My wife passed away on June 13, 2004, eight months after undergoing weight loss surgery (or WLS.) There are many forms this can take. The exact operation she selected is described below.
I wrote the following as a form of therapy and also to help others who are struggling with weight loss and see surgery as a 'quick fix' or a final solution. I don't believe it is. I posted this on the bulletin board (chat room) serving those who were considering or had just undergone WLS. I hoped it helped those who were still just considering it.
This is very long but if you are thinking about bariatric surgery in some form, and there are many different operations out there, please read this and heed my message: You are making a life and death decision, and the odds are not good. My wife thought she would not live ten more years, due to her weight, without some drastic course of action. Instead, she lived eight months after the operation and died at the age of only 52.
To begin at the end, the way I understand her anatomy when she died, Sherry basically starved to death. Oh, there were complications that brought her life functions to a halt, such as massive infections ("sepsis syndrome,") which was from a perforated ulcer of the intestine, and a pulmonary embolism. But her health was so bad by the end of May '04 that very little could have been done to save her. Such metabolic indicators as her albumin level were way below normal. Her electrolytes were chronically low. Each time she was admitted to the hospital they found her potassium level too low and would immediately start IVs just for that. Right before Memorial Day I was told a feeding tube would be a good idea and I made an appointment to see a surgeon about that, but Sherry didn't make it to go see him. As I say, by then it was probably too late anyway.
After the WLS, there were two reasons Sherry took in so little nutrition. One was her constant nausea. She just didn't feel like eating or drinking anything most of the time. I could get her to eat a little if I coaxed her. Usually she said her stomach hurt and she declined food. (I'll get back to that later.) She retched a half dozen times a day. It was a form of torture.
Even when she took in some nourishment, very little was actually absorbed. She underwent emergency surgery the day before she died and the doctor came out to inform me she had a very short "common limb" (where the two lengths of the intestines come together before the large intestine begins.) The ER surgeon, Dr. Matin, said the length should have been 75-100 cm but it was only 20 cm. I remember Sherry told me 20 cm was the designed length of her common limb, as if it was done that way on purpose. Since then I've researched this subject and found that Dr. Matin was correct. For example, the diagram at http://www.duodenalswitch.com/Procedure/procedure.html shows the "common loop" as 75-100 cm. I have no idea why Sherry's common limb was shorter than usual.
To go back to the beginning, Sherry's weight loss surgery (WLS) was in late October. At almost 300 lbs and with some serious co-morbidities (hypothyroidism, hyperglycemia, and fatty liver disease), she had been studying the different WLS options quite intensely for six months or so. She settled on the Duodenal Switch (D/S) procedure as being best for her and then announced her decision to her family. She also selected a surgeon -- one in Brazil.
I regret very much not being more involved in her decision, but she had made up her mind and I could either go along or resist her decision. I acquiesced too easily. (My first mistake, individually. My rationale: She was adamant that this was her last chance at a viable, active life. She feared she would not live long without the surgery.) So I supported her and she made plans accordingly. That was our first mistake as a couple. I should have been better informed and better prepared. She seemed to know what she was doing and I was more or less going along.
The next mistake was also one of omission. I didn't go to Brazil with her. She said I didn't have to, it would have cost more money than we had available, and she was sure it would be OK if I didn't go. I admit to being lukewarm about going at first, since I didn't see where I would help that much, as I thought she was going to be under direct medical care the whole time she was there. I waited too long before deciding I had better go, but by then it was too late to obtain a passport and to arrange travel. I spoke to her every day after the surgery, as I remember. I was chagrined she was released from the hospital only a couple of days following surgery, so she was then going to spend more than a week in her hotel room basically all alone. I realized only then I really should have gone so that her medical care in Brazil would have lasted as long as possible. Instead she decided to come back too early, our third mistake.
She returned to the US in pain but in satisfactory condition, or so we thought. She began a bout of vomiting that was frequent and debilitating over a course of months. I mean she threw up six to eight times a day, every day, shortly after she returned (Oct 31st) until Feb 4th. She often said, pathetically, she was so tired of vomiting and just wanted it to stop. It was a "dry heave" type of regurgitation and she brought up mostly white frothy mucus matter. This was significant in hindsight.
The effect on her health was slow and unnerving. We had to take her to the hospital for dehydration about once a month. Each time a different doctor treated her and released her. We insisted something was seriously wrong but I was told by each one, "Well, we don't know what they did in Brazil, and you know, once you have an operation like that, there are side effects." Or some variation, over and over again. This would be the fourth mistake: Letting doctors decide and dictate her treatment when they did not have any idea what the surgery entailed.
Sherry asked the physician who had been her usual doctor to follow-up her treatment after she returned from Brazil. He saw her once, he made no effort to help her very much, and so we never saw him again. From then on we were at the mercy of the physicians assigned to her whenever she entered the ER. I suppose this is the normal way of treating people now: Your family physician (or "primary care physician" PCP) will only see you in his/her office. If you go to the hospital then an internal specialist is assigned to you from a pool of doctors and he/she manages your care while you are an in-patient. These two types of doctors do not talk to each other, evidently. I was very skeptical about this process because every time we would get a new doctor we'd have to explain Sherry's past history all over again. Sherry would be treated for her immediate symptoms and sent home. That is, this occurred repeatedly until she collapsed in her hospital room on Jan 27th and the internal specialist (who ironically was about to release her) then realized something was indeed very wrong. His name was Dr. Thang Le and we were to see him several more times in our local hospital (Baylor Medical Center at Irving.) By the way, we went to Baylor University Medical Center ("Big Baylor" in downtown Dallas) several times for specialized care, but neither facility was able to do much after all.
On January 30th Sherry was given erythromycin and she stopped vomiting on Feb 4th. I suspected she had a form of bronchitis and was dry-heaving mucus from her chest. That would explain the white frothy substance vomitus. I thought the nausea had nothing to do with the WLS, but I was the only one to draw that conclusion. When I mentioned this to every doctor thereafter I was rebuffed because "Bronchitis wouldn't last that long (three months)" and "Don't you think someone would have noticed the chest sounds of bronchitis?" and "Erythromycin has many other uses including motility so that is what improved her condition." My question was: If she had not had the WLS then would every doctor have looked for a cause of the vomiting rather than pointing to the surgery each time? Our fifth mistake, then, was not insisting each doctor examine and treat the whole person rather than letting his/her focus be on the WLS as a cause for everything.
Sherry had every known test on her alimentary canal including many MRIs, sonograms, X-rays and even an endoscope. They were all negative for any cause of the vomiting. Yet the doctors more or less blamed the D/S surgery.
Let me go back to the point when Dr. Le at Baylor-Irving was about to discharge Sherry at the end of January but instead she collapsed to the floor: He was attempting to dispel our fears about her inability to walk on January 27th. He ran tests on her spine and cranium and declared that she should be able to walk, that there was no organic reason for her not to. He even brought in a psychiatrist to check for "conversion disorder" which means they were looking for a psychosomatic cause for not walking. On February 1st she was near comatose as she could not see, hear, speak, or lift her arms. She was numb from the sternum down. Eventually, several days later she could make out blurry shapes, could talk again, and could feed herself. On Feb 7th the consulting neurologist declared the diagnosis was Wernicke's syndrome, which is caused by a vitamin deficiency. I have since heard this is not uncommon in WLS patients. Sherry's nutrition levels were dropping steadily and by then it was probably too late to reverse her surgery. I would have done so if a doctor, any doctor, said it should be done. They each said, "Well, you might consider it." What the hell did that mean? It just let them off the hook as far as liability goes, as near as I could tell.
I did make an appointment with the ER surgeon who admitted Sherry in early January, with the first available office hours being Jan 17th. When I visited him, alone because Sherry was an inpatient at a different hospital by then, he counseled me at length about the type of WLS she had undergone and other procedures that were performed by various surgeons. He said one option would be to see if the surgery could be reversed and he referred me to the Bariatric Surgery Clinic of Baylor University Hospital. I discussed this option with Sherry and, God help me, she convinced me not to pursue it. Frankly, she was not interested in undergoing another surgery, especially if it would end up taking her right back where she started from, with the same intestinal layout as before. She viewed that as a failure and wanted to keep going forward rather than back.
That was the sixth and final mistake and, if we had realized it at the time and took a different course, it probably was the last chance to save her life. Looking back now, though, I will have to convince myself that the outcome was set no matter what we did. Reversing the surgery would have delayed the inevitable. She was doomed and I don't think I could have saved her.
These next sections are very personal and give some insight into Sherry's background from her youth to the past 30 years. If it proves too tedious by all means skip down to "Lessons Learned." That was the whole point of the exercise anyway!
Going back to see how Sherry arrived at such a life-and-death decision as to whether to have WLS, we have to start early in her life: Basically, she had always been overweight. She was teased as a child and a teenager about her weight. She shared those stories with me and I truly empathized. She pretty much grew up obese. After three full-term pregnancies, her metabolism, or whatever, changed so much that she had a difficult time losing the post-partum weight. This is probably common among women, I don't know, but because it was such a chronic problem before she was pregnant there must have been other reasons for her obesity rather than just laying it off on that. I'll say one thing here, she definitely lost a lot of weight when she went through basic military training entering the Air Force. I met her while we were at the same AF base just as she was being discharged in Jan 1974. (We were married in July of that year at the ripe old ages of 23 and 22. She died one month before our 30th anniversary.) Obviously, it was a combination of exercise and limited food -- they barely had time to eat regular meals and snacking was forbidden. She was in the best physical shape for the first year of her military service. When I met her two years later she weighed 135 lbs at 5 ft 2 inches. Early in our relationship I would joke about her weight and I found out how sensitive she was about it. She was still hurting from the teasing she endured growing up so I quickly stopped talking about it at all.
I'll say here for the record Sherry had psychological problems which we dealt with in our own way, and that was to avoid talking about them. I loved her and I thought it would be enough for us to overcome her shortcomings, as well as mine for that matter, for goodness sakes. We communicated so well otherwise and became devoted to each other.
The real problem with her weight began in 1975 when I went to Korea for a year as an Air Force first lieutenant. Sherry had difficulties coping on her own after three months, so she moved in with my parents. She was on a Weight Watchers program for a little while and other programs later, but gained weight anyway during that year, weighing about 200 lbs. in Jan 1977. We went to our next base, in Europe, and she became pregnant for the first time. She had a difficult pregnancy, had "morning sickness" most of the time, and then we lost the baby six days after delivery. It devastated her and she probably never got over that. Sherry wanted to be a mother so badly. She always worked outside the home but she would have been a full-time mother if we could have swung it. Eventually, we had two pretty great children. A son in 1979 and a daughter in 1982. We did a lot as a family, I have to say, especially during our two-year adventure to Turkey (in 1990-1992 when the kids were 11 and 8) which brought us together the most. Not having TV and depending on each other for everything and basically hanging out together all of the time does make a family closer.
Back to her death and the crushing guilt I felt for not being able to save Sherry: Three things loomed late in her demise that might keep me from feeling unrelenting remorse for the rest of my life. After a pulmonary embolism dropped her blood pressure into the 80's on Wednesday June 9th, X-rays of her legs showed her femoral arteries seriously clogged with plaque. This meant she had been a prime candidate for a heart attack or stroke already for some time. The reality was just as she feared: She was not going to live long in that body and she was right to take radical means to change it. But on the other hand being so bed-ridden for six months also took its toll -- the risk of embolism (a clot going into the heart, brain or lungs) had risen severely.
Secondly, and this was telling at the end, the co-morbidities would defeat her. Hypothyroidism, hyperglycemia, and fatty liver disease probably contributed to her very poor nutrition.
Third, Dr. Matin on June 10th said her stomach was producing too much acid and that is what caused the ulcer in her jejunum that perforated and served to kill her. I suspect the extra acid was causing her stomach to be upset all of the time and resulted in the constant nausea. How that could have been prevented might have had an easy answer. Dr. Matin said the condition would have required treatment by Protonix and antacids for the rest of her life. This might have been a detriment to her health for the rest of her life in any case.
The Bottom line: We did the best we could and came up short. We trusted too many people with too much of her health and her life. I'm very bitter about the medical health industry. Each person we met (doctor, nurse, support staff) was professional and caring, yet somehow Sherry did not get the care that would save her life, so I feel that we were let down. On the other hand, she and I made mistakes in retrospect, though to what extent any decision we could have made differently would have changed the outcome is impossible to say now. There's no way to know for sure what would have mattered, and how long it would have taken for her health to fail. In order to be able to go on I have to believe now and forever that the end would have been the same.
Lessons learned: Here are the lessons from our experience that I'd like to pass on to those contemplating WLS and specifically the D/S procedure:
+ Talk over all of the options with your family/spouse/significant other.
+ Someone be with the patient through the whole process. (My wife seemed to be the only one who was unaccompanied in Brazil.)
+ Before the surgery, review the procedure with your family physician (PCP.) Ensure that the PCP is in support the procedure and will take appropriate measures if there are negative effects thereof.
+ Any lingering effects (after two weeks or so) need to be addressed by your physician (PCP) at once.
+ Adequate nutrition is paramount. Since the objective is reducing the absorption of food it makes sense that there is the possibility that TOO LITTLE will be absorbed. How this could be determined is the tough part. Testing the albumen level seemed to be one indication.
+ Be active. Exercise should be part of any weight loss program. Start with simple easy exercises around the house on a frequent basis and build up to more strenuous outdoor activities.
Finally, the last thing is, have you really exhausted all other options? Let me preach for a minute, if I may be so audacious. Obviously, anyone who takes the time to read all of this is serious about losing weight and has been through a lot already. But my two cents is this, and it bears repeating for the umpteenth time: The only way to lose weight is for the calories coming in to be less than the calories expended by the body. This has to mean fewer calories coming in, whether it's restricted by following Atkins, Weight Watchers, Jenny Craig, etc. or by having WLS, and then it means more exercise to expend more calories.
Sherry's case was particularly sad because she had been active when she was younger, then gradually succumbed to her weight, and it held her back. Arthritis in her knees made simple walking very painful. I would go out to walk the dogs in the evening and ask her to come each time. She declined because it was so painful for her. How pitiful. We owned a myriad of exercise equipment over the past 30 years, but none of it was used that much.
Sherry would try different diets, perhaps every one of the ones out there, but didn't lose much. I'm one of the lucky ones because I wanted to lose 20 lbs from my mid-section. I was at 208 and I'm 6 ft 1 inch. I've been called 'skinny' by some but I felt heavy. I asked my doctor in June 2003 if I could try Atkins. He said I should set a target weight of about 190 and to go ahead with low carb diet. Over the next three months I cut out all carbs from my meals and lost 25 lbs. I was down to 183 at the lowest point and Sherry was seriously concerned for my health as I lost too much weight. Six years later I'm still around that level, hovering at 190, though I do need to gain back some of the lost muscle. But that's all about me and who wants to hear about that?
I felt so sorry for Sherry when I lost the 25 lbs. She saw my weight loss and felt even worse. She was adamant that Atkins was not for her because of the fatty liver disease and high cholesterol. She was an active, vibrant person inside and trapped in a body that betrayed her. Certainly, she didn't deserve to live or to die like that. I loved her and wanted her around for a longer time than we had together. She made her own choices in life and I respected that, but her decision to get WLS is one I would have rather overridden somehow. On the other hand, if she had died of some other cause in a year or two then I would have blamed myself for not letting her try the WLS option.
And that is the dilemma facing each of those who are in the same situation: To take this very risky course or to play it safe and keep going with diets and exercise. As those options are taken away I can see how people will reach out for this option. Just be sure it is really the last one, because there is no going back and it might very well be THE last. It might be fatal.
There are risks with everything but WLS is a risk I hope people will not take unnecessarily or unwisely.
And with that counsel, I wish the reader good health and a long, happy life.
JDE
Subscribe to:
Post Comments (Atom)
No comments:
Post a Comment