Horror Story

[SistahSistah 16]

1/29/13 - Update/Edit:

As several have inquired about the timeline and were confused when i said her surgery was in May but she's been on a feeding tube for two years. The surgery was May of 2010. I was specifying the month only as a point of reference for the point at which the issue became critical (July 2010) and how long she was in the hospital that first time (into October 2010). She was also hospitalized for a few months in January 2011 when the stomache leak/infection spread through the diaphragm and into her lungs, and again the following spring and summer of 2011 for the same issues. Sorry for the confusion.

Also - I agree that the bulk of the issues centered around follow up care - which is why I was so specific about where and by whom she was being treated. But I quickly learned that such leaks and subsequent fistulas are NOT uncommon with this type of surgery - I never said they were the majority. Additionally Physicians who are now caring for her have previously cared for individuals who suffered similar, though not quite as critical, issues after having this type of surgery. So that is legitimate.

Good point on the Hipaa item - but I'm not sure that applies to family or friends sharing information they are aware of. I have no professional or legal obligation to her or her care and am not a POA or medical care provider.

Thanks to all who have read and responded - I'm still reading through them all.

****************************************************************

Original post:

I have not had gastric sleeve, but my sister has and this is her horror story. In the month after her May surgery, by Dr. Chua of Aurora Sinai in Milwaukee, my sister (Jane) came down with flu like symptoms. Although she contacted her primary physician, who was aware of the recent surgery, and I believe she had an office visit with Dr. Chua, nobody showed any concern about infection. This is despite the fact that EVERYBODY knows that infection mimics flu like symptoms and it was nowhere near flu season. Nobody ever did any scans post surgery to determine of there was any issue with the healing of the internal surgery area - even though I have since learned that other patients had experienced similar issues to what my sister was about to go through.

It turned out (after three ER visits in three days, despite the fact that I said I was worried about infection from the very first visit) that a staple hadn't held and that food/fluid had been leaking into her abdomen from the stomach causing a MASSIVE infection. By the time Aurora Lakeland in Elkhorn paid any attention to this she was almost dead. She barely made it through and it was literally touch and go for WEEKS!! AND that hospital wouldn't even treat her because they don't do bariatric surgeries - she had to be airlifted to Milwaukee.

What followed were numerous surgeries, months in ICU and then regular hospital (from July 4th weekend into October), an induced coma with her hands strapped to the bed so she wouldn't inadvertantly pull out tubes and wires, being intubated for breathing assistance, additional infections, memory loss of that entire time, and leaving on a feeding tube. She has been on that feeding tube for over two years now.

Oh she's thin alright. woohoo. But she gets her food from a bag hanging on an iv rack and has to grind her meds and flush them through the feeding tube line, as well as a drain that collects Fluid from her abdomen and open wounds that need daily care. She has NO muscles left. She probably couldn't walk a block if she was allowed to.

She came home from that hospital stay with a GIANT open wound the length of her abdomen - I mean it was big enough for me to stick both my hands into - and a wound vac installed in it to constantly vacuum up the Fluid and goop that goes along with healing. That fluid drained into a plastic container that hung from tube(s) coming out of her abdomen - which she had to have with her always. It was all very painful and really gross.

That was just the first hospitalization. By January she was back in the hospital with another massive infection that had burned through her diaphragm and into her lungs. This time she spent her time in pulmonary ICU. You see they told her to start trying to eat - that they thought the holes in her stomach had closed, but they didn't do regular scans to verify this....again! They were wrong. Again.

Only this time her primary physician, Dr. Rosol of Aurora Lake Geneva, had diagnosed her with pneumonia over the phone and had given her a prescription not even strong enough to deal with pneumonia. So when she didn't get better, by the time the Aurora ER took her seriously she was again near death. This time they had to do lung surgery AND abdominal surgery to clear out and treat the raging infection caused by fluid and matter leaking from the stomach into everywhere.

So apparently this type of thing isn't that uncommon with this surgery, nor are the "fistulas" that develop as a result of this complication from this type of surgery. If the tissue around this fistula isn't so damaged that it can heal on its own it could take years. If it's damaged - as hers was from all that infection - there is no sewing it closed and it doesn't heal on its own. Imagine being on a feeding tube for the rest of your life - never tasting food, never enjoying a meal or a drink or a dessert or a holiday with your family again. Never a chocolate bar, or a bowl of Cereal, or a salad, or a glass of juice. NOTHING. All because someone convinced you that gastric sleeve surgery was the answer.

So if you are considering this surgery, don't. It's just not worth the risk. I know, if my sister could go back, she would choose fat over this lack of a life any day of the week. I grew up thin and am now fat and I would NEVER EVER EVER have a surgery to reduce my weight. Although I haven't been able to be disciplined enough to do it I know the only solution is eat less, move more. Two steps. The only solution.

[PdxMan 4,292]

I am sorry to hear about your sister. Leaks are just one of the known risks of this surgery, and was a risk I was willing to take given the percentages of complications.

Everyone has their own reasons for having the surgery and each of us has our own risk tolerance. If your risk tolerance is very low, then I agree, don't have any surgeries. But, for myself, my quality of life was going downhill fast. A complication of a leak or otherwise was just another risk of being morbidly obese. I was willing to take the chance to fall into the 97% of patients who don't have these types of complications.

Again, I am sorry to hear about your sister and I will keep her in my thoughts.

[lilbearzmom 584]

You are an idiot to post this here. I don't have any problem wih people posting their stories (even ones with bad outcomes), but in no way shape or form is this kind of situation common. The opposite is true. So stop trying to scare people away from LIFE SAVING surgery with your story. It would have been fine if you had told the story and left it at that. But no, you have to punctuate it at the end with your moronic advice and how you would never have weight loss surgery. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx violation of forum rules. People die from having their wisdom teeth out- should they not have surgery to alleviate their pain?

I hate trolls.

-Kendra

Edited January 17, 2013 by *susan*
Violation of forum rules

[Alamoloser 70]

Sorry to hear about your sister but I'm sure she knew the risk going into the surgery. We all have fears and worries about the surgery but we also counter those fears with the fact that most of us here are past the threshold of exercising the weight off or dieting. I guess what I'm saying is she had the surgery for her health and unfortunately do to some "borderline neglegence", she had a bad turnout afterwards, I don't she's representitive of the majority of people that have had it. I wish you both the best but to say don't have the surgery because of her outcome isn't fair to those that are pre-op or considering.

[Carly4HandinSD 313]

Sorry to hear about your sister.

However, with ANY surgery comes risk. While your sister had the worst happen to her, many people, like myself have had this surgery with little to no complications. When you have struggled years or your whole life and you see how being severely obese takes away from your life you will do all that you can to help yourself. Most of us wouldn't have this surgery if we could do it on our own. We have all tried everything possible and while it may have worked short term, long term is the key. This surgery is life saving for so many people. Now, if someone needed heart surgery to save their life and because of the heart surgery they had a complication that was severe.. would you suggest they don't have the heart surgery as a chance to save their life? No, you would hope that they would do all that they could take the chance. it is the same principal Surgery is surgery, regardless of what kind there are risks. And to us the risks are worth it, leaks happen, I think everyone is made aware of it before surgery and knows it can happen. While it is scary and I feel for anyone who has to go through it, it is a risk you have to take. Again, I'm sorry to hear about your sister and stories like these let people know off all possibilities, please do not come on here basically insulting so many of us that have had LIFE SAVING surgery.

[PdxMan 4,292]

Kendra, everyone should be able to post their stories and not be berated for doing so. This is their experience with the sleeve and while it is very uncommon, it is a risk. People researching the sleeve should know this and be totally informed. While you are stating your opinion, the OP also has the right to state theirs.

Everybody's life stories are different. Some people are completely content being morbidly obese. Some people have tried dozens of weightloss options failing them miserably (me). We all have our reasons to either have surgery or try other means to live a healthier life. "Normal" people are usually ignorant of these struggles. I know my wife was and I am quite happy that she is ignorant of these struggles. I wouldn't wish them on anyone.

[favoredone 590]

I'm sorry about your sister.. BUT, my life was saved by having sleeve surgery. Perhaps people should be warned against the medical staff that ignored your sister's symptoms as well as the risks of surgery.

I knew the risks, but I was willing to take them and not be confined to a dialysis unit, cane, and eventually a hospital bed due to obesity related illnesses...

I'm glad you posted your sister's story and there are several on this board who have had severe complications.. A few may even regret surgery.. but what thing is life is 100% favorable all the time? Nothing... People should read your story and make an informed decision about what they want to do.. Blessings and thoughts of healing toward you and your sister...

[Lisa's Hope 421]

I'm confused. You said she had her surgery in May but you then said she has been on a feeding tube for two years? When exactly did she have the surgery?

[firelle 146]

I'm sorry to hear about your sister. I can't imagine how difficult and scary it's been for her and your whole family. Thanks for sharing her story, and I'm glad you did. I know surgery has its risks, but it's easy to look at a piece of paper that lists the risks, and not really think about it too deeply. It's easy for me to just think about the end result of being thin and healthy, and never give a second thought to any complications that might happen. Your sister's story definitely forced me to get my head out of the clouds. While I am still going the route of surgery, I appreciate you making a serious complication very real for me, and wish your sister and family the best.

You certainly don't sound like an idiot or "mentally challenged" to me, you sound like someone who loves her sister very much and has endured a lot of pain and scares, and wants other people to know her story. I'm sorry the other poster didn't see things that way and had to resort to name calling.

[Winningbylosing 49]

Thank you for sharing. Every surgery comes with risk, this is a risk we choose to take. I've had a family die after a tooth was extracted. This doesn't mean I will never have a tooth pulled, just means I will be more vigilant about my own care.

Im very sorry this happened to your sister.

[shrinkydinkme 221]

I am so sorry for your sisters struggles and complications. I appreciate knowing that the flu like symptoms she had are cause for alarm and insistence on medical treatment to rule out a leak. I understand how upset you must be and how anyone in your situation would feel the strong feelings you do about weight loss surgery. Watching you sister suffer they way she is would make you and most others in your situation scared to see anyone else make the choice to take that risk. I knew going in about the risk and to me it seemed worth it, stories like this just helped me to make sure I was sure and pray a bit more!

[annabelle 76]

one of the first things I was told were the risks, the one risk they never spoke about was that without this operation il die, in the 1996 my mam had a quadruple heart bypass she ended up with open wounds that took over 3 mts to heal but without the op she would have died, it was a major risk as she was over weight, my mam was given to a second chance all those yrs ago now is my chance risks and all im taking it, but you have shown you and your sister are very close to come on here and voice your concerns, hope you dont get too down hearted over the replies as every one has a right to give their view even do we might not agree with it x

[joseph 40]

You are an idiot to post this here. I don't have any problem wih people posting their stories (even ones with bad outcomes), but in no way shape or form is this kind of situation common. The opposite is true. So stop trying to scare people away from LIFE SAVING surgery with your story. It would have been fine if you had told the story and left it at that. But no, you have to punctuate it at the end with your moronic advice and how you would never have weight loss surgery. [XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX violation of forum rules]. People die from having their wisdom teeth out- should they not have surgery to alleviate their pain?

I hate trolls.

-Kendra

she dont mean [XXXXXXXX VIOLATION OF FORUM RULES], she said what happened to her while doing the surgery so everybody's aware.

Edited January 17, 2013 by *susan*
Violation of forum rules

[OnAJourney 177]

Im sorry for your sister... but your "scare tatic" should be to warn people to research the Docs they choose... what happened to your sister sounds like Malpratice to me... I hope you got a good attorney.

People that make this choice usualy do TONS of searching for the right Docs, the right Hospitals. It sounds like your sister made a bad choice and is now paying for it... THAT is the message you should be telling people about.

[Huntingnurse 510]

Sorry to hear about your sister, but first off you're violating her privacy and HIPAA by releasing her medical history publicly on the net. I had the surgery new years eve. I knew leaks were a possibility as does anyone else who has this surgery. Hell you can die on the table giving birth to a child - do you think every woman should quit going through child birth? It's a known risk you take - sorry it happened to your sister.