The embarkation of a new journey....

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

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Posted By Trish Taylor to Curlycues Muse at 3/05/2014 03:53:00 PM