Post #7

August 27th Scott Newman, ENT.  This was another check-up on my ability (or lack there of) to swallow.  After a few questions we went right to the scope through the nose and down the throat.  6 years ago, when I had the first one, this was a OMG! I think I'm gonna die, strap me to the chair and hold me down... event.  Now, it evokes little more than a short shudder.

Well, the up-shot of this exam is that my larynx, or vocal cords don't completely close, which allows a little bit of fluid to start to enter my Trachea.  One thing I learned was that the Larynx developed not so we can talk or sing, but to protect our Lungs from foreign matter, and to get our food and beverage into our stomachs. This probably also explains why I got kicked out of the school choir in the 6th Grade!  So, his suggested treatment was a heavily restricted diet and Prilosec or Omeprozole. So that's no citrus, no onions, no tomatoes, no onions, no chocolate, AND NO CAFFEINE!!! - as if I'm not already having enough trouble eating...  I think the "no coffee" is gonna be the hardest.  There goes my love affair with my Keurig.

August 28th, Cardio Cath, Moanaloa, Oahu - Dr. Pam Gordon.  OK, this was one of the biggies, and meant a trip to Oahu and I needed to have a Companion, which had originally been planned to be Amanda, as she's up on all the Med sh*t, and actually cares.  However a mandatory change in her Nursing schedule meant Plan-B.  (Trumpet call please...) Thank you Anne Wall for stepping up and being willing to come along for the ride. 

Never mind having to get up a 4:30am to get to the Airport in time for the first flight, then the first shuttle and to get to the Clinic at 8:00am so I could slip in a quick "Simple Pulmonary Test."  Like the name implies, this was pretty simple.  They hook you up to a Pulse Oxymeter and you proceed to walk back a forth down a 50' corridor, with on nurse monitoring you Oxygen levels and another counting the laps.  At the end of 6 minutes they sit you down, check you vitals, and in my case, hook you up to Oxygen until you're back up to 97+ percent. 

Next it's up to the 4th floor to check-in for the biggie!  After not to long a wait, they take me in, show me a bed and hand me a gown.  After they get an IV hooked up (oh yes, there's always an IV) ask about 20+ questions and explain for the 6th time what's going to happen, the rather cheery Nurse decides to take over for the rather grumpy one, and starts to Prep me.  In plain English that means shave me from navel to mid-thigh, on BOTH sides... just in case they need to try a different artery.  Oh yea!  Now that I'm all set to go, of course they couldn't find the Doctor...  Two hours later they discover the Doc's not lost, she was just attending to an Emergency Pacemaker installation, and as
soon as the OR was cycled, I'd be all ready to go...  Oh yea, again!

So, long story short, they did get me in, gave me some marvelous drugs so I pretty much missed everything, and then came to back in the recovery room... with a male nurse pretty much doing hand presses on my left groin... making sure my artery closed...  While cheery Nurse is back reminding me to lie flat and not move.  After about a half hour, the male nurse relaxes a bit, and I notice him grabbing for "something" sticking out of my groin... and thank the Lord have the awareness to close my eyes and hold my breath, as he pulls out the arterial catheter.  Whew, so glad I missed that.  Well, then he's back at the pressure thing again...  another half hour and this time I miss as he grabs for the venal catheter, and much to my chagrin find myself transfixed while he pulls that one out...  OMG, for a moment I thought I was gonna lose it... but not, a little deep breathing, a couple "oh sh*ts" and I was fine.

All in all it wasn't that big a deal, and other than being a few hours late, needing to change flight reservations and arrange for a Taxi, NBD.  Anne was quite the trouper, helped to see that I was both still and well cared for, and did a great job of hiding the fact that she was probably bored to tears!


This is as good a stopping point in this chapter as any... until next time - CIAO!

"I now know that things I always thought I could depend on can crash in an instant. Because of the love that I have been shown, I now know what it means to be 'beloved.' I now know that no breath is to be taken for granted." - Rebecca Wells

Post #6

Good Day Faithful Followers... thank you for your patience as I endeavor to get "caught up" and then to keep up...

Oh wait...  TIME OUT - since I am so behind, let me give you a current status report - 

as of today (Wednesday, Sept. 17th) most all my tests seem to be completed, 

save for a Colonoscopy early next month.  So far everything is good, 

although I seem to have a "swallow" issue which is under treatment, 

am continuing to lose weight (currently 188lbs) which is NOT good, 

and am on oxygen for pretty much any activity.  And on we go!

 OK, I think I left off on June 6th with the Lung Biopsy and cultures.  Well the second culture came back normal, nothing to report there.

June 27th  Phone interview with Social Worker, Renee Saito.  Pretty much "20 Questions" about just about everything.  Needed confirmation of Care Givers of Record (Primary = Anne Wall; Marci Walsh; Carol Ruby; Carl & Wendy Stephens; and of course Amanda - who however remains busy in her new position as RN (Cardiac/Pediatric Ward)  at MMMC. ) She also coached me on a few things so that I would best measure up to the standards and requirements of the TRANSPLANT COMMITTEE.  Evidently of which there are three.  First, there's Hawaii, then there's the National Transplant Board run out of LA, and then the final one at UCSF. 

June 30th  Dr. John Draeger - Psychiatric Evaluation:  Another version of 20 Questions, Family and Personal history, pretty in-depth.  Childhood, High School, Navy, work history, marriages, Family, drugs & alcohol.  When he was finished he asked if I wanted to know what he "thought"... I figured I might as well, since this was a first time experience for me... and I was a bit surprised by what he had to say, and his positive response.  He was very encouraging about the Trnasplant process and the Science.  It was pretty encouraging.

July 16th  Dr. Pamela Gordon - This was a preliminary visit for the Cardio Cath proceedure (a nifty one where they insert a "camera" through an artery in your groin to examine your main heart valves and arteries for blockage, pressure and general health) scheduled for next month.  First I met with the Nurse, Sandy who ran down the procedure, how I'd prep, what to expect and the recovery

process.  Then I got to watch a 40 minute video on what they would be doing and what could go wrong, just one of my most favorite things to do.  Happy to say I DID NOT pass out, and thankful there was no test.  Following all that I met with Dr. Gordon who pretty much told me the same things all over again (short version) made sure I was going to have a Companion, and to let me know that she'd see me again the week before the procedure, for blood tests, an EKG and final check-up to make sure I was good to go...

August 19th Dr. Pamela Gordon - This was just the final check to make sure I was good to go for next week's Cardio Cath in Oahu.

August 21st Speech Therapist - Susan Suziki. This SWALLOW TEST was a bit more than I was expecting.  First I met with the Therapist and she explained the test and that it would involve X-ray screening of how well I swallow.  (Historical note here... since I was a child it has always been difficult/impossible for me to swallow pills.  I would gag on 1-a-Days...  When I went through the Cancer treatment all my meds, and there were a bunch had to be liquid, which at times was a real hassle.  ON the up-side, or so I thought, I chew my food real well, heck, I have to chew applesauce.)  She further explained that I would swallow a cracker, some applesauce, and milk - all mixed with Barium.  Well, we did the test twice with both the Nurse and the X-ray Tech coaching me and basically, I failed!  Evidently this is NOT good.

Kind of a bummer to have this seemingly minor issue become a stumbling block.  The Therapist gave me some suggestions on how to improve my ability to swallow and referred me to the ENT to see what he could determine.  Nice thing about this is it's Dr. Scott Newman, who's been my ENT all through my Cancer ordeal.  And hey, what's one more Doctor's appointment...?

And that's where we'll pick up on the next installment.  CHEERS YA'LL.

"I have so much chaos in my life, it's become normal. You become used to it. You have to just relax, calm down, take a deep breath and try to see how you can make things work rather than complain about how they're wrong." - Tom Welling

Post #5

Welcome back...  OK, here I'll summerize round two of tests, the point of which was to determine or rule out what did or didn't cause the Pulmonary Fibrosis.


April 22nd - Full Pulmonary Test, this involved a trip to Oahu and took place at the Kaiser Moanaloa Clinic.  This was about a half hour test, sitting inside an enclosed "box" connected to a computer controlled breath analyzing apparatus.  For basically just having to "sit and breath", this was actually kind of a tough one.   

April 25th - Abdominal Ultra-Sound.  This took about a half hour and required a 12 hour fast beforehand, evidently to keep down stomach and intestinal noises...   

May 1st - another Blood test.  The sad truth here is "blood tests" have become so routine that I'm no longer even phased by them.  There was a time, when having to sit for one meant a great deal of mental anguish, and an extra 20 minutes just to get my blood pressure down low enough so the could draw the blood.  

May 2nd - Today I drove down to Kihei to pick-up a second hand Portable Oxygen Concentrator, something I'd need to travel by plane to the Mainland or any extended traveling.  I managed to find a Resteronix unit that retails for $2,500 or so, and was able to pick it up, along with an extra battery, for $1,000.  (Side note on this - turned out later that it needed some work.  The separator unit needed replacing and the extra battery was no good.  It wound up being a bit of a challenge to find out just where I could get it serviced and to arrange for the repairs.  When all was said and done it wound up costing about $500 for the repairs and shipping.)

May 8th - Consult with Dr. Kahn.  So far none of the tests revealed any particular cause, and the most likely contributor was simply Heredity.  She indicated that she would like to do one further test, a Lung Biopsy.  Amanda was with me for this visit, which was a big relief, just to have somebody who knew what was going on... Not one to miss an opportunity for another "fun" trip to Oahu, of course I agreed.

June 4th - While not exactly related, today was my annual Follow-up with the Oncology Department.  I was seen by Linda DeGinnaro, a rather chipper Nurse Practitioner (since Maui is presently seeking a staff Oncologist, given the last one had recently retired).  The good news being I'm definitely 5+ years Cancer Free!  YEAH! Some welcome news to go along with all the rest.

June 6th - Back to Oahu for the Lung Biopsy with Dr. Kahn.  After a seemingly lengthy 20 minutes of breathing some kind of local anesthesia, and having a long ugly tube stuffed through my nose and down my throat AND managing not to either gag or freak out - that test was over.  A week later Dr. Kahn confirmed the results were negative and nothing came of it  They were going to culture a sample she'd taken for another week to rule out the last possibilities.


And that's where we'll pick up on our next installment...

"Start living now. Stop saving the good china for that special occasion. Stop withholding your love until that special person materializes. Every day you are alive is a special occasion. Every minute, every breath, is a gift from God." - Mary Manin Morrissey