To whom it may concern:
I apologize in advance for the extremely long email you've received. The information contained herein is, in my view, essential for a full and robust understanding of the issue I am bringing to your attention today.
I am newer to the Portland Metro area. My spouse and I moved here in October 2022 for his work. Initially, we had our care through Kaiser Permanente. Owing to job change, our health insurance coverage changed on November 1, 2023. In the process, I needed to establish a new primary care relationship and Tuality is in-network. I made an appointment for the earliest possible time, which was Tuesday, November 28 at 2:40PM at Tuality Internal Medicine - 368 SE 8th Ave, Suite 301, Hillsboro, OR. My appointment was with C.O., PA. C asked me to address him as C and I will refer to him as such throughout this email out of respect for his stated presence in address.
Most recently, my spouse and I were living in St. Paul, Minnesota. I had healthcare providers of all manner of degree - medical doctors, physician's assistances, nurse practitioners, and medical residents. I was always treated with care, dignity, and respect. At every single visit, I felt listened to, heard, acknowledged, and as though my provider was working with me to develop a plan of care that would move me forward in my healthcare goals and were manageable for me personally. My experiences with C were none of these things.
My primary concerns in getting established with a provider right away were related to medication management of two health issues: PTSD for which I take a low dose SNRI and Hypertension for which I take a low dose calcium blocker. My most recent prescription had expired and I wanted to new scripts before I ran out of medication at home. C was asked the relevant questions regarding my history with the medication, side effects, and changes in efficacy. He then wrote me new scripts and sent them to the pharmacy of my choice. He performed routine checks (capillary refill, heart and lung sounds, etc.). C then asked me if there was anything I'd like to discuss.
"Yes," I replied. "I would like a referral to see a bariatric specialist."
"For weight loss surgery?" C asked.
"I'm open to the possibility of surgery, but my goal is not lose weight. I enjoy being active and following a soft tissue injury this summer, I've not been able to be active the way I like. My concern is longevity and quality of life - to have more vitality and be able to move my body in the ways that I enjoy. I know that weight loss will likely be an important means to achieving that goal, but it is not the goal itself."
"What else have you done to try to lose weight?" C asked me.
I then explained to him that I have a long history of weight-cycling. Some efforts have been less healthy than others, dating back to 2005 when I lived in New York. At that point I weighed approximately 365 lbs. This is my best guess based on body composition as home bathroom scales at that time topped out at 350 lbs and I 'errored' out the scale. I began to severely restrict my caloric intake. When I lost enough weight to move more comfortably, I took up running. I was eating a few hundred calories a day, most days of the week, and fasting 1-2 days per week. Eventually, I weighed in at 208 lbs and was officially "overweight" (rather than "obese") for the first time in my entire adult life. Perhaps unsurprisingly, this was not sustainable and I rebounded to 320 lbs. I weight cycled another three times in the next eleven years. By 2016, I came to a full understanding of the ways in which my weight cycling were neither helpful nor healthy and I gave up caring. My weight remained at 320 lbs and I have never been much heavier than that. I have never rebounded to, let alone beyond, my starting weight. I bought a bicyle in 2017 and found that I absolutely LOVE cycling.
During this same time, I began working with an extraordinary trauma therapist. My goals in life changed (from being thin and pretty to being healthy) and I began to thrive in other ways.
In early 2020, I was able to take a Mindful Eating course and began working with a dietitian (up to the limit my plan allowed which was 3 sessions owing to my lack of co-morbid conditions). With my dietitian, we determined my resting metabolic rate (RMR) [2,800 calories/day] using the BodyGem, which calculates RMR based on oxygen consumption and energy expenditure. For Valentine's Day, I purchased an indoor bicycle stand so that I could continue to ride comfortably during the brutally cold and snowy Minnesota winters. By early May, I was riding 23 miles outdoor with ease. An accident in late May (in which I sustained tears to my rotator cuff and labrum) was not able to keep me off of my bicylce for long. My spouse and I were bicycling 20+ miles every weekend and I was bicycling 14-23 miles 2-3 days a week as I commuted to and from work. By October, I had lost 80 lbs. I was now down to 240 lbs. I was also having other concerning side effects. My hair was falling out by the fistful, I was sustaining pressure injuries on my elbows from resting them on a table, and I had significant hormonal changes.
By the time winter arrived in 2020, I left the acute care setting where I had been working in favor of home-based hospice work. With the the necessity of driving, the change in weather, the shortening days, I could no longer ride my bike as avidly. I set up the bike trainer in my basement again and I could not force myself to ride inside again. My spouse and I continued to take walks regularly in spite of the cold and snow; I was fortunate to be able to walk 10,000+ steps per day in the climate controlled Mall of America 2-3 days a week. Still, my weight rebounded to 320 lbs.
Our move to the Pacific Northwest has been an extraodinary opportunity in terms of year-round outdoor activities. My spouse and I hike regularly. We bicycle in fair weather. We started slowly and worked our way up. By the end of summer 2023, we were hiking 6-8 miles 1-2 times a week and bicycling 45 miles every other weekend. My weight remained stable. I developed plantar fasciitis. I could not hike for two months. Bicycling was gentler on my foot, but still extremely painful at times. We made every effort to continue getting as much movement as possible.
To be clear, I didn't give C this much information. I explained my history of weight-cycling, in brief; my work with a therapist; my work with a dietitian; my Mindful Eating course; my activity level; and I shared with him what my diet consists of. My spouse and I eat scrambled eggs with a small amount of lean ham and cheddar cheese (2 eggs for him, 1 egg for me) or scrambled eggs with home-smoked salmon and chevre, and a small tangerine, for breakfast. I eat greek yogurt, fresh fruit, and a little granola for a mid-morning snack. I eat a couple ounces of arugula and a well drained can of sardines for lunch. In the afternoon, I might eat some hummus and tortilla chips for a snack. Dinner frequently consists of a 3x3" square of homemade lasagne (including homemade sauce) and a big salad using 2 tablespoons of homemade Caesar dressing (no croutons) or 5 ounces of lean meat (skinless chicken thighs, pork loin, or white fish) and a large serving of vegetables. I would have a serving of dessert (a homemade cookie or a scoop of ice cream) 4-6 days a week. I routinely weigh my portions and I began to track my caloric intake again in early November.
C's response to me was, "If nothing else worked for you, I don't see why you think surgery will work. I'd like to try you on a new medication instead."
I expressed my hesitations about medication. I asked if I would have to remain on medication for life to continue reaping the benefits. C answered, "There is no reason you shouldn't be able to go off of medication after you've reached your goals so long as you make the necessary lifestyle changes."
When I asked what changes C felt were necessary, he said, "You need to maintain a healthy diet and exercise."
I explained, again, to C what my diet and exercise regimen look like and he said, "You're doing everything right."
When I explained to C the history of hair loss and pressure ulcers, he said, "You probably just need to drink more water."
"I drink between 128 and 164 ounces of water a day. I'm not clear how much more water I can consume."
C responded, "You're doing everything right with your water intake."
To be clear, I rarely eat out. I do not eat fast food. I do not drink soda or other sugar sweetened beverages, though I do like plain seltzer on ocassion. I consume less than one standard alcoholic drink per week.
Against my stated preferences and with much cajoling from C, I agreed to try the medication.
The impact of the medication has been significant. As an appetite suppressant, it's very effective. I now eat less than half of my breakfast. Most days, I will take the remainder of my breakfast and one corn tortilla for lunch. Dinner consists of 2 ounces of lean meat and a half a serving of vegetables or a half piece of lasagne and a salad. I didn't have a bowel movement the entire first week I was on the medication - and I consider a daily bowel movement an essential factor to quality of life. I'm now supplementing with 30-40 grams of psyllium husk daily to produce one bowel movement a day. My average daily caloric intake is now between 900-1,100 calories - of which 120-160 calories are from the psyllium fiber. I am neither a dietitian nor a food scientist, but it seems many people do not count carbohydrates or calories from fiber and using that measure, my daily caloric intake is closer to 800-950.
I am exhausted. I am experiencing nausea all of the time. I have less energy, less stamina, and less motivation to move my body at all. I burp dozens of times after every single meal. Much of the time, I regurgitate food/fluids when I burp. When I raised these concerns with C at my follow-up appointment on Wednesday, December 27, his response to me was, "Have you lost weight?"
"Well, yes. I've lost approximately 12 lbs," I told him.
"Excellent. Then the medication is working," he told me.
"Again," I explained to him, "losing weight is not my goal. I want to more energy and vitality."
"Do you weigh yourself regularly?" C asked me.
"Yes. I weigh myself almost daily," I answered.
"And what was your starting weight and what do you weigh now?" C asked me.
"My starting weight in clinic was, if remember correctly, 324 (caveat - I remembered incorrectly; per records, my starting weight in clinic was 322). That was afternoon and I was fully clothed. At home, I weigh myself in the morning after voiding my bladder and while naked. In that context, my starting weight was 318 and my current weight is now 300 or 301."
"Excellent. So the medication is working. I'd like to increase your dose. Don't worry about the side effects. I'll prescribe Zofran for the nausea and if that doesn't work, let me know. It might not necessarily be related to the medication and if the Zofran doesn't work, we should rule out other causes. Also, have you tried eating smaller meals more often? What do your meals look like?"
I looked up my food log.
"I eat about half an egg, a quarter ounce of lean ham, and a quarter ounce of cheese for breakfast at 6:00am. I eat the other half of my egg, ham, and cheese on a corn tortilla around noon. Recently, because of the holiday, our dinners have been a bit richer. I had 2 ounces of a prime rib and four Brussels sprouts for dinner last night."
"Okay, so you're eating small portions. That's perfect. Keep doing what you're doing. I'll write that prescription for the dosage increase. Make an appointment in three months to check back in."
C also ordered labs, as appropriate, and the orders appeared in MyChart. It was in this context that I learned that there were multiple errors entered into my medical chart.
When I had my last Fasting Glucose Test, it was 2017. Because of a slight elevation, my physician ordered an HbA1c, noting that the high fasting glucose result could be indicative of pre-diabetes OR a result of stress. My HbA1c came back at 5.6. While this is just under the line for pre-diabetes, it was within the normal range. I was NOT pre-diabetic when I last had my fasting glucose checked more than six years ago.
Though I had regular annual exams between 2017 and 2022, this was not rechecked as no other health marker indicated it needed to be completed more frequently. In 2022, having just moved to the Portland Metro area, the physician resident I saw at Kaiser-Permanente when establishing care ordered an HbA1C. The result was 6.0. I began to prioritize movement and changed some of my eating habits (more fish for lunch vs leftovers) and I attended a "Managing Pre-Diabetes" health seminar. I began to prioritize movement in my work day (routinely adding long walks on my lunch and eating my lunch while driving between locations) and, as noted above, my spouse and I were able to be more active outdoors over the winter than when we lived in the Midwest. In May 2023, I asked my physician to re-check my HbA1c. The result was 5.9. Still pre-diabetic, but trending down.
In my chart, C added two new diagnoses: Diabetes Mellitus Type 2 and Impaired Fasting Glucose. When I asked him how he came to the determination that I had both an impaired fasting glucose and T2DM, seeing as he never ordered a fasting plasma glucose test and my two most recent HbA1c levels were nowhere near diabetic ranges and trending down, he did note that he'd made a mistake and updated my records to indicate Pre-Diabetes. I also asked several questions related to my diet and exercise regimen.
In each of my visits with C to date, he has stated that so long as I make "the necessary lifestyle changes," I should be able to stop taking the new medication and maintain my weight loss. When I again shared with C what my diet and exercise includes and asked what lifestyle changes he believes are necessary in my efforts to achieve my goals of greater vitality, quality of life, and longevity, C noted "I usually recommend healthy diet and increase in physical activity." I quite literally cannot conceive of any way I can improve my diet in healthy and sustainable ways beyond what I am already doing. I quite literally cannot conceive of having time in life to do anything apart from working full time and working out if I'm going to reasonably get more exercise than I was getting prior to my injury. He then offered to refer me to a dietitian to develop a plan for maintenance of caloric balance, noting that this is not his area of expertise.
I am frustrated. I am angry. More than angry, I am livid with the way I've been treated. I am deeply disturbed by the experiences I have had with C. C focused on his goal of decreasing my weight while ignoring my goal of increased vitality, manageable activity, and longevity. When I noted the profound extent to which the medication he prescribed is impacting my ability to engage in exercise and the nausea, regurgitation, weakness, lightheadedness with exercise, and exhaustion, he declared that were "nothing severe" and stated his intention to increase my dose. The extent to which these are impacting my quality of life is something I experience as quite severe and at direct odds with my health goals of more physical activity - in the safest possible way. The fact that I have lost weight was the clearest proof that the medication was working to achieve C's goals for my health - which frankly seems to be a matter of making me a less-fat fat person.
My goals have been ignored, brushed aside, or dismissed. I have been humiliated and degraded. I have been told to "make lifestyle changes" and when I explain what my lifestyle entails, I've been told that I'm doing the right things. When I have then pointed out that this has not been successful and I am concerned that the medication being prescribed would only work if I remained on it for the rest of my life (which could be several decades), I was told, "You shouldn't experience a weight rebound so long as you make the necessary lifestyle changes." When I then follow-up and once again explain exactly what my lifestyle entails and ask specifically what changes to make, I'm told, "healthy diet and increase in physical exercise." This circular conversation is absolutely mind-bobbling and infuriating.
I do not know what the root of this communication barrier is - and I have a number of theories that range from frank and explicit anti-fat bias, to a broken medical system that allots fifteen minutes for face-to-face medical appointments, to working in a system that treats individual human beings as population-level trends while plugging their data into a statistical model and prescribing a one-size-fits-all plan of care that delivers anything but actual care. What I do know is that regardless of the root cause, how C presents himself to and treated me as a patient is completely unacceptable and I very sincerely hope that he's provided appropriate feedback and coaching so he does not treat any other patient with such callous disregard in the future.
Thank you so much for your time.
Sincerely,
Me
