Henry's story, not close to over. A story of pain. - ThinnerTimes - Gastric Bypass Forum, Lap Band Forum, and Vertical Sleeve Gastrectomy Forum

HenrySanDiego · 09-07-2009, 10:14 PM

I came to Dr. Callery per referral from my regular internist.

I felt he was a good enough guy, but I felt his office and support people were a mixed bag. I can see how these offices where the boss is in surgery most of the time have a odd connection to the owners.

I had my surgery on May 2, 2006. My only connection to the outside world was my roommate and he was given limited permissions to visit me, even though I am certain I signed a poa for him.

My surgery was on tuesday and by thursday I was in a lot of pain and suffering fairly bad. It wasn't till 3 am on Friday that they decided to re enter me. They found 2 and half liters of waste or fluid or whatever from a leak in my belly.

They opperated on me 2 or 3 more times, I am not sure. I was given a trach and put on a full time ventilator and lapsed into coma to drugged comma and back and forth for 80 days or so.

When I woke, I had no idea what had happened. I was on daily dialysis and in mind bending pain. The pain has not changed much. I measure it by the pain in my hand. A pain which is less subjective than leg pain. My hand hurts today as much as it did the day I woke.

I have drop foot, meaning my feet toes wont extend. I have very poor balance and my life chaned dramatically.

My right foot has gotten a slight bit of movement.

Despite the pain and hardships I managed to get a job in the Comptrollers office for the City of San Diego. Eventually they had to let me go due to my problems.

I am not sure where I will go from here.

The surgical opening in my stomach has never been closed and I cannot find anyone to close it for me. I have asked several surgeons.

The opening is about 6 inch by 8 inches, part of it certainly is herniated, sticks out like a ping pong ball.

My insurance company told me they had claims of close to 2 mil related to my surgery, but they probably negociated it down far lower than that.

I lost everything while in my coma, and all I needed was someone to check my mail. I had 8,000 in checks in mail. Lesson to anyone getting this surgery, make sure to have a true real friend on hand.

Lost my credit rating, lost all my bank accounts. Nearly lost my insurance, but my prior employer was smart enough to realize I would not miss a cobra payment for no reason and started calling hospitals and jails.

Eventually they found me and paid up my insurance; yet I had the money sitting in box beside my bed.

I could not buz the buzzer in the bed in intensive care due to lack of mobility so I finally found a night nurse willing to log on my Gmail account and get me a phone number of a friend, and from that I hired a hot shot runner to go get my mail. However, I was unable to open it. Keep in mind also I could not speak since I was trached.

I begged the doctor in a notepad note to cover my 273 insurance payment, he knew I was a professional, and unknown to both of us was my box with $8,000 in checks a mere 18 inches from his right foot as he stood before me. He told me he did not mix money with medicine. Although, my costs had billed over 800k by that point. This is a reality everyone needs to keep in mind about professional distance, it only increases, not narrows as things go badly.

So this box sat by me and traveled with me to the rehabilitation hospital, Continental rehab next to Mercy.

In time I managed to open a few checks and beg my bank to send an officer over to re open my accounts.

Doc Callery visited me once. His staff never visited me after I came out of coma, and if they did they stood way back at the door like I had leprocy. All I can guess is they were horified and afraid of me.

I went back to speak to the nurses in the ICU since I broke some kind of record for how long I stayed in ICU.

They were nice but what I needed was eating and how to navigate through the positive part of this surgery. None of that was offered. I can understand how they would not want a failed case to present himself in meetings.

I am a strong guy. Once or twice I cried in Dr Callerys office and he felt I was perhaps depressed. I was just angry. He could not know how frustrating it was to have gone through this so called "adventure."

I have never been depressed over this. Just angry.

One of my goals lately has been to try to stem the number of people getting this surgery. I don't believe physicians give patients a viable decsian tree.

For instance, If you are 35 female and the only fat person in your family, how do you decide as opposed to the 35 year old female where everyone is fat in your family?

What are the ramifications of age alone as a factor? What about gender? What about other co mobidities?

How is informed consent made without a contra or opposing viewpoint.

I have been thinking of forming a non profit in opposition to gastric bypass surgeries and education instrument for people to use. Also, I am talking to some speaking organizations about presenting the other side at conferences or conventions.

I think these are constructive ways to direct my energies.

Additonally I want to make a database of suspect surgical instruments that can be reported even if their failures fall short of being considered defective from a legal point of view.

Basically I want to help that man or lady laying in bed and looking around themself and seeing 100s or 1000s of success stories and finding themself the statistical loser with their life irretrievably changed.

I would love to hear inputs ideas suggestions. I realize everyone tries to push a voice like mine away, and not listen to what I have to say since so many have positive experiences with this surgery.

Count me as one who rue the day I lay on the table and let them wheel me in the bright room.

Hugs to all, you are all part of this journey too,

Henry

PS I didnt proof or re read this. Hope there are not too many grammer errors.

Josephine · 09-08-2009, 01:49 AM

Henry I am so sorry for your pain.
I too have suffered years of pain after WLS.
My body has rejected the lapband and I'm being revised to RNY soon.
Ya can't talk me out of it. I've been suffering in pain for 3.5 years.
Waiting for surgery for 14 months. Plenty of time to educate myself.

I think what you want to do is selfish. Let me explain why hon.
You belong to that 1-2% of the WLS community that suffer as a result of this surgery.
You also belong to that GIGANTIC group of the world population that suffer as a result of obesity.

In essence because of something that happens to VERY few people, you are betraying the hope of a MAJOR portion of the members of one of your groups that will consider WLS for a small handful of people in the other group.

If anyone feels your pain it is me. I've suffered every single day for the last 1300 days as a result of my decision to get the lap band. But dear what I'm telling you is that the math doesn't add up.

I understand that you need to do something, but do it fairly. Sticking to statistics, lets say with the rest of your life you successfully manage to keep 1000 people from doing RNY.

Statistically you will be doing 10 people a HUGE favor and 990 people a HUGE disservice since many of them will continue to struggle with their weight, continue to fall deeper into depression, continue to see their weight climb, get older, get sicker, and end up in great amounts of pain anyway.

I don't see how that is a good legacy for you to leave behind, that you robbed 990 people of a beautiful gift and led them to a life of ridicule, disease, and pain to save 10 people from a life of pain.

I know you want to help and your heart is in the right place, but the numbers don't add up. For me personally, I plan to tell my story of lapband failure and hope it does change some peoples minds because 80% of all lapbands fail within 10 years, we're talking about replacement, removal, or revision due to slippage, erosion, and rejection. My numbers add up.

1000 patients. 800 have to have additional surgeries to help them. Other 200 unknown, they might still have to have additional surgeries, just not in the first 10 year timeframe. If 1000 patients don't have the lapband because of my influence, those patients are very likely to have a different surgery instead (Rny? Sleeve?), lose weight on their own since lapband patients generally weigh less, and some of them will have great success and some of them will fall into the wls victim category. The data isn't there but I'm willing to bet that 100% of lapbands actually need to be removed/revised/reversed within a lifetime since they have a 10 year life. Some may choose to live in pain instead of going back to the doctor tho. STILL my legacy would be that I saved more people with the knowledge than I hurt. You would hurt more people with your knowledge than you save.

It's just a matter of mathematics. And I know it seriously sucks and it's not fair and it's not right that we're left in all this pain, but the best thing you can do is advocate for wls patient rights rather than trying to talk people out of surgeries.

Crimson Kittie · 09-08-2009, 03:50 AM

Well Henry all I can say is I'm sorry

I'm sorry things went so terribly wrong for you.

And don't be afraid to speak out. What happened to you could have happened to any one of us.

I am not complication free .. but nothing to the extent of what you experienced.

Your story is exactly why people need to do their research and know exactly what can happen from this surgery. The good AND the bad.

I can't offer any advice ... but I do hope you can find some relief for all these issues.

(((Henry))) xx

poet_kelly · 09-08-2009, 07:57 AM

I'm so sorry for all you've been through. Of course you rue the day you went into that OR. What an awful experience.

I think educating people about the risks of WLS is a good idea. I think people need to be informed. The truth is that most people do have good experiences, but they still need to know what can happen.

I do disagree with the idea of being opposed to all WLS, which it sounds like you are, since you want to form an organization against gastric bypass. I understand why you might feel that way, given your experiences, but the truth is that gastric bypass does help a lot of people. People should be educated about the risks they are taking, sure, I'm all for that. But there are risks to any surgery. Should we stop performing all sorts of surgeries because of those risks? I don't think so. In many cases, the benefits outweigh the risks.

I do hope your condition continues to improve and that you are able to put your life back together.

Kelly

HenrySanDiego · 09-08-2009, 10:01 AM

I would be more prone to standing aside if I heard even a few voices of opposition, but this community is more resistant to hearing the full story than any I am aware of.

I empathize with the fact some people see this as their only salvation, however I believe if equal dollars were spent on actual physical training for exercise and eating and psychological therapy a fair number of cases could have safer results.

I do not feel all the answers are in statistics. I am certain my outcome was adversely affected by statistics. For instance I was informed many months after I was out of the hosptal that the reason I had not been entered sooner was because I did not present the proper statistical data to justify re entry yet. The doctor indicated he liked t wait till 2 statistical deviations from the norm. At the same time I had 2 and half liters of fluids in my abdomin and that was not discovered till they went in to explore.

You would think they would know of leaks before 2 and half liters were leaked.

Other factors play into things as well, how many physicians can treat you at a hospital. Was my re entry delayed due to the surgeons being simply wore out and unable to work without a sleep period? I will never know, but I do know that statistically it is defensable for them to have waited as long as they did. Who knows. It doesn't do a lot of good to disect these things after the fact.

In addition, new medicines and treatments will be coming forth shortly and young people can afford to wait. Obesity certainly takes its toll on anyone, but it isn't a death sentence.

If you fear that letting my voice be heard will be a disservice, I am sorry. In reality I would not speak up if more people did. As I say, anyone who ever says anything negative gets beat down in these forums and that is okay by me since they are usually private and board moderaters can do as they wish.

I wish to reach out to the 100 thousands considering this surgery and inform them as I was not. Inform them in a viseral way that not even a physician can who hasn't experienced the difficulties.

When I had my surgery I read all the materials, attended all the classes, visited chat rooms for hours. I did the best I could to educate myself and in the end felt like I was a riverboat gambler in vegas betting on my future with this surgery.

While there is a gambling element to the surgery. The non gambling elements are: imperfect instruments and methods, aggressive treatment, as in borderline or young patients in near perfect health. I believe there is a gender risk that is not reported, or was not when I took my surgery. I believe informed consent is possible when people can hear the views of "non believers" or "those not drinking the cool aide."

Doctors do try to fill their sugical calendars. I have stacks of 4 color process brochures promising to make all my dreams a reality. In this climate and without a tempering voice anywhere in the mix, I feel is a scarey thing also.

To put another way, I am a liberal democrat, but I enjoy watching Fox news and see some of the view points they present as interesting at least if for no other reason than that millions of americans believe them.

I honestly hope this surgical procedure is replaced in a few years with an excellent oral or IV medication. The last time I spoke to Dr. Callery he indicated there was hope for such a thing very shortly. It appears that researchers have hope of duplicating some of the metabolic chemistry in the body from a gastric bypass artificially and induce similar weight loss safely and without invasive surgery. I certainly hope for such a medicine for those looking for treatment in the future.

Henry

Vikkator · 09-08-2009, 02:08 PM

Henry, I am truly sorry you have had to suffer from your WLS experience. I'm sure you know that you're not alone. When I first started this journey, I had read an article about a procedure done that severs the vagus nerve (see link). Forget surgery for weight loss: Cut nerve instead | Oakland Tribune | Find Articles at BNET. One of the surgeons who was in the study, Dr. Thad Boss, was my original choice of a surgeon. Unfortunately, he was ill and died of cancer shortly after I got into the program, therefore the study was stopped (at least it was here in Rochester). I never got the chance to ask him about it and I don't believe that the 60 patients he was going to do a trial on ever got the chance. I was hoping to be one of them. Instead, I had one of his colleagues do the surgery on me. He is a very well respected surgeon and to this day, I've had no complications. I am very grateful for that.

I'm bringing this up because it could be an alternative to gastric bypass. If you want to do something for the good of us 'fat folks', you might want to look into this more to see if studies are still continuing on this.

I do have to disagree with one of your statements: "Obesity certainly takes its toll on anyone, but it isn't a death sentence." For some, it very well is a death sentence. It would have been for me, if I hadn't been given this surgery. I'm one of the lucky ones and I agree with Josephine, that you could be doing a disservice to many people who can greatly benefit from this surgery.

People do need to do their due diligence before blindly walking into getting this surgery, but they need to learn about both the positive and negative aspects of getting it done. My family was scared to death for me. My husband practically begged me not to have it done, but it was my choice. I chose to live the rest of my life feeling like a normal person, and I'm truly loving life now.

HenrySanDiego · 09-08-2009, 02:17 PM

I am so glad you had a positive outcome. Most do.

I do not believe surgeons are always great educators, and information dispensers have yet to find a way into this community since it is so self guarded.

The eurphoria of winning the WLS gamble is so huge its hard to want to listen to the wls nay sayers, I get it.

I will look at the articles and information you provided with zeal and thank you for your kind reply.

henry

jerseygrl684 · 09-08-2009, 02:27 PM

While I do appreciate the opposite end of the spectrum. You are aware the this site is RUN by the Callery's? I wouldn't recommend nor do i see you sticking around much. This is probably enough to have you banned from the forum THEY pay to keep up and such.

While there is all sorts of rights when it comes to free speech and the internet, this is borderline slander.

HenrySanDiego · 09-08-2009, 02:29 PM

I am against 80 to 90% of wls procedures. I also think that probably thousands who actually need the procedure cannot get it due to insurance and other factors.

I am against it mostly. Not entirely.

Clarification,

Henry

HenrySanDiego · 09-08-2009, 02:33 PM

I speak with Dr Callery on the telephone. I know he is very proud of this forum as he should be. It is a great resourse.

I think it is strong enough to take and hear my viewpoint, a viewpoint he knows I have. And if he bans me then let it be. It is his forum as you point out.

But, I suspect Dr Callery feels this forum is strong enough to hear my voice.

Henry