7 months and all's well

Jun 15, 2007

well I'm SO glad that the new drug "Alli" has finally been approved for over-the-counter sales, and brought to market so I can try to lose this damn weight (SARCASM PEOPLE..... SARCASM)

OK... so my weight lately has been floating around 175.... almost 150 lbs down from where I started.  I'm solidly in a 32 waist pants and MEDIUM shirts!!! 
I never would have believed it if you told me this back in November.  Also, I didn't think I even HAD a spare 150 lbs... I thought maybe 80-100 lbs, but I feel great and I look much better too except possibly the upper half of my face, though it may be that I'm still not used to it yet.  From my Mother's side (Irish and Cherokee) I have very high and prominent cheekbones... with the weight loss, it kind of makes my face (at least from comparison) look a bit sunken.  part of it is that I still need to get used to some parts of my change of appearance, the other part is that I've just about leveled off in my weight loss... so if I'm a typical DSer, I'll probably gain back somewhere around 10-20 lbs and that should fill out some low spots.  Though I'm sure most of the problem is the fun-house mirror effect... I'm still not used to much of what I'm seeing in the mirror so it still looks strange to me.  I had my 6-month followup with Dr Shah last month... he couldn't be happier with my progress as well as with my bloodwork.... everything from the lab came back PERFECT.  He even suggested I stop taking the sublingual B12 that I was taking (my B12 levels were so high that the labs couldn't measure that high)... instead, he suggested I take a B-100 or B-150 complex, that I seem to be having no trouble absorbing B12 normally, and that I might notice a better energy boost from the other B vitamins (particularly B1 and B6)... it's only been about 2 weeks (I waited until I finished that bottle of B12) that I've been taking the B-150 and do notice at least a SLIGHT increase in energy and alertness...but since it's only been 2 weeks, it could be other factors as well.  Who cares, so long as I don't feel WORSE, right?


I'm so glad the weather has finally gotten warmer so I can get outside and DO stuff... I'm almost done building my shed (so I can clear out much of the garage and some of my office)... my boat is almost complete (I've been building a fiberglass canoe/kayak hybrid... almost ready for water testing, then final rigging and paint.
Took my family to Great Escape (a 6-flags amusement park here in upstate NY) last weekend and had a BLAST... rode many rides with my 4 y/o.  I fit the rides SOO much better than I used to, though there were a couple that I still smashed my knees to get into.  funny thing about having WLS... your legs stay the same length
Also the last couple weeks I've been getting out hiking more... averaging 4-5 miles each time.  In a week or two, I'll be adding the pack to  those hikes, and gradually adding weight to the pack.  The way I look at it, my average pack weight for a 3-4 night trip is around 60-70 lbs... 175 plus 70 = 245.... my preop weight was close to 325... so even with a fully loaded pack, I'll be about 80 lbs below my preop weight I should be able to hike Everest with THAT kind of advantage hehe.
I'm gearing up for a late-August or early September trip with my Dad to hike and summit Mt. Marcy... highest point in NY at 5344 feet, an elevation change of about 3300 ft.  Probably not much to those of you living out west, but Marcy ranks second only to Mt Washington in NH for Northeast peaks (and possibly the entire eastern half of the US)
This trip means a lot to me in that first, I haven't been hiking/camping with my dad since he was my scout leader back in 1980... next, my last hiking trip to the Adirondacks, I had to sit out the summit run (along with a small handful of others in my group) because of problems with my knee... so I never, in my mind, got to "finish" that trip... my knee had for a while gotten even worse, but recently has been getting better and now that I've lost so much weight, I haven't so much as felt ANYTHING from my knee since February.
I guess the thing is, as I lost weight, my knee hurt less... with my knee hurting less I've been able to walk more... which both strengthens my knee and promotes more weight loss... both which make my knee hurt even less (and even feel good) which makes my able to walk more... it's a (not so) vicious cycle
guess it's just as well I don't enter something every day, huh?  look at all this typing... jeez, I swear they're going to start charging me rent around here.


overdue update 3/6/07

Mar 06, 2007

I know it's been a while... I guess that's what happens when you can actually get out and LIVE. 

I went the other day to Salvation Army to drop off a few bags of clothes... 2x and 3x shirts, 46 and 48 waist pants.... while I was there, I picked up 4 pairs of like-new pants for $14 total... waist sizes were 36 (fit me now), 34 (I could button them, but they were tight) and 32 (I could pull them on and zip half-way... they should fit me in a month or two.
my shirts (depending on the type and cut) are either XL (which fit perfect in the shoulders, but a bit loose in the belly) or LARGE which fit just about perfect in the belly and chest, but are a bit snug in the shoulders... I think I'm always going to be XL in my shirts because of my shoulders, though I may end up needing what they call an "athletic cut".

I'm now a little shy of 4 months out... and am down about 105-110 lbs.  I've been (when it hasn't been snowing or blisteringly cold) walking 5+ miles at a time with NO pain to my knees, I've been sledding with my son... yes, I've been posting here and there on the boards, but not so much time to post blogs like I started out doing.

this has been the BEST thing I have EVER done for myself, and would do it a MILLION times over.
my only regret is that I didn't get off my fat ass years ago to get this done... but then, I wouldn't have had the ammo to fight the "experimental" claim my insurance tried to make.

Finally, thanks to our own lovely LeaAnn of the DS boards, I can proudly display this:

The image “http://home.nycap.rr.com/seanb/images/seancard.JPG” cannot be displayed, because it contains errors.

WOOHOO!!!
see ya 'round


stop that truck!!! 11/22/06

Nov 21, 2006

Wow! what a ride THAT was
anyone get the plate # of that truck?

it's 4am wed... must still be on my hospital schedule of only sleeping for 3-4 hours at a time, then up for 2-3.... try to get it straightened out by the end of the week.

so... clocks back to last sunday evening:  I made my final post and went into phosphosoda hell.
monday 11/13 Dad came and picked me up and we drove down to my brother's house in Westchester... from there, dad and I get a short cab ride to the train station in Peekskill (this will be Dad's new home base for the next week)... got the train down to NYC to start the adventure.  Went up to Lenox Hill for my required preadmin testing and a quick talk with the doctor.
Walked across town to the Comfort Inn on West 71st st.... nice walk through Central Park... grabbed some chinese (only soup for me) then back to the room for a shower and rest.

Tues 11/14 - DS day
woke up super early as you usually do for things you're excited for.  not too much later, Dad was up, so we decided to head out so he can get himself some breakfast that I can drool over.  since we had plenty of time, we again walked through the park to the east side... and went into the hospital.... 2nd floor to the cafeteria.... then up to 10th floor surgery check-in.  another quick chat with my surgeon and next thing I know I'm waking up in recovery.

I didn't know (or realize) it, but I was a little delayed getting into surgery... so they didn't start until almost 11-11:30 (originally scheduled for 10)

Apparently, my liver had gotten a bit worse in both size and condition, but he says it's still in a reversible stage.  I knew I had a fatty liver, confirmed by ultrasound in May, and a biopsy in Aug.  but apparently it had gotten bigger than the ultrasound showed, and it was no longer "just fatty", it had become nodular.  The weight loss and basic fat malabsorption with the DS should at least halt the progress, if not allow full reversal.  Damage isn't irreversible until it reaches advanced fibrosis, so I've got THAT going for me.

What the larger-than-expected liver DID, was make things  tougher for him to work around.... he had to slightly modify where he divides the duodenum.  he says it's not that big of a deal, only enough to mention that he did it, and that it's a little out of the ordinary.  he removed my gall bladder and appendix while he was in there.  Because of the modified division, I was left with a duodenostomy tube, which now sticks about 4" out of my belly and will have removed in a couple weeks.

I had a bit of a fever late tues and all of Wed.... because of this, they sent me down for a CAT-scan to rule out any plumbing issues.  I actually didn't mind drinking that contrast stuff since it was wet and cold and I was so thirsty.  While I was down in radiology, they also did an ultrasound on my legs to make sure there were no clots forming, since I had only been able to get up and walk once so far.... no problems shown on either procedure.

fever went back up and down for another day or two, then finally stabilized slightly below 100... but by now it was sat night and I was thinking I would've been on the way home by now, so I started becoming upset and overly sensitive to many things I probably shouldn't have.

skip ahead and Monday 11/20 I'm feeling 10000% better, yet I'm still in the hospital, and have only been started on clear liquids on Sunday... Finally, with my breakfast chicken broth, is included a menu for lunch and dinner YAYY!!!!!

Doctor comes in and says he wants to see how I'm handling the purees before he lets me go... ok, what's another day at this point?  so Tues morning comes, and I get the walking papers I've been waiting for..> WOOHOO!!  Dad and my Brother drive down to get me, we drop my brother off at his house in Peekskill, and we head the rest of the way home.

set up my place on the couch, and all is well... figured I'd at least make use of this awake time and let you all know about it.

Thank you all so much for your info and support getting me up to this point.  and I'm extra thankful to Melissa Mermaid for taking the time to come see me and bring me that great care package..... and also Marge (?... I think it's Marge), who lurks more than she should.  My Dad was blown away by you too, both that you came to visit, but also the results of the surgery I've chosen... he even choked up a little when talking about it.

Finally, you're probably wondering... I know I was... so the first thing I did after greeting my family and pets was to grab the scale.
Monday 11/13 as dad and I are about to hit the road.... 323.6
Tuesday 11/21 (1 week post-op) ...... 299.4


winning to losing 11/12/06

Nov 12, 2006

Well, guess it's been a couple weeks since an update.
Long story short, I won the appeal through external review, and they agreed to cover the DS.
and here I am... 2 days away from a major life changing experience.  Scared? no.... excited? yes... nervous?  a little.
morbid (or strange) as this may seem, I'm not one of those who are afraid of not waking up from surgery.  In reality, that's the LAST thing a PATIENT should be afraid of.  Think about it... you're in surgery... you're knocked out from the anesthesia.  If you kick it, you'll never know.
I AM a little apprehensive of waking up.... THAT'S when you start feeling the pain.
anyway... I AM ready for this.  Yes, I may be considered a "lightweight" in the field of bariatric surgery... and no, I don't (YET) need to take medicines to control my diabetes... and no, I don't need the assistance of a cane or brace when I walk... but why should I (or anyone) be made to wait that long?  I want to take care of those things before they GET to that point.  I want to have this done while I'm still young enough to enjoy the benefits.
Due to work, child, and pets, my wife will not be accompanying me down to NYC.  My dad will be coming here monday morning to pick me up... from here, drive down to Westchester county and take the metro north train down to NYC.  my father will be spending nights at my brother's house and commuting down to see me.  If all goes normally, I should be discharged either Friday or Saturday.
Now I'm just going through things over and over seeing if I've got everything I'll want/need.... Jeez, I don't think I took this long to pack for my trip to europe.  I'm sure I'll think of something (as I'm laying in my hospital bed)... speaking of which, I hope they have a decent choice of TV channels LOL
well... this will be my last post until after I'm back home at least.
So long for now

10/26/06 - waiting and fighting

Oct 26, 2006

well, my paperwork was submitted to insurance on 10/13.  made a few calls to make sure everything was proceeding ok, and if they needed anything else that might be missing...
get a letter in the mail on Monday 10/23 that I have been denied because their paperwork (which I don't doubt is probably written on original PAPYRUS) tells them that the DS is "Experimental and/or investigational" and that it is (check THIS out...)
"not generally recognized by the medical community as effective or appropriate for the particular diagnosis or treatment of the covered person's particular condition as demonstrated by Reliable Scientific Evidence"
well if I EVER read a crock of crap, THAT was it... 
ok... let's break that down a bit... 
the particular condition and diagnosis that I'm seeking treatment for is called "Morbid Obesity"
The procedure I'm seeking approval for (the DS) was created by Dr Hess back in 1988 for the sole purpose of treating obesity.
EVERY paper done on the DS reports on its efectiveness, and the effectiveness IS recognized by anyone in the medical community who is at least somewhat familiar with bariatrics.
the ASBS, in 2003, wrote a resolution stating that
"Whereas: Gastric Bypass, Vertical Banded Gastroplasty, Gastric Banding, Duodenal Switch and Biliopancreatic Diversion have withstood appropriate scrutiny through the literature and the experience of surgeons performing these procedures, in the spirit of the specific purpose of the ASBS of the interchange of ideas, information and experience pertaining to bariatric surgery"
Then it goes on....
Whereas:  The safety, efficacy and the benefit of the above procedures are well tested and established by such interchange...
Therefore:  Be it resolved that the society recognize the above procedures, whether performed open or laparoscopic, as appropriate and accepted remedies in the treatment of clinically significant obesity and its attendant comorbid conditions"

so of course, I promptly filed an appeal (which I was already doing research for anyway).
Monday afternoon, I dropped off at the post office to mail out my appeal package.  Of course I included the above ASBS resolution... along with about 200+ other pages worth of similar literature... JAMA articles, various papers authored by such highly regarded surgeons as Hess, Anthone, Baltasar, Rabkin, Gagner, Keshishian, etc, etc.
then just to top it all off... I included the WLS portions of various policies of national insurance companies... Aetna, various branches of BCBS, Unicare.. along with the MEDICARE policy on WLS... ALL include DS as an acceptable procedure.

Speaking with the woman in the Pre-D dept at my insurance co, she actually seemed to be very nice and helpful.  As she explained (and I SORT OF understand) she can only go by what is written in the procedure books they have there... but after reading a couple of the items that I sent, she "personally" agrees that I have submitted sufficient evidence... but that now it wasn't up to her, that it was being sent out for external review by a non-affiliated doctor (or doctors) who is familiar with bariatrics.  Whether he/she LIKES the DS procedure or not should be irrelevant... only that evidence supports MY stance that the DS is NOT "experimental and/or investigational"

of course I'm a LITTLE concerned with the final determination... but I'm confident that they can't really still make that E&I claim after being presented with the packet I sent... what I'm MORE concerned about, is whether they make final determination early enough that I can keep my originally scheduled 11/14 surgery date.

I'm not into prayer... but I DO believe in positive energy (regardless of what you claim the source to be)... any positive thoughts you can aim in my direction would be appreciated.

Thanks

10/23/06 - do they really NEED to be famous?

Oct 22, 2006

well, I opened up my can-o-worms the other day by posting that someone was concerned that they've never heard of my surgeon.  Does fame and/or popularity really make for a better ANYTHING?  I personally know several guitarists who are many times more proficient than any famous guitarist you can think of (Van Halen, Page, Clapton, Vai, Malmsteen, etc) it's just that they aren't seeking fame.  I could probably go on about different professions all day, but that's a quick way to get my point across.

Scopinaro and DeMeester gave us two procedures that Hess put together... many papers were written by the "Brothers Rabkin" LOL, Marceau, Baltasar, Anthone, Gagner and Keshishian.  Gagner was the first to perform the DS laparascopically.  Should we write off anyone else?

It's been mentioned that since I'm travelling 3 hours, why did I choose Shah when Gagner is right there too?

Dr Shah is relatively new to NYC.... he was recruited there in 2004.  Before coming to NYC, he was at the Lahey Clinic in MA... where he started their bariatric program in 2000.... he was Director of the Minimal Access Surgery and Technology Center and also Director of The Center for Surgical Obesity.
I assure you that he has done WELL over 50.... more like 100+ DS procedures.
He was also just last year, appointed Director of Laparoscopic Services at Lennox Hill Hospital.

You can pretty much disregard anything you read here on OH as far as the surgeon listings... many of them are OLD... like 2003/2004.   I don't know if they got them all in the cleanup, but there were MANY surgeons listed as performing the DS... yet, when you call their office, they tell you that they don't, or that they did for a short time, but gave it up due to the complexity.  THAT part has supposedly been cleaned up according to a post made by Amy Williams recently.... but it seems they didn't do any updating, which I guess is understandable... can you imagine the undertaking that would be?  contacting all the surgeons listed to get an updated tally for everything on their chart?  I know I wouldn't want that job.

I'm fully aware of Dr Gagner and his contributions to the field, and this post should not be misinterpreted as an attack on his qualifications.... when it came down to selection, I narrowed it down to two groups... Dr Gagner's group at NYP/Cornell, and Dr Roslin's group at Lennox Hill (of which Dr Shah is a partner).... basically, the top two bariatric groups in NY.  I had no problem going with either.  Frankly, Gagner's group dropped the ball in not returning 2 e-mails and a couple phone calls, so I never even went in for a consultation.

I feel very comfortable with Dr Shah and his partners at Lennox Hill.

I am NOT very comfortable with my insurance company at this point though.

10/20/06 - spoke too soon?

Oct 20, 2006

well I guess I had to be a dumb-ass and jinx myself with that last paragraph in yesterday's post.  LOL

I called my insurance co today just to make sure they had all the paperwork they needed to make their determination.  I was clear that I knew it has only been a week, that I wasn't calling to get an answer, but to make sure they had all they needed to make that answer, and if they had any estimate on how long these decisions usually take.

Then I was told something that, even now, I'm not 100% sure how to take.  She said, well I see it was submitted... but here's something else I see submitted for pre-determination on 9/29, requesting approval for CPT 43845 (the DS billing code) and that the decision was denied due to being investigational or experimental (just what I was afraid of)..... 

then she said.... further information received on 10/13, claim determination still open.

that last part is a good thing, because it means I haven't been denied.... YET.  I was going through some copies, and the only thing I can think of that initially started it was the letter I sent in... it basically was a letter giving my personal dealings, and why I was choosing the DS procedure.

The bad thing, is that now I know they MIGHT use the whole "experimental" thing to try and deny the claim.  What pisses me off probably more than ANY of the process, is that they're (any insurance co.) basing the claim of "experimental" on an N.I.H. Concensus that is FIFTEEN YEARS OLD!!!  Hell, the RNY was fairly new back then.... a lot has happened in 15 years.  I just hope they can pull their heads out of their butts for long enough to see the current calendar, and see what's been going on in the world of medicine.
On the plus side (yeah, I know... back and forth) at least with the info (about 40 pages) that my surgeon sent in, they have it under determination.  I KNOW that I qualify for WLS, even under THEIR criteria.... and I know I've met all other requirements.  my biggest issue is for them to approve the PROCEDURE I want.  Knowing that IF they deny me, it will be on the "experimental" claim.... I have all this time to collect info regarding the DS... any peer reviews, other insurance companies determinations for procedures, the recent medicare decision, any medical journal articles.... all sorts of "scholar" type articles written by surgeons, doctors and other medical professionals... anything that may give extra weight to the DS not being experimental... that there is enough documented literature and case studies to show efficacy and safety.

I'm already up to about 200 pages with NO REPEATS.... all nicely stapled and highlited to show relevant points.

like others have said.... I'll fight like hell for the DS, and won't accept any other procedure for me.

10/19/06 - I now know the feeling

Oct 19, 2006

Well, my insurance company received all the paperwork last Friday... it is now Thursday.  Yeah, I know, that's only like 4 business days.

I used to read posts and blogs of people who were anxious to find out, and would think to myself "Jeez, it's only been a week (or whatever time frame) relax and let them do their job."  well, now I know the anticipation side of things.

I've been checking the website the last couple days to see if there's anything different posted under my account... something that looked odd or out of place.... but after thinking about it just earlier... I'm not even sure if they PUT pre-determination stuff on my account listing.  Of course, I see all the claims and stuff.

hmm... maybe I'll just give them a quick call tomorrow... it will have been a week, and the least they should be able to do is give me an ETA on when I'll find out.  I know my case by itself should be open and shut... but there's two possibilities I'm not sure of.... 1- do they have everything they need paperwork wise?  2- is there a problem approving the DS?  there SHOULDN'T be, as it isn't considered "experimental" or "investigational" anymore... but it's just one of those things you never know.

10/16/06 - special edition

Oct 16, 2006

This particular post has special meaning, which is why I made it seperate from the other 10/16 post.

just the other day, I received a message from a concerned person about my choice of surgeon.  The fact that I am having DS, and the OH listing for my surgeon shows him as having performed something like 30 DS procedures.  The person who contacted me was concerned because it is commonly accepted among DSers that due to the steep learning curve required to master the DS (being the most complicated of bariatric procedures so far), that it's a really good idea to choose a surgeon who has performed a minimum of 50-100 DS surgeries, with few exceptions.

Before I get any further into this thought, let me say this.... if you are seeking to have the DS, and have not yet found or selected your surgeon, by all means check out the listings both here at OH, as well as the surgeon listing over on
http://www.duodenalswitch.com 
I would say to use those listings ONLY to get the names, addresses and phone numbers of surgeons in your area who are REPORTED to perform DS as part of their practice.
Supposedly, much of this has recently been taken care of here at OH, but you can never tell..... some surgeons listed as performing DS either never did, and had their listing that way only as a way to get more people in the door (AKA: "Bait and switch") or, perhaps they once DID do the DS, but since it is a more complicated and time-consuming procedure, they gave it up for the simpler and faster RNY and LAP-Band.
Aside from whether they even do it or not, there's the discrepancy on how many (of ANY procedure) they've actually done... I don't hold anyone to blame for this... not OH and DS, not the surgeons... unless OH is going to employ someone whose only job is to constantly call surgeons offices to get updated statistics, you're never going to have an accurate count.  in a busy week, a surgeon could realistically perform 10-15 procedures without clocking overtime.... figuring the 3 popular procedures (Band, RNY and DS) range from about 1.5 to 3 hours each.
That all said.... use the surgeon listings on OH and DS only to get contact info.... call the surgeons you're interested in, and ASK THEM how many procedures they've done, how many lap and how many open, how many lap they had to convert to open, how many mortalities and what were the causes.... etc.

now back to where I was... I often wonder about that "50-100 minimum" suggestion... I mean, how does a surgeon GET to 100 procedures?  did Dr Hess do so bad back in 1988-89? Did Dr Gagner have a problem when he did the first Lap-DS back in 99?

all I'm saying is, sure there's a learning curve at least to a point.... but something you've got to think about is... you've got to be good enough to even DO IT AT ALL, before you can do your first.  (addendum...) there's training, then assisting with those more experienced, then performing it under direct supervision of someone experienced, and so on until you're good enough.... and besides, SOMEONE'S gotta be first, otherwise NO surgeon would EVER get to that magic number. (end addendum) 
Go with your feelings, review your potential surgeon's education and training, and ASK QUESTIONS.... regardless of the procedure you've chosen.

10/16/06 - not much

Oct 16, 2006

still to early for anything exciting to have happened.
One good thing though... I was bored this afternoon, so I called my insurance co. just to verify that they have received all the paperwork from my surgeon.  They confirmed at least the fact that they had received the correct NUMBER of pages.  Of course, they don't know yet if they have everything needed, and I wasn't expecting that... they only got the packet on Friday 10/13

About Me
Schenectady, NY
Location
21.8
BMI
DS
Surgery
11/14/2006
Surgery Date
Sep 03, 2006
Member Since

Friends 79

Latest Blog 11
7 months and all's well
overdue update 3/6/07
stop that truck!!! 11/22/06
winning to losing 11/12/06
10/26/06 - waiting and fighting
10/23/06 - do they really NEED to be famous?
10/20/06 - spoke too soon?
10/19/06 - I now know the feeling
10/16/06 - special edition
10/16/06 - not much

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