Managing You: Why You Must Keep a Personal Health Record

Pop Quiz:

  1. Who is your primary care provider?
  2. When was your Tdap vaccination? Tetanus? Most recent influenza shot?
  3. Did you have a physical this year? What were the results?
  4. What are the medications you’re currently taking, and what are the dosages?

If you did poorly, don’t beat yourself up – many Americans are unaware of how to keep track of their health. But think about it: do you keep your motor vehicle documents like registration and proof of insurance in a handy folder in your car, along with records of all the service work you’ve had done on it? Do you store your tax returns and important personal documents in a safe, convenient place at home? If you do, then why aren’t you doing the same about what is arguably the most important thing you possess – your body? Shouldn’t you be showing the same diligence, if not more, for your health and wellness?

Allow me to introduce the concept of the Personal Health Record.  Simply put, the PHR is a detailed library that contains all of the most up-to-date information from your electronic medical record (EMR) – the database held by your doctors and insurance providers for the purpose of medical coding and billing – and your own notes on your health. In contrast to the EMR, your PHR is yours to control, modify, and manipulate as you see fit. It can be used through a platform of your choice: an online database, an app for your phone, or – as in my case – a hard copy in a three ring binder with color-coded tabs.

If you’re familiar with pedometers, FitBit, or apps for your phone like CouchTo5k and Fooducate, you already understand a little of how a PHR works. Most Americans, in fact, have used a fitness or weight loss program or app at some point in their lives. You’ve probably written down how much exercise you did, or tracked your caloric intake for a diet, at some point in your life. Your PHR, however, is more complete, integrating the information your health care team already has into a more comprehensive picture of your biological profile. A good PHR can include your fitness routine and calories consumed, but also keeps track of much more. 

The benefit of maintaining a PHR is, of course, knowledge – and, thank you Sir Francis Bacon – ipsa scientia potestas est: knowledge is power. Here’s how one paper, in the Journal of American Medical Informatics, put it:

Personal health record systems are more than just static repositories for patient data; they combine data, knowledge, and software tools, which help patients to become active participants in their own care.

In other words, PHRs give you a variety of additional tools to manipulate data. For example, if you track you blood pressure daily, you can use you PHR to determine your average BP over the course of a week. You can form a data set for how many calories you’ve burned while exercising. Raw data is just the beginning; with the magic of mathematics, your basic data allows software programs to draw conclusions about your health, and advise changes when needed. (You can also manipulate the data yourself, if you’re so inclined.) The article continues:

One of the most important PHR benefits is greater patient access to a wide array of credible health information, data, and knowledge. Patients can leverage that access to improve their health and manage their diseases. Such information can be highly customized to make PHRs more useful. Patients with chronic illnesses will be able to track their diseases in conjunction with their providers, promoting earlier interventions when they encounter a deviation or problem. (The complete article is available here. The National Center for Biotechnology Information is a tremendous, free scientific resource by the way.)

This a critical conclusion: tracking your health improves your general well-being. If you’ve got up to date information, you can – as is described above – note quickly any deviations from the norm and get medical assistance faster. Keeping on top of your weight, having blood tests results on your white blood cell count, A1C, iron levels and much more, recording changes in your weight or sleep patterns, and so on allows you to make smarter decisions. Being conscious of your health on a daily basis gives you an advantage, too, when time is crucial. Often, it’s small symptoms that are overlooked or – worse – ignored that signal a serious health issue.  

And they’re not joking about speed and ease of communication, either. I get my office visit summaries, diagnostic images, test results, and more through MyChartPlus, and last time I had blood work done I had all of the lab results before my doctor did. I can also make, cancel, and reschedule appointments online or with my phone. My doctor can send me letters or messages through it, too.

So what should you include in your PHR, and how should you manage it? Well, the format is a matter of personal taste; you may prefer a desktop software program – as simple as a Word or Excel sheet or a more complete program created specifically as a PHR like Microsoft’s HealthVault (n.b., Microsoft ended support for the Healthvault for the Windows phone literally today, as this article was published. The online and desktop service seems to still be available). Web-based applications like MyMinerva or Dossia Health Management System give you the piece of mind of knowing your data is backed up offline – though, conversely, it comes with the risk of security breaches that could put your private medical information into someone else’s hands. For smartphone users, the MyMedical and OnPatient PHR apps are both great, but shop around to find the one you prefer. And, as I mentioned before, you can also keep your records in a well-organized binder – a bit old fashioned, I suppose, but easy to access and reference when you need it. I print my information from my EMR or get copies at the doctor’s office, and file them away for use when needed.  

As to what information to include, I am of the mind that more is better. I include a daily record of all my exercise, I take my vitals and record them each morning, and I even have flow sheets to monitor my diet. Full disclosure, however: I am of the “Type A” personality, to the degree that I color coordinate my pens to my scrubs, and my scrubs to my lunchbox.

Here’s a saner list of what you want to include, at a minimum, in your PHR: 

  1. Your prescriptions, the dosages of each, and the frequency of administration
  2. Your immunizations
  3. Your physicals, including the list of current health concerns/chronic illnesses and doctor’s report on your overall health
  4. Lab results – (blood work, biopsies) and imaging results – ultrasounds, X-rays, and the like.
  5. Your insurance information.
  6. Reports from any specialists you’ve seen, histories of any procedures (surgeries) performed
  7. Emergency contact information
  8. Your allergies to any medications and/or latex
  9. A copy of your living will, advanced directive, or any legal documentation of this sort (including DNRs)
  10. A journal with anything you’ve noticed or consider worth reporting (what are called Observations of Daily Living or ODLs). This can include simple reports such as, “I’ve had a dull pain in my side for the past three days,” or “I’ve been feeling nauseous a lot lately.”
  11. A brief record of your emotional/cognitive health and what you do to maintain it. This isn’t often recommended, but I think it’s important. Doing things you enjoy – and that reduce anxiety – are vital to good health. Making a record encourages you to remember to take care of your emotional being, too – through meditation, creative arts, gardening, a hobby, or whatever it is that gives you joy. 
  12. Your fitness routine and at least a sketch of your diet. 

It may seem daunting, but I ask you again to consider: aren’t you worth it? Don’t you deserve at least as much attention as your car? At least some experts think most of us just don’t care, and that’s why PHRs have yet to come into widespread use. Maybe they’re right. I prefer to think, however, that most people would embrace PHRs once they see how easy they are to use and the benefits they offer. Being “in charge” of your health is empowering. There’s a sense of pride in ownership when we are diligent monitors and protectors of this fleshy vehicle that carries us through life. Maintaining a PHR gives you a complete picture of your wellness, and with that knowledge you’re better prepared to make smarter choices for continued good health. 

One final note – if you need some information to get your PHR started, remember that the Health Insurance Portability and Accountability Act gives you the right to inspect and receive copies of all of your medical records, electronic or otherwise, upon request. Ask them what software program they use to manage your EMR, and how you can get a login ID and password to access all of your health information. If your PCP doesn’t offer an online EMR, ask that they do so (it’s 2016, come on).  

Note: This article also appears on medium.com.

Happy 100: The Post-Game Analysis on Bariatric Weight Loss

Salutations, friends!

I love it when the universe aligns for a fortuitous coincidence, and how’s this for kismet: yesterday was the six-month anniversary of my sleeve gastrectomy, and when I stepped on the scale in the morning it read: “168.0” One hundred pounds lighter than I was about a year ago.

I’ve been carefully monitoring my progress throughout the procedure, all the way back to the first pre-op appointment in 2014. The total process from an initial seminar at Hartford Hospital to the surgery proper on January 19 took roughly one and a half years. That time was spent in close consultation with a dietitian, pulmonologist, and cardiologist in addition to my surgeon, the rock-star and pioneer in his field, Dr. Pavlos Papasavas. A psychiatric examination, sleep study, and support group attendance were also part of the preparation.

Considering the significance of a centenary drop in body weight (and, incidentally, a drop in BMI from 39.0 to 24.5), I think a recapitulation on the journey is needed. If you’re thinking about surgical weight loss, or you’ve had it, or you’re just curious, you’ll enjoy my look back at what I’ve lost and gained from having my stomach removed.

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January 19, 2016 – three hours after surgery. 

The replay on…the value of surgical weight loss.

The question I’m most often asked is, “Why have surgery?” Some folks want to know if I tried it “the old fashioned way” first (I did, many times) and others wonder why I took the risk of going under the knife for a serious elective procedure. In medicine, everything is about odds. Treatment for an illness, whether with drugs or surgery, is always a risk. The health care team calculates the dangers of treatment against the risk of not treating an illness at all. I approached my surgery with the same mathematical rationale: was the risk of complications and even death from surgery greater or smaller than the long-term damage of morbid obesity? I already had a very high BMI, hypertension, hyperlipidemia, sleep apnea, and a pre-diabetic fasting blood sugar (my A1C was 6.5). The research showed that each of these symptoms related to weight would be dramatically reduced or eliminated by surgery. Overall, life expectancy for someone who has a gastric bypass or sleeve is increased by 85% compared to obese persons who do not have surgery.

So it was, logically speaking, a no-brainer. Of course I was nervous ahead of surgery – who wouldn’t be? But after the procedure, the payoff became immediately evident. Within a few months, my hypertension, hyperlipidemia, and blood sugar levels were resolved. Sleep apnea was gone by May, and I felt incredible – more energetic, focused, and grateful than I had been in decades. At six months out, my doctors concur: I’m in outstanding health.

The next step: At my last consultation with the surgery team, in May, we set a weight goal of 170-175lbs. I’ve exceeded that, so technically my weight loss target has been met. I still continue to lose weight, however, at a considerable more modest rate of one to two pounds biweekly. I would be happy to settle in at around 155-160, providing a comfortable buffer for any weight gain after the so-called “honeymoon” phase is over. But with all of my health issues resolved, any surplus weight loss is really just icing on the low-carb, sugar-free cake.

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In 2010 (258 lbs) and again in 2016 (185 lbs). 

The replay on…diet and exercise.

Of course, surgery is the catalyst for a weight-loss journey, not the panacea for obesity. I used the initial “boost” of losing 40 pounds in the first month to exercise constantly. Sticking rigidly to the nutrition guidelines prescribed by dietitian have also made this process a success. I have a “rule of five” to which I adhere fanatically; these five foods are strictly verboten, never to be eaten: rice, pasta, bread, refined sugars, and ANY kind of corn or potato-based fried or baked snacks (chips and their like).

For proteins, I stick to non-fat dairy (Greek yogurt), 1-2 ounces of nuts per day, fish, beans, and lean meats. About 70% of my daily diet is vegetables, greens like kale and spinach, and low-glycemic load fruits like cherries, raspberries, and strawberries. Never before in my life have I eaten so many salads, nor did I ever think I could relish a good salad as the old me did a fat pork chop or bowl of Chee-tos. River and I counted the number of salad dressings (no more than 5 grams of fat per two tablespoons) in our fridge the other day, and there were nine!

I am obligated to take in a minimum of 64 ounces of water per day, and since I can’t “chug” 32 ounces of that in a go, I need to sip constantly throughout the day. I still take my morning coffee – with skim milk and Stevia. Soda is a never, ever – I have not had a single drop since the start of this year, and never will again.

Eating out has been a bit of a challenge. Not only is it hard to ascertain what you’re eating when someone else prepares it, but I’m budget-minded and dislike paying too much for a meal I can’t possibly finish. I get creative and order side dishes, salads of course, or just plan to take my meal home to finish over a few days. On the bright side, I have a much greater appreciation for the quality of food. Like many of us, I used to go for quantity – line me up at the buffet so I can pack in as much crap as possible. Now, I can afford to eat small portions of excellent-quality foods.

The next step: Despite the protests of my dietitian, I’m considering going pescetarian (a vegetarian who still consumes fish). The goal for someone post-surgery is 70 grams a day, and I’ve calculated out how to take in that amount through beans, dairy, nuts, and fish. It isn’t very difficult at all. Relying more on these foods for protein would cut out some of the very unhealthy and hard to avoid saturated fats in meat. In terms of fluids, I grew tired of plain water about a month ago and have been adding those dreadful aspartame/sucralose based sweeteners to it. Not only are the sweeteners problematic for health, but the dyes are nasty as well. I’m challenging myself to return to plain water, or sweeten my drinks with fruit.

In terms of fitness, I have a lot of sagging skin around my lower abdominal region, and I need to strengthen and tone my core. Time to use my gym membership and left those weights.

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One week ago, at Mount Misery.

The replay on…emotional and spiritual benefits.

You’ve already read about my renewed sense of gratitude and joy. To some extent, I’m sure, these are products of improved biology, but it’s also how different I perceive myself…and how others treat me. I must say, I have not been complemented on my physical appearance this much since, well, ever. It comes so constantly that I’ve become quite unsure of how to respond, anymore. It’s flattering and I am always humbled. My dating options have improved; apparently I’m now in a different “league.” Even strangers seem warmer and more appreciative of me. It’s bizarre, too, being one of the lightest people in certain places, or realizing in a room of people who’ve never met me before that I’m not “fat” to them. A guy at work even asked if I’d been on a wrestling team before…it blew my mind.

Next step: Interestingly, the surgery has completely eliminated my libido (and I didn’t have much of one to begin with). I don’t know if this is a result of the surgery itself or just a facet of my new perspective on life or understanding of myself. I now struggle with dating, even though I have more options in that arena. Do I really want a partner? Have I become a sapiosexual or even an asexual person, now? Has my sexual identity changed? I’m still trying mostly because I feel obligated to not “give up” on romantic life, and the superficial perks (a readily available babysitter, second income, someone to go out with for fun) are compelling. But most of the time, I’m rather frustrated and even feel some antipathy for becoming romantically attached to someone. Maybe I just haven’t given it enough time.

I also want to keep up with mindfulness practices like yoga and meditation. As work in nursing is very stressing and frantic, I need to cultivate more pose and calm in my life.

So there you have it! I’d really love to hear from YOU, readers, so do feel free to post in the comments below.

Stay positive!

‘One Month Thin’: The Skinny On Surgical Weight Loss

A look at the month following surgical weight loss – and how losing weight improves your life in just about every way.

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Though I’ve shared little about the subject on this blog, I’ve suffered from obesity for the better part of my adult life. I was always fit and trim as a child, and through most of my twenties maintained a healthy weight. It was around the age of 26 that I began to gain weight as a result of a poor diet and infrequence exercise. Hiking – a subject that I have covered here in detail – has been a great help, but like most Americans I’ve never been able to lose weight and keep it off.

By winter of 2014, I reached 260lbs, the highest I’ve ever weighed. Crucially, I’d developed two conditions co-morbid with obesity (as part of a general health status called “metabolic syndrome“): hypertension and high blood sugar. (My triglycerides were also high.) I knew that the combination of hypertension caused by obesity and diabetes was a deadly one; my life expectancy was surely lower than the statistical average for men in America.

I would look at my daughter and wonder if I’d see her graduate from college, get married, or have children of her own. River is clever and sufficiently literate about health and nutrition to know that obesity is a form of sickness. She would say that she wanted me to live to ninety, and I would flinch knowing that my weight and the ailments caused by it made that improbable.

And so it was that I decided to investigate surgical weight loss. The process itself, from an initial orientation to over a year of medical tests, visits with a dietitian, preoperative physicals, even a psychological evaluation, is a fascinating one. It’s something about which I will probably write in the future.

But for now, I’d like to discuss the immediate aftermath of my surgery – a vertical sleeve gastrectomy – and both the expected and unexpected outcomes I’ve experienced.

My surgery was on January 19. For 12 days prior, I had been on a highly restrictive diet meant to shrink my stomach and liver. My grandmother dropped me off at Hartford Hospital, and after checking in with Admissions, I was brought to the OR waiting area. A parade of patient care techs and nursing staff came through to check vitals and keep me occupied with paperwork. The anesthesiologist walked me through the risks of general anesthesia, and had me sign off on a consent form. Finally, my doctor arrived to look over all the pre-op work and see how I was feeling. This would be my final opportunity to back out of the procedure if I so desired.

I knew there were risks. Any surgery comes with them, and if you’re overweight, have diabetes, or high blood pressure, the danger increases. A sleeve gastrectomy also comes with a 0.3% chance of death, usually caused by a rupture in the stomach suture causing sepsis. But I knew this surgery was the right choice. I thought of River and the life that would be mine after all the hard work was done, and with that image I had the courage to say, “Let’s do this.”

The procedure was done in about an hour. Weight loss surgery in all forms is now done laparoscopically, a tremendous improvement on the invasive techniques required a few decades ago. (A laparoscope is a device with a camera. It’s inserted into the stomach, and the surgeon makes small incisions in the abdomen in order to complete the procedure while being able to see with laparoscope.)

I had a two day hospital stay following surgery. The staff on the OR floor – Bliss 8 at Hartford Hospital – were simply amazing. Under their diligent care, I was tested for fluid tolerances (tea, chicken broth, sugar-free popsicles, and water were all I could ingest) and monitored for complications. The ability to stand, walk the floor, pass gas, and urinate were the additional benchmarks required for discharge. Before leaving, I was given a detailed seven-week diet plan and a pile of prescription meds.

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Here’s what I’ve noticed in the month since I left the hospital.

First, my blood pressure began dropping. In fact, it began to drop during the pre-op, low-carb diet. Within two days of discharge, I was getting normal blood pressure readings (<120 / <80). Often, my pressure was too low due to hypovolemia (lack of sufficient blood volume) caused by insufficient hydration. Dehydration is the primary health concern after surgery, and my post-op diet called for 64 ounces of water per day. By three weeks after surgery, my diagnosis of hypertension was rescinded and I was taken off my hypertension medication. A huge win for my health.

For two weeks after surgery, liquids were all I could consume. I mainly drank protein shakes, water, and broths. I tried a number of brands – Atkins, Muscle Milk, Isopure – but to be honest, they all taste like chalk eventually. It may sound like a brutal diet, but another immediate effect of the gastrectomy (and this might seem obvious) is that I don’t feel hungry. At all. There are times, of course, when low blood sugar triggers the notion that I need to eat in my brain, but I never feel the ravenous pangs I felt before. Two weeks on liquids was a cinch.

During the two week liquid diet, I began monitoring my glucose levels. A week before surgery, my fasting blood sugar was 136, and my A1C (a measure of average glucose levels) was 6.5. Following surgery, my blood sugar immediately began dropping – now, my fasting blood sugar is around 70-80, and post-meal it’s 95-105. Perfectly normal.

At week three, I was allowed to add mushy foods – non-fat yogurt, oatmeal, low-fat ricotta cheese, and anything that could be pureed – to my diet. I experimented with pureed concoctions like ground turkey, gravy, and spices (thumbs up), or pureed hard-boiled eggs with paprika and lite mayonnaise (thumbs very much down). In addition to 64 ounces of water, I was to consume 70-90 grams of protein each day. The protein would help with healing and help my body get used to a low- to no-carbohydrate diet. So, the mantra provided by my dietitian was “Always choose protein first.” For the short term, that meant putting vegetables and fruits aside, and eschewing carbs almost entirely.

I began to notice a few other changes in the third and fourth weeks. For example, I had a lot more energy than I ever had before. Whereas once I would only feel rested with 9-10 hours of sleep, now I feel great after 7 or 8. Of course, I was also exercising nearly every day – I’ve hiked more in the past month than in the entire autumn of 2015 – and my resting metabolism was improving – evidenced by a resting heart rate of 65-75 bpm.

I was saving a lot of money, too. I found that halving my estimate of how much food I could eat wasn’t enough; I had to reduce it to a quarter or eighth of the portion that “seemed” right in my mind. (After surgery, the size of my stomach was about equal to a banana, or to a 4oz total capacity.) So suddenly a pound of lean beef lasts a month. A can of broth lasts a week. A batch of chili using the standard recipe needs to be frozen because I can never eat all of it before it goes bad. There was, unfortunately, considerable waste as I adjusted to this new way of eating. I used to shop like a bargain hunter, you know the mindset, the most food for the least price. Now, I look for the smallest servings and the highest quality ingredients. I can afford to get better quality meats and superior organic staples. I’ve completely eliminated processed sugars from my shopping list. I’m also saving money in unexpected ways – toilet paper, for example. (I won’t be too candid here, but suffice it to say that when you eat less, you need the bathroom less, too.) I don’t need to buy antacids – heartburn is a thing of the past.

At week two, I also began taking supplements. Because of the limited capacity of my stomach, I will need to take a daily multiple, B12, calcium, iron, and vitamin D supplements every day for the rest of my life. Getting used to this routine was a challenge, so I began tracking my supplements, diet, exercise, and vitals in a daily log. It’s been tremendously useful for staying on top of my fluid and protein goals, too.

A few cognitive changes related to the weight loss took me by surprise. First of all, my tastes changed. Prior to surgery, I despised mushrooms, but now find myself liking them. Rotisserie chicken or roast chicken used to be a favorite indulgence of mine; now I get nauseous at the thought of it. Fast foods, once a bane to my health and a craving I couldn’t shake, hold no appeal. Mostly I find myself jonesing for salads, fish, and – occasionally – Cheez-Its. But without the hunger pangs, I breeze right by the chips and snacks aisle at the store and think nothing of it.

I found my anxiety decreased and my mood improved. Feeling healthier and more fit brought me an inner peace and joy like I have not felt in my life before.  Prior to surgery, I set up a meditation area in my living room, complete with an indoor greenhouse and small waterfall. These, of course, helped me develop mindfulness practices that aid in keeping my grateful and happy in my life, but the diet and exercise – both tied to surgery – have made it easier still.

So, the big question: has it been worth it so far? I have to give a completely unqualified “yes.” Though I’m 47 pounds lighter, the real victory is the remission of the hypertension and diabetes, two serious health issues that I have successfully treated with the surgery. Prior to making a final decision, I went to a handful of friends who’ve also had weight loss surgery (mostly gastric bypass) in order to ask them if they were happy they had it done. The answer, from all of them, was nearly always the same: “It was best decision I ever made.”

I can now add my voice to their number, echoing their joy for the new life surgical weight loss – and their own hard work – gave them.