HOLY HELL! Frankenheap DS => Amputation => Malnutrition => ???

Munchkin

Munchkin

Full of Fairy Dust
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What surgery was Heap doing back in 2000? Either this guy is a troll or he is in a heap of trouble. Anyone know these folks?

Copied and pasted from OH...

I had a BPD-DS in 2000. I lost a lot of weight. My first problem was malnutrition in 2007. It ended up with me in a coma and both legs amputated. Now I have had to have Open Heart Surgery which did not go well due to too much calcification of my heart. I was doing pretty good, holding my own now in the last 8 months I started losing weight again. I have lost 30 lbs. in 8 months I take lots of supplements and I am trying to eat 2000 calories at least each day. I don't know what is going to happen. They are still looking into it. I have other problems and I am not sure I could make it through a revision considering my heart situation. I wish I had never done this but it sounded like the answer to my prayers when I did it. It was fairly new at the time. My wife also had it 6 months later and she has gained weight lately but she has a problem with about 6 bowels movements every morning. She has been gaining weight lately but she has been feeling better since she was able to gain a little. We are 62 and I 64. I need to have something happen soon. Dr.Lee Trotter saved my life in 2007. They didn't think I was going to make it. They had given me an infusion of albumin and I stopped breathing. They intibated and put me in a medically induced coma. My heart stopped pumping blood out of my feet, thus amputation. Dr. Trotter was able to get me on the right track and I did well. I even went back to work, tho not at the same job but worked for 2 years. I can't seem to stop losing weight now and I don't know why but malabsoption is suspected. I am 14 years into this and really don't want to die and leave my wife behind. I hope I can get this straightened out. I will stop now. All I can say is Dr.Trotter said this particular operation should not have been given to us since we were on.y 100 lbs overweight. It was too drastic and was meant for someone more like 200 or more over. I don't blame Dr.Heap he did what we asked for but I am hoping I can get it straighted out.
 
So this guy is the poster child for how NOT to deal with your DS. Seven years ago, his malnutrition (and mishandling?) lead to amputation of both legs. He's now in trouble again, and clearly being given TERRIBLE advice, but - and I think this is the first time I was made aware of this - HE WAS A PATIENT OF THE INFAMOUS DR. FRANKENHEAP!

Somebody who is on OH, PLEASE direct him over here!

I think this surgery is finally going to kill me

patngin
on 10/4/14 7:33 pm - Nine Mile Falls, WA

I had a BPD-DS in 2000. I lost a lot of weight. My first problem was malnutrition in 2007. It ended up with me in a coma and both legs amputated. Now I have had to have Open Heart Surgery which did not go well due to too much calcification of my heart. I was doing pretty good, holding my own now in the last 8 months I started losing weight again. I have lost 30 lbs. in 8 months I take lots of supplements and I am trying to eat 2000 calories at least each day. I don't know what is going to happen. They are still looking into it. I have other problems and I am not sure I could make it through a revision considering my heart situation. I wish I had never done this but it sounded like the answer to my prayers when I did it. It was fairly new at the time. My wife also had it 6 months later and she has gained weight lately but she has a problem with about 6 bowels movements every morning. She has been gaining weight lately but she has been feeling better since she was able to gain a little. We are 62 and I 64. I need to have something happen soon. Dr.Lee Trotter saved my life in 2007. They didn't think I was going to make it. They had given me an infusion of albumin and I stopped breathing. They intibated and put me in a medically induced coma. My heart stopped pumping blood out of my feet, thus amputation. Dr. Trotter was able to get me on the right track and I did well. I even went back to work, tho not at the same job but worked for 2 years. I can't seem to stop losing weight now and I don't know why but malabsoption is suspected. I am 14 years into this and really don't want to die and leave my wife behind. I hope I can get this straightened out. I will stop now. All I can say is Dr.Trotter said this particular operation should not have been given to us since we were on.y 100 lbs overweight. It was too drastic and was meant for someone more like 200 or more over. I don't blame Dr.Heap he did what we asked for but I am hoping I can get it straighted out.
Click to expand...
 
I can't speak specifically to the year 2000 or to this patient, of course, but Dr. Heap is known (infamous might be a better word) for doing something he called a "mini-DS", which is not a DS and not remotely mini. It involved not bypassing, but removing about half of the small intestine and removing the greater omentum, along with, I believe, a sleeve gastrectomy. I'm sure I've left out a couple details, but you get the picture.
Obviously, this could lead to both malabsorption and malnutrition, and you can't reverse it because what's gone is gone. This operation is not and has never been accepted as standard of care. I don't know of any other surgeon ever doing it, and it's "too drastic" for anyone at any weight. Whoever told the patient that it just wasn't intended for someone who needed to lose just 100 lbs doesn't understand what this patient had done and that it isn't a real DS.
If at all possible, this patient should get his operative report, and just in case the report isn't honest (not accusing on that, I have no way of knowing) he should also request the pathology report, which would document all specimens removed. And then present all that to his present treating physicians so that they understand what he had done, and hopefully get a better idea how to take care of him. He might need TPN to stabilize his weight and nutrition. And if they can't find some combination of supplements that he can take orally and sustain his nutrition, he'll need TPN for the rest of his life.
 
This is also why we freak out when people talk about surgeons trying out new procedures outside of properly approved clinical trials... My heart goes out to this patient - I hope he gets the assistance he desperately needs.
 
Oh my God. Thankfully, Larra posted and is now communicating with him. I wonder how his wife will fare, having the same surgeon? Sounds like she's also got issues.
 
This is so sad! I just feel like bawling my eyes out! I wonder if he ever had the help of a good support group? Him and his wife need to get signed up here!
 
oh my gosh, this is so awful, thank God I had a vetted revision DS surgeon, feeling very grateful now. oh my gosh when I read Frankenheap title I was already scared.
There is something a little off by this post, I think it is a combination of who knows what kind of surgery he had and also not being properly supplemented post op. and it sounds like it has been going on for a while. wonder what his blood work is like, and how long it is/was in the toilet, our bodies can only take so much malnutrition. I cant imagine what is running through his head, I hope someone helps him very very soon.
 
Since Diana and I both posted about this at the same time.... I am going to report myself and ask the mods to combine this with the other post. I liked Diana's title better anyway!
 
revisionDS said:
oh my gosh, this is so awful, thank God I had a vetted revision DS surgeon, feeling very grateful now. oh my gosh when I read Frankenheap title I was already scared.
There is something a little off by this post, I think it is a combination of who knows what kind of surgery he had and also not being properly supplemented post op. and it sounds like it has been going on for a while. wonder what his blood work is like, and how long it is/was in the toilet, our bodies can only take so much malnutrition. I cant imagine what is running through his head, I hope someone helps him very very soon.
Click to expand...
He posted on the old (is it still alive?) Yahoo DS message board shortly after his amputations. He received urgent and good advice from the vets there, including a lot of experienced people - and disappeared again. He didn't want to do what he had to do, I think.
 
DianaCox said:
He posted on the old (is it still alive?) Yahoo DS message board shortly after his amputations. He received urgent and good advice from the vets there, including a lot of experienced people - and disappeared again. He didn't want to do what he had to do, I think.
Click to expand...

now that makes sense, just too many inconsistencies
 
@DianaCox Is Frankenheap still 'practicing' out there somewhere? I wonder if he lost his license. I know he had some problems. But I have not heard of him in quite a while.
 

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