Sickle Cell Activist looks to disseminate White House PMI by forming Minority Coalition

On February 25, 2016 I proudly took part of the White House Precision Medicine Initiative (PMI) Summit which took place at The White House in Washington DC. For me, this felt like a long-time coming, as I’ve been very passionate about this initiative ever since President Obama first announced it in his 2015 State of the Union address. I noticed almost immediately how desperately our nation needs such a new found precise way of thinking when it came to research opportuties in health care. I’ve seen it with my own eyes through my advocacy work with my illness, Sickle Cell Disease (SCD). I’m currently 32 years of age, my mother Cheryl Cannon, who has been a strong advocate for SCD in New York State, tells me that there’s really only been one new treatment for SCD in that well over thirty year time period. Of course there are several layers of reason why this is (most of which I will not get into) but in order for us to make a change, we as patients, i’m sorry PARTNERS in healthcare, we need to take a more proactive rather than reactive approach in addressing our care. Thanks to my mentor Dominique Friend, I’ve learned that this may require being at the table with the decision and policy makers, and even at the highest level of government. With my somewhat newfound mindset I understood the need for more proactive participation in underserved and underrepresented minority communities.

Let’s go back a few months…on September 3rd 2015 we were invited to a precision medicine briefing. Now, this was my first time being invited to the White House so I was super excited. Sounds crazy but I even drove through the wee hours of the night, since I had to work the day before (I do have a full-time job ya know). Got in the Maryland area around 4am or so, slept for about two hours and it was off to Washington DC. It was at this briefing where we were able to express our concerns as patients living with a chronic illness, particularly sickle cell disease, about how there’s little to no treatment for our illness and how there seems to be a great lack of general knowledge throughout the healthcare community on the topic of our illness. Why are some individuals impacted so severely while others seem to have more of a milder impact? The more we learned about Precision Medicine the more we realized that this initiative could really help to answer these questions. Thanks to my fellow sickle cell patent advocate Sabah Imani, and her mother Vonda Morris, for raising these concerns that day.

This really ignited the flame in my heart to really motivate me to stick with the PMI.  With our patient led approach, we felt the timing couldn’t be more perfect to construct a large scale cohort consisting of leaders of both the public and private sectors in the field of healthcare.  In November we began to form the Minority Coalition for Precision Medicine (MCPM); to mitigate/eliminate health disparities of minorities by expanding the awareness and use of “Precision Medicine” to increase personal health and reduce individual and government expenses in providing crucial health care. We held a community briefing on precision medicine in Baltimore MD with the help of Dr. Jo Handelsman of the Office of Science and Technology Policy out of The White House. Dr. Handelsman, or Jo (as she so graciously lets me call her), expressed such a passion for precision medicine as she explained t’s concept with such precise level of details (no pun intended). She also had such a willingness to collaborate with our newly formed group, she seemed just as excited as I was. It was a beautiful thing to see leaders within the faith-based community, such as Rev. Dr. Alfred C D Vaughn, learning directly from an incredible leader in government like Dr. Handelsman. We knew this was only the beginning of our work in spreading the importance of this revolutionary project.

With our strengthened relationship with Dr. Handelsman we were introduce to others who were leading the way in precision medicine. Dr. Jack Gilbert, an incredible Microbial Ecologist at Argonne National Laboratory and Associate Professor at the University of Chicago, was one of our first introductions. Just talking to this man on the phone made me feel 10X smarter than I was. I was so intrigued to learn more that I took half the day of from work to drive nearly three hours away, in the snow (which was weird, it was like October at the time) to Cornell University in Ithaca NY. A place where I felt extremely out of place. I mean these students were incredibly smart on some next level type stuff. It was a great pleasure to be there and Jack treated me as I were already his friend and partner, which made the trip worth while. He informed me on a lot about the process of stool collection sampling. Something we were going to have to do in our collaboration together in our future project. Which brings me to our second collaborator in the project, The BioCollective; a bio-collection company leading the way in microbiome research led by Founder Martha Carlin. After Googling Martha’s story i knew I just had to meet her. So, we arranged a coffee meeting in NYC. We instantly connected as we both exchanged our stories. I truly felt her spirit as she was a very compassionate and spiritually led person. I’m sure she felt my enthusiasm too as i literally barfed almost my entire life story upon her in our two-hour meeting over coffee. Martha shared with me her personal experiences which led her into her own hunger for more mibrobiome research. With these new introductions we knew we had a great collaborative to work with on our initial precision medicine initiative project, which is; to analyze the influence of Post-Traumatice Stress Disorder (PTSD) on human gut associated bacterial metabolism. The details of this project were included in the White House Fact Sheet which was released on February 25 https://www.whitehouse.gov/the-press-office/2016/02/25/fact-sheet-obama-administration-announces-key-actions-accelerate. We hope to conclude this very important study late 2016. If you’d like to learn more about how you could become a participant and further along the process of advancing new research on PTSD please visit http://healthconvergence.org or you can also follow our Twitter handle: @MC_PrecisionMed

My Sister’s 7 Year Kidney Transplant Anniversary

Last night my family got together to celebrate the seven year anniversary of my sister’s kidney transplant. We were lucky to be able to enjoy a beautiful dinner at the gorgeous restaurant L’Escale in Greenwich, Connecticut (http://lescalerestaurant.com/), and engage in uplifting and hopeful conversation with the persons we hold most dear.

On March 12th, 2009, my father donated one of his kidneys to my sister. People often refer to diabetes as a silent disease, and I believe that is very true. It is easy to feel empathy for someone who is losing their hair due to chemo treatments or someone where the physical side effects of their disease are obvious. Diabetes is an everyday all consuming disease where the person afflicted by it can never forget that it is there, yet if they do, the disease will offer terrible consequences. I believe that is what happened to my sister. She had periods of time where she did not want to acknowledge that something about her was different; she did not want to seem weak. Then diabetes showed its ugly side and her organs began to break down and she no longer had a choice but to face the problem head on. Regardless, she remained beautiful and people kept asking if she was really sick.

On March 12, 2009, two of the strongest people I knew (and still know) went under the knife. My father who has always been stoic yet gentle gave his kidney to my big sister who was my hero growing up, and still fills those shoes to this day. I honestly believe that every person realizes they are an adult at some point in their lives, and for me it did not happen until that day. I realized that I could be there for my family in a way that they had been there for me. I also realized that although I was the little sister and the youngest daughter, I was useful and a source of strength and energy during a stressful situation. I could speak to doctors on my mother’s behalf, I could reach out to friends and colleagues to update them regarding the situation, and as long as I kept it together I could be a source of strength to my father, my sister, and the rest of my family.

When Karin went to a boarding school made for persons on the national Swedish tennis team I cried every night, wrote her letters, and nagged my parents until I was allowed to go visit as a five year old bratty sister. When my father traveled extensively during the first gulf war and we lived in Paris, I would sleep next to his pajamas and pretend that he was safe at home. My father and my sister have always been very important to me, but they have also always been an “unknown.” My mother has always been my best friend and my rock; I know she will always be there for me in any capacity I need, and I will always be there for her. My other sister helped raise me, was my roommate, and we have unconditional love for each other, but I know she will always be there and that she is safe and healthy. This backstory may be irrelevant, but when I reflect on that day, March 12, all of those memories come back to me and I see myself and my family very clearly at different times during the past thirty+ years.

On March 12, 2009, my father donated his kidney to my sister. The procedure took longer than expected and my mother was in tears because she thought something had happened to my father. Apparently it was difficult to properly place him on the operating table, but removing the kidney was a smooth operation. The kidney was then transplanted into my sister’s small body, and both were brought out of anesthesia. We were elated that my father and my sister were ok. What happened next was complicated. While my father recovered rather quickly, my sister’s body did not accept the kidney immediately and she swelled to (almost) my weight due to water retention. But after that incredible procedure and long struggle, both are healthy and happy today.

I reflect back on the anniversary of my father’s kidney donation to my sister with hope and pride. I am proud that my family banded together and provided the kind of support that is so often lacking in enabling someone who is chronically ill to push through and fight a disease that can be so debilitating. I am hopeful that since this is the seventh anniversary of the kidney transplant surgery, that things will continue to move forward. Both of my heroes continue to remain healthy, and our family remains strong and united. But most importantly, I am both proud and hopeful, that since the surgery, my sister has founded Lyfebulb, an organization whose mission is to improve the lives of those living with chronic disease, now. I am also proud to say that due to my experience with my sister’s diabetes, including her kidney transplant seven years ago, I am inspired and excited to join her at Lyfebulb to support her and the organization achieve its mission. I cannot wait to see what we achieve.

I do hope that less kidney transplants will need to take place in the future, that fewer families will need to wait outside the operating room, and that medical advances will continue to be made. I am certain that we as a team and as a company can aid in achieving those goals. Until then, and despite of that, I celebrate the exchange of (or gift of) organs that two of my heroes made on March 12, 2009.

Doctors and Patients

When we are sick we are vulnerable and when we seek medical care we want comfort and strength being exuded from the people treating us. We want our doctors and nurses to be competent, efficient and make disease and problems go away. When we see a doctor, we do not want that doctor to be insecure but we want him or her to take charge, inform us and then decide what to do. Some patients want to be very included in the decision process and have accumulated much information prior to the visit and place demands on the doctor to show that he or she knows more. Other patients like the doctor to make decisions without much involvement from the patient. In all cases, there is a power dynamic between the two players, doctor and patient that must not be abused.

I have gone through much medical care during my 43 years on Earth. Between having type 1 diabetes since I was 16, having two transplants, requiring a pacemaker and having two spinal fusion procedures, I have seen many doctors, surgeons and nurses.  I am myself an MD and a PhD, specialized in diabetes and have spent a career analyzing innovative products in a number of other therapeutic areas, so I am very educated in medicine and also more critical than the average person since I do not want to waste my time on a doctor who is ill-prepared, poorly educated, weak or as importantly rude.

I am one of those patients who study the academic backgrounds and CVs of my potential doctors and when I meet them, I make sure they are aware of the newest developments in the space. I normally check references and Google their publications and research interests before I visit. This work is a prerequisite for me to even make an appointment and then in the first appointment, I interview them as much as they interview me about my medical history. Of course this thorough preparation can only be completed when one has time, and doesn’t work in acute situations nor do they work in hospital, when we are faced with the doctor on call. The point is that our health is the primary objective for all of us and we need to be even more discriminative with our doctors than we are with our finances, houses, our cars or schools for our children. We would not just buy a house without legal and other diligence, and we would not place our children in a school without knowing details about its teachers, facilities etc.

Because of the power situation we are facing each time we are sick or seeking help because of fear for our bodies, many of us do not place enough importance on how doctors treat us as human beings. A medical doctor has studied many years and a specialist has practiced his or her craft even longer, perfecting the practical aspects of medicine and the thinking required to diagnose, treat and in some cases cure. However, listening to the patient, and treating them with respect is often not part of the equation.

It stuns me that doctors are not treating their patients more like clients or customers. In no other field would we accept hours of waiting, derogatory comments, exam rooms with insufficient heating and meeting a person for the first time in your underwear!

One recent example of this happened today, when I went to see a new dermatologist, recommended by a dear friend and colleague. I did my usual diligence, but didn’t go as deep due to the area, dermatology, which to me is a combination of esthetics and medical, and I wanted to see for myself how this woman would deal with my situation of being on immune suppressants and thus making sure I do not have cancer. It would be a bonus if she also improved my skin tone and quality, and I placed lots of trust in my colleague who recommended her. I also got impressed with her address, and the fact that she is a relatively young woman who seems to have succeeded in the tough NYC market, where derms are a dime a dozen.

My appointment was for 1pm on a Friday and I rushed there from a meeting downtown, without having lunch. After 48 minutes of waiting, she finally showed up to see me – while I was sitting in the exam room, in my underwear and a paper robe. She smiled and said “ Hi Karin I am Dr H”. Why is she Dr H and I am Karin? As in Austin Powers: “Dr. Evil: It’s Dr. Evil, I didn’t spend six years in Evil Medical School to be called “mister,” thank you very much.”

My point to her was that I had been sitting for close to an hour with no message from her, in my paper robe, in a freezing room, waiting for her to come and see me. Why is it that she could not send a nurse or an assistant to let me know what was going on? Why did I have to undress before she knew that she was going to see me within minutes? Who actually meets a person for the first time with them in their underwear and they themselves fully dressed? Being a former diabetic and still vulnerable to low blood sugars, it is also hard for me skipping lunch, so this made it worse and for people seeing their doctor during working hours, it is frustrating to miss more time due to the doctor being late.

It all comes down to respecting the human being who is vulnerable and seeking help. In addition, medicine is a service industry, and in any business, one should treat the customer right.

It is no longer enough to be smart, confident and well-read, doctors need to start being polite, timely and good to their patients – not only out of decency, but low and behold, they may actually learn something from a happy patient – only the patient knows what their symptoms are and only patients can ensure compliance. Putting the patient in the center and providing services to them, including them in the process will improve the overall medical care and outcomes for medical doctors and of course, make it a little more pleasant to go for a visit!

2015 Favourite Five

Melbourne’s mercury is currently set at 39 degrees celsius and there are no shortage of reminders that 2016 is only hours away. 2015 has been a whirlwind of a year. Challenges, blood, sweat and tears littered the way of achieving milestones. Right now, I’m breathing a massive breath of relief for surviving another year and feeling super proud of all that I have accomplished in 2015. Here are my 2015 favourite five.

  1. Passing my PhD confirmation.
    • A huge milestone for me in my PhD journey – being “confirmed” means that my project is on track and supported by my university and school. The process included submitting a detailed research plan and presenting my project to a panel of internal and external researchers who have expertise in my research topic.
    • > Read about how I look after my mental health here.
  2. Travelling to Brussels, Vancouver and Adelaide for diabetes.
    • My first European and Canadian trip! I’ve never really considered myself bitten by the travel bug. Of course I want to see the world and I consider myself to be incredibly lucky to do this now while championing for diabetes whether it be through research or the IDF Young Leaders Programme.
    • > Read about my reflections from my Brussels trip here.
  3. CGM.
    • Diabetes technology is ever evolving but is still out of reach for many due to cost. The convenience and peace of mind of being able to see trends in my sugars is a luxury I am grateful for.
    • > Read about my experiences of wearing a sensor on my arm here.
  4. Continuing to keep active.
    • Exercise or going to the gym is something I go through phrases off. Keeping it a constant throughout the year has been a struggle. Funnily enough my Fitbit has been a key motivator is getting my butt in gear.
    • > Read about how somedays a sleep in trumps gym here.
  5. Being elected as president-elect of the IDF YLD Programme.
    • I am humbled and honoured to help lead the Young Leader in Diabetes Programme towards bigger and better successes over the next few years. In Vancouver, every Young Leader I met and spoke to was filled with such intense passion to help others, it’s now up to us as executive and regional council to turn their projects into successes.
    • > Read my Thank You post to all the incredible Young Leaders here.

Here’s to a productive 2016 with new experiences, friendships, challenges and milestones. 2016, I’m ready for you!

Double Diabetes

Concept, food, meal.

As most of us know, there are two major kinds of diabetes, type 1 and type 2. The former normally affects younger people, and is autoimmune in origin, leading to a complete loss of the insulin-producing cells in the pancreas. People with T1D are always immediately insulin dependent upon diagnosis and require insulin for the rest of their lives to survive. In contrast, type 2 diabetes is often diagnosed in older people, although the average age is coming down, and does not require insulin injections until later on when the disease has progressed. T2D is driven by peripheral insulin resistance which then overextends the pancreas, and literally tires it out. The insulin resistance seen in T2D is exacerbated by obesity and increased body weight, which is a reason for T2D to be growing all over the world due to poor diet and lack of exercise.

When I was diagnosed in 1989, a majority of T1D people were thin or average weight, while T2D were almost always overweight unless they took their disease seriously and changed behavior to avoid the progression toward insulin dependence. My initial therapy was the Novo pen, using human insulin of two kinds – long-acting for once daily basal and short-acting before each meal. I had to time my meals carefully, since the insulin was less fast-acting than nowadays, and the long-acting insulin didn’t completely cover me for 24 hours.Diabetes Blog Pic 2

Today, I would have been recommended an insulin pump, or so-called continuous insulin therapy, which as it sounds, provides a basal rate of insulin throughout the day, and only requires dialing up the delivery of insulin when or prior to eating carbs. This therapy together with improved glucose measuring tools – my first glucose materials were not even automatic, I had to compare the color on the strip with a panel on the tube – such as continuous glucometers worn on the abdomen and small, sophisticated episodic meters that measure the blood glucose in 5 seconds have given people with diabetes much more freedom as well as better control.

However, the other big change compared to 25 years ago, is the approach healthcare professionals and people involved in the diabetes infrastructure have taken when it comes to living life with diabetes including restricting diet and limiting dosing. I was told to never touch toast, pancakes, soft drinks or other very high carb containing foods that did not bring nutrition. I was educated by dieticians who explained the effects of the toasted surface of a piece of bread vs a piece of bread that was made out of multigrain and not toasted. I was recommended not to drink orange juice or eat potatoes, and definitely not have cinnamon buns, a very common treat in my home country of Sweden.  Today, although we are learning more and more about the risks of sugar on our health, as related to heart disease, Alzheimer’s and obesity, and people all over the world are trying low carb approaches to lose or maintain weight as well as improve cognitive functions and reduce morbidities, we are seeing a surprising phenomenon in the type 1 diabetes community. First we need to understand that there is an inherent conflict between the T1D and T2D camps, with some from the former almost discriminating against the latter and for sure not wanting to learn from or be mixed up with each other. Parents of T1D children and people living with T1D see themselves as having a disease that they did not deserve, while they see the disease T2D as a sign of laziness and lack of discipline. The truth remains that as T2D progresses, people with that type of diabetes end up with a poorly functioning pancreas, and will need to use the same kind of approach to therapy as the T1D crowd. The complicating problem in the case of T2D is the initial manifestation and the very cause of the disease, insulin resistance.

Going back to the late 80s and early 90s, when I was a young person with diabetes and new to the space, I was presented with some advice and comments, that surely are not used any longer – I was told that having diabetes actually would give me a head start on a healthy approach to life and that there were certain signs that I could learn to observe and act upon. At 16, and a serious athlete, I was eating a lot to fuel my body, but anyone going through puberty and reducing the amount of activity due to increasing demands from school or work, risk weight gain. In the US this is often called the Freshman 20, and it appears everywhere in some shape or form.  I was educated about the diet that would keep my sugars stable and that happens to be a kind of diet which is good for everyone! I realized I would have to say no to certain treats and foods, and that my friends and uninformed colleagues would look at me a little differently unless I opened up about the reasons to be diligent about sugar and simple carbs, but most of the time I saw it as an opportunity to stay healthy, not just with my diabetes, but with my weight, my body and my mind.

I have to admit that there were a number of occasions when I heard people asking about me, and even confronting me about my restrictions, and since I was very secretive about my T1D, it was awkward, but I did not care. In contrast, what I am seeing now is that parents and people with T1D are more concerned about “being allowed to eat normally” and “enjoying treats”, as long as one dials up the pump and measures the blood glucose often. I am not against diligent control and being on top of one’s measurements – this is critical and has really become easier with today’s technology, but what I find sad is that people with T1D are supposedly not changing behavior to accommodate for their disease and even more importantly, taking advantage of their disease to live a healthy life!

Double diabetes is increasing dramatically, and what it means is that one suffers from both T1D and T2D, by having T1D and then eating the wrong foods, dialing up the insulin, increasing in weight and then becoming insulin resistant. Insulin is a metabolic factor, allowing for glucose to be used for energy by the cells including the brain, but it is also an anabolic hormone which builds fat when in excess. As a T1D person I used about 2-6 units of insulin prior to my meals, and nowadays it is not unusual for people to be using 10 times that due to insulin resistance. People with this condition are not only at an increased risk for microvascular complications if they do not exert glucose control, but they also have increased risk for cardiovascular disease and orthopedic conditions due to their bodies being overweight and their insulin resistance.

I do not want us to go back to old technology and I do not want to discriminate against people with diabetes when it comes to their diets, but I urge parents and people with diabetes to consider their diagnosis as an opportunity to live healthier than if they had not been diagnosed! Healthy food can be and is delicious. There is no advantage of letting your child enjoy frosted birthday cakes or drinking coke. In fact, if one starts early, children do not get addicted to the high sugar meals that get them in so much trouble later on. I am not prescribing diet plans that are boring and resemble spa visits, but there are a number of ways to provide healthy meals that will possibly convert the other parents into treating their kids to a so-called “diabetic” diet!

References:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3671104/

https://www.idf.org/sites/default/files/attachments/article_398_en.pdf

https://www.idf.org/sites/default/files/attachments/article_398_en.pdf

Live Kidney Donation and Life Insurance

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In June 2015, my Home and Auto insurance provider, AMICA of Rhode Island, sent me a letter offering Life Insurance under very favorable conditions. I expressed my interest and was told that the premiums required for the insurance would be based on the results of a medical examination.

The results of this examination were quite normal except for some renal parameters that had changed irreversibly after my kidney donation in March 2009.

According to the medical experts of Columbia Presbyterian Hospital in New York, kidney donors have increased Creatinine levels and reduced glomerular filtration rates (GFR) compared to their pre-operative baselines. However, unlike other patients with reduced GFR, kidney donors are not at higher risk of end stage renal disease (ESRD) or cardiovascular complications.

The leading medical research centers and organ transplant centers of the US, including Mayo Clinic, Columbia Presbyterian, University of Minnesota, University of Alabama, UCLA, etc.[1], all inform prospective live kidney donors that both their quality of life and life expectancy will stay about the same after the kidney donation.

As with all surgical procedures, there is a risk involved in extracting a kidney, but outcomes are generally positive and life expectancy, as studied by Ibrahim et al in a paper published in the New England Journal of Medicine (NEJM 2009, Vol. 360, pp 459-469), is similar to that of persons who have not donated a kidney. Those findings were also confirmed in a study  by S.J. Taler et al, published 2013 in the American Journal of Transplantation (Feb 2013, Vol. 13(2), pp 390-398).

These results are hardly surprising: Kidney donors are screened for underlying kidney disease and therefore represent a sub-segment of patients high above average in physical fitness and healthy habits. It would be an expensive waste of medical resources to transplant the kidney of an unhealthy donor, and it would put both the donor and the organ recipient at high risk.

In view of all the above, I was surprised to learn that AMICA determined that an adequate risk premium for my “poor renal health” would be $30,000 over 10 years. I was informed by the AMICA Life Insurance underwriting department that insuring people like me at normal premium levels would bankrupt the company. When I explained the reason for my “abnormal” renal parameters and provided a letter by Columbia Presbyterian, I was informed that they their procedures could not take into account events such as a kidney donation.

My next step was to write a letter to AMICA’s CEO, Mr. Robert A. DiMuccio, to give him an opportunity to correct the mistake made by his underwriting department. I attached the letter from Columbia Presbyterian and provided statistical details regarding the life expectancy of kidney donors.

Five weeks later I received the final verdict: There was no way AMICA would reverse the $30k kidney donor penalty, because my poor renal health was putting me into a high risk category.

This final decision was not surprising, given the fact that AMICA’s CEO conveniently referred my case back to his underwriting department: The same “medical experts” who were previously unwilling to evaluate my renal parameters in the context of my kidney donation, were asked a second time to review my case.

What this AMICA experience has done to me is to further strengthen my resolve to exercise 45-60 minutes daily, and to stick to healthy food only. I cannot control my risk to suffer from an accident, but I can optimize my lifestyle to ensure renal health and hopefully extend my life expectancy.

The AMICA experience is also making me think about ways to help increase the number of live kidney donors, currently at the 6,000 level in the US.

The mission of the American Transplant Foundation[2] is to save lives by reducing the growing list of women, men, and children who are waiting for a transplant. ATF does this by maximizing living organ donation, which is the most effective way to fulfill its mission.

On average, 21 people die every day from the lack of available organs for transplant. Seven percent of people on the waiting list—more than 6,500 each year—die before they are able to receive a transplant.

For ethical reasons, it is not allowed to buy or sell human organs in the US. So how could more prospective live donors be incented to help patients in need?

Certainly not by learning how AMICA is handling the underwriting of kidney donor life insurance!

But how about the following: Could prospective donors be encouraged by their families to make a life saving sacrifice if they would be offered a FREE life insurance until, say, age 75 or 80?

Which Life Insurance company would be willing to take this step that could potentially eliminate the donor bottleneck? And which charitable foundation would underwrite the expense for such an initiative, and perhaps even sponsor more research and follow-up?

Treating Patients for the First Time

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Like most diabetics, I’ve spent my fair share of time in the doctor’s office. Sitting up in the patient’s chair, talking about my most recent A1c and blood glucose trends, my experiences thus far have all been on the receiving end. Well, for the first time, I recently flipped the switch on what’s been a routine in my life, and became the provider in charge of my own diabetic patients.

As a first-year medical student, I have the opportunity to volunteer my time on the weekends to a free, student-run clinic that hosts different specialties including: regular adult care, pediatrics, and diabetes. We see patients and more or less take the place of a primary care physician for routine health matters. A number of medical students, pharmacy students, nutritionists, and at least one licensed attending physician collaborate to provide care and set health plans for these patients who may otherwise never be seen by doctors.

The free clinic is named the Health Resource Center (HRC), and is strategically located in the 63113 area code, a low-income area in the northern region of the city with some of the highest problematic health disparities in St. Louis. This small strip of the city has one of the smallest general populations, but is among the highest in death rates, dropout rates, and diabetes[i]. While such an area requires a multifaceted, interdisciplinary plan of attack in order to truly solve these disparities, as future healthcare providers, we believe increasing care and education through a free clinic is a step towards the right direction. So when I first learned of the diabetes-specific clinic day, I jumped at the opportunity and signed up immediately. What better way to gain my first, real clinical experience with a degree of responsibility than to treat patients with the disease I’ve essentially grown up and evolved with over the last eleven years? I was excited for the first chance to showcase my abilities as a not just a future physician, but also as a health coach and instructor.

I saw two patients that day in the clinic. Each was significantly older than I am. This will likely mostly be the case, at least for the start of my career, but the fact that I am brand new to this role is why seniority plays a part in my apprehension. Although I will become, and am already well on my way to being qualified, I still marvel at the way that my current status gives me to the right to instruct grown adults on the way to live their lives.

My first patient had just recently been diagnosed with diabetes. My job (thankfully) was not to break the news of his diagnosis, but to now educate him on everything that comes next. I had to dissolve my intellectual bias and teach this patient concepts that have been engrained into my consciousness such as: testing blood sugar several times throughout the day, what a hemoglobin A1c was and how to lower it, and signs and symptoms of high and low blood sugars. The man was elderly, but in great physical condition. The attending physician and I decided he could likely greatly reduce his symptoms and even possibly reverse his diabetes just by making some significant changes to his diet.

My second patient was actually diagnosed with diabetes in the early 2000s and therefore has actually been managing his condition longer than I have. In contrast to my first patient, he already knew much of the key points in controlling diabetes, this trip to the clinic was more about fine-tuning his techniques on a path to reclaiming his life in the form of healthier habits. Having already completed the visit with my first patient, I was much more calm and less anxious about my role delivering sound advice and helping this next patient achieve his health goals. Years of researching and experimenting ways to manage my own diabetes finally came to form. I was able to package information from the American Diabetes Association, the advice of the attending physician, and my own personal knowledge and experience in a structured nutrition and exercise plan for this patient to take home and implement in his everyday routine.

Treating just two patients in a day is the equivalent of chipping away at a wall with a teaspoon. While I was able to successfully aid in not only treating patients, but helping further their education, there is still much work to be done in achieving health outcome equality. The continuing work of the HRC will have to be supplemented with nutritional, pharmaceutical, and exercise programs outside of the clinic. I hope to drive forth these causes as I move along the road to becoming a physician. That day was the first of many where I will be depended on for care and instruction. As these experiences come, my confidence in my ability grows as I fulfill my calling.

If you are located in the St. Louis area and would like to find out more information about the Health Resource Center in, please email us at hrc@slu.edu, below is the address to the clinic:

Health Resource Center- Saint Louis University School of Medicine

1408 N Kingshighway Blvd, Suite 213

Saint Louis, MO 63113

Phone: (314) 389-0008/ Fax: (314) 696-2671

 

Website: https://sites.google.com/a/slu.edu/health-resources-center-saint-louis-university-school-of-medicine/

 

Regular Clinic Hours are held every Saturday from 9:00 am- 12:00 pm, with signups starting at 8:30 am. Patients are served in order of arrival.

 

For more stories and health tips, follow me along my journey through medicine.  @roychealth

 

[i] City of St. Louis Department of Health, 2012

Emergency Care in the City – The Story of a Klutz

Last Friday, I managed to trip over my own feet, fall to the ground; all five feet eleven inches of me tumbling down like a large tree tipping over in the forest.  My knees did not buckle, and I caught my body weight with my hands.  My left hand hit flat ground and did not even bruise, but my right was not so lucky.  My palm hit a step, the edge of which caused excruciating pain on site and immediate swelling.   My reaction at the time was:  what a klutz!

While in law school I took a similar tumble;  but that time it was down three or four stone stairs, with my school bag filled with law books and my trusted work-horse ThinkPad weighing me down.  That fall led to one dislocated elbow, two fractured elbows, lots of bruising, and months of physical therapy.  Although last Friday’s fall was nothing like that, it made me nervous enough that I decided, with some encouragement from my sister who is a doctor, to get my hand checked out.

Any time I begin to think about going to the Emergency Room, anxiety overwhelms me.   Thoughts of sitting in a crowded waiting room, watching people with injuries far more severe than mine be seen ahead of me (obviously), and filling out countless pages worth of paperwork flood my mind and dissuade me from actually seeing a doctor.   Last Friday, when the sole purpose of seeing a physician was to ascertain whether or not my hand was fractured, I seriously debated whether going to the ER was actually worth the hassle.  Then I thought, perhaps the emergency clinics popping up throughout the city, where wait times are less than an hour, the facilities are small and clean, and the staff friendly, maybe just maybe they also do x-rays.

I found one close to my home, gave them a call, and CityMD on Atlantic Avenue in Brooklyn confirmed that all of their locations are capable of taking an x-ray.  I walked over, the friendly staff had all of my information on file from a previous visit, and the wait was approximately 15 minutes before my examination began.  The physician on staff was unable to determine whether or not I had a hairline fracture in my hand, and therefore my x-rays were outsourced to a local radiologist.  It was finally determined that I had a bad sprain, some nasty bruising, but that there was no break (phew!).  I was in and out of the facility within a couple of hours, and the staff profusely apologized about the wait.

The convenience, including the proximate location of the clinic to my home and the efficiency of the staff, made this an unusually pleasant visit for emergency care in New York City.  It is encouraging to find that emergency care is evolving, and, that if you are like me and do not require an ambulance to take you to a full blown hospital ER, you can unclog those ER waiting rooms and seek out a facility in your area where competent professionals can ascertain the urgency of your condition quickly and send you on your way.

Today, my hand still makes it uncomfortable to type, to turn doorknobs, and to carry bags.  But it is quickly healing as I have followed the recommendation of the physician on staff at CityMd to R-I-C-E (rest, ice, compress, elevate).

Have a safe weekend everyone!

Breaking Down Fat

healthy-fat

Fat: good or bad?  Often blamed for weight-gain and other health issues, the truth is most fat won’t make you fat.

In fact, our bodies need fat to fuel our minds and keep us thinking clearly.  It also gives us long-

burning energy and keeps us satiated longer between meals. The trouble is there’s a lot of confusion around fat: where it’s found, why there are so many forms, and the role it plays in one’s health.  It’s a lot to think about!

To help you get the best fats in your diet, take a look through this quick guide:

Monounsaturated Fat

Known as the healthy fat, it helps to lower the bad cholesterol (LDL) while increasing the good cholesterol (HDL) aiding in the fight against heart disease.  Monounsaturated fats can be found in whole milk products, nuts, like almonds, cashews and walnuts, in addition to avocados, olives, and olive oil. This is why Mediterranean foods have been hailed as one of the most heart-healthy cuisines around.

Polyunsaturated Fat

Polyunsaturated fat is made up of three different fatty acids: Omega-3, Omega-6 and Omega-9.  To support a healthy diet, the focus should be on Omega-3 fatty acids, which is best known for its anti-inflammatory properties.  Fatty acids also promote healthy skin and the development of our cells, reducing the signs of aging. Look for foods like wild salmon, mackerel and herring, as well as flax and chia seeds.

Saturated Fat

This is a confusing and controversial fat.  Saturated fats generally come from animal products in the form of dairy, eggs and meat, but coconut products like oil and butter are also high in saturated fats.  In recent years there has been a reversal on the thinking that saturated fats cause heart disease, and a lot more support for foods that might help keep you energized and fuller longer, like butter (specifically grass-fed), coconut oil and eggs.

Trans Fat

The artificial fat.  This “bad fat” was created through a process in which liquid oils are hydrogenated in order to withstand processing and provide a longer shelf life. Stay away from this one, which is known for its connection to weight-gain, inflammation and heart disease. Since this fat is found in processed and packaged foods, be on the lookout for partially hydrogenated oils listed in ingredients, a clear indicator trans fats lurk inside.

Keep in mind: while we do need fat in our daily meals, it is high in calories.  According to the National Institutes of Health, it’s recommended that fat make up no more than 30% of our total daily calories (this does not include saturated fat; for more information on daily value intake, see the NIH site.  Carbohydrates and protein are other common nutrients monitored on labels.)  If you eat around 1600 calories a day, you should be getting around 50g of fat.  I don’t usually promote calorie counting, but when making changes in one’s diet it is important to be aware of portions and quantities.

How do I like to incorporate healthy fat into my diet?  (these percentages all assume a 1600 calorie day)

  • When I have oatmeal in the morning I mix in a generous teaspoon of chia seeds, which deliver 3g of fat  (6% of the daily value)
  • I’ll also mix in a scant tablespoon of butter to my oatmeal, adding 11g of fat (22% of the daily value)
  • I love hard boiled eggs as a snack.  One egg provides 5g of fat (10% of the daily value)
  • Throughout my meals I’ll use extra virgin olive oil, approximating 2 tablespoons, which – at 13g a tablespoon – brings in 26g of fat (52% of the daily value)
  • I might have a few walnut halves in the afternoon adding around 5g of fat (10% of daily value)

 

And that brings me to 50g of fat, which might make up 30% of my daily diet if I’m eating around 1600 calories.  I love the benefits good fat adds to my diet, which includes flavor!

Here are some other common sources of fat:

  • Half avocado has 21g
  • 8oz whole milk has 2.4
  • 4oz wild salmon has 7g
  • 2 tablespoons peanut butter have 15g

 

Do note that every diet and body differ so what’s right for you may not be right for the person sitting next to you.  Age, gender and lifestyle will all affect the amount of calories you consume on a daily basis as well as how your body will react to and digest nutrients.  To better understand just how much fat your diet needs, use the NIH’s daily value as a starting off point and experiment with quantity; you may find that you do better with more fat or you may find you do better with less fat.

Lyfebulb Lyfestyle is here to help you live a richer, fuller life – not a restricted one.

Traveling with three kidneys, two pancreata, and a pacemaker!

Living life with a chronic disease is at best a daily battle, but most of us don’t have a choice other than just soldiering on. Traveling makes life even more complex, but why should we forego the pleasure of seeing new or familiar places across the world simply due to chronic illness?

I recently went on two business trips on behalf of Lyfebulb, that I really enjoyed thanks to the people I met, the discussions generated, but also the different atmospheres and food that I had the chance to sample. I used to dose insulin many times daily, and with time changes and new environments inherent with travel, the control of my blood sugar was difficult to manage. Since I received a kidney and a pancreas transplant, other issues have arisen, but my sugar seems to be unaffected thanks to the functioning pancreas!

So what are the issues?

First, I can no longer pass through security at airports due to my newly implanted pacemaker! The pacemaker protects me from passing out at inopportune occasions, such as when I was hailing a cab outside my building on the Upper East Side in February, or when I found myself face down on the floor of a public ladies room in June. Embarrassingly, I also passed out in the street walking home after a doctor’s appointment! These incidents were not only inconvenient, but also extremely dangerous.  What the doctors realized after a number of tests, including placing a small device under my skin, was that my heart had stopped several times, and that was the reason for my syncope (medical term for passing out). To avoid this from happening again, I received a so-called Managed Ventricular Pacing (MVP) Device, made by Medtronic in June of this year.  It kicks in when my heart rate drops 25 beats over a period of 10 seconds, or if my heart rate drops below 50 beats per minute. In the first case, the MVP pacemaker will take my heart up to 100 beats per minute over two minutes and in the latter case, it just pushes my heart back to 50 beats per minute. Having this device prevents me from hurting myself due to passing out, and has made my circle of family and friends feel more secure regarding my safety. So, being patted down or going through the alternative detector (with a bit higher radiation) is a small price to pay!

Thanks to the transplanted kidney I received in March of 2009 from my father, I do not need dialysis and I am free to travel, work, exercise, and live an almost normal life. My transplanted pancreas, which I received in January of 2010, makes my life truly worth living again! It is remarkable how much better I feel now as compared to how I felt as a diabetic dependent on insulin injections. I did not realize how bad it was before receiving the pancreas, and having normal glucose control. The obvious improvements are clearly the reductions of severe hypos (sugar-lows), and the elimination of the really high sugar values.  However, I did not realize how much insulin dependence impacted me! It is also an incredible quality of life enhancer to be able to skip meals, or eat when I want to, since I do not need to match what I eat while dosing insulin. As a diabetic using insulin, I had to be so careful. Even the milk in my coffee could put me a roller coaster of sugar highs and lows. These issues are no longer present, but since my two organs are foreign, I need to take chronic immunosuppressive medications, which make me more sensitive to infections and certain kinds of cancer. Traveling poses risks for everyone due to the confined space in the airplane, the many people we meet at airports, and the different types of bugs we may encounter. Lately, I have tried to take a few precautionary steps when traveling:

  1. Stay hydrated and rested. One cannot overestimate the power of being hydrated and having had enough sleep. I thoroughly believe we lose power and immune defense mechanisms when we do not take care of those basic principles. When I get on a flight, I try to sleep as much as I can, and I try to arrive at my destination a day before the important stuff to acclimate and rest. As a young, healthier person, I would travel the day of meetings, often overnight to avoid missing daytime work. Now, however, at the age of 43, and with all my issues, I plan differently. I also constantly either carry a bottle of water, or ask for water on the plane or in meetings. It is clear that we lose fluids, and the most obvious signs are our skin and hair, but more importantly for me is my single kidney, which requires heavy hydration to fulfill its function of clearing of toxins from my body. You can determine whether you are hydrated enough by checking amount and frequency of urination, as well as the color of your urine. Once your urine turns from light yellow to a darker color, you know that you are dehydrated. I am also not afraid of asking my doctors for sleeping pills prior to travel. It is hard to adjust to a new time zone, and for me, zopiklone (Ambien) works wonders.
  2. Bring clothes that aren’t clingy or too tight. Despite all the hydration, I seem to swell somewhat when I travel. This is probably due to my single kidney not being able to dispose as well of the fluids, or maybe my veins not being able to shuttle back the blood, or perhaps that travel increases the permeability in the interstitial tissue and one gets some edema. Thus, I always wear support stockings on the plane, and often the first few days abroad too. They make pretty nice-looking ones nowadays, and with lesser pressure than the past – just enough to avoid having heavy legs that don’t fit into the shoes or boots you want to wear. I like bringing layers when I travel, since the air on the flights is often cold and spending time at airports or in the elevated AC in meeting rooms do not agree with my internal thermostat. I save the pretty figure-hugging dresses for when I am back home or if I go away for a longer period and have time to adjust.
  3. Do not drink alcohol. When I travel for work I hardly ever drink alcohol. I definitely never drink on the plane and very rarely at business dinners.  When I travel I have a maximum of a half glass of red wine, since the alcohol dehydrates you and makes the time adjustment even more difficult. I also find that alcohol makes me swell, so I avoid it unless I am away for a longer period of time and for more of a social purpose.
  4. Eat things you know you can handle. This is a lesson I have learned the hard way! I love experimenting with food, and trying new things, but I save that for when I am home, or if I travel for a longer period of time and the trip is more for pleasure than business. Even then, I stay true to my preferences and avoid anything raw, spicy, or foreign. I tend to eat similar things daily: yogurt (plain) with nuts and cereal in the morning, bananas and nuts throughout the day, for lunch I try to have a vegetable soup and some whole grain bread, and for dinner grilled or boiled vegetables with a grilled piece of fish. I seem to have many more small meals when traveling, since it is harder to get all my calories in the main meals when I am not sure what I can get. Thus, I will grab a piece of toast or crackers in between meals, and the carbs seem to settle my stomach. I had a terrible experience last year due to salmonella poisoning from either a salad or under cooked shrimp, so I stay away from raw veggies, cut fruit, and any shell fish. Some people enjoy coffee when they travel, but my drink of choice is definitely tea. Simple English breakfast with a tiny bit of milk is delicious, and even better with a piece of dark chocolate or biscotti…

Sometimes despite all the best intentions, we cannot prevent getting sick while traveling. This has happened to me a few times, and I try to prevent a catastrophe by learning about my destination ahead of time from a medical care perspective. Going back to Sweden obviously does not involve risk for me, since I studied at the Karolinska, and know the hospital well, but if I go elsewhere, I try to do some research on university hospitals that have transplant and cardiology expertise. It is important to travel with your drugs, your list of medications, and some extras to have on hand. I tend to bring Tylenol, Imodium, my sleeping pills, and some vitamin C. I do not bring antibiotics since I am careful not to overuse them for a few reasons: 1) I don’t want to aggravate the resistance that is already growing in the world, and 2) It is critical I get the right kind when I get sick, since taking the wrong kind can exacerbate the situation. Obviously NEVER check your medication, but carry them with you in the cabin and if you are traveling with someone – let him or her carry an extra supply for you in case yours gets lost.

I am back home now and thanks to all my precautions, I feel strong and did not suffer much from jet lag!