Sunday, June 29, 2008

People die from Weight Loss Surgery

One of the reasons why I haven't been running around telling people in my real life that I'm getting surgery is that I don't feel like having to listen to all their horror stories about people they know who know someone who knew someone who had a horrible experience and maybe even died.

But that doesn't mean I don't hear the stories anyway.

Yesterday, someone on one of my WLS message boards went to Mexico and died from having RnY. Naturally, this has freaked people, including myself, out. Heck, I was scared before I heard about this particular death. I have young kids still. I want to be around for them. Surgery is risky. You can drop dead just from the general anesthesia. Hardly anyone does, of course, but why take a chance if you don't have to, right?

So that's what it boils down to... do you have to? I think I have to. Maybe not today, maybe not tomorrow, but soon. In the next couple of years, for sure.

The thing is, morbidly obese people do not live to a ripe old age. I turn 51 this year. This is the decade where fat people start to drop dead and the survivors say things about how, yes they were young, but it's not really that unexpected given their weight. And if it doesn't happen to me in the next 9 years, it's pretty likely to happen in my 60s. When I'm 60, my oldest will only be 26. My youngest will just be getting out of college. I'd like to see my kids grow up and have careers and have some grandkids that I can spoil rotten. But there is a good chance that won't be happening for me if I don't get my weight under control.

There was a time when I was younger and wasn't really feeling the effects of my weight yet. I had great blood pressure and cholesterol and other lab results in my 30s. Sure I wanted to be thinner and, when I got married, I lost a ton of weight for my wedding. Of course, I gained it all back and then some. Then I lost some more to have a second child. But for the most part I was healthy and happy and could live with my weight even though I was bouncing between obese and morbidly obese pretty much the whole time.

But now I have high blood pressure and I have to take medicine for it. And that medicine depletes my potassium so I have to take something for that. I've seen people get old with their 50 bottles of pills that they need a scheduler for to remember to take them all at the right time and start interacting with each other to give weird side-effects and I see this blood pressure thing as being the domino that starts that trend. I don't want to go there any sooner than I have to.

I also am starting to really feel the weight as I get older. I used to ice skate. I was never very good at it, but I loved it. I did it for ten years and for most of that time I did it 6-10 hours a week. Recently I stopped. My weight just finally dragged all the enjoyment out of it. I've stopped all exercise, in fact. I don't take my kids to the pool because I don't want to have to deal with a bathing suit. I have trouble bending over to pick stuff up when I drop it. When I go to someone's cube at work to ask a question, I have to sit down because standing for more than 5 minutes tires me out.

I HATE being like this -- this is no way to live and I have to do something about it! I'd love to do something that didn't have a risk of death, but there is no such thing. Maybe in 10-20 years there will be, but by then it will probably be too late for me. I just can't afford to wait any longer.

So I'll just cross my fingers and my toes and hope for the best. I don't really see any other good options.

Friday, June 27, 2008

They're closing my window

I just found out at work that after we do our release, we're going to do another immediate release with "extras" that didn't make it into the first release.

This means that having surgery in Oct. is probably not going to happen. We will be in the middle of regression testing and fixing any serious bugs that the regression tests find in that month.

I really didn't want to have surgery around the holidays because I need my energy at that time. But it's looking like I won't have a choice. Of course the good thing about having surgery in Nov. is that everyone will be getting lots of time off. Maybe we can time it so that we're in San Diego for Thanksgiving. This assumes I'll be getting the surgery in Mexico with Dr. Aceves but that is looking more and more likely as time goes on.

Wednesday, June 25, 2008

That's two hours of my life I'll never get back

I just came back from checking out the Stanford Bariatric Surgery program. The seminar was two hours long but I was 15 min. late and it's probably a good thing because if I'd had to listen to the Chief Dietician drone on and on about things that no one in the room really cared about for 1 minute longer, I would have gone insane.

Seriously, who thinks it's a good idea to go over the post-surgery diet in EXCRUTIATING detail, including how to make something called "enhanced milk" (non-fat milk with protein powder added), to a room full of people who are still trying to decide if they even want weight loss surgery, let alone what kind? Not only that, but her voice was monotone and nasal. The whole room squirmed as a unit the entire time she talked.

Then Dr. Morton came in and he was a little better. At least his info was pertinent. He had lots of stats and info on his slides, but he breazed through them pretty fast, completely skipping some, which greatly disappointed me. Plus, it turns out he -- like many surgeons in the US, but not so much the rest of the world -- is a bypass guy. It's all about the RnY for him. Not only did he present his info so that most of the people in the room started thinking bypass is the best weight loss surgery, but his information about the sleeve was woefully out of date and, in at least one case, downright wrong.

But then he's only done 20 sleeves. I wish I'd known that before I went there. Though he's done over a thousand bypasses with no deaths, so if he was one of those surgeon who had just started doing it, but was really excited by them, I'd have still given him a whirl. He's also only done 100 bands so even if I change my mind again and go back to getting a band, he's still not going to be my go-to- guy.

On to the next seminar... I'm pretty sure Drs. Cirangle and Jossart are informed about the sleeve. After all, they are two of the "fathers" of the procedure.

Saturday, June 21, 2008

Band vs. Sleeve

When I first started this blog, I was looking into getting a lap band, aka Adjustable Gastric Band. As I started doing more research into it, I discovered that there are TONS of weight loss surgeries, not just Gastric Bypass and Lap Band. I looked into them all but at the time I was still afraid of doing any sort of permanent thing to my insides and they all seemed too extreme or too experimental.

I looked into the new VBLOC but it's only in clinical trials and I didn't meet the qualifications because of my past blood clot. Also, it's not clear if it is that effective. They are thinking something like 20% Excess Weight Loss (EWL) with it, which is about the same as diet pills.

Then I heard about something called Duodenal Switch. I had no idea what it was. I looked into it and said NO WAY. They cut of a piece of your stomach and reroute your intestines. Afterwards, if you eat certain foods, like carbs, you get really scary farts -- the kind people get fired from their jobs from! I am against malabsorption surgery on principle anyway. So no DS.

The last surgery I looked at was the gastric sleeve, aka Vertical Sleeve Gastrectomy. In this operation, most of the stomach is cut away leaving a sleeve like a banana. The basic stomach is still there -- you have a normal opening on each side -- and all your intestines are still there. So the only difference between you and a normal person is that you can't eat as much at any one time. As an added bonus, the portion of the stomach that generates ghrelin, the hunger hormone, is gone. So you don't feel hungry all the time and you can't eat big portions, but you absorb all your food and you don't get stuck.

Sounds like a great surgery, right?

But I wasn't ready for it at the time. I watched a sleeve surgery on OR-live and when I saw them cut off the stomach and throw it away, I freaked out. What if I changed my mind? What if I was one of those people who did poorly with WLS and wanted it reversed? What if I developed a leak and died?

Since then, I've been hanging out at a lap band site while waiting for the Fall to have my surgery. During that time I have noticed something:

-most of the people on the site talk as if they are on diets; most of them are on diets, in fact. A significant minority of them live like bulimics and talk like people with eating disorders

-lots of people have trouble finding their sweet spot. They can't get tight enough to control their hunger and still be able to east normally

-after a few years, generally 2-3, a significant minority start having problems that require the removal of their bands

If I wanted to be on a diet, I could do that without having surgery. I don't think being "on a diet" is a healthy way to live and I don't want to get into that destructive pattern of behavior. I was sure that I could have a lap band and not be one of those people though. The same with becoming a bulimic. My plan was to keep myself fairly loose so that I could eat most foods without getting "stuck" leading to having to burp up my food because it wouldn't pass through the band.

But all the talk started to get to me. What if I never found my sweet spot? It wasn't just the crazies who never found it. Plenty of people who make good choices never get that way. The fickleness was a big turn-off too. I didn't want to be a slave to my band, only eating what it would let me at certain times of the day or month.

But the big turn-off was the complications rate. The mortality rate for the lap band is negligible. The erosion rate varies but seems to be mostly a factor of surgeon skill. I knew I could pick a good surgeon. Then we get to slippage.

Slippage is somewhat under the control of the patient. Take your time moving back to solid food and good adhesions will form so that your band is locked in place. Don't overeat in the early days when scar tissue if forming. These are things that lead to slippage. But even if you do that, the world-wide slippage stat is something like 3% ... and it's growing every day in the US where doctors seem in a hurry to get their patients onto solid food. Three percent is a VERY BIG NUMBER for a complication that requires re-surgery.

It seems like the lap band is the sort of surgery that require a re-surgery after some time has passed. The longer you have it, the more chance something will go wrong. At 10 years out, the re-operation rate is some where between 20 and 40% depending on what study you read.

In the meantime, my attitude towards a "permanent" surgery started to change. Lap band is touted as reversible and, compared to a sleeve, it most certainly is. But you don't go back to what you had before. You have scar tissue to deal with. You may have esophageal problems too. These may or may not be restored to normal once your band is removed. Most likely, you will be okay once the band is removed, but it's not like you can get a band and just change your mind later and everything goes back to the way it was.

I have begun to see that if I choose to go this route -- WLS -- that I need to be totally committed. I can't pick a surgery based on how easy it is to reverse. I have to look at the big picture and part of that big picture is long-term quality of life and after care. What kind of complications you have and how common they are is a big part of the picture.

I believe that the sleeve, when you look at the big picture, is a better surgery for me than a band would be. This is particularly true now that I have to pay for the darn thing myself! With a band, I will continue to struggle with the insurance issues. I'll have to pay for adjustments (aka fills) for the rest of my life. If I get erosion or slippage, I'll have to pay for the band to be taken out. With a sleeve, once my staple line heals over and, if I don't develop a stricture early on, I'm pretty much home free. I won't be paying for re-surgery unless I'm unhappy with my weight loss and want to get revised to a bypass or DS. I won't be paying for adjustments for the rest of my life.

Partial gastrectomies have been done since the 70s for patients with severe ulcers and stomach cancer and we know the long-term effects. These people go on to live normal lives and don't have late-term complications. Their chance of getting ulcers and stomach cancer is less than normal. They can eat pretty much what anyone else eats, but just in smaller quantities. They have normal hunger.

In fact, the big win for me with the sleeve though is hunger control. Hunger control with a sleeve is guaranteed. Long-term studies show that over time your body learns how to make more ghrelin. But only as much as a normal person has. Getting hungry every 1-2 hours will only happen if my hunger is not real, but manufactured in my head.

Since I'm pretty sure that 90% of the time, it is real hunger, I am very happy with my chances for success with the sleeve.

Friday, June 20, 2008

Oh my god, I'm on a diet. How'd that happen?

A few years back I decided that I was never going to diet again. I felt that dieting, especially yo-yo dieting put me in a bad place and was ultimately unproductive.

But making lifestyle changes was okay.

Unfortunately, for the perpetually fat, not "being on a diet" is actually hard. We can't seem to help it -- we have years of conditioning to overcome.

When you join a structured program like Weight Watchers or Jenny Craig, they stress that you aren't "on a diet" but that you are "making lifestyle changes". It's all PC-bull though. You're on a restricted calorie diet. That isn't making lifestyle changes -- that's trying to lose weight in a way that's not sustainable.

But I really thought I was just making lifestyle changes. I told myself that I would continue to eat when I was hungry, just make better choices. I'd work on eating slower and chewing more thoroughly. I would drink more water. But I wouldn't starve myself or fall into a Good Food/Bad Food mindset. I wouldn't try to restrict my calories or loss weight. If I lost weight or ate less calories, that would be good, but it wouldn't be my goal.

And here I am four months later trying not to eat more than an average of 1500 calories a day and telling myself at 1:30pm that I couldn't possibly be hungry as I'd just had lunch an hour ago. At least I'm not falling into the Good Food/Bad Food trap; well, at least not too much.

I guess I need more "head" work than I thought! I've been slacking off on my Food and Feelings Workbook because I was sure I was above all that. I guess just because I don't eat a pint of ice cream when I'm unhappy, it doesn't mean I don't have head issues.

If nothing else, this process is going to keep me humble.

Thursday, June 19, 2008

Ghrelin stimulates production of growth hormone

Ghrelin is a hormone, secreted by the stomach, which causes you to feel hunger. It's highest before eating and goes down after eating. It has been discovered that ghrelin levels in the morbidly obese are up to 10x that of normal.

Recently I read:

"The ghrelin receptor was known well before ghrelin was discovered. Cells within the anterior pituitary bear a receptor that, when activated, potently stimulates secretion of growth hormone - that receptor was named the growth hormone secretagoue receptor (GHS-R). The natural ligand for the GHS-R was announced in 1999 as ghrelin, and ghrelin was named for its ability to provoke growth hormone secretion (the suffix ghre means "grow")."

What does this have to do with obesity? Well, I've noticed (and personally experienced) that lots of women when they start to go through puberty, pork up. They also experience a lack of satiety. It's like their "full" switch never turns on. Many of them, if left alone, will come out of it at about 16 or 17 perfectly slim and with a normal appetite. But if their family and friends freak out and start pushing them to watch their weight and to diet, they stay permanently out of whack.

Based on my observations, I came up with a theory that puberty causes women to feel hungry all the time as a way to stimulate growth and make sure growing bodies get enough to eat. Dieting interferes with this process by telling the body that there is a famine at the worth possible time. By dieting during puberty, you can set yourself up for a lifetime of weight problems. But if you ride it out, you could be okay as once you are through puberty, this insatiable urge to eat, eat, eat, should subside.

This has been my personal, pet theory for a while now. It's nice to know that there might actually be a scientific basis to it!

Wednesday, June 18, 2008

Now I've got an another answer

The Big Cheese of Benefits says that WLS is not covered under UHC and has never been covered.

Something I HATE, HATE, HATE about having to deal with insurance companies is that you can never get a straight answer out of them and they never give the same answer twice.

Take Moonshine. Moonshine is the CS rep who answered UHC's hotline the day I called to find out if WLS was excluded on my company's policy. Moonshine looked it up on her little computer ... or maybe she just pulled her answer out her ass ... and told me that it was.

But Moonshine was wrong.

So for the past three months that I've been thinking all I had to do was switch to UHC when Open Enrollment came along and I'd be fine for my surgery in the fall.

That's three months wasted. Three months I could have spent working with a surgeon to get my pre-op requirements out of the way as as self-pay patient. That's also three months that I spent making lifestyle changes in preparation for having a band that lead to me dropping below 40 BMI. If I'd been under a surgeon's care with my weight recorded at its highest, it wouldn't matter and all this weight would count towards the 10% that the surgeons in my area want you to lose before they operate.

I am not feeling very charitable towards Moonshine right now.

Is it time for my "how can they cover IVF and not WLS" rant, yet?

Yes, my company covers IVF ... only up to a very limited amount, but they cover it. Even though it only has a 15% chance of working. Even though having a child is a choice and not a disease. Even though there are other ways to get a child that have a greater than 15% chance of working.

I'm not saying they shouldn't cover IVF. Of course, they cover it. They cover it because that's what compassionate employers do and because insurance companies include it in their plans now.

But WLS has a much higher chance of working -- anywhere from 43% to 76% -- than IVF. Not to mention, morbid obesity KILLS PEOPLE.

But insurance companies offer this as an optional rider and so companies take advantage of that to save a few $$$. I never thought my company would be so cheap and short-sighted. I guess company value #3 - It's the people doesn't include morbidly obese people.

Tuesday, June 17, 2008

I've Got an Answer (Maybe)

I have been trying to find out for the past two weeks whether there have been any major changes in the Exclusions of both policies my company offers. I don't want to switch to United Healthcare and then find out that this year WLS is excluded but it's been added to Aetna (my current carrier). It has been very frustrating trying to find an answer.

Today I finally emailed the Big Cheese of Benefits. She claims that the booklets with the Summary Plans don't get updated every year. Only when something major changes and even then they might just post an addendum.

I find this very hard to believe. First of all, I know that the exclusions for our UHC policy have changed. Some stuff that was excluded last year is now included. Yet no addendum was issued. Secondly, there weren't really major changes last year, yet there are Summary Plan documents up for last year.

But if that's what they say.... it means WLS is still included with our UHC plan. Which is good right? Except...

One of the most frustrating aspects of dealing with insurance is how every time you make an inquiry, you get a different answer. I hope that this time this answer sticks!

Sunday, June 15, 2008

There has to be something else...

I'm really annoyed with my husband again. I wanted to talk to him about taking time off from work in the Fall when I have my surgery. He doesn't get as much vacation as me so we need to plan out these things particularly as my niece is getting married in Aug. and there is a model train convention then so he'll have taken a lot of time off already.

Now that we're talking concrete plans instead of "some day" he's once again insisting that I don't need surgery, that surgery isn't the answer and that "there has to be something else." Of course he has NO IDEA what that something else is. But there has to be something else, some diet that actually works for more than a small handful and I just don't know about it because -- I don't know why -- somehow it's a big secret, I guess.

Once again we had the conversation about ghrelin and how the body reacts to dieting by thinking it's in a famine and, once again, I challenged him to come up with a different answer and, once again, he couldn't.

So now I'm pissed. Really pissed.

I'm the big researcher in the family. And he's SEEN me on the computer weekend after weekend looking things up, talking to people who've had WLS and otherwise making sure I know what I'm talking about. But he doesn't believe me. He doesn't say that, but he doesn't have to because, if he believed me, he wouldn't be stubbornly insisting that there has to be another answer.

I say if there is another answer that HE needs to find it. He's convinced it's out there, so if he wants me not to have surgery, he needs to find the other answer. I've found my answer and I'm going through it come hell or high water.

But what pissed me off the most is that he is FAT too. He isn't quite morbidly obese yet, but he's a definitely candidate for WLS because most likely he has sleep apnea (though he stubbornly refuses to get tested for it). So he knows that diets don't work, that there isn't some magic potion out there that you can take. He, of all people, should understand that there are forces at work he beyond willpower and exercise.

Society's brainwashing is just too great, I guess.

Tuesday, June 3, 2008

Open Enrollment is here!

I got my Open Enrollment packet in the mail on Saturday and I was SO EXCITED. Until I figured out that they've changed around the plan I was going to switch to and the Plan Summaries for the new plans aren't available. However, our UHC plan is now playing for "weight loss programs" so I'm thinking, if they pay for things like that, they are bound to still pay for Weight Loss Surgery.

I've also heard through the grapevine that UHC is one of the easier insurance companies to get approval from. They also don't require a six month doctor supervised weight loss effort. That's good because I don't have six months and also I think those programs are a joke and I'd rather not waste my time doing something pointless when I could spend that time doing something that will really prepare me.

I've been looking up doctors that are on the new plan and found that one of the Stanford Medical Center doctors is covered. That would be much more convenient than the program in Pleasanton. Hopefully they'll stay covered with the new plan and WLS will stay covered and everything will work out.