Tuesday, February 18, 2014

Another one lost


One of the most difficult things with being involved with weight loss surgery patients is when one observes people passing on, way too early.  A couple of years ago, I lost my bestest friend ever (pictured above) - she was a VBG patient which is a stomach stapling only - the surgery worked for her for about 12 years (with a lot of hard work on her part) and then, she got very ill with fibro and lots of other things to the point where in her early 50's, she not only gained weight very easily, eating very little food, but was basically bedfast.  She was a highly intelligent lady and her courage was amazing. She would boldly post about WLS, warning people despite getting numerous "nastigrams" in the mail. We chatted on the phone daily and shared everything with each other.  Then one day her husband called, distraught.  He had come home to find her deceased.  At the age of 54.

I don't understand why folks write nasty emails to people who try to present a realistic view of WLS.  Basically,  it seems, that pre-ops who want to believe the dream and new post ops who have lost a lot of weight and are thrilled at this, seem to feel that people should post nothing negative about WLS least a person might be "denied" this "life saving" surgery. 

Trouble is, in all these years, I've not seen it save any lives - on the contrary.  Cash cow, definitely.. and one WLS surgeon told me laughingly, "I bury my mistakes!"  It's true that dead people don't talk.

Lately, another patient has died, probably earlier than would have, had they not had WLS.  This patient had had the duodenal switch which is a surgery which calls for cutting away 90 percent of the stomach and bypassing most of the small bowel.  They lose weight well but in the long run, it's almost impossible to replace the nutritional deficiencies.  Less than 25% of the surgeons in the USA do the duodenal switch as there are safer procedures available but they don't want to openly diss it either, even if they have stopped doing the procedure because they are worried about lawsuits (and many surgeons have multiple lawsuits pending).

This patient was 57 or 58 years old and had their surgery in year 1999 or 2000 - was very pro surgery and very much angry that I dared to say anything against it.  Was a young person with their life ahead of them and now they are gone like so many other of my WLS friends, died from lack of nutrition, it is thought.

The truth about any WLS is not only do people have to do the same things that non surgical people do to keep off the weight but also, they have to have regular checkups and take a lot of expensive supplements, in other words, work very very hard to keep off the weight, and even then, they might not have a good prognosis.

I have a cousin whose BMI is over 75 - she is 77 years old and going strong.  Had she had WLS, she probably would not have lived to that age.

It's ironic that in this day of super communications, things which should be  communicated, somehow may not be. In other words, if it's too good to be true, it probably isn't.  There is no easy way out and certainly not having surgery to lose weight!

4 comments:

Unknown said...

Do you have a count on the people who die from WLS? My daughter 29 at the time 11/11/08 passed away. Was just curious how many people you know have passed. Thanks Terese Mayo very loved & missed daughter Cristina "Crissy" Lynn Mayo 1/17/1979-11/11/08

Sue Joan said...

Terese Mayo, First, condolences to you for the loss of your daughter... second, the official WLS death count only includes those who die on the table or within 30 days after which is approx 1 or 2 in 100 surgeries and 30% within a month of surgery. The other statistics are not generally kept - deaths are often not reported as from WLS although WLS was often, at least a factor if not the important cause. That's because the M.E. doesn't necessarily autopsy many deaths and isn't aware of the surgeries the deceased might have had. One hospital in Fresno in the 1990's did try to follow the deaths which could be attributed to WLS or side effects and came up with 30% dying (from gastric bypass side effects) within the first year. There seems little interest in the medical profession of pursuing these numbers. As to how many I've personally known since becoming involved in 1999 - most of the patients I knew, who had procedures in 1999-2000 are no longer with us. My best friend who was a stomach stapling only, died at the age of 54, 2 years ago. I miss her very much. Sorry I don't have better news. Again sorry to hear about your daughter. Feel welcome to write me email..

Rich said...

I too would be very interested to know the long-term WLS death rates. I lost my wife Heather in Feb 2013 at the age of 26, eight years after having a RnY performed by the (now suspended and discredited due to multiple deaths amongst his 6000+ patients) 'King of WLS', Dr Sheldon Randall of Massachusetts. Heather had a revision in 2010 to repair the staple line but according to her autopsy it once again ruptured, with the gastric contents gradually eating their way through her stomach, diaphragm and pleural cavity before finally catastrophically discharging into her left lung. She was my soul mate, best friend and hope for something better, and my life has changed beyond all recognition since coming home to find her gone, not least because I am left balancing work with raising our 2yo son whilst dealing with grief, severe depression, legalities and all the practical issues. Her full inquest is at the end of May and one of the major causes of the delay has been finding a bariatric expert willing to act as a witness. I am still worried that they will somehow attempt to rule that her death was caused by 'obesity' which I don't buy for a minute because her similarly-sized Mom is still going strong in her late fifties.

One of the avenues we are pursuing is why despite numerous doctor's visits for abdominal pain and discomfort during 2011 and 2012, there appeared to be little urgency on the part of her physicians to investigate the potential relapse of this previous issue. There is a case for very intensive monitoring of WLS survivors to ensure any problems are caught early but this certainly wasn't done in Heather's case and indeed her contact with a bariatric specialist was delayed perhaps catastrophically by NHS procedures which stipulated she first see a dietician (who due to her regain accused her of lying about her caloric intake and me of being her enabler!) but ultimately, had she not had the surgery I am convinced she would still be here. Pre-WLS she was 400lbs but had no health problems and told me that her primary motivation was to be accepted, free from bullying and abuse and to have things like a family and a husband that society had always insisted she didn't deserve. Ironically it was the surgery (that as the health issues piled up she bitterly regretted) that would cost her all of the above. Dr. Randall's scalpel may have inflicted the fatal cut, but it was our society and its institutional fatphobia that I ultimately blame for her death.

okaykatelyn said...

Hi
I am so sorry for your loss..
I am curious though, do you know people who have passed away because of the gastric sleeve?