2legsshort

I would like to share my story, but not to scare anyone, its to see what can happen with the wrong surgeon. I'm not going to do it tonight because it is long and don't want to get into it tonight. Also not sure anyone would like to hear another horror story which is still going on 18 years later.

In my case this being a BPD-DS I had my last endoscopy and he was really surprised at how bad my esophagus was. He said I had acid reflux all the way to my neck. I am now on 80mg of Omeprazol and 1g of Sucralfate at bedtime. He said I had ulcers in my esophagus. Trying to get them healed. For me a revision involves changing where the digestive juices come into my small intestine I have a 75cm common channel I think it is called it can be changed to have more like a 150cm common channel. so there would be more intestine to absorb nutrition.

One thing I will say about bariatric surgeons today is it still the same thing, a money game for them. They won't even talk to me because I am on Medicare. I even wrote to one in this state that does this surgery supposedly one of the better ones. His assistant got back to me and said pretty much, you don't have cash, you don't have good insurance (Medicare) see ya. When I did have good insurance they were falling over each other trying to get my business and cut me up.

Good luck. Wish I could have that done but it's too late for anything, but it can't really be done. I am not in good enough condition for any doc to want to perform surgery on me. I scared them when I even went in for an endoscopy and they put me out with propafol. I was only out for 15 min but my BP which was only at 130/38 when they started went down so low they weren't really amused by that. Scared the heck out of them but that is due to my heart. Will be thinking of you. I'm sure everything will work out fine. It really sucks when you can't stop losing and can't gain, thats where I am at now.

I just wanted all of you to know what can happen with bad info about aftercare with this surgery. I am lucky to be alive and I am still having problems which I will get into. One thing tho my labs are all pretty good now. At the time of this happening the doc that took care of me and nursed me back to health said it was the worst case of malnutrition he had ever seen. He still uses my case as an example of what can happen with this surgery if you don't follow what the docs tell you. Dr.Heap didn't inform us of these things and we both have suffered because of it. I am still having problems with things that are undoubtedly connected with letting myself get so far gone. I'm hoping I can make it another year or two but only one knows that for sure..

Thought I would make it an illustrated story. This is all caused because I was low on albumin and had to have an infusion of it.

This is in the Nursing Home post amputation.

This is when I first woke up.

These are my feet pre amputation.

Wanted to see if this works. These are pics of me. The first 2 are when I was in the coma.

Episode 2: As I was saying, they put me in a medically induced coma on the respirator. The first night they told my wife not to expect me to make it throught the night. I did and a 3 weeks they decided that I was strong enough to bring me out of it. I was still in ICU at Holy Family in Spokane, WA. When they brought me out the first thing I remember is seeing my wife and her telling me I had been out for 3 weeks. I didn't believe her, but during that time I had dreams that things were happening to me, some very strange things that seemed totally real to me. I told my wife not to sell the house but if she did open up a rehab center in out new one. She looked at me like I was crazy, none of the things I had dreamed were real. I accused her of all sorts of stuff which hurt her a lot. It's really strange what all those drugs and other things that were going on affect you. I wasn't myself at all. She would come to see me everyday and a couple days after I woke up she noticed some bruises on my feet, she asked them jokingly, have you been beating up on him or what. They hadn't noticed these and when she mentioned it to them, they took a look. Well all hell broke loose in ICU. We had no idea what was going on but they were trying all kinds of things to get the blood circulating in my legs to no avail. During this time a doctor had visited me on his rounds and he was a bariatric surgeon. He took over my care, at what point I'm not sure but he more or less brought me around after others had given up. This was Dr. Lee Trotter. He told me at about 3 days awake that they were going to have to amputate both legs below the knee. During my out time my heart had gone down to a 15% ejection fraction, which basically means it wasn't working. It was pumping blood to my legs but not back out. As the days went by my feet started getting blackish purple and developed big sores that the skin and meat just dissolved and big holes appeared. They were dead and were rotting away. He told me they were going to take the right one first then the left. That weekend a nurse got her wires crossed and thought I was supposed to be taken off all IV fluids and morphine pump, going to oral pain meds. I didn't get it and my wife got hold of the doctor and he came in on a Sunday and he was pissed. He read them up one side and down the other. The put me back on fluids and morphine and surgery was scheduled for the next morning. 7am I was on my way to the OR, they decided that it needed to be done immediately, I was able to get a hold of my wife and she barely got there before I went to surgery. I came out legless both at exactly the same point about 8 or 9" below the knee. I was stable and was in the hospital about 3 more days and the insurance company was putting the pressure on to get me out of the hospital and in a nursing facility. That happened about 4 days later. Nursing homes are not where you want to be. My wife would come in and they hadn't emptied my urine bottle, they would bring my food and if I was asleep would push it to one side of the room where I couldn't reach it. When I would push the button if you were lucky someone would come in at about 30 minutes. After a week of this my wife decided I would be better off at home and during this time had gone thru insurance and set me up with a ramp to get me up the stairs a hospital bed all the stuff needed for transfers and bathroom needs, a power chair and manual wheelchair. During this time my weight had dropped to 114 and looked like a skeleton with skin. As my grandaughter described it a holocaust survivor. As soon as I got home I started gaining weight. I was being seen by Dr.Trotter once a week and a visiting nurse 3 times a week. My weight kept increasing and I started to feel better. After a few appointments with Hanger Prosthetics they were ready to fit me with my first prosthetics. These were very basic but did the job. To their surprise I was, after practicing for what seemed like months I was able to walk on them with my walker. This was shortly after Christmas 2007. They decide to get me into a better set of prosthetics, which were much better and low and behold I was able to walk, first with the walker then crutches, then canes. I kept getting better and better and my weight went up. At about 6 months after I started using prosthetics I was feeling pretty good, weight had increased to around 155 and I started to pursue going back to work with the railroad. They were going to try to get me back as the first bilateral amputee train engineer. I thought this was great. I took all their tests and passed, then someone in the upper echelon decided I would be too much of a risk on that job. They offered me a job teaching about the operation of air brakes but it really didn't sound to me like what I wanted to do, plus the exempt position didn't have as good of benefits after retirement as a different scheduled position. So they offered me a job called Lead Driver, which was basically a desk job with some driving involved which at this time I could do pretty well, as long as it was an automatic transmission. So in the fall of 2008 I took that job, I had retained an attorney to sue the hospital for not stopping the infusion after the first episode. He thought based on what I had told him I had a great case. Well it took him 3 weeks to get my hospital records and by the time he did they had gone thru them all and put them in a computer format. There was no mention of the first episode and they blamed it all on my condition at the time. He said there was no way I could sue them for malpractice based on what the records now showed. The whole thing was my fault. According to them they did everything possible. He said that because this was such a big corporation Providence Medical, and they had 20 attorneys working on this and had covered things up, I didn't stand a chance. I took the job as lead driver and did it well. People were expecting me to be a cripple and I could get around as well as any of the others that also worked the same job on different shifts. During the next almost 2 years I worked my job and when I reached 60 years old I was eligible for normal retirement, the requirments were 60 years old with at least 30 years service, I had 36. Since retirement paid about the same as the ob which was considerably less then what I was making as an engineer, I decided to do it. I still felt great my weight was stable at 175, which was the perfect weight for me. We decided we would get a motorhome and spend the winters in AZ and summers here. We got a motorhome in 2010. I went to see my doctor for a routine physical and everything looked good. They had been doing yearly echos on me because I had a heart murmur since birth. That summer after the physical my doc told me the cardiologist wanted to see me after the echo, I figured to big deal. So I went in and he told me I needed to have my aortic valve replaced which scared the hell out of me. I himmed and hawed about it and decided I would have it done in August of 2012. It was supposed to be a surgery that many had had that was routine for them, but it was open heart surgery, I figured I would feel better after recovery and we could continue with our plans. WRONG. After the surgery the doctor told me I had the most calcified heart structure he had ever seen. The only part that was supposed to be calcified was the valve. He said that he was able to get 13 sutures in but it hadn't made a good seat and had a paravalvular leak. I did recover but didn't feel really good. I have no idea if the BPD-DS had anything to do with the calcification but he said It was not a common condition. I definately had a substantial leak and my BP hovered around 140/50. Post surgery I began to lose some weight but it wasn't bad. I was down to about 155, I didn't feel great. That winter I had gotten back to somewhat normal and was able to get around pretty good. I went to get the mail one day and stepped on some ice and slipped and fell hard, broke my femur and shoulder both on the right side. As I was laying there in the driveway I was thinking great this is just what I need. It took me about 6 months in the chair again till I was able to start walking again. It was slow going, I was no longer allowed on the snow and ice per wife. Well I will stop this episode here for now will continue later. Pat

Episode 2: As I was saying, they put me in a medically induced coma on the respirator. The first night they told my wife not to expect me to make it throught the night. I did and a 3 weeks they decided that I was strong enough to bring me out of it. I was still in ICU at Holy Family in Spokane, WA. When they brought me out the first thing I remember is seeing my wife and her telling me I had been out for 3 weeks. I didn't believe her, but during that time I had dreams that things were happening to me, some very strange things that seemed totally real to me. I told my wife not to sell the house but if she did open up a rehab center in out new one. She looked at me like I was crazy, none of the things I had dreamed were real. I accused her of all sorts of stuff which hurt her a lot. It's really strange what all those drugs and other things that were going on affect you. I wasn't myself at all. She would come to see me everyday and a couple days after I woke up she noticed some bruises on my feet, she asked them jokingly, have you been beating up on him or what. They hadn't noticed these and when she mentioned it to them, they took a look. Well all hell broke loose in ICU. We had no idea what was going on but they were trying all kinds of things to get the blood circulating in my legs to no avail. During this time a doctor had visited me on his rounds and he was a bariatric surgeon. He took over my care, at what point I'm not sure but he more or less brought me around after others had given up. This was Dr. Lee Trotter. He told me at about 3 days awake that they were going to have to amputate both legs below the knee. During my out time my heart had gone down to a 15% ejection fraction, which basically means it wasn't working. It was pumping blood to my legs but not back out. As the days went by my feet started getting blackish purple and developed big sores that the skin and meat just dissolved and big holes appeared. They were dead and were rotting away. He told me they were going to take the right one first then the left. That weekend a nurse got her wires crossed and thought I was supposed to be taken off all IV fluids and morphine pump, going to oral pain meds. I didn't get it and my wife got hold of the doctor and he came in on a Sunday and he was pissed. He read them up one side and down the other. The put me back on fluids and morphine and surgery was scheduled for the next morning. 7am I was on my way to the OR, they decided that it needed to be done immediately, I was able to get a hold of my wife and she barely got there before I went to surgery. I came out legless both at exactly the same point about 8 or 9" below the knee. I was stable and was in the hospital about 3 more days and the insurance company was putting the pressure on to get me out of the hospital and in a nursing facility. That happened about 4 days later. Nursing homes are not where you want to be. My wife would come in and they hadn't emptied my urine bottle, they would bring my food and if I was asleep would push it to one side of the room where I couldn't reach it. When I would push the button if you were lucky someone would come in at about 30 minutes. After a week of this my wife decided I would be better off at home and during this time had gone thru insurance and set me up with a ramp to get me up the stairs a hospital bed all the stuff needed for transfers and bathroom needs, a power chair and manual wheelchair. During this time my weight had dropped to 114 and looked like a skeleton with skin. As my grandaughter described it a holocaust survivor. As soon as I got home I started gaining weight. I was being seen by Dr.Trotter once a week and a visiting nurse 3 times a week. My weight kept increasing and I started to feel better. After a few appointments with Hanger Prosthetics they were ready to fit me with my first prosthetics. These were very basic but did the job. To their surprise I was, after practicing for what seemed like months I was able to walk on them with my walker. This was shortly after Christmas 2007. They decide to get me into a better set of prosthetics, which were much better and low and behold I was able to walk, first with the walker then crutches, then canes. I kept getting better and better and my weight went up. At about 6 months after I started using prosthetics I was feeling pretty good, weight had increased to around 155 and I started to pursue going back to work with the railroad. They were going to try to get me back as the first bilateral amputee train engineer. I thought this was great. I took all their tests and passed, then someone in the upper echelon decided I would be too much of a risk on that job. They offered me a job teaching about the operation of air brakes but it really didn't sound to me like what I wanted to do, plus the exempt position didn't have as good of benefits after retirement as a different scheduled position. So they offered me a job called Lead Driver, which was basically a desk job with some driving involved which at this time I could do pretty well, as long as it was an automatic transmission. So in the fall of 2008 I took that job, I had retained an attorney to sue the hospital for not stopping the infusion after the first episode. He thought based on what I had told him I had a great case. Well it took him 3 weeks to get my hospital records and by the time he did they had gone thru them all and put them in a computer format. There was no mention of the first episode and they blamed it all on my condition at the time. He said there was no way I could sue them for malpractice based on what the records now showed. The whole thing was my fault. According to them they did everything possible. He said that because this was such a big corporation Providence Medical, and they had 20 attorneys working on this and had covered things up, I didn't stand a chance. I took the job as lead driver and did it well. People were expecting me to be a cripple and I could get around as well as any of the others that also worked the same job on different shifts. During the next almost 2 years I worked my job and when I reached 60 years old I was eligible for normal retirement, the requirments were 60 years old with at least 30 years service, I had 36. Since retirement paid about the same as the ob which was considerably less then what I was making as an engineer, I decided to do it. I still felt great my weight was stable at 175, which was the perfect weight for me. We decided we would get a motorhome and spend the winters in AZ and summers here. We got a motorhome in 2010. I went to see my doctor for a routine physical and everything looked good. They had been doing yearly echos on me because I had a heart murmur since birth. That summer after the physical my doc told me the cardiologist wanted to see me after the echo, I figured to big deal. So I went in and he told me I needed to have my aortic valve replaced which scared the hell out of me. I himmed and hawed about it and decided I would have it done in August of 2012. It was supposed to be a surgery that many had had that was routine for them, but it was open heart surgery, I figured I would feel better after recovery and we could continue with our plans. WRONG. After the surgery the doctor told me I had the most calcified heart structure he had ever seen. The only part that was supposed to be calcified was the valve. He said that he was able to get 13 sutures in but it hadn't made a good seat and had a paravalvular leak. I did recover but didn't feel really good. I have no idea if the BPD-DS had anything to do with the calcification but he said It was not a common condition. I definately had a substantial leak and my BP hovered around 140/50. Post surgery I began to lose some weight but it wasn't bad. I was down to about 155, I didn't feel great. That winter I had gotten back to somewhat normal and was able to get around pretty good. I went to get the mail one day and stepped on some ice and slipped and fell hard, broke my femur and shoulder both on the right side. As I was laying there in the driveway I was thinking great this is just what I need. It took me about 6 months in the chair again till I was able to start walking again. It was slow going, I was no longer allowed on the snow and ice per wife. Well I will stop this episode here for now will continue later. Pat

OK let me start with a warning. My experience is not the norm for this surgery and it is a long story so I will do it in sections. Also some background. It actually started in the late 80's or early 90's don't really remember. Bariatric surgery was really in its infancy. I was in my late 40's early 50's. Part 1: The first surgery I had was to have my stomach stapled. That worked to a point, I lost about 80lbs. I was getting so depressed at never being able to eat over about 2 shot glasses of food, After about 10 years of this I just wanted to be able to eat. I knew that this surgery was completely reversible so in about 98 or so I had it reversed. I was able to eat again and loved it but started gaining weight. I was around 190 then. My weight just kept going up. At about 275 I heard about a surgery at that time called a BPD-DS which very few doctors did but there was one about 150 miles from us. My wife was also quite overweight. We thought about it for around a year or so. In 99 we decided we would both get this if insurance would cover it. To our surprise they would so we joined the wait. The doctor Adrian Heap had been doing this for quite some time and felt comfortable with him. Dr. Heap told us that all we would have to do post surgery was take a multiple vitamin and we could eat anything we wanted that didn't bother us and we would lose weight. Sounded like a miracle. The internet was really new and there was very little info on this procedure. It just sounded too good to be true. Our turn came up in around 2000, mine was first. At the time this guy was doing about 3 of these a week. I was a little leary when it came to the night before and the only clean out we had to do was to drink 2 bottles of MOM and stay at a hotel that he had previously made arrangement with for all his patients. So early the next morning I went in and by that afternoon it had been done. I spent about a month recuperating and was able to return to work on the railroad. My wife was 6 months after mine. Everything went along just fine the first couple of years, or at least I thought it was. I was eating everything I wanted to and take my multiple vitamin. The weight was just melting off. People at work started noticing I was looking really bad, pale getting thin and I just shrugged it off. I continued to lose weight. I started not feeling very well at around the 6 year point but not so bad that I was worried. I hadn't seen Dr.Heap in a few years, he was still doing the surgery but had come up with and unapproved version of the operation by then he called the mini BPD-DS. I read some horror stories about it. I started getting worried in early 07. I was down to about 150 and thought I was fine but by then my PCP didn't like the way I was looking and did a big battery of labs. He found I was dangerously low on albumin and several other things but the albumin was the worst, it was at 1.8. In the summer of 07 he had me admitted to the hospital for an infusion of albumin. It was supposed to be just overnite. They started the infusion and part way into the first bag of it I had a reaction, anaphylaxis. I came out of it and they continued the infusion, first mistake. The second reaction was worse, they couldn't get me to start breathing again normally. They rushed me to ICU. They put the tube in and all I remember is that first breath of air. The put me in a medically induced coma and on the respirator. I'll stop here for now. It starts getting pretty dicey after this.