Beginning a journey of a new adventure....

I have started a new blog which will JUST be about the transplant.... this will remain, as well, but probably not updated for awhile... click on this link to take you to the new blog! 
www.operationdeepbreathe.blogspot.com

Hey, anyone out there wanting to part with 
a pair of healthy lungs!?  Yeah, I need two
although someone already calls me
"Triple Lung"... just to have a spare one...
on the side

We started our journey to Houston on March 3rd, 2014... In search of a bright, shiny, new pair of lungs for me.... how could I be so fortunate to even think I could warrant such a thing!  We decided to leave after Kev got out of work on Monday since they were predicting both Austin and Houston to be closed down in the morning due to an Ice Storm. 

Thanks to insurance... my POC---
Portable oxygen concentrator.

We secured a hotel next to Houston Methodist Hospital in Houston which had a shuttle to the entrance so we didn't have to deal with the weather conditions in the morning, but when we arrived at our requested hotel, which was really out of our price range of what we wanted to pay... but decided that the location convenience and the shuttle made it worth it, they informed us that the hotel had overbooked and they did NOT have a room available to us!  WHAT!? It's after 9pm and freezing cold... it's starting to drizzle and we are both wiped out from the three hour drive.  The rep at the Wyndham continued on to tell me that since they didn't have a room, they secured us in a room at the Marriot/Methodist which was across and up the street a block or so....

At first, it was a huge inconvenience, but after we saw the even BETTER convenience of the hotel, we were flabbergasted.  God was really looking out for us...for sure.  That was our FIRST choice in hotels to stay in but since the pricing was well over $300 per night we opted not to book with them. Being at the Marriot, made us able to get up in the morning and walk INSIDE the hospital and not out on the icy, dismal state which the sidewalks and roads were in from the ice storm taking place while we slept.  We were blessed and happy with that little benefit!  Luckily, we are both not much of "breakfast people" so I hurriedly just had some coffee in the room and Kev had his usual banana.  Since my first appointment started at 9 am at the Pulmonary lab, it was indicated that we should arrive a half hour early, which we ALMOST did, but we had to walk much farther and SLOWER than we had thought. 

I had my portable oxygenator, which feels like it weighs 20 pounds when you are out of breath in the first place, but Kevin carried that for me as well as all the other stuff I needed for the day... water, food bars, charger for the oxygen, his tablet to keep him occupied while I was in testing and more.  I usually just have it on 2 liters, but I was so out of breath that Kev cranked it up to 3 liters for that "brisk" walk.... as fast as a snail chasing a turtle.  It didn't really help all that much or keep me from getting uncomfortably out of breath, but it did help maintain my oxygen level in my blood while exertion which is important to keep all the organs functioning properly... esp. my brain! LOL!

Yeah, not looking too enthused.. it was early and I was
tuckered out before I started!

When we arrived on the 22nd floor of the Outpatient tower we checked in and had a few minutes to wait and get situated (catch breath and go potty).  They first had to get an Arterial Blood Gas which is where they need to find an artery (not just a vein in your arm/wrist) that goes to the heart... arterial... and get a sample of blood.  This test measures the levels of oxygen and carbon dioxide in the blood to determine how well your lungs are working . It also tells within minutes how much oxygen is REALLY in your blood (not just from the finger probe, which I didn't realize wasn't as accurate by about 2 points.) Mine was quite low, as expected. 

I was happy that I hadn't eaten a big breakfast since I had a whole slew of Pulmonary Function tests and had to walk for 6 minutes to determine my endurance and the condition I was in clinically... not just by numbers on a sheet of paper....  I don't like having a full stomach for tests like these which require breathing in and blowing out really hard.....over and over again! It used to be a "piece of cake" to just go in and knock those things out, but over the past five years or so, they have become increasingly difficult. I can take, what I think is, a deep breath in, but when I blow it out fast and hard.... I feel like everyone in the world is on top of me.... in a "hog pile" .. like we used to do to my cousins (boys) when we were younger. *Luckily, I was never a culprit of that sick "game" or I would have been CRUSHED*  THAT is what it feels like....as if an elephant is sitting on top of your chest, holding you down so you can't breathe or catch your breath.  

Kevin's tablet... watching a Western on his tablet..
while he relaxes in the Pulmonary Lab waiting room for me.
I think he got through at least two movies during the waits!

These slew of tests are "old hat" to me as I have been doing them all my life, but now they are more tiring than what I think a marathon might be like to a runner.  It takes a lot of time, practice, endurance and most importantly psychological power to engage and endure them for as long as it takes when one is not feeling 100%.  Repeatedly, over and over again you place your mouth on a HUGE mouthpiece and put a noseclip on your nose then TRUST that the machine will give you oxygen for your starving lungs and let you breathe... praying that you don't COUGH!  BECAUSE, if you cough... you have just made that test a litttle L O N G E R!!! No, please dear Lord... not longer.  Do Overs are NO fun!  Luckily, I am a pro, but cough's are uncontrollable when you have CF.   I remember telling my dental hygenist I had to cough while I was lying in an inclined position and she said, "that's fine.. go ahead!"... I said, "No, you don't understand... I have to cough hard and I have to sit up!"  So, she put my chair up and almost had a fit with what she saw and heard next.  As I was coughing, turning several shades of red and blue, gasping for air, I told her... "This is normal... no... worries!"  But, people were running into the room with water and curiosity.   Honey... water ain't gonna fix it! UGH!  Anyway.....besides the regular pfts..... this is .....

The Body Box.... this is what it looks like!

By now, my stomach is growling!!! HUNGRY!!!

I got through the 6 minute walk test... thankfully, using 2 liters of oxygen the whole time.. I told the Respiratory Therapist, Jennifer, that we just did a fifteen minute walk just to get there and I should have documented it to report the steps and where my oxygen level was.  She laughed and said that many people state the same....In addition to normal PFTs, I also had to do the Body Box. Had I been one of those people who has a huge aversion to "closed places", well the BODY BOX is a claustrophobic's WORST nightmare.  Thankfully, I am not one of those people and have been doing those particular  tests since the day they were invented. These machines measure not only how much air you can get in and out of your lungs in a given amount of time but also HOW MUCH air is trapped inside your lungs at any given time due to exacerbation or inflammation.... Panting like a dog, while holding your fingers to your cheeks...all the while a HUGE apparatus is in your mouth and your nose is closed.... they tell you "not to be alarmed" when they CLOSE OFF THE air you are breathing through your mouth for a few seconds.  You hear a click and your cheeks go in and out, in and out... with no air exchange... ONE word: GRUELING.  (It would have been SCARY had it been   my first time, but like I said... I have been doing this since I was wearing pigtails, as a little girl).  The Body Box is a clear, plexiglass box that has a chair inside and an arm that juts out of the side and can be adjusted so that you have your mouth comfortably at the right level. See pictures. 

After we were done with the PFT's (Pulmonary function tests), we went down to the 17th floor for a Chest CT scan.  I arrived a 10 min. early ... after nearly two hours of tests in the pft lab.... and was met by a gal who informed me that they did not have me scheduled for an 11 am appointment.  As a matter of fact, they did not even have me in their day's lineup of patients.... NICE!  So, she led me back to the waiting area, had me undress my top to my waist and put on a gown. She said there would most likely be a "little wait" as they would be "fitting me in"! Those words make my blood boil!  YOU know how that goes.... So, an hour later... after having the most pleasant and wonderfully enlightening conversation with another lady in the waiting room... Paula, who was testing for a possible candidate for a liver transplant.... I had an epiphany! I then UNDERSTOOD and understand that it's "JUST GOD" doing His thing. I am on a path... His journey.. although I call it my own.  I cannot adjust the sails... the boat is in motion and is going in the direction that He is leading.  I finally GOT that while I was sitting there waiting and waiting and waiting.  Paula was just another pawn in his "game of life".  We both became quick friends as daughters of a Living and Loving God sharing so much in such a "short" amount of time... She said she would keep me in her prayers after learning my name... which was the same as her best friend... and I told her I would not forget her and I would pray for her as well.  He works in mysterious ways.  Distinctly!   All the while... Kevin is watching GRAVITY on his Tablet in the OTHER, family waiting room!

The CT scan itself was different than the one I had had in San Antonio, just six months prior.  There, I had a contrast injected into my veins ... in Houston, I just had a long, arduous serious of holding my breath and holding back a cough for what seemed like hours but was only about 15 minutes... both on my stomach and on my back with no oxygen.  I did it .... I DID IT... another hard one, but determination and my "disease to please" helped me get through this.... Clear sailing.. not having to repeat any of those tests either. Thank you, Lord!

We shuffled off to the other end of the hospital after that for a noon appointment (still not having anything to eat and just water to drink--checking my Diabetes glucose levels to ensure stability in the interim).... two towers over, (almost back to the hotel) to the LAB... it seemed they should have had a satellite lab on the other side of the hospital (and we were informed that in the future that is their plan) as ALL they did was take five tubes of blood. You ask, why so many!?  Well, for a multitude of tests but ONE was that they wanted to see if my "blood type" had changed since all the other ones I have done in the past...(LOL!). WHY ON EARTH don't they just forgo all that waste in money and testing and "accept the paperwork in black and white" when they see my blood type...It's on my doctors' paperwork which was faxed over ... on my permanent medical record they've accessed to get the approval in the first place AND I could tell them in person... like I do my date of birth and name the hundreds of times they ask!?  Well, I've come to the realization that the Medical Business is JUST that!  A business. They want to spend as much of yours or the insurance company's money as they can to benefit their facility!  I do know how important it is to get the correct information, but when it's been done over and over and over again, I don't think humans are capable of that many mistakes... I'll get off my high horse now...   A calligraphy friend of mine, Diana, told me I ought to reserve my precious oxygen by not having to talk ALL day long and just have a series of Calligraphy FLASH CARDS to hold up when they ask the SAME questions over and over again!  NAME, DOB, Diagnosis, Doctor, procedure, etc.  I might just do that... maybe in gold... illuminated with a decorated letter, perhaps. LOL!

Kevin in the room waiting for
the Pulmonologist.  Skimming
the brochure for further questions
he might have overlooked.

After the thirty minute wait to get a one minute blood draw... we had less than a half an hour to gobble down something that resembled a sandwich, a bowl of soup and more water.  We had a 1pm appointment with the actual clinical team of the lung transplant.... Pre Transplant Nurse coordinator, clinical assistant and one of the five Indian pulmonologists. I am not racist, but I do have a problem with understanding people with a thick accent and that is why I stated that Dr. Kaleekal was Indian. Another facet was that he was very softspoken and a little "emotionless"..even yawned during our short but precious time in meeting with him. * Uh, I'm sorry if our questions  are boring you!*   He asked if we had questions and we did.  Kevin had a bunch of queries written in his tablet to ask him and he seemed to skirt around some of the answers with blanket statements or answers that left us flummoxed later.. wondering exactly what he meant and if he had other meanings to what he had to say.  Luckily, the nurse coordinator, Mariselles, was in the room with us the whole time and we can email her or call to see if she can decipher what the answers might be since she is involved in these situations being that is her profession.  She was very helpful, but still not as competent as I would have liked her to have been with some of the questions she asked and the answers she gave.

All in all, it was a successful visit.  We learned some... gained some knowledge, but still have so many questions that haven't been and possibly NEVER will be answered.  Only God has the answers to my outcome of this adventure.  All's I can do is have faith that I am on the path that He hath laid. Going with the flow and yearning to Let Go and Let God!  It's so hard, if you know me, as I really like to have the control.. know what we're doing... how it will work out and every aspect which I am going through and will endure... but I have to just take that step with informed knowledge off the cliff and close my eyes. I have succumbed to the peace and have accepted that whatever happens is meant to be.  Every day, that is my prayer.. I wake up and Thank God for yet another day of breathing and living and loving and sharing.

A big thank you goes out to our neighbor, and long time friend across the street whom Kevin has known since High School (they were in a barbershop quartet together), for taking care of our three, precious, little "DOG ters".  It's hard leaving them and trusting that they will understand that we will be back SOON!  They don't get that and we just have to hope that they are getting the care that they need, too!

Finally, if it weren't for my Rock... my Kevin... I would never be able to Go Forth and CONQUER this! He makes me laugh, he gives me hugs and reassurance when I need it... encouragement and reality checks too!  He is so capable and intelligent and is the awesome-est hubby he can be! I know I don't tell him often enough as we are both kind of stressed out with this whole, overwhelming process, and I probably only point out the THINGS he is NOT doing (which I am going to try and be much better at), but for all that he does, which is far more than one should expect, I have the deepest gratitude for this wonderful man I have and love. I am the luckiest girl in the world... I can tell you that right now!!!

My cousin Caroline, who is relocating for me from the most ideal and beautiful place in the world: HAWAII, will be here for the endurance of my evaluation and throughout this entire process. I am indebted to her and so grateful that God put her situation at this time in a place where she is able to be there for me and want to do it!  I get lots of requests of what people can do, but this is true love!  She will be living with us indefinitely, until I have my independence back! 

The evaluation is in the books and will commence on the 31st of March continuing for a week of even MORE grueling tests, in Houston, as an outpatient. They say, if you can get through the evaluation then the surgery is a piece of cake.  THAT is not very helpful or something to LOOK forward to,.. but if that is the case... I can do it! I LOVE CAKE!  One step at a time.... one minute at a time visualizing all those who love me in prayers swirling around me besides those in the flesh, by my side.   With all my love... if you have questions.. you can leave your comments here or you can email me directly... trishkev@sbcglobal.net.   XO

Happy New Year, um, yeah, in February!?

This was a beautiful sunset out my
window!  I saw a DOUBLE
rainbow one day... and it wasn't
even raining....

(I started this post one of the 19 days I spent in the hospital..and am just going to post it NOW, as it was a draft for the past two weeks....)
As I sit here and reflect on the past year , I am humbled with the fact that so much has happened...yet everything really is very much the same. We started off the year (2013) in a rough way and ended it by mirroring it, almost.  

New Year's Eve 2013, Mom was visiting and we were set for a quiet evening of watching TV and, of course, the BALL DROP, but by 8:30 I was feeling very tired and hot.  I had spiked a fever of 103 and just wanted to go to bed. So I did!  When I awoke, I was stricken with the flu.  Anyone in their right minds know that when you have the flu all you want is your own bed and own pillow, surrounded by the ones and things you love in your OWN environment.  So, I figured it would run its course and I would feel much better in a few days.  

This was on Christmas Day....2013

The best part of my 19 day hospital stay....2013

When Kevin brought Vessie to see her Mama!2013

2013

Meanwhile, during the 7 days ensuing, my mom and Kevin both got the flu and we were all a sorry bunch of folks... not wanting to eat or move or do anything other than just lie around and moan and groan commiserating with each other.  Finally, the time came when it worsened---instead of getting better for me, Kev insisted that we go to the Emergency room and check into good, 'ol Club Med.  I probably would have sooner had my doctor been in town, but I was hoping I could wait it out till he got back from vacation as things are much easier when you can be cared for by the people who know you and KNOW what to do. So, dragging in on my last thread, I was admitted and only discharged 21 days later... at the end of the month. I thought I would never recover, fully, and it took me almost three months to get the stamina and breath back like it was before. 

One of the many visits with my honey!

Life went on.  I was intending on participating in another Reggie Ezell year which started in January, but after evaluating my situation and endurance, there was no way that I could do that class another, whole year.  That was definitely a disappointment 'cause I learned and grew so much during that class (2006) when I studied with him each month. 

This was the BEST card I got while in there
and I got GOBS of cards..both
Christmas and Get well!
Do do deee day do! Musical!
Made me WANT to dance and
certainly made me smile or laugh!

I still held my positions at Capital City Scribes... website, distribution list, Newbies and scholarship... as well as taught both a program and a mini workshop on Flourishing (although one had to be postponed from February till April) for the guild.   I also was honored to teach at the Houston Retreat at the end of '14.  That was a fun time, but challenging just the same as my energy level has succumbed to a much lower gear...sometimes requiring oxygen just to walk around with any exertion.



In addition to my health having such a bad hit, it was a very hard year for me as we lost another CFer whom I had come to know and love for almost 20 years.  Jane Murry went to be with the Lord in July and it was an utter shock. You just never know when it's someone's time, but she battled CF for over 60 years and her body was ready to throw in the towel. She fought this disease with the best of 'em.  I will miss her as I miss all those who went before her. She was a great inspiration to me and a great "cyster". 

We had many visitors including my mom and her beau, my sister and brother in law, my cousin from Hawaii and Best Friend from Phoenix.  It's harder for me to travel all over the place, which proved true when I attended a pointed pen calligraphy conference in New Mexico over the summer.  It was much more difficult than I thought it would be due to the altitude. (A mile high)  I even THOUGHT I prepared for it, bringing with me my portable oxygen and contracting with a local Medical Supply Company to set up a whole room oxygen concentrator at the hotel, but it proved to be one of the hardest things I have ever done... going it alone. I was left breathless most of the time and if it weren't for one, very helpful and caring friend there, I probably could not have done as well as I did.  I knew it would be hard, but not THAT hard. I see my limitations starting now, more so, than any other time in my life.

Yes... I was a loony bin in there!

 August rolled around and with the inferno of the Texas heat.... we felt it.  Kev's last day at Dell Computer company took place when they let over 200 people go and cut Kevin's job once again.  He had been there for almost 6 years and although it wasn't his favorite place to work, it was a job and it had very good health insurance.  That is most important, even more so than salary, when it comes to having a chronic disease like CF.  We certainly were sweating bullets during that time and as upbeat as we tried to stay, it was a very depressing time to look for jobs and never know if it was ever going to happen!  The older you get in the computer world, the harder it is to find jobs.  If you don't have the exact skill, even though you've proven that you can adapt and overcome with your 25+ years of experience in that field, they don't even want to consider you.  Luckily, only 2 months after the day he was laid off, he was hired at an awesome company which has lead him to grow even more and become more valuable in the future with additional, newer skills which may be needed if he ever finds himself in that situation again.  The company is a very well known one in the industry called Emerson Process Control.  It's a world leader and Kevin really likes the work as well as the people he is surrounded by.  Right now, he is just on a 6 month contract, but is hoping that he will be hired on permanently in the very near future... or at least, have his contract extended for another 6 months. In the world of insurance coverage, though, it leaves us a little uneasy thinking of our future.
 

My Leenda.. who endured not one, but TWO
Double Lung Transplants!  She is my hero!
My cyster forever.

Leading you to this... I have considered getting a double lung transplant over the past couple of years and had a consultation with some folks at a transplant center.  It's a very complicated evaluation which you have to endure just to see if you can even be a candidate. It's filled with lots of grueling and extensive tests as a process to get you into the system.  They have to make sure you are psychologically as well as physically (in all organ areas) ready to take on this huge challenge.  It's not for sissies.  I honestly never thought I would get one, but when you get to the point where you see your life slipping away from you and a chance to make it "good" again, even though you have to make some sacrifices, there comes a time when you have to reevaluate your thoughts and decision process.  I'm sure at some point, there will come a time when I am ready to quit fighting, but I am not there yet. 

So,  with that said... I am at the two week mark in the hospital after spending Christmas in here with the flu AGAIN, for the second time.  I came  in for just a quick "tune up" to get my lungs in better fighting shape for the new year and contracted the flu as well as having to have had another surgery to get my port replaced.... I am not all the way better yet, but I have more work to do during this stay, as I have in the past. It's tough, but I am tougher. 


Luckily, I have the best hubby in the world. He is my Rock and I am his.  I have family who are there for me and friends to boot. I am blessed... and my faith in Him never falters. 

ALL Above was written while I was still in the hospital... below is just an update... How did it become February already!?

Leenda, my Cyster...

Well... as you can see.. I wrote this the first week in January. I am on a charted course now, for a possible bilateral lung transplant.  A lot of paperwork, phone calls and insurance to doctor, doctors to insurance talks have happened and it looks like I will be getting an evaluation at the Houston Methodist Hospital in early March.  I am getting all my ducks in a row. at least, and trying to just move as quickly as I can.  I am not sure what my future will bring, but for the sake of curiosity, I am moving forward.. instead of being in a state of flux or stagnation.  I have faith that whatever happens will be right for me. I am at a perfect calm in either getting it done or not.  I know that God has a plan for me and if He is not through with me yet, then I will proceed in the direction He wishes me and guides me to go.  I hope that I won't take so long to post next time... but stay tuned... Tootles! 

The only FUN outing I have been on since being released from the hospital...2014
It was a friend's wedding in New Braunfels..on Jan. 25th.  This was a photo booth!

Valentine's Roses!

Bernice's visit..September 2013

Fun times with my Best Friend for LIFE!

Late December 2012

Mom took a great shot of Kev and I at Pei Wei's one night!  WOW!
We were even color coordinated.  Somehow we just do that without
knowing what the other is wearing.. or at least are not aware of it.

Me and my little companion in my office!

Mom was sneaky and took this photo without me knowing...
My INCREDIBLY messy studio and desk... seems like that is the way it
usually looks especially around the holidays... no time for cleaning!

We went to Pei Wei several times.... It's an "Asian Fusion" type place with dishes
from all over the world... Thailand, Korea, Japan, China etc. 
We really like it 'cause it's so fresh tasting!

Mom made a great soup (with my addition of some spices) from a friend of
hers and it was delish!  Its primary ingredient was squash!
This was my hat Kev got me in Vegas for Christmas!  It's made out of
Kangaroo Leather!  Love it! It's so soft and breathable.

Here's our resident, pecan poacher!  She can barely move and
the Tree is STRIPPED from Pecans.  Her PRIMARY residence is
across the street in Steve and Katie's attic.... but today, she just sits
here in OUR tree tormenting the doggies.

From Kev's sister, Caroline, a COLORFUL box arrived for Christmas
with lots of goodies in it from Zingerman's! 
It's always fun to open them and see what we can find inside.

Doggies in the backyard.... February!

Vessie PINKING it out today!

May I have this dance?

Bela, my angel!  The Texas sun does a doozie on my lawn ornaments!

Booooootiful Vessie!

I think I smell a worm!

Keepin' an eye on that birdie!

You NEED kisses today! 

Will the day ever end?  When will Daddy come home? WAITING!

Tied together with love!

Pumpkin pie, Oh MY!

Listening to Christmas Music with Mom making Pies

During the holidays... I think mom made LIKE 6-7 pies and they were ALL heartily eaten with love.  Kevin loves pumpkin pie and WE love Lemon Meringue... It was nice to have mom in the kitchen while she was here.. baking away. 

I know there is something to be said about homemade pies, but I just was never one to go to all that trouble. I appreciate it when others do it, but I also think that they somehow have a love for baking "baked goods".  I enjoy making some things, but pies have never been on the top of my list. Not ever sure I have EVER baked a pie.  I have, on the other hand made Banana/pumpkin/zucchini Bread, cookies and cakes/cupcakes on a regular basis... never regular bread, though, except for the time when we had that bread machine and I went through that phase... waiting forever, it seemed... Baking pies, though, is something that my mom always did and I never carried on that tradition.

I caught her in the action ... LOL!

 It's funny how that sort of thing, in a family, gets delegated as one grows up!  My mom had two sisters and they were "known" for their cooking/baking abilities.  As a matter of fact, my aunt Carol "KK" was so inventive that she made up her own recipes and contributed to a wonderful cookbook which I refer to on frequent occasions... She even submitted some of her delicious recipes to contests but I am not sure she won any... SHE SHOULD HAVE!  When we would have a family gathering... my mom would always be the one contributing the rolls/bread and pecan or berry pies... my Aunt Lewellyne "Lulu" was the one to bring the staples such as veggies and potatoes and stuffing and things like that... KK always was asked to make a salad with her "awesome" salad dressing that only she could replicate. YUM!  She always made a couple of her "inventive", scrumptious desserts. Those were the days. As the girls (as the three sisters had all girls except for ONE boy) got older, they were "expected" to contribute as well... bringing dishes and/or making the dinner right alongside the other "wimmens".  The men didn't really have a role in the kitchen in our family... until now.  Back then.. I'm talking about 20-30 years ago, it was mainly the women in the family who cooked for everyone.  It brings back lots of old memories.

Mom's pumpkin pie in the oven... YUM!

Here is an old picture of our family growing up... My mom, grand mother and
great grandmother with Uncle, sisters and cousin.