Elle's Personal Appeal Letter
This request contains three sections. First, my letter will outline my physical condition and critical need for this surgery. This will be followed by my research project outlining the medical research conducted on the biliopancreatic bypass surgery with DS, along with the problems with the Roux-N-Y and Vertical Banded Gastrectomy. Last, you will find an appendix of research papers and abstracts supporting that research.
I have included a picture of myself with this letter. As you can see I fall into the "super obese" category (BMI>50). The last time I was weighed, I was right at 370 pounds which would translate to a BMI of over 69. I have been unable to weigh since last June because my physician does not have a scale that will weigh me, so I am perhaps even just a bit larger than that. I have also included here a picture of my paternal Grandmother who topped 500 pounds. My mother is a very large woman, as was her deceased sister who died in her 50's due to co-morbid conditions of her obesity. Three of my four paternal aunts are very large women.
Over the last three years my health has been very difficult. I have Super Obesity, Type II Diabetes, Hypertension, Fibromyalgia, Joint problems (both knees have extensive damage), Asthma, Sleep Apnea (on CPAP), and Pickwickian syndrome. I am on Oxygen for any kind of ambulation, as just walking less than 30 feet, my O2 level dropped to 77. I use a cane to walk a few feet; use a wheelchair if I need to walk more than about 50 feet. I have stress incontinence, sores under my abdomen, and extensive pitting edema. Over the last two years I have had recurrent infections that were very difficult to manage without repeated visits to the doctors, injectible antibiotics, etc.
By profession I am a Clinical Social Worker with a Master's in Social Work, a Bachelor's in Sociology, and additionally am a Licensed Practical Nurse (state of Idaho). Until two years ago, I was a very competent therapist when I had to go on short-term disability because of my oxygen deprivation. I quit my job and relocated to "sea level" at the recommendation of my Pulmonologist; however, I have been unable to return to work because of continuous health problems.
Two physicians have told me that I will be dead by the time that I am 50. I am almost 47. I talked to my physician this last Friday and told him that I was "scared to death." His response was, "you should be." Dr. ____ is the third doctor to tell me that my health is so difficult that I will not live long. My belief is that Dr. _____ and the other doctors are correct: I will die within a very few short years if not sooner if I do not do something in the very near future to alter this.
I understand that you authorized me to go to UCLA for a consult for a possible Roux-en-Y procedure. However, I believe that if you were to review the research literature that you would find that this surgery is not the right surgery for me.
MacLean (Ann Surg 2000) found that there was a failure rate of 43% in the super-obese patient. According to Bloomston (Obes Surg 1997) only 26% of super obese patients returned to within 50% of their ideal body weight. Smith (Obes Surg 1995) found after a seven-year review of 3,855 patients who had the Roux-en-Y, the average weight loss was 35.4 kg (76 pounds).
Although research of the Roux-en-Y seems to indicate it may be a reasonably acceptable surgical solution for the morbidly obese individual, it is NOT for the super obese individual like me. With a BMI of at least 69, even if I was to fall into the mere half of super obese clients who are considered successful with the Roux-en-Y - if I were to lose 100 pounds with this surgery (much above the average), what I can look forward to is to reduce my BMI to over 51… which would still leave me classified in the super obese category, and still at risk for a very early death.
There are other reasons that I consider the Roux-en-Y to be an inferior surgery; including the predilection to stomal ulcers, reflux-bile gastritis, the recurrent "dumping syndrome," food intolerance, bowel obstructions, stoma occlusion, etc. However, the primary reason I want the biliopancreatic bypass surgery is I believe that this may be my only hope of living.
Sjostrom (Endocrine 2000) recommends that "for the heaviest, biliopancreatic diversion or biliopancreatic diversion with duodenal switch" should be considered to achieve adequate weight loss. Baltasar (Obes Surg 2001) reported that for his BP/DS patients that the percentage of "excess weight loss (%EWL)" was 81.4% at 5 years when 97% of the patients had a %EWL > 50%." Sapala (Obes Surg 1991) stated that they had converted 38 patients who had failed the Roux-en-Y to a biliopancreatic diversion which eliminated problems with reflux bile gastritis and… after 2 years has shown that (all of these previously "failed" RNY's) had "significant and sustained weight loss in all patients." Marceau (Surg Clin North Am 2001) found that the "Biliopancreatic diversion is the only valuable surgical approach for changing intestinal absorption. It is efficient in producing appropriate permanent weight loss…our current preference is for the duodenal switch type." In 1995, Marceau (Obes Surg) found that their clients had a "mean weight loss of 84% of initial excess weight loss at 16 months. Gagner (Sages 2001: Laparoscopic Bariatric Surgery) found that their biliopancreatic diversion w/DS has resulted in 60% of EBW loss for the super obese at only the 12 month preliminary results.
In addition to this, in Health Net's handbook "Guide to Evidence-Based Medicine" under the Obesity Section, Health Net states that the "Biliopancreatic bypass is "designed for the extremely obese individuals (more than 225 percent above ideal body weight), this procedure bypasses a large part of the intestine with a concomitant resection of the excluded part of the stomach." (page 181) On Page 189, Health Net states:
E. The following gastric restrictive or bypass procedures are recognized as the standard of care for surgical treatment of morbid obesity:
a. Biliopancreatic diversion
b. Roux-en-Y gastric bypass
c. Vertical banded gastroplasty (VBGP)
The biliopancreatic surgery is listed again as the first selection for surgery… with the RNY listed second. I am more than 3 times my ideal body weight!
I am very aware that this medical group contracts with UCLA; however, at this point in time, all UCLA only performs the Roux-en-Y procedure. I have gone to great lengths to try to obtain literature regarding both the Roux-en-Y and Biliopancreatic Bypass procedures, and find that the Roux-en-Y is absolutely the wrong surgery for me.
There are several doctors in the State of California who perform the Biliopancreatic Bypass procedure, including Dr. Gary Anthone at the University of Southern California. However, I have also found that Dr. Ara Keshishian performs this procedure. He is located in Delano, California, just outside of the Bakersfield area. Dr. Keshishian is a provider with Health Net HMO. I understand that at this time your office does not contract with Dr. Keshishian; however, I have talked both to his office, as well as to the Delano Regional Medical Center. Both say that they will be happy to negotiate a fee with my medical group.
I understand that the Biliopancreatic Bypass procedure is more expensive than the Roux-en-Y. I would be happy to pay for the difference it would cost your Medical Group for the surgery. My 70-year-old mother is going to mortgage her house to do so. I cannot believe after you review the literature that I have presented to you here that you could possibly consider that the Roux-en-Y is the appropriate procedure for me personally as an individual who falls well into the "super obese" category. Thus, the only thing that I could consider which would inhibit your authorizing this surgery is the extra cost to your practice. This can be so easily resolved with an agreement that you will pay for the amount the Roux-en-Y would cost, while I pay for the balance. I have been assured by Sandy Bakich with Delano Regional Medical Center that this is quite frequently done.
My Primary Care Physician believes this to be the correct surgery for me. Health Net's "Clinical Practice Guidelines" dictate that the "Biliopancreatic Bypass" [is] designed for the extremely obese individuals (more than 225 percent above ideal body weight)." I am 300% above my ideal body weight!
I thank you in advance for your very careful study of this and I look forward to your decision because I am still hoping to have a future that will last for decades not months or not at best for a few years.
Sincerely,