Some of our "Just Breathe" T Shirt Supporters

Waiting on a breath, forever and a day! On the List!

Hurry up and WAIT!   That's what this whole process is teaching me.  Patience surely is something that one has to embrace. Otherwise, one could go Bonkers!  At least, that is the way it has been for me. I am one who wants things done in a very expeditiously and efficient manner.  When I am told that things will happen in a certain way, I expect them to happen that way. When they don't, I'm okay with it but I at least expect the common courtesy of a phone call or email explaining why things are different. 

I arrived in Houston on Wednesday, May 7th and expected to be placed on THE List that day, as per my coordinator.  When I hadn't even received a call back from her on Monday, after calling her and the assistant numerous times over the course of the week prior, I called the patient advocate who contacted my coordinator's boss.  Long story short, I spent a week longer in Houston than I needed to...away from my dogters and hubby.  The reason being: incompetency and miscommunication on their part. Unacceptable behavior, in my eyes.

All in all, though there was a reason for coming when we did!  We were able to meet a gal, Anne, who had endured the very same double lung transplant which I will endure, just two years previously, here at Houston Methodist. She was going to be unavailable the following week so we took advantage of seeing her and picking her brain. We had a great lunch and she is doing extremely well.  It was yet another positive influence of what this whole adventure may reveal for me. Fingers crossed!

Anne was breathing freely and doing great!  I can't wait to jump in a car, unencumbered by oxygen tubes and breathlessness, and just drive to the beach or to a calligraphy meeting again!  Seems simple and easy, but it's not in this current state which I am in. I'm  trying to make the most of my situation and am quite lucky to have such beautiful surroundings to be convalescing in. Caroline and I are as close to the hospital as we can get, yet we feel like we are living in a resort with a backyard filled with tropical plants and a pool.  The weather has been so mild for this time of year that we often sit outside and enjoy the day.  It's fun being silly with my cousin as it alleviates the seriousness of what we are really here for.

At any moment, we could be called to "GET TO THE HOSPITAL as quick as you can, YOUR lungs are here!"  We are excited and nervous about how that moment will unveil.  I know it will be when we are least expecting it. I just hope it's sooner than later.  I wish there was something I could do to keep my mind off of it entirely, but no matter what I am doing, it creeps back in, slowly and surely. 


I am trusting my faith and know that when it's time, I will be ready.  I will be ready for whatever is on my plate du jour..  I am acutely feeling each moment and breathing as deeply as I can during this time of my life. Writing and doodling in my journal is one thing that keeps me pleasantly amused. Below is one of my entries. I am happy to say that I will be happy to rid my body of these lungs which I have had for nearly 50 years.  They have helped me achieve so many goals and live my life to the fullest so far. I will mourn for them and thank them for getting me here, but I am looking forward to my donor's lungs for the next (perhaps) 20.  What a miracle it will be to have someone elses lungs in my body. I can't even fathom that.  I know that the donor's family will also be in mourning and that has been a hard thing for me to wrap my head around from the very beginning.  I don't know how long I prayed on this aspect of the whole endeavor. What a gift of life they are giving to the recipient. WHY would anyone prevent another from living by not donating?  I know that it is such a personal choice, but once you really think about it... the option seems so obvious to me.
Of course, I have always been a very giving person.  My motto always has been, though, "To each his own".

I'm feeling a little more settled here, in Houston, now, but it's still very hard fitting the puzzle pieces together.  I found a quote which I posted the other day on Facebook which I will share here. I thought it was very much the way I was feeling.

"There are moments in your life when you know you are really living. There are times when you feel a pain so simple and pure that you know you will relive that moment forever. Life hands you a box of jigsaw puzzle pieces and says, “Go for it.” Some of the pieces are for another puzzle; some are old and shapeless. You fit everything together as best you can, sometimes even finishing a large section---only to find that the cat has two heads and the sky in the picture is bright red. Starting again, you see at least one tiny corner is right, creating a frame of reference for you to start to fit the rest together. You can’t stay in that corner, admiring your work for long though. There’s a whole puzzle waiting." Anonymous

I was saying good-bye to my Vessie before I left Austin in this picture.
It was one of the hardest thing I ever had to do.

Saying good-bye

Saying by to my dogters

I didn't want to let go. Getting and giving kisses for the last time.

A gift sent to add SUNSHINE to my day, from Sue-- in our guild.
SHE is a cup o sunshine, for sure.

This signed chalk board arrived in the mail a few days after I moved to Houston.
It was sent by my best buddy in Austin and signed by all my peeps in the Austin Guild.
It came on the perfect day... I was missing everyone so much and still do, but I can
look at it and be reminded of the "Army" of love behind me.

Getting Settled into Houston

We made it to Houston and are happily settling into our new digs.  For those of you who have asked where to send checks, cards and letters of encouragement to me, my address has changed.  Please take note that this is a temporary one. 

Trish Taylor c/o Lynch
2108 Glen Haven Blvd,
Houston Texas 77030. 

I have already received a couple of beautiful cards which lifted my spirits hugely.  It was one of the hardest things I've ever had to do.  Leaving my home, my husband, my family of "dogters" willingly, not knowing what my future held or knowing if I would ever be back in our house again was torture. As you can imagine, the emotions were high on the three hour drive to Houston, but my darling cousin and I tried to keep it as light as possible with tunes on the radio and talking about reminiscent stories of our childhood to keep us silly-hearted.

Here is a picture of my caregiver, Caroline, taking a dip in the pool... with her snorkel from Hawaii, trying to desperately search for her beloved sea turtles which she misses terribly. We are staying in some lovely surroundings with friends temporarily till we can find suitable lodging otherwise.  They have a pool and a gym so I am able to keep up the exercise regime and maintain my strength as much as I can. I know I will need to be as strong as possible beforehand to endure all the post transplant rehabilitation.

Emotionally, this has already taken a toll on my psyche and body, but I am trying to focus on what is important and put my faith in Him. My Lord and Savior has a plan and I am trying to listen and follow diligently. So many of my friends are praying for me and for my patience.  I know that all of the other times when I have been convalescing, during long hospital stays, has led me to this critical point of discipline. The ultimate test of patience and obedience.

Again, I am so grateful for everyone, but especially for my dearest "soul sister" cousin, Caroline, for devoting her LIFE to the care of mine. She is making sure that all my needs are being met and knowing when to give me  space to "mourn" alone when I need to.  I miss my dogters, my hubby, my friends and my old life terribly!

You can leave comments here, send me an email or mail me a card if you like.  Although I may not answer each one, I do read them and they mean the world to me.  My email is still the same:  trishkev@sbcglobal.net

Kissing Cousins

Host, Lucien, in our new home... kitchen in background.

Another baby (or HUGE) step, for me, in the right direction!

After getting my wisdom teeth out yesterday.. I had some fuzzy buddies to help nurse me back to conciousness... they are good sleepers, as was I!  I'm sure nobody likes having invasive procedures done in their mouth, but if it means the difference between life and death.. then it's necessary.  Even just a tiny infection in one's body could trigger something which leads to rejection after a huge operation like a double lung transplant... For the rest of my life, after transplant, I will be a state of subtle to heavy immune suppression so that my body does not reject the "forgeign" bodies they have implanted into my upper torso.  (That is what my system will perceive them as.)  When a virus or infection is contracted in a healthy person's body the immune system goes in to action to irradicate it from the body and return it to a natural, healthy state.  

In my case.... if I didn't take anti rejection pills after transplant, my body would perceive the lungs as a threat and try to kill them.  Any little infection in my body can then be overlooked and unattended...leading to a much more serious infection which could cause acute rejection and possible death.  I did learn that in addition to the anti rejection drugs, I will also be on heavy antibiotics just for this reason... at all times.. They will kill possible infections when they start or first come into my body.... even possibly from my donor lungs as sometimes, certain viruses do not show up in the initial screening and acceptance of the lungs when they test them before implantation. ( CMV...etc.)

So, for now, I am staying put, in Austin... hermiting myself for the time being, staying as healthy as I can be, till I hear about insurance and till I am healed from this surgery  Then, it will be Bon Voyage from my home in Austin to Houston for the duration.  Once I am listed, I cannot come home as it is farther away from the hospital than they allow.  I would love to have a big, send off with all of my dear friends, but crowds and me don't mix right now.  There is too much risk for infection and contagions.  Thank you for your support with all the cards, texts, emails, etc. The power of prayer is working. So far, everything has pretty much gone as planned and in a good direction.... ALMOST there! Please don't give up on me. If I can, I will give it my best shot and be back in the LOOP again soon!  XO Much Love, Trish

Trish is APPROVED as a candidate by the team.....

YAY!!!!! Happy! 

Since the whole week of testing and evaluation, I have been home, in Austin, on pins and needles awaiting a decision from the transplant team in Houston about whether they thought I was a good candidate for the surgery and outcome of this whole, miraculous adventure.  I was notified on Wednesday morning that, indeed, I will be accepted as a Double Lung Transplant Candidate!!!!  The news made me very happy, and a little anxious,as you could imagine.  This means it's REALLY happening.  I think I was in a whirlwind of a tornado from the beginning.... this is truly a reality now.. Feet on the ground..... Ready, set....GO!? 

Well, almost...

A BIG hurdle we have is to wait now for tne insurance company to approve the whole Transplant.  Only the evaluation process was approved up to this point.  I'm sure it's just a lot of paperwork and red tape, but something that may take some time... again.. of waiting!

That's okay though, 'cause I have a few more things to get done before I am placed on the list and a viable candidate waiting for a donor. My team of doctors wanted me to have a few additional things done so that I am in tip-top shape before my whole body is pretty much shut down and  immune suppressed that it could not fight off infection....

#1. I will have to get the dreaded wisdom teeth out and #2. I had to see an ENT (Ear, Nose and Throat) doc yesterday to ensure that everything was all okay in my sinuses.  After enduring ANOTHER painful test of an "Up your nose with a rubber hose" the size of a yard stick, it seemed,  and a comment like: "This might hurt just a little"...ya think?  I am finally cleared in that area, at least.  Nothing to address, at least! WHEW!

After I get my teeth extracted and find a place to live in Houston... even if it is just a temporary stay housing till we find something more permanent,  I will then let my nurse coordinator know so SHE WILL CALL the National Organ Donation Center to make me OFFICIALLY LISTED!

Thanks for sticking with me throughout all of this!  I really appreciate all the love and support I have received and only hope that I can run everyone around in circles after all of this is said and done!  THAT is what I am really looking forward to!  I have the energy in my mind and legs.. just my lungs won't cooperate!

I need to give a special shout out to my "fi-BRO" and comrade whom I've known for over 20 years.  Scott has CF and has been there as a brother and close friend to me for a long time and has helped me through this whole ordeal with his blow-by-blow story of how HIS Double lung transplant went... ALMOST 3 years ago already!  He is my age and is doing great!!!*He even showed me pictures of the ugly, scarred, infected and gaping-holed CF lungs which they removed from his body. They were 8 pounds each and they were filled with mucus and crud from Cystic Fibrosis' devastation!  I so look forward to looking and feeling even half as good as he does!   He is running rings around everyone already and helped me tremendously with the information about the testing and post transplant questions I was dying to know.  My friends Sherri S. and Christy J. E.  also have been super helpful!  Christy got her lungs in just 9 days after being placed on the list and Sherri is still waiting to get her lungs, although she went through the evaluation awhile back and was tabled 'cause she was a little too healthy at the time.  I know she will breathe free again soon, too!

They are blessings to me as ALL of you are ... in each, unique way which you touch my life!!  Spread the word.  We need more organ donors!  Share my blog with whomever you like...and don't you NEED a new T shirt!?   www.oneon1design.com/just-breathe  is where to find the info.   

Happy In Houston!!!

Guess who did the calligraphy? ;o)

Howdy! Trish's cousin Caroline here. Just want to let you all know that Trish made it through this morning's heart catheterization with flying colors! This was the last major test of her evaluation for double lung transplant. HOORAY!!!

This has been a crazy process, filled with meetings with cardiologists, surgeons, social workers, pulmonologists, and others. Yesterday's meeting with the transplant coordinator was pretty scary, because she talked a lot about post-surgical complications that might keep Trish in Houston for longer than the average three months it takes the optimal transplant patient to recover. Today's heart catheterization was the last big test of the week. Afterwards, Trish had to lie on her back for six hours without coughing, which for somebody with CF is a huge challenge. But even as I write this, she's being discharged... and hopefully she'll be home tomorrow afternoon with her darling Kevin and beloved doggies!

Like 95% of other potential transplant patients, Trish will need at least one more test, in addition to all those done in Houston this week. She has a little sinus issue that must be cleared by her ENT, and that will likely be done back in Austin early next week.

The review board, which consists of about 20 doctors and healthcare professionals, will meet next week, probably Tuesday, to discuss her case and test results. At the end of the meeting, they'll contact Trish with one of three decisions:

1. YES: If the board decides that Trish is a viable candidate for transplant, we'll relocate to Houston right away. As soon as we move to Houston, Trish will be listed formally, and she will also receive an allocation number, which designates her position on the list of people who are waiting for lungs.
2. TABLE: The board might decide to table her transplant at this time, for any one of several reasons -- she could need more testing, for example. Or they might decide she's actually too healthy for a transplant, which seems unlikely, but it's possible.
3. NO: Some people are simply rejected as good candidates for lung transplant. Generally, this happens when doctors determine they have serious problems with other organs, or when they're unlikely to survive the transplant surgery or recovery, or to comply with the strict rules for survival that all transplant patients must follow for the rest of their lives. Again, none of this seems to apply to Trish... but it's possible. 

For now, Trish and her doctors are cautiously optimistic. But we won't know anything else till sometime next week. Please stay tuned. Keep your eye on this blog! Over there in the column on the left are several ways to "subscribe" to this blog so you never miss an update. Bookmark it; follow it on Google+; subscribe to posts on Netvibes, Yahoo, or Atom; or (simplest of all) just enter your email address where it says FOLLOW BY EMAIL.

Trish's birthday is May 26. Wouldn't it be terrific if she got a new set of lungs, just in time to celebrate? She says that is her wish! The average wait time for donor lungs is three months, though it could be as long as a year. (Or it could be a matter of DAYS. One of her friends got new lungs just nine days after being listed. Let us all hope and pray that it happens quickly for our Trish!)

One more thing, and it's the most important thing. Trish asked me to THANK YOU, all of you, so many of you, for your thoughts and prayers and kindness and financial donations and offers of lodging, airline mileage, and everything else. If you've mailed her a check or made a donation through her YouCaring website, please remember that she might not respond right away, if at all. That does not mean she is ungrateful -- we all know Trish better than that! It simply means she's trying to stay strong and healthy enough to survive the transplant. (For Trish, just staying healthy is a more time-consuming process than you can imagine.) She's also investigating all that she needs to do and learn before and after the surgery. And oh, yes -- she's also getting ready to move to Houston!  Please forgive her if she doesn't respond, but know that she is humbly grateful for your friendship and support and love.

Much aloha from Caroline

Cousins!!! Caroline on the left, Trish on the right.

Grandma had "balls"... so to speak....

I have Grandma's Balls on in this picture

Next week will be a grueling marathon of tests, at Houston Methodist, to get me prepared and approved for the double lung transplant that we are hoping and praying will extend my life by many, many years....

As I am readying for this week, I always find comfort when I wear a certain pair of earrings.  My grandmother, Helen...whom I am named after, always had a pair of little, gold balls dangling from her ears for as long as I can remember. When I was old enough to realize that those earrings gave her a kind of signature, we always referred to them as "GrandMa's Balls".  When she passed away, I was happily given an identical, new pair by my cousin Caroline.  She said, "Grandma had balls and so do you!"   Caroline also has a pair as do all the women in the family. We all feel they symbolize the "ballsy" strength and resiliency that Grandma always portrayed whether that was the truth at the time or not. In our eyes, she was strong and capable, hard-working, loving,  raised three girls by herself, and was also a bit quirky and fun!

A fond memory of my childhood with her was when she put me on her lap while we were on one of our  back road trips during a berry-picking adventure. She told me I could drive if I wanted to.  Of course I could not reach the gas pedal or the brake, but she let me take over the wheel and drive as if I was in control of the car.  It was empowering and fun. She did not go slow, either!  She told me not to let me parents know that I DROVE that day!  She always did things like that, to make me feel special!  I was told by a very close friend, who knows me well and knew her, that I was very much like my grandmother... that made me smile!  I always looked up to her.

I think she would be proud of the woman I am today and as courageous as this journey will be for us all, I will not go it alone.  I will channel her "balls" at all times...wearing them with courage, pride and confidence.. as well as the "Grace" I will need to endure it all with integrity  (Grace was my paternal grandmother's name)!  I know they are both looking over me. 

See my "balls"?

 Grandma has her "balls" in all of these pictures....

1987

1990's

1993

Helen Gardiner

1982?

1993

1980's?