Horror Story

[SistahSistah 16]

Sounds like malpractice and an inability to self advocate. If people do not research and know what can go wrong and demand, not ask, but demand propper care things can go from bad to horrific fast. Sorry to hear about your sister but I would be looking for different docs (assuming this story is real, some of the dates arent matching Imo.

May of 2010 was surgery. Sorry for the confusion.

[SistahSistah 16]

Great reminder to always call your surgeon in the first few months if you have ANY medical problem. They are the experts, not us, not the local ER an not family practice doctors. Thanks for the info, may God heal your sister.

Thanks for the kind words. I should probably mention that not only did she see her surgeon while having these flu like symptoms she also saw her primary care physician. Not until she was in septic shock did we get suitable care. I do realize this is a failure of the Dr.s - just sharing the horror story to make the ultimate risks real for others. Thanks again.

[No game 14,437]

Thanks for the kind words. I should probably mention that not only did she see her surgeon while having these flu like symptoms she also saw her primary care physician. Not until she was in septic shock did we get suitable care. I do realize this is a failure of the Dr.s - just sharing the horror story to make the ultimate risks real for others. Thanks again.

Sistahsistah,

I would like to apologize for all the silliness that went on here. I hope for the best for you and your sister.

Laura

[SistahSistah 16]

May I ask you the OP a question? Did your sister have other underlying health issues that may have added extra complications that you did not mention?

I am sorry to hear this has happened, but like others have mentioned sounds like malpractice. The dr.s and surgeon clearly did not do their job, and that is on THEM! Had they listen, and took action right away your sister may not have gone through what she has (of course we'll never know that).

She had no other health conditions that would relate to the outcome of her surgery. As far as internal health - heart, internal organs, lungs, etc. - she had amazingly good health considering she'd struggled with weight issues her whole life. She felt that her medication for an unrelated medical condition was contributing to her weight - and her surgery Dr. supported that. However she was required to independently lose 18 lbs in order to qualify for the surgery, while still taking that medication, and she did that. So the medication couldn't have been the primary cause of her weight. Plus she'd always struggled with weight before she ever took that medicine.

Sorry for the delayed response. I didn't realize how many comments there were and am just now getting the chance to go through them all.

[fyre_storm 1,412]

How is she today? Three years later? Is she any better??????

[SistahSistah 16]

Whew! There is so much to read through in response to my original post. I'm sure I won't get through it all in one day. I will say that I was indeed angry when I posted it - I'm angry any time I start talking about it. The procedure was a failure in so many respects. My sister says that if she could go back she would never do this surgery.

As to the intent of the post - I think it is served. It certainly generated a lot of very thoughtful conversation. It also clearly made some think twice about having the surgery - take a closer look. It also gave people valuable information about the need post op diligence and advocacy.

As far as coming back to post - it's a busy life and I have three kids and family members who need help with care. I told my sister about it - although I don't believe she's visited the site yet - because I thought it would be helpful to her to talk with people who have had the surgery whether they've had great or not so great experiences. Hopefully she will.

So whether people agree, disagree, think I'm a troll (whatever that is), or a liar (which I'm not), it was the story I had to share and it generated discussion, passionate discussion at that, and thoughtfulness, even prayerful consideration. So it is what it is.

[djsacco 32]

HIPPA is not a factor here at all! She is not the facility or Dr. treating her! Family or friend can tell anyone they want! My question is did she not have a leak test before leaving the hospital? I had 2 before I was released. Can that happen after the fact?

[Butterthebean 8,146]

.....but the fact is that the leaks are common. .

Less than 1% is not what I would call "common." While I'm sorry this happened to you and your family, and I'm glad you told your story, I believe you are over stating the likelihood of complications from this surgery. No surgery is without complications. For the return on investment, VSG is a very safe surgery. One thing is for sure, the possibility of complications due to remaining obese and never losing the weight are probably close to 100%....that to me is way riskier than VSG surgery. If you can lose the weight without surgery, I wish you the best and I salute you. But the studies of obese people show that the likelihood of those of us with 100 or more pounds to lose have little chance of doing it (and maintaining it) without surgery.

[SistahSistah 16]

I'l give you the short version Starting BMI of barely 35. No comorbidities, no complicating factors (I'd had anesthesia and knew it wasn't an issue, just an allergy to morphine which of course isn't rare). High pain tolerance, healthy for a fat chick No family history to worry about, The anesthesiologist and doc were joking about a tennis date the week after surgery with me. I was supposed to be their poster child for an easy recovery and weight loss Didn't turn out that way.

Massive bleed during surgery, they didn't transfer me to a hospital though, kept me at the surgery center all night and the next day (I don't know how long, over 24 hours is all I know) where I experienced constant seizures due to blood loss and the mass of blood in my gut. Likely that either masked the leak or caused it but who knows. Finally taken to a hospital and left two days later only to return off and on, much as you read about this case, while the docs blamed it on the blood and didn't feel a leak test was necessary. I had ALL the symptoms, but no one would do the test. So finally my plural sac was crushing my lungs due to the Fluid build up from the infection due to the leak...that no one would detect, and my lungs became the focus not the leak because they couldn't keep them drained. Multiple procedures to drain the lungs finally allowed for discovery of the leak, which was then so far gone (damaged tissue) that they couldn't repair with traditional methods. In the mean time the PICC caused blood clots, the drains caused issues with my lungs....you are a nurse, you probably know how it all snowballs

Aprox five weeks after my first surgery I had my second to install an experimental treatment called a claw. It has a high failure rate, but when your tissue is badly damaged it's the best option so they installed that. I was lucky and it held. But I faced the loss of my stomach if it didn't because once that tissue is damaged, it's tough to put it back together.

I was bedridden about 60 days. In hospital three weeks or so, give or take. Several ER visits, half a million bucks ya da ya da. So this story does not sound far fetched to me. Had I stayed with my original doc and local hospital I might have been in the same boat. They tried to send me home too.

It's hard to be an advocate when you are near death. Even a nurse must understand that there are times when a patient just can't be their best advocate (not speaking of you but of the other nursing commenting). You have to see folks who are normally rational human beings who get so beat down they just can't think or communicate their needs don't you? It's easy to say you'd be tough...but only if you haven't been there.

I have lost weight But it wasn't worth the risk and what it did to my family. This story sounds believable because I lived it to some degree. I feel bad this person was so beat up they never came back to post again. They might have seen that there is some good to this surgery if they hadn't been so beaten up. Do I recommend it? NOt often! But I can see where it makes sense.

Thank you for this post! So similar. You are right - the patient gets to a point where she just wants to give up. It's hard to advocate for yourself when you feel like there is nothing left to live for. And it's hard for a famiily member to watch someone go through that or get to that point. How can I possibly tell her - you'll get better, or you have to keep fighting when I'm not the one going through it. The claw failed for her. She is now undergoing stem cell therapy experimentally. She is lucky to have this option and there has been some tissue growth. But she is not yet healed and the future is unknown. Thanks again.

[Butterthebean 8,146]

HIPPA is not a factor here at all! She is not the facility or Dr. treating her! Family or friend can tell anyone they want! My question is did she not have a leak test before leaving the hospital? I had 2 before I was released. Can that happen after the fact?

A leak test at the hospital is good, but from what I've read some leaks won't show up right away due to inflammation sealing it shut. When the inflammation goes down the leak opens up. That's not common but it does happen. That's why it's a good thing to pay close attention to your body for those first few weeks after surgery.

[Katie713 423]

Sistah...Sistah... thank you for coming back to revisit your original post and respond to several posts. I hope your sister responds to the stem cell therapy with stimulated tissue regeneration and can at sometime in the near future return to normal nutrition and the good times life affords us at holiday gatherings, etc. and those private moments of sipping a cup of coffee without a care in the world.

Your sister's story helps me appreciate my own uncomplicated surgical outcome more each day!!

[SistahSistah 16]

Last post for me on this topic. I've read through all - except the ones not related or those about chocolate covered bacon, deep fried beer, or deep fried pepsi (lol)

It's only fair, now that I've had time to digest all this feedback, and since this created such drama, to provide an updated status. As I mentioned she is still on a feeding tube. She may drink some Water only to take certain pills which cannot be ground and flushed through her feeding tube. other than that - no food, no drink, no anything by mouth. Her food is some kind of tan liquid that comes in a bag and hangs on an iv pole and drains through her feeding tube to her stomach below where the holes are located.

As mentioned before, she really has no muscle or strength left - she lost so much during months and months of inactivity during illness, hospital stays, induced comas, and recovery. She is ridiculously thin. She still has a drain, constantly draining Fluid from her abdomen.

All of the months and months of weakness, minimal nutrition, etc. have taken their toll on her mind/focus/concentration as well. She is definitely not the same person she used to be, nor does she have the same capabilities. But she lives as normally as possible.

She requires help bathing and with daily bandage changes, but we hope that's not permanent. She is not allowed any physical exertion - not even cooking dinner for her husband or cleaning. And he can't do it because he has advance MS and is in a wheelchair.

But, finally, the bright spot is that she is undergoing experimental stem cell therapy which began this fall and which has resulted in some tissue growth. If it's not successful it means complete removal of her stomach. We've had to fight to keep the hospital from insisting we go in that direction twice since it began. If it is successful it could mean complete healing of the holes and eventually being able to get off the feeding tube. One hole has closed and one has not and there is still a "channel" that has yet to be healed. So there's a long way to go.

This is why she is allowed NO physical exertion. The new tissue is so fragile that just a little exertion or physical activity can result in a tear of the new tissue.

She is in the hospital every single week for procedures, scans, and check ups and has been for a very very long time. I just took her in the other day, unplanned, because her drain came out and had to be reinstalled. Almost every hospital visit is a day long event, requires anesthesia, and isn't very comfortable for her.

The stem cell therapy is with new equipment that goes through the esophagus and into the stomach through the interventional radiology dept. at St. Lukes Milwaukee. She has been going there since the one January stomach/lung infection when she ended up in their pulmonary ICU and that hospital is pretty incredible.

The doctors are (sp?) Dr. Schmalz (internal) and Dr. Bloomgarten (radiology), both of whom have fought on her behalf to keep her in this therapy and with whom we have all been very happy - especially Bloomgarten. The original surgeon is out of the picture. One other surgeon is waiting in the wings because she wants to just remove the stomach and be done with it (such a caring person - read with sarcasm)

I still do not advocate this surgery for most. I get that for some - like someone who can't get out of bed or out of a wheelchair anymore, or who doesn't have the time to lose weight naturally because of imminent risk of death, or who has some other mobility type issue like MS and who needs to lose weight but can't exercise - there may be no choice. However I strongly believe that if someone can lose 18 pounds in order to qualify for the surgery (as my sister had to do), they can continue to lose weight that way.

Most of the time she thinks there will be no end to all of this - that she is never going to get better - and who can blame her. At times she has wished she would just die. She is almost always in pain and has been since this all started. She is depressed and cries easily, and a lot, and who can blame her.

So maybe poor post op care is what lead to this being so critical, but it started with this surgery. She got all the warnings but Dr.'s stress that it's the smallest percentage of people who have complications - so she of course thought it wouldn't happen to her.

And the doctors themselves said it was not uncommon for leaks to occur. Maybe with perfect post op care it would have worked out perfectly, and maybe not. The point is that it is a risk and any person considering it has a right to know not only the very best potential outcome, but the very worst. I came across this forum and the first thing I thought was - here's a great place for my sister to connect with others who truly can relate to her and her situation. But I also thought - here's a great opportunity to let people know the worst case scenario, so I did and I'm happy with that.

I'm not a skinny person preaching from my soap box without any idea about weight loss and it's difficulties, or the health risks of being fat. I get that it's hard. I get that I don't speak for everybody either.

I strongly believe that insurance should encourage and pay for people to work closely with nutritionists, counselors, and some type of physical therapist or exercise coach to provide weight loss solutions rather than ONLY funding surgery as a weight loss option. Our healthcare system is so screwed up - but that's a whole different discussion topic.

[iggychic 1,405]

Sistah, give her a hug from one victim to another. My heart not only breaks for her, but my brain also has an understanding in a small way of where she is now mentally after this horror.

[lee bee 2]

I just have to say that I love NurseGrace's posts. They are well thought out, show knowledge and intelligence and are compassionate. We should all use her as an example.

[Lisa's Hope 421]

I have to apologize for bringing up that this didn't add up because of the "May" surgery issue. I feel so terrible! It is so hard to comprehend what happened to your sister. It is the worst I've ever heard of. I guess it is easy for us who haven't had real complications to think that in no way could it get this bad! I am so sorry. I cannot imagine what your sister has been and is going through. I pray to the Lord that she has some relief and this new procedure will work for her.