes going in her direction!!!

June 14, 2014, from Kevin

JUST BREATHE UPDATE:: lungs are a go!!!!! They just took Trish to the OR. Surgery should take around 8 hours. Once we heard it was a go, she was surrounded by about 10 members of the team and she was whisked to the OR in about 4 minutes, time was of the essence. Keep y'all posted...

A kiss before transplant!

June 14, 2014, from Caroline

see you soon, dear sweet Trish

June 14, 2014, from Caroline
UPDATE: The surgery is OVER!!! The doc said it was "textbook," no complications, completely uneventful. she won't be awake tonight probably... but everything went well. Now comes recovery, and learning how to breathe with those new lungs!!! To all of you from all of us... THANK YOU for your prayers and your love!

In the waiting room with Kev and Bunny

June 14, 2014, from Caroline

here’s a waiting room shot. YES, THIS IS A BUNNY. no, it is not MY bunny, or Kevin's bunny. it is one of Trish's devoted supporters and it could not bear to be out of the loop, so we smuggled it in. it does not yet have a proper name (or for that matter, a gender). any suggestions???

June 14, 2014, from Kevin

JUST BREATHE UPDATE: surgery is complete, no complications! She will be back up in ICU in 30 minutes. They will do a bronch tomorrow to check out the lungs, then they will wake her up. Thanks everyone for your undying support, still have a long road to go!

Flash cards and post-transplant scribbles

June 15, 2014, from Caroline

just a quick note... Trish is awake!!! she's in quite a bit of discomfort, and mad as anything because communication is so difficult, but her vital signs are excellent and everything looks great so far. (she made flash cards to communicate a few days ago... but expressing specific needs must be done with a Sharpie, and hand squeezes, and eyerolls.) she's already asked when she'll be able to walk, and she's told us she's hungry! please continue to send your thoughts and prayers toward Houston. that's all for now!

Trish & Kev, holding hands

June 15, 2014, from Caroline

here is an update about my beloved cousin, Trish Taylor, who had a double lung transplant just yesterday. she's still in pain, but the breathing tube has been removed and her little body is learning how to use the new lungs. THANK YOU so much for your thoughts and prayers and aloha. and please consider being an organ donor!!! it might be the most precious gift you ever give.

June 16, 2014, from Kevin

JUST BREATHE UPDATE: Trish has stepped down to 1L of O2, sat in a chair this morning, 2 chest tubes are out, Neck and groin arterial lines are out. 5 tubes remaining. She will be out of ICU and in a room this afternoon.

June 16, 2014, from Kevin

JUST BREATHE UPDATE: All in all, a good day. Had a couple of minor bumps in the road, but they are being addressed and should be over them tomorrow. Lungs are doing great, vitals are great and she is free from vent and breathing on her own on 4L O2. They will step down the O2 as she progresses. Sparing all the details (and there are lots of them, believe me!), her condition is par for the course for 24 hours post. Next tube (and there were many) on the list to be pulled is the feeding tube, that will be a few days out. Her voice is still gone from the vent, but she was directing the nurses by writing on a notepad...that's my Trisheeee.

Surprise, tomorrow my sister will fly down to visit for a day taking precious time from her neonatal practice to come out and check on things! Just keeping you guys updated. There are so many things to say but would take about 6 more pages to explain what we have gone through just today. Just know that things are going incredibly well at this point.

With Caroline, Kevin's fantastic sister.

June 16, 2014, from Caroline

We're at Trish's bedside now. she's down to ONE liter of oxygen! and will soon be moved from ICU to a private room where she'll have some privacy and a good bit less noise. She still has a feeding tube, and we're not sure when it will be removed. She still can't talk, because her vocal chords got a bit banged up from the ventilator. But all of this is normal! She's using her phone to communicate with us (thank goodness for Swype keyboards). Please don't call or text her yet, or expect communication from her for a while... just know that she loves you all and is so, so grateful for your prayers and support. xoxoxoxo from all of us to all of you!!!

June 17, 2014, from Caroline

look who took a little walk this morning!!!

June 17, 2014, from Kevin

I am getting tired of grocery shopping, so they had Trish training for HEB duty today, she was really cruising in the hall so proud of her. May I remind you that this is three days post. It is a whole lot harder and intense than it sounds in my posts...Don't know if I could do it. Hats off to my sweety....

June 17, 2014, from Caroline

Aloha y'all! Here is a very quick update, and a message directly from Trish, who wrote this last night just for YOU. :o) She has been moved to a private room! The lines and tubes are being removed one by one, and her oxygen was reduced to one liter as of yesterday and might already have been removed as of last night. She is still unable to talk, but that is pretty common post-transplant. Please remember that we will post updates when we can, but only when there's something new and substantial to share. I know all of you are very curious and concerned, but the three of us (Trish, hubby Kevin, and I) are still pretty exhausted and frazzled. If Kevin and I responded to every inquiry, it would be impossible to take care of Trish (and ourselves!) We can feel your love coming in waves, though, and we are grateful for every thought and prayer you send in her direction, and ours, too. Thanks for being patient and understanding about this! You are the best friends and support team that a little redhead could have!!! xoxoxo from Houston

June 17, 2014, from Kevin

JUST BREATHE UPDATE: Another day of progress and also more bumps in the road. Lung transplants are risky and there are many residual issues that can occur, and we are seeing some of them. We are working through these one day at a time. Still a long road ahead for Trish... Still keep the prayers coming. The major thing are her new lungs and they are doing great.

June 18, 2014, from Caroline

Aloha on a rainy Houston day! I bunked in Trish's room at the hospital last night, and it was a fairly sleepless adventure for both of us, unfortunately. Too many meds, too many BP and pulse oxygen and blood sugar checks, and far too many machines that go PING!!! None of this is unexpected, just inconvenient and uncomfortable. Trish continues to be amazing. She's astonishingly optimistic and 'game,' despite sleep deprivation, the temporary lack of voice, and irritation & concern over the occasional misstep in her treatments. (Remember, she's managed her own health very capably for years, so she knows what SHOULD happen!) But all in all, things are progressing nicely. As she wrote in a note today, 'IS SO INCREDIBLY HARD... BUT I'M KICKING IT!' and here's the most extraordinary thing of all: she says that today, for the first time, she finally feels like those lungs are her own. 'JUST EXCITED!' she writes. 'READY TO RUN!!!' love to all of you from Team TrishKev... keep prayin'. Xoxoxo

June 18, 2014, from Kevin

JUST BREATHE UPDATE: Trish continues to improve. She was cleared of any heart problems that were showing up earlier and were deemed temporary due to the surgery. Other little bumps are being smoothed out gradually. She is having a bronch right now to check the lungs again, biopsy the tissue and flush out residual blood from the surgery Its a routine check they will be doing periodically for the next few months.

June 19, 2014, from Kevin

JUST BREATHE UPDATE: Trish continues to improve. I have not elaborated on the bumps in the road we go through because it is a lot to explain and it might scare some of you when you shouldn’t be. I have prepped myself for the multitude of bumps that could occur, the ones we are hitting are expected and we are actually relieved that they have not been major.

What a collection!

A lung transplant is still a risky operation, but of course it is necessary as you have no other options. So for this update I will describe what bumps we are dealing with just today just to give you an idea of what goes on in our action packed days during this miraculous and incredible journey.

Trish’s vocal chords are the mend and she is sounding a little bit better everyday. It is still frustrating as she tries to say something but it comes out garbled... She cannot soothe them with drink or spray yet because of the aspiration risk. Add a totally dry mouth from the painkillers (which also makes her wonky and cause hallucinations) numerous antibiotics and anti rejection meds, a rubber hose up her nose, and you have a recipe that would stop anybody from talking! As I said before, this is expected to clear up in a few weeks and might require some speech therapy to help speed the process. I told her that I kinda liked the 'silent Trish'... then I found she still has that mean right hook...

Pleur-Evac, for drainage and suction

Trish also has a hematoma in her neck from the subclavian line she had put in during surgery, so they have ordered a heparin drip to dissolve it. But not before a blood thinner drip to get ready for the heparin. Good news is it should break up with the heparin and will not require surgery. During the bronch today they found a small bleed in the lung (from the surgery) and neatly patched it up. One of her chest tubes has increased the drainage, so they attached a suction tube to help it drain blood and air pockets that didn't dissipate after surgery.

My turn for night shift to give Caroline some much needed rest, Its 12:30 and its time for her bronchodilator and inhaled antibiotics to eradicate any Pseudomonas and MRSA in the nasal passages and airway left over from the old lung colonization. Then it is time to move the IV pole, heart monitor pod and chest tube drainage reservoirs to the bathroom area so the Trish can do her thing... Hey, I got my Trishee and it’s another day in paradise!

June 19, 2014, from Caroline

Above is a very detailed update from dear Kev, who is on the night shift with Trish at the hospital. this is pretty graphic, but it's a fantastic explanation of a typical day in the life of a lung transplant patient, a few days after surgery. our Trish is the toughest, most determined warrior I have ever known, and Kevin is a miracle in his own right: her gently fierce protector, her brilliant knight in shining running shoes. how I love these people.

June 19, 2014, from Trish

No strength to text you all, but I am getting better slowly. Caroline Wright and Kevin Willette have been above and beyond words. I don't know how to thank them for this. And you all, too. Prayers up. Still so hard communicating and sleeping. Yesterday was so wonderful to feel the breath for the first time without so much pain. I want to run now... but the journey is beginning now with rehab. Everything is a struggle and challenge but I no wuss... You know me better than that. Just breathe.

June 19, 2014, from Kevin

JUST BREATHE UPDATE (5 days post): I cannot count on my fingers and toes the number of IV antibiotics, antifungal, antirejection bags have gone through Trish Taylor today. Also the doctors: transplant doctor, transplant surgeon assistant, ENT, neurologist, resident neurologist, vascular doctor etc. And I have not listed them all. Trish’s speech is making baby steps forward, general consensus after many consults and examinations is that it is damage from the ventilator, damage that is expected to heal, only time will tell. So add speech pathologist to the doctor list.

Trish with her spirometer

Very emotional day as Trish talked to her Mom the night before, and her best friend Bernice Mosher McCulloch. Of course I was there to facilitate the conversation. Part of the conversation involved Trish showing off her new lungs by blowing into the phone receiver. Trish did start reading all your Facebook comments, but too many tears of joy and thanks kept her from getting through all of them. Then tears of sorrow overcame her as she realized she had not mourned the loss of her old lungs. They were part of her for 49 years, and now she shares a part of someone else who was generous enough to become an organ donor and save others if something unfortunate should occur. Someone who we might learn about one day if the donor's family reaches out to us.

Big news is that Trish is no longer on oxygen! She is free from the tube that has been her lifeline for the last year. Also, the barium swallow test went very well. We will know tomorrow if it will be good enough to remove the feeding tube.

So, progress today. Remember, it is only 5 days post! Transplantation is not an event but a journey, one with high roads and low roads, dark caves and beautiful snow capped mountains. So 'one day at a time' is still our motto. I went out in the sunshine after 30 hours of artificial light and took a walk in the sunlight trying to process everything that has happened in the last 5 days. Then I did what anyone else would do in this situation: I wept, then headed for Chipotles....

June 20, 2014, from Trish

Selfie!

Kevvie!

This photo about sums it up for everyone on Team TrishKev! Caroline Wright worked the night shift but nobody really gets good rest. I love my man so. He is my counterpart and I don't really function without him. I love you baby. ALCAAF, too! Praise Him on the Highest!

June 20, 2014, from Caroline

a wee update on our Trish... after an uneventful night during which she actually got some pretty decent sleep, she decided to take a little walk again today. she did the 700-ft. dash so fast that my camera couldn't keep up with her! she's working with a speech pathologist even as I write this, and looking forward to hearing the formal results of the swallowing study that was done yesterday. we're hoping that her NG tube will be removed soon. she is jonesing hard for a big cup of coffee! love to y'all from Team TrishKev!

June 20, 2014, from Caroline
I got permission from Trish to post video for y'all. (o: Please forgive the vertical shot. I was almost as excited as SHE was.

June 20, 2014, from Kevin

Turbo Trish is on the move!

June 20, 2014, from Kevin

Cousins!!!

JUST BREATHE UPDATE (6 days post) Wow, it has become quite a challenge to figure out what to include in today's update. First things first, everyone please give a huge thanks to Caroline, Trish's cousin. There is absolutely no way this all could have pulled together like it did without her unselfish sacrifice to be the main caregiver on our journey. Her nurturing bedside manner and attention to detail has been outstanding, We will be forever in awe of what she has given up and have done for us. Please give her a big Texas "thank you" when you compose your comment today!

Again, it is difficult to describe the events of the day in detail: this post would become huge and boring if I explained everything that goes on here day by day. Trish and I have battled CF for 21 years and the knowledge I have attained through this period is never apparent to me until I have to explain something. Then it becomes a delicate balance of how much detail to go into without either boring or scaring the receiver of this information. I will do my best to consolidate the events of the day. And to those of you that are somewhat familiar with CF and lung transplantation forgive my brevity.

Pleur-Evac leveling off...

Ok, where was I (can you telI have night duty)? News for today is that one chest tube was removed, one more to go! Trish's swallowing reflexes are not quite recovered yet, so a feeding "button" might be put into her stomach area: the benefit of this is that she can get rid of the "rubber hose up her nose" and be more comfortable and mobile. It is common for lung transplant patients to be released from the hospital with their portable feeding tube in place until the swallowing reflexes strengthen. These are all expected temporary bumps and was no surprise to us when hearing the plan from the team today. I don’t know if you guys realize that she hasn’t had food or drink by mouth for 6 days now. She is craving for just about any food imaginable: I guess bringing a huge ham sandwich up to the room and devouring it in front of her probably wasn’t the best thing to do: I thought that when she punched me the first time that it was just lucky. I see now that was not the case 8).

So, more antibiotics, drugs, rejection meds and chest drainage is the regimen for the weekend, most of which is similar to a regular "CF tuneup". Trish had her first consult with the speech pathologist today. She was given exercises to strengthen her swallow reflexes and speech injury.

Prayers.

I have to say that it was very difficult to process that Trish had suffered a vocal injury during the surgery. But as the anesthesia wore off, it became apparent and my emotions began to weaken my steadfast leadership abilities that was Trish's lifeline back to health. After a lot of prayer and evaluation of what we had found out from the doctors, Team TrishKev has since regained control of our journey, and are focusing all of our strength on getting her lungs online and out of the hospital. We also thank all you FB followers for your prayers and support.

Trish's speech is a little better day by day and today was able to communicate with the staff pretty much without using her pad and paper, albeit slowly. Tonight we had so much fun being able to communicate without a lot of frustration, and several times I had her laughing so hard, I instinctively reached for the pulse oximeter to check her oxygen levels and to make sure she wasn’t coughing up blood: then I realized that I didn’t have to. She was simply elated that she could let go and have a belly laugh without lung pain and "browning out", something that she hasn’t been able to do for many years.

They say laughter is the best medicine, and tonight that proved true. Her speech will get better with time, but this evening we spoke to each other in smiles and giggles, and you know, sometimes that’s all anyone really needs to heal.

It is 3:30 and I hear Trish sleeping like a baby. No wheezing, whistling or rattling of thick sticky mucous in her lungs. I have gotten used to those noises and the low hum of the oxygenator and now I hear silent clear airways breathing free. Hey, no wonder I can’t sleep! Then again, I could listen to that sound all night.

June 21, 2014, from Trish

The above was a post by my baby last night. I'm awake this morning due to being wakened by my nurses shift rounds with iv meds, pain killers and feeding time. I have to take everything by iv port, feeding tube, shot in the belly or the like, so often I feel like a walking port... Hey, but that's okay cause I'm walking!!!

June 21, 2014, from Caroline

aloha y'all! Caroline here, reporting from night shift at the bedside of Ms. Trish Taylor. It has been a fun-filled day for our Trishie, complete with three laps around the transplant floor, a visit from a local friend who delivered some lovely toiletries and a big stack of much-needed jammies (thank you, dear Anne King!), and hours of spectacularly uncontrollable giggling, with her hysterically funny husband Kevin Willette and me. if laughter is the best medicine, she's certainly getting plenty of it! here's a photo of her taken just a bit ago. check out all those goodies on her IV pole. one of 'em is a delicious bag of dinner, and the rest are a tasty cocktail of antibiotics and also anti-rejection meds, to trick her body into accepting her new lungs and giving them a good home. Trish will have to take anti-rejection meds for the rest of her life.

my sister Nancy Newbern asked me a few days ago what it means to 'learn to use new transplanted lungs.' here's a great explanation of the relearning process from a guy who had a double transplant: 'I literally had to learn how to breathe again; my lungs were so damaged prior to the transplant that I had a lung capacity of less than half-a-litre, or around the size of a can of Coke. When your lungs are that small, you only use the muscles around your shoulders and the top of your chest to breath; you develop a hunch from over-working muscles that don’t have the energy to work properly. I had to go back to my old drama school training to teach myself how to breathe with all the muscles available to me again.'

luckily Trish has exceptional muscles and core strength. even her physical therapist is impressed! she took a two-hour nap earlier this evening and woke up so refreshed that she thought it was morning. let us take a moment and send thoughts of love and gratitude to her donor. we still don't know much about her, and perhaps we never will. what we DO know is that she has given the gift of life to somebody who will absolutely make the most of it. holy cow, I've never seen such JOY as I saw on my pat-pat's face tonight. xoxoxoxo from Houston

June 21, 2014, from Caroline
Trish-style yoga, one week after her double lung transplant. DANG, Y'ALL. can I get an AMEN???

June 21, 2014, from Kevin

JUST BREATHE UPDATE (7 days post)  It was about this time of night last week when Trish came out of surgery, receiving her miraculous new breath of life. HAPPY 1 week LungAversary!

Last night, Trish 'ordered' me to go out and have a 'beer and a burger' and relax. While eating a huge Angus beef cheeseburger with jalepenos at the Marriott bar, i struck up a conversation with a guy next to me who was eating a burger and drinking a glass of wine. Turns out, his wife 'ordered' him to eat and 'relax' also. His wife had donated her kidney to help save their relative. Since her blood type was not a match, they participated in a kidney donor network in which you donate your kidney to a recipient, then eventually this will trickle through the donor system and eventually help find a kidney for their relative. So they flew from LA to save the life of a person they did not know in the hopes of saving their own. There are genuine heroes out there that don't necessarily have to die in order to donate their organs to save others. Wow, I just went to get a burger and was humbled by a powerful story. And I am sure it is just one out of thousands that are happening every day here in this immense hospital complex.

Howdy! Here's Turbo Trish.

Quick update so I can get some much needed sleep. It was a routine day of rest, drugs (for Trish of course) and a little bit of physical therapy thrown in (see photo).

Trish did 3 laps today and also sang "You Are My Sunshine" in her squeaky "ventilator voice". She finds it quite amusing to hear herself mispronouncing words, and one sentence can turn into 5 minutes of belly laughing!

Anne King, a friend that Trish and Caroline met in Houston is 2 1/2 years post lung transplant and came to visit and drop off some 'hospital clothes' she didn't need. She is close to the same size as Trish, so it worked out since Trish needed some extra clothes during her stay. Turns out that Anne was on 'the vent' for a week after her transplant and had a similar voice injury for over a month. So her positive reinforcement went a long way today.

Today Trish was able to pronounce my name "Kevin" for the first time in a week. Now this might sound like just some more routine progress for the day, but it was much more of that to me.... I had Trish back physically, but to hear her voice starting to sound a little more normal made me realize how much I missed the entire package. The voice that could soothe my soul, the voice that could make the events of the world seem a hundred miles away: the voice that professed her love for me daily. How much I missed that voice, and by just mentioning my name, I fell in love with her all over again. Yikes, I need to get some sleep, these updates are starting to turn into a romance novel! Breathe easy my friends....

June 22, 2014, from Trish

Day 7....read what my hubby posted. I don't know when I had a better time just LOL... I mean LAUGHING OUT LOUD! A real belly laugh before entailed laughing for 30 seconds and coughing for 5 minutes. Not now though. I love it!

June 22, 2014, from Kevin

JUST BREATHE UPDATE (8 days post) The power of a hug cannot be measured by any man-made device. It is only felt deep within the soul. And when it happens, it is magical. This is the first real hug Trish and I shared since 3 weeks ago. When I arrived in Houston last Saturday, she was horizontal and being prepped for surgery. Since then she has been surrounded by bandages, needless, tubes, and in pain, so hugs were out of the question. Today we finally reconnected, and it was beyond words. I felt like I had been suffering withdrawal from a drug and I finally got my `fix`. The warm rush I felt as her arms surrounded me was intense and I instantly felt relieved. In that very instant, I knew that whatever challenges lay ahead of us at this point didn't matter. I could feel her new lungs rising up and down within my arms, and her hug injected its heavenly power directly into my heart and soul.

How do these updates suddenly turn into sappy romance novel? Is it because of many years of Trish forcing me to watch romantic comedies? Lack of sleep? A potential romance novelist emerging? I don't know and why is not important (keep that thought).

The day was full of laughter and exercise.

Trish is doing great with her cardio laps around the transplant ward. She cruised faster than a Wal-Mart shopper on payday. She is still making small strides with her speech and her voice exercises usually end up in fits of laughter, but it is the strong fighter who can find humor in the most frustrating situations. We may never know exactly the cause, or even if it will resolve completely over time, but like I said before, `why` is not important...it is what it is, the bumps in this incredible journey are risky and will always be a challenge to our patience and faith. Remember, we did not choose to take this journey, but there was a divine plan for us to take this trip for reasons that will be presented to us as time goes on. But for now, the trishkev team stays focused on the very miracle of LUNGS LUNGS LUNGS! They are giving the breath of life to my Trish: she is walking fast and laughing hysterically.

And her hugs still work like you wouldn't believe!

June 22, 2014, from Trish

Nothing to be said but, Amen.

June 23, 2014, from Caroline

ninth day post-transplant... and a hug from a bunny is a beautiful thing. we are holding our own here in Houston, in every way. much love to all of you

June 23, 2014, from Kevin

JUST BREATHE UPDATE (9 days post) Bronchoscopy for Trish today, this one more painful than the last. The night before, they inject what seemed to be a liter of contrast fluid into her feeding tube which dumps it all into the upper intestine. As you can imagine, it is quite uncomfortable and sets you up for several sprints to the bathroom (of course along with the IV pole and chest tube drainage apparatus). That plus getting blood sugars under control (because of Prednisone and CF related diabetes), and that made for a sleepless night. They also planned to insert a J (feeding) tube, but there is a certain threshold of poking and prodding where you eventually say 'enough is enough'. So the procedure was postponed until tomorrow and Trish got some much needed rest from the "laboratory rat" treatment. So some sleep and a little more laughter was the order of the day. And you thought you had the Monday blues!

"So where is the sappy stuff? We want sap" you might be asking?

<sap on>

After a uncomfortable night, it wasn't turning out to be the best of days. But when you least expect it, God has a way of touching you and revealing himself in ways we would never expect. You only have to open yourself up to seeing the signs that are put in front of you.

Today's magic moment unexpectedly arrived about 7:00 AM. While waiting for the bronch, a new nurse (an outstanding Ex-Marine) was coming on shift and he did what no other nurse had done. He first introduced himself, outlined the drug regimen for the day, then he said something in his very low resonant Ex-Marine voice that no other nurse had said to her:

"Would you like to listen to your lungs?"

Eric, the wonderful nurse

Trish took the stethoscope and he pressed the cold steel of the scope to her back in the upper and lower lobe areas. What happened next was golden, and I really don't have the words to describe it. It was akin to a mother holding her newborn for the first time. Her face held several expressions at the same time: wonder, amazement, and happiness, then the tears began to flow. I originally thought she was in pain, but I quickly caught on to the moment. These were her lungs now, sounding clearer than she could probably remember, She instantly bonded to her new addition and was changed forever in that moment. And unlike a new mother, I think she shed some tears of pain for the unknown person whose lungs were now part of her.

....and I thought a breakfast taco would be the highlight of the early morning!

Although the day brought pain from the Bronchoscopy and tiredness from the night before, I could still see a part of this morning's moment in Trish's eyes...And everything else in the world became unimportant..

Now folks, you just can't make this stuff up 8)

<sap off>

June 24, 2014, from Caroline

aloha from Team TrishKev, and here's a photostudy I call "therapeutic calligraphy with IV pump and bunny." 

June 24, 2014, from Kevin

JUST BREATHE UPDATE (10 days post)

These are the times that try mens souls

When Thomas Paine wrote this sentence in his series of pamphlets entitled "The American Crisis", he was trying to inspire the American Colonists during the Revolutionary War. Little did he know that his quote would be used millions of times to inspire and comfort those who are facing situations where the outcome is unknown and a great deal of patience is needed. When you see your loved one going through a lot of pain, our patience is tested at a higher level. The journey to transplant city is full of detours, a lot of them are temporary and painful , but eventually you enter the gates. There are some less fortunate that don’t make it and some that do, but stay only for a while. So, the bumps in the road are many and keeping your eye on the prize is a trying time for both the patient and the caregiver.

It was a difficult day for our Trish. The bronch yesterday caused a pneumothorax, so the chest tube will stay in a little longer. The anti rejection meds levels were starting to ramp up and potassium levels went, down. This caused tremors in Trish's cheeks (a little scary but sort of amusing). So IV potassium and magnesium were prescribed to raise the levels… tremors… gone! Another strange but expected event in transplant land. Then prepped and wheeled down. to surgery for J tube installment until they decided to wait for the pnuemo to heal. SO, back up to the room. THEN down to get an MRI to see what caused her speech injury. Turns out that she suffered some tiny strokes during surgery… Neurologist came by and said they expect a full recovery in a few months.

WHEW OKAY…… JUST BREATHE…… TEAM TRISHKEV ASSEMBLE!

Although the prognosis was the same as for the previous diagnosis, it was difficult to hear the 'stroke' word. The miracle of new lungs took a backseat for a while in order for some tears to flow and stabilize the stress that was building for the last 12 hours. Trish has always called me her 'rock', and I somehow was able to maintain that role through all of this without a meltdown. I have been a member of the lung transplant facebook group for a few months, and the personal stories of incredible awe-inspiring triumphant recovery after the most serious of complications have thoroughly prepared me for just about any situation. Thank you Joanne Schum for making things easier for all those currently on this journey.

So how do you find a sappy moment in all of that, you ask? I don't know, but will try… I was the steadfast soldier today, the one who maintains his stature in the heat of battle. The one who exudes confidence and is an inspiration to his troops during rough times. I was the rock today, and team trishkev pushed through the fog. And I am this soldier today and every day only because of my Trish…

Yes, we are in transplant city now, and we plan to stay!

June 24, 2014, from Caroline

today it rained in Houston. sometimes it takes a little rain to make us appreciate the sunshine. please continue to keep my beloved cousin Trish in your thoughts and prayers. we had a couple of setbacks today, y'all, but our little team has resolved to forge ahead. we will continue to welcome each new day as a gift, whether it is filled with shadows, storms, or sunshine... or a mysterious, beautiful combination of all three.

June 24, 2014, from Trish 
Hey, it's me in here... I just can't get my words out... but I CAN maintain my balance and outwardly, charming attitude, hopefully with the grace of God, through it all. All shall be well! 

TO BE CONTINUED...