Post #12

It's only fitting that my 12th Post would come the first week in December, and coincidentally today is Walt Disney's Birthday - HPY BDY Walt!

I know I've bet "quiet" for awhile, there just hasn't been much to report, other than my condition seems to be getting worse, at a higher rate than I would like.  I am now at the point that even the briefest effort (standing up) rapidly depleats my Oxygen levels, to the point that I must stop and recuperate. Very discouraging.  However, with adequate Oxygen my levels do come up fairly quickly, and then I'm just fine.

But it's making everything exponentially more difficult.  So fixing food is a strain, which only compounds my lack of desire to eat. That in turn of course gives me less energy, and only exacerbates the whole situation.  A good Friend, Dan Snyder, has been very attentive and a big help, and deserves a big tip of the Hat - THANK YOU DAN. 

I met with my Pulmonologist, Dr. Kahn, yesterday - for a follow-up appointment. She is well aware of my declining status, and for the first time we (she) actually noticed that my fingernails had turned blue... extended period of low Oxygen levels.  On my visit last month she prescribed a treatment of PREDNISONE. It's a steroid treatment and lowers the immune system, but also is supposed to stimulate the appetite, so we gave it a go.   Well it didn't do much, either for my lungs or my appetite.  She did however also prescribe the PIE DIET, which has been a huge success.  3 slices of pie a day, any kind, any way.  Now that's been great.


NOW - The BIG NEWS from yesterday, Dr. Kahn is applying for me to be part of a new Drug Test (I'll be the first in Hawaii).  So we did all the paperwork yesterday, I also had a couple of blood tests to check my Liver and such (all there were just fine).  So, I hope to be hearing from them soon.  The drug is called ESBRIET (Pirfenidone) and is a $200+ pill!!  Hopefully Insurance will cover most of it and I've also applied for medication assistance - so we'll see.  The first 45 days are free, which is good, but also the program is subject to change or cancellation at any time.

"Let go of what was,

accept what is, and 

have faith in what will be."

  - Sonia Ricotti

Post #11

Good Grief!!! Where does the time go?  Well, let's see if I can fill in the blanks.

I believe I'd last mentioned that I'm pretty much all done with the "routine" Testing, so at least that's over.  I have the loose end with my "swallow" capabilities, and won't have anything further for a couple more weeks on that.  The BIG issue remaining is completing my MANDATORY 6 month Substance Abuse Counseling Course and 6 full months of sobriety.  Which is going along just marvelously.  Stopped drinking alcohol on August 12th, and have managed to keep my sense of humor, retained my meager social status quo (still accepted in public places), and have mostly only missed a significant calorie source...

The only real downside to the whole thing is the 2 hour round trip to the Other Side for the darned 1 hour meetings 3 times a week.  For those of you who like stats..., I just did a quick tally and just in driving for Doctors appointments, tests, these meetings & flights to Oahu I've driven over 1,800 miles just since April.  For reference, it's 26 miles to the Kaiser Clinic on the other side...

Many of you are already aware of this message below, but I thought I'd just share it here again, for any who may have missed it, or wish to seek it out in the future.  I'm grateful for the assistance.

Take advantage of LYCF end of the year tax deduction

To Donate please click here or the PayPal button at the LYC-foundation.org web site  or mail /deliver check to:   LYC Office 835 Front Street Lahaina HI 96761 PLEASE MAKE CHECK PAYABLE TO:  LYC Foundation (AND NOTE: Commodore's Fundraiser) You may also call me for pickup                 Thanking you in anticipation.  Lars Bertelsen, Commodore ( commodore@lyc.us ) ( 808-385 0353 ) In the Spirit of "catching up on things" I wanted to share this news...  Thanks to Commodore Lars Bertelsen for spearheading this fund raiser for me through the Lahaina Yacht Club Foundation.  As mentioned this does allow for certain tax advantages for many.  Also, the PayPal process makes it pretty simple if that helps. Many thanks to all who have contributed so far, and to those who may in the future.  MAHALO.

OK - DASSIT for this entry. Hope as you stop by here from time to time, you take that extra moment to read my Quotes...  They're all from the heart and express feelings I deeply relate too.  God Bless.

"I love what I do, and I just remember that every breath and every moment is a gift and it can be taken away at any time, so I want to appreciate it and be grateful for it while it's here." - Alyson Stoner

Post #10

OK - so I have left two little "tid-bits" out so far...  or maybe I was just saving the best for last!

On October 2nd, I returned to Moanaloa for a COLONOSCOPY.  In the past I've had the pleasure of having these done here on Maui, but this time, since I now need to be innervated and an Anesthesiologist is involved, it has to be on Oahu.  I am very happy to report however, that the staff there was great, everything went well (yes, I was entirely out for the whole thing) and at least I don't have to go through that again for another 5 years.

And last but not least, here's the one that really GRIPES my Okole...!  The one remaining thing (besides the re-evaluation on the swallow test) I have to comply with is the completion of a 6 month Substance Abuse Rehabilitation Program.  Evidently because I (readily) admitted to drinking between 12~15 beers A WEEK - I'm considered an Alcoholic, and in need of counseling. 

This particular circus began about 2 months ago. Early on, when I first spoke with the California Lung Transplant coordinator the subject of "alcohol" came up, and I could tell there was some concern on her part when she responded, "Well, you'll have to stop drinking for the transplant." Which was fine, as I'd discovered in some of my research that "no alcohol" was imperative for the transplant process.  Since I had no problem "not" drinking, I simply figured that whenever I got on the list, it'd be time to stop, and I would.  NBD.  Well, guess I was wrong about that.

It was while I was on Kauai visiting some High School Friends (Sandy Saemann & JC Agajanian) that I had a conversation with the California Transplant Social worker who almost had a tissy fit that I was still drinking.  So, I put in a call to Dr. Kahn and we had a short discussion and to keep peace, I agreed to stop right then and there, August 12th.  And I did.

It wasn't until I got back on Maui in September that I got into a Catch 22 situation with the California Social Worker who was insisting I needed to participate in Substance Abuse Rehab Program (SARP) only to find that no one in Hawaii knew what I was talking about.  Evidently California and Hawaii Kaiser programs are different...  Anyway, it took about two weeks and a visit to my Maui Social worker, several more phone calls, a visit to the Wells Street Behavioral Health Sciences Clinic and several conversations with the Substance Abuse Counselor, Frank Zaminski, to sort that out. 

So, the end result of all that is I currently am required to attend three meetings a week, in Wailuku with a bunch of Court appointed alcoholics and crack addicts, plus a weekly "random" urinalysis. As much as this is an inconvenience (hour over to the other side, hour for the meeting, and an hour back home) and hassle, what do you suppose the reaction is when the person in my position "complains" to the "system" about it being unreasonable...  Everyone just goes "Oh, sure... that's what they all say!"

So, I've nothing to do but go along with it, do my time and get 'er done...

"I'm not one of these people who likes to do as little as possible. I really do feel the hot breath of time on the back of my neck these days. And there are certain things I want to do before my time is up."  - Brian Dennehy

Post #9

I need to start by back-tracking for just a bit, I was going so fast I missed an important date...Earlier the week of my Cardio Cath (August 28th), I had to go over to Oahu for my first visit to Nuclear Medicine!

August 25th, NUCLEAR MEDICINE - LUNG SCAN   This was at Moanaloa and for once I didn't need a companion.  So, I put on my big boy pants and went it alone. Welcome to the High Tec Folk of Medicine...  I've been quite impressed with how NICE everyone I've encountered through all this testing process has been.  They're pleasant, personable and prepared. Today's tech was very apologetic that I'd have to wait an additional 5 minutes while they "warmed" the barium solution they were injecting so I wouldn't be uncomfortable.  When I thought he was just getting the IV ready for the procedure and commented, "Well, that wasn't so bad, so far..."  He replied, "Yep, all done."  I
didn't even realize I'd been injected.  Then it was onto/into the big scanner.

In between here (on August 28th) I had the Cardio Cath - see the prior post if you missed it.

September 2nd, NUCLEAR MEDICINE - BONE SCAN  Moanaloa again, this time I first had to have a different type of dye injection, and had to wait 3 hours for it to circulate through my system.  The Nurse (ironically Blonde and named Amanda), encouraged me to walk around, drink lots of liquid and do "whatever I wanted"... she actually said, "GO HAVE A BEER!"  Now THAT my Friends, is health care at it's finest.  No... I didn't have the beer, but I did go have a grand meal in the Cafeteria and a Gatorade.

September 3rd, ULTRASOUND - Carotid Artery.  This was done at the Wailuku Clinic on Maui.  Seemed to take quite a while, but was painless.

September 3rd, FOLLOW-UP Dr. Gordon  Right after the Ultrasound I had my follow-up for the Cardio Cath.  Good news, my heart, main artery and veins are all just swell.  Good pressures, no blockage and all in all, in fine shape.  She said that was probably the last time I'd see her, and with a smile, she said, and that's a good thing.

September 11th,   FOLLOW-UP Dr. Kahn  Confirmed that Cardio Cath went fine, all testing was done for now, and just to be sure... she was going to order another Chest X-Ray for today.  Presuming that didn't show anything new, she'd see me in 3 months. 

So, this would seem to be a good place to leave us for now... Until next time, ALOHA!

"It is possible to experience an awakening in this life through realizing just how precious each moment, each mental process, and each breath truly is." - Christy Turlington