Monday, June 30, 2014

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...

Tuesday, June 10, 2014

We have a new address!!!

We are so grateful to our friends, Lucien and Pat, who have been very generous to let us stay in their lovely home while we got ourselves situated and familiar with the Medical Center area here in Houston.  We arrived on the 7th of May and it's already been a month!  We can't thank them enough for all of the hospitality they have shown. They treat us like family and we certainly have made some friends for life!  We love their dogs, as well!

New Address: 
Trish Taylor
8181 Fannin Street, #812
Houston, Texas 77054
If you're sending a PACKAGE, please include the word TEMPSTAY below my name.

This precious time has enabled us to get our bearings and find suitable housing *Thanks to Holly Z. for a referral from her cousin* that is very close to the hospital, in the same general area which we've been living.. We will be able to come back and visit on a regular basis, as well.  They would love us to continue to stay with them but there are so many precautions POST transplant in which we have to adhere to that we felt it very necessary to be able to control our surroundings and living conditions. There are a lot of reasons to move now, so just trust me NOW is the time and not when we are backed into a corner and "have to" (after the transplant and I am in the hospital awaiting discharge. The exodus of college students at graduation just happened and we have been informed that many more are coming in again shortly.


One cannot be too cautious when it comes to so many things after being transplanted and is in a very fragile state.  Live plants as well as children with "LIVE" vaccines are a major concern in addition to many other things that one would not even give a second thought about.  We have learned, in the mandatory classes which we took, many things to reduce the risk of rejection to the lungs. In at least the first month, things will be very strict with a big learning curve. I think I can honestly say, it will be downright scary...much like it would be for new parents taking a newborn baby home for the first time from the hospital. WHAT DO WE DO NOW!?

The little table in our new, upcoming apartment. We move in
on the 10th. 
I will be learning a new lifestyle and learning to cope with new lungs, foreign as they are, healing my insides which were invasively opened up, pried open and parts of my God-given body replaced. I know it will be the most miraculous thing eventually, but there will be a lot of healing and therapy first!  I have faith that I will get through it all. I know that God is upholding me. He will provide me all I need just when I need it. I pray that I am able to rest solely upon Him.

Please keep me in your prayers.  The waiting is the hardest part. I just want to "get this party started"!  Thanks for all your love and support, as usual.  If you want to email me: trishkev@sbcglobal.net
I may or may not respond... it will just depend on how my day is going. I love to hear from my peeps, though, even though I may not have a lot of stamina to talk or write all the time.
Crazeee Cuzin's
Support my fundraising campaign, if you are able, now more than ever.  This could be a long time at an apartment and I am praying that "All shall be well"...  Donate here and/or buy a shirt... There is a new, lovely color of FRESH AIR Blue. 
www.youcaring.com/trishtaylor  or Blog  www.operationdeepbreathe.blogspot.com

www.oneon1design.com/just-breathe  For T shirts

Saturday, June 7, 2014

Deeper, try to breathe deeper!

Please contribute to my fundraiser if you can: www.youcaring.com/trishtaylor

As I lie here in bed trying to get to sleep tonight, gasping to breathe from the raspy crackles in my chest with sharp, excruciating pains of feeling like a bowling ball is rolling around in my lower lungs hurting with every, single breath, I realize that I never really thought about what "End Stage CF" would feel like.  If I had cancer, I guess it would be classified as Stage Four (not much else you can do for treatment) as one is placed in hospice and is just playing the time game. But for ESCF, it's different.  You just have to endure till the pain gets to be too much, without hospice, and hope that your waiting game doesn't take too long or your breath of life will come in time. I think about that a lot.

I sometimes do feel like my situation is similar to that of a cancer patient who has been told they are in Stage Four, but it's a little different because I have "something hopeful" to look forward to... kinda.  If there is time, I do.  I look back at all the loved ones in my life who have accompanied me in my time of need and sickness. They all couldn't imagine anything happening to me.  My cousin Caroline, today, mentioned that if something were to happen "it wouldn't be on her watch" and it made me think about that.  My mom and hubby and even my aunt and sister have been at my side and seen me at about my worst health ever.  I am sure that they probably thought and hoped the same thing.  What if!?  What if something happened to me during the time I was with them? Would they feel responsible? They would really have nothing to do with what I was going through while I was in their care.  What a burden!  I know that it is stressful for her to see me deteriorate and gasp for breath every day, when we used to be footloose and carefree as children, running around together at festivals and throughout life.

With the worsening of my lungs, hardening with scar tissue, filling with thick, sticky mucous constantly and more frequency of hemoptysis (a spurting, gusher of blood letting loose inside my lungs to bring up) never knowing if it will be fatal at each given time, END STAGE CF becomes a reality in my eyes as well as my loved ones.  It's a scary thing.

Being in the "hopeful" place I am at right now is amazing but it's hard to stay positive and really cheerful. I COULD HAVE so much more ahead of me.  I've worked so hard to get here in dealing with my CF, also everything that has taken place to be in the transplant queue and on the list for the miraculous gift of life which I am waiting for.  All those years in which I have been so attentive with my self care to prolong my lifespan brought me to where I am at now... going into my 50th year. I never thought I would get gray hair and even SAY fifty, regarding myself.  And now, I AM here and am possibly getting a second chance at a normal span of an average lifetime. What a lucky girl I could be!

As the days progress and pass by... another month gets turned on the wall... I wonder.  I wonder if I truly do have more work to do here!?  I am hoping that I do and will have a bundle of things for these hands to do. I want to work and help and matter!  I want to pass on the love that people have shown to me and I want to give hope to others who otherwise might not be on a road so smooth, as well.  

I honestly didn't know what my circle of friends encompassed until this happened.  I have cheered for others, been a friend to many and am always so fulfilled in helping people that I have been told NOW, it's my turn to sit back and let others take care of and cheer for me.  I want to pay it forward if and when I get my new lungs.  It will be my gift to the universe after I have received a gift that is unfathomably miraculous.  


New, blue Just Breathe T shirt atat the One on 1 Design site ..To help me with my fundraiser. www.oneon1design.com/just-breathe
Please pray for me. I can feel your love and prayers swirling all around me sometimes. It is a great place to be and a wonderful feeling.  Specifically, pray for me to have peace during this time, free from the everyday stresses of financial burdens this endeavor will encompass, struggles from medical or insurance professionals or people in positions who do not realize the extent of what a person with 17% of their lung function has to deal with each day just to talk or "show up".  Getting out of bed and keeping enough calories in  my body is a struggle, too!  Pray that I get my lungs when the time is right.. that the time is perfect for the universe not just for me. I know I sometimes struggle with the donor family and their grief... so when it is ready and they are ready... that is when it will happen. Not until.  It's not just about my life... it's about someone's loved ones' death, in order for me to breathe again. It will happen, but only when the time is right. Consider donating life.  You, just you, could save up to and help 8 others lives. "Wouldn't you like to be a donor to? Be a donor... " Many people are uneducated on this subject matter, therefore ignorant about their opportunity in life to help and save people.
Me and my honey!


Just a little emotional and wanted to get this off my chest.  I hope to have a very long life ahead of me, but am so thankful that my life so far has been hugely fulfilling and I love you all so much!  Good night... I hope I can sleep now.



 I wrote this the other night and just now decided to share it, even though it is a little DEEP!