TEDx Lugano

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I just delivered a TEDx talk in Lugano, Switzerland, and I loved it!

First, to introduce the conference and the setting:

“TEDx is an international community that organizes TED-style events anywhere and everywhere — celebrating locally-driven ideas and elevating them to a global stage. TEDxevents are produced independently of TED conferences, each event curates speakers on their own, but based on TED’s format and rules.”

Lugano is a beautiful place, almost impossible to describe in its perfection. It is situated close to the Swiss Alps on a lake. The small town has a Main Street with pretty restaurants and shops. I stayed at the hotel Splendide Royal, which sits on Lake Lugano, and from my window I could see the lake. The city has an impressive art museum and a gallery next to the hotel featuring amazing European art such as Kandinsky, Klee, and Marc. The fashion in the city meets the highest standards with everything from Dior to Massimo Dutti.

The Ted X talk was held at the Franklin University on the hill overseeing the town and the area. It is the so called American college of the area, with many foreign students, some there for a semester such as the ambitious young woman, Sheila, who assisted Sergali with the work during the TEDx, and others there for their entire degree.

To understand my feelings one has to understand the entire process of this adventure and the opportunity I had to express in that talk, what Lyfebulb and I personally want to accomplish with respect to patient empowerment.

It all started last year with our board member and Lyfebulb’s co-founder Riccardo Braglia asking whether I would consider throwing my hat in the race for TEDx Lugano 2016. Riccardo had himself given a talk in 2014, and he was able to express many of the reasons why he has taken his company, Helsinn, into the field of oncology supportive care.

I therefore accepted  the challenge and discussed what I should speak about with my partner, Anna Hehenberger, scheduled a call with the curator, Sergali Abdelikov, and off we went. The call went well, during which Sergali explained the process for applying, the theme of the conference (Future Wealth) and I spoke about my personal commitment to diabetes, my history and what we are trying to do with Lyfebulb. The talk must be totally non commercial, without references to any company, include a big idea, and offer a proposed solution.

The next step was for me to articulate my idea in an executive summary and send off to Sergali, followed by yet another call. I then moved to the PowerPoint stage followed by a word by word description of what I wanted to say… All this took place over 3 months and finally Sergali was pleased enough to say- “we may accept you but you have to modify your presentation into something less corporate, more visionary and with fewer slides!” He needed to get the presentation approved by a local committee and then by a NYC committee that oversees all TEDx conferences and presentations. TEDx is an independently organized conference series all over the world, with the same vision as the big TED conference.

I loved the direction he had asked me to take the presentation in and immediately started drawing my slides by hand instead of trying to create my own computer generated slides – this was the way I had learned to build presentations back at McKinsey when I first had left academia and moved into the business of healthcare.

My hand drawn  slides were clean and I felt that I identified a huge problem, told the story about the idea, and proposed a solution that we as an organization are moving toward!

Now the only problem was converting the slides into real pictures – and I knew a great person who could do this – our wonderful consultant for anything aesthetic, Caroline Dahlmanns. Caroline was up for the task and after 3 revisions I was pleased with the outcome and sent the presentation to the group in Lugano….

They loved it! Completely different look and actually a much stronger presentation – much more like “TED”.

After checking with my team and getting some advice from our board and marketing – I finalized the talk and started practicing how to deliver it. Over the weeks prior to the speech, I gave the talk once a day. In my head, out loud or sometimes even while sitting in a restaurant when I was not part of the conversation. I became obsessed with finding the right words and phrases to capture the audience, delivering my message, and keeping it within the 15 min allocated.

The week of the speech I was in Europe meeting with a big diabetes company together with Anna and we gave a presentation with our vision and goals for addressing the needs of the global diabetes epidemic where I found myself giving the TEDx talk as an intro over lunch! People loved it and got our message, so I felt confident that if I could only tighten this up and present as well a few days later in front of a layman group of people, very critical but also very focused on innovation, I would do well.

The day of the presentation I woke up early, had my usual breakfast of tea with milk, yogurt with nuts and cereal, as well as a piece of toast. I was dressed in what I thought was reflective of the message, blue jeans, designer heels, and a beautiful white silk shirt, and off I went to the salon for a blow out. I didn’t want to be distracted by feeling that my hair was not perfect so I had booked an appointment with a local hairdresser close to the hotel. My presentation was the second in the show, which started at 1:30 pm so I decided to have a light lunch around noon, a vegetable soup….

Finally I was on stage and my adrenaline was high, I was ready for my “fight”. As I used to be a competitive athlete, I saw this as no different than walking onto the tennis court and I had prepared similarly. No one to blame for failure but myself and that is actually how I love scenarios to be – it is up to me to be prepared and it is up to me to deliver. The speech was obviously a team effort, with so much input from my loved ones and the people whom I respect, but on stage I was alone.

“Today I am going to tell you a story about how patients can transform the global diabetes pandemic”

Off I went and I delivered the points loud and clear, and I walked off that stage feeling like a million bucks! “More more”- I really enjoyed the final step of this venture and being on stage in front of a captive audience, and knowing that this speech will be released on YouTube within a few weeks was exhilarating.

So what did I say? Well I guess we will have to wait for the movie but:

1) we are facing a huge problem in the global diabetes pandemic
2) I personally have experienced how diabetes can kill and cripple
3) I have been given a second chance and I will not waste a day not trying to make the most out of that treasured life
4) patients like me and the people who care about us, must stand up and get involved and take responsibility for our lives and for educating the rest of the world about what it is like to live with diabetes
5) teaching, mentoring, innovating, entrepreneurship, advocacy, regulatory, payers, all these areas need patient engagement and leadership
6) do not be a victim, do not wait for solutions, but become a resource, innovate for personal and financial gains
7) my call for action is to GET INVOLVED

You will hear much more from Lyfebulb going forward, our community is growing, the companies we work with are being more and more aggressive in getting the right products to the market, and we as a team will be offering new ways of getting engaged.

Stay tuned!

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!

Hopeful Diabetic

Sometimes what can’t be changed ends up changing YOU

In June 2015, at 52 years old, I was hospitalized and treated with heart issues and diabetes. Up until my hospitalization, there was never a diagnosis of diabetes. My mom and Dad both got Type II in their 50’s so I was watching for it though.   My A1C on my December 2014 physical was 6.3, but I knew I was most likely insulin resistant due to having metabolic syndrome which included PCOs (polycystic ovariarian disease), being a classic “apple” body type, and being obese. While hospitalized, they came with insulin to inject me (–um hello? what is going on?) at which point the doctor informed me my “A1C was 8.2 -you are diabetic,” and in utter disbelief said to me, “you did not know?” Actually, no, I did not.

In July my internist prescribed Metformin, gave me a glucose meter and told me to watch my numbers and the goal was to get my A1C under 7. Honestly, I was still stunned to be diabetic. How could I be okay last December and not now? In September I got into action to DO something about this. I had suffered with chronic arthritic pain in my back and knees for years, and decided to try a vitamin supplement to see if it really would ease my pain. The ingredients in it (e.g. turmeric, black pepper extract) were touted by the arthritis foundation to help so what did I have to lose? The doctor said try it, if you can just get moving and bring the weight down you can probably get off the Metformin. I won’t say what I took was a magic pill but it really seemed to help my pain and energy. Mobility improved, I lost 20 pounds in September-November and another 10 in December and January. I saw my fasting blood sugar levels drop from 100 to 90.  My doctor seemed pleased to find my A1C down to 6.3 in October. In December I sheepishly admitted to him I had used the Metformin sporadically during November while intensely monitoring my levels. My average blood sugar for the month of November was 105!  He let me stop it with the promise to keep close watch on my blood sugar levels. He also cut my blood pressure medication by half.

I have a few goals. I would love to get off all my prescription meds. I don’t say “lose weight.”  I say, “regain my health” and the way I do that is through consistent diligence in watching my blood sugar levels, portions of carbohydrates, moderate exercise, taking my prescription medications and vitamin supplements daily, positive attitude, practicing gratitude, and sharing my hope to others through social media.  I find that helping others is the key to helping myself. There are days I don’t feel like doing all it takes to manage my health but honestly, I don’t want to let them down!  My 14 year old daughter has a renewed interest in being more active now that her Mom is.  Even my husband is starting to watch his food choices.

I believe any illness in the family affects the WHOLE family and while I am not glad for the illness, I am grateful finally to have gotten my wake up call to start being more pro-active and a bigger participant in my own life. I have met some incredible people through this journey, ones that inspire me to do better, to be better…because my goal is to one day hold my first grandchild, say in 10-15 years. I would love to be an active 60-something year old grandmother, vibrant with health and energy.  I know before my hospitalization, I had few hopes or dreams because I felt ill most of the time, but now there is a renewed optimism about the future, HOPE and purpose in helping others. To me, that is what living is really about.

Happy Valentine’s Day

Today is Valentines Day, and most of us think happy thoughts – about love, friendship, and family.

Last year a few days before this very holiday, I was told that my heart had become so tired that it just gave up for a few moments, long enough to render me unconscious in the middle of the street in Manhattan, and then again on a stretcher in the ER of a NY hospital. My heart had stopped beating long enough to place me on the borderline between alive and dead, and my sensations during this period were those of warmth, light, and peace. For some reason my body was not ready to give up, and I woke up again.

There was no good explanation as to why my heart would just stop, and the more experienced docs at the cardiology ICU, sent me home after three days of observation, with the advice of taking it a little easier, drinking more water, and simply not overdoing it.

I spent Vday 2015 at home with my boyfriend, happy to be with him, but more scared than I had ever been during all my years with diabetes, before my kidney and pancreas transplants and during my bouts with serious infections. It was a new fear, one of immediate death without any control or ways to reverse the sequence of events. I felt utterly helpless.

The heart is the muscle that pumps the blood, nutrition and oxygen around our bodies, supplying all organ essentials. However, the heart also represents our soul, our emotions and the very center of our beings. I am a logical medical scientist, so I know we can survive heart attacks, and even heart transplants, but I knew we cannot survive when our hearts simply stop.

These episodes continued for another 3 months, with six additional fainting events, at the most inconvenient occasions, and finally, the docs implanted a detector close to my heart, called a loop recorder, and miraculously, three days later I was yet again on the floor face down, this time in the office ladies room, in a toilet booth, with a growing bump in my forehead. I had experienced another fainting episode, but this time the docs could clearly diagnose the episode as complete heart arrest, and would not let me leave the hospital before a pacemaker was implanted.

One year later, I have a visible device under my skin under my left clavicle, and wires going into my heart that are triggered when my heart beat slows down too much. I have not passed out since the procedure June 17, 2015, and i am getting comfortable with the lump under my skin although i hate what it does to my appearance when I wear a tank top, bathing suit, or evening dress.

This year for V day, I am confident in my heart’s ability to continue beating, even when I am tired or stressed and I am definitely confident in my ability to love and cherish my close ones and be inspired and motivated by everyone in our Lyfebulb Community.

Thanks especially to Jean and Anna for helping me last year, and to Dr Evelyn Horn and Dr Bruce Lerman at NY Hospital, Weill-Cornell.

Happy VDay!

Karin Hehenberger

CEO & Founder of Lyfebulb

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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!

Diabetes and the Holidays

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Seasons greetings, my dear Lyfebulb community! I hope you are planning to spend some special time with your loved ones. And for those of us with type 1 diabetes, it’s important to remember that our medical condition comes along for the ride too. Here are some tips on keeping things both festive and healthy:

Count Carbs: This is a tricky item on our list of holiday challenges.

When I’m not cooking, weighing, and measuring in my own kitchen, there are two things that I try to keep in mind:

1) Make your best guess.
While eating away from home, estimation is my key to success. I look over what I’m about to eat, and tap into my inner dialogue:
“That’s about a half cup of beans. I’ll call it 20 grams of carb.”
“I could count this cornbread the same as sandwich bread. Let’s say, 25 grams.”

I’ll often taste dishes to inform my decisions:
“The sauce probably adds another 10 grams.”
“This tastes like it has more fat and protein than I thought. I’ll count it as 16 grams instead of 30.”

I also try to consider whether there will be dessert, and how many carbs I should add to the list for that.

2) Remember to make your best guess.
Sometimes I get caught up in socializing, and it’s harder to focus on what/how much I’m eating. Taking a moment to slow down and size up my food is critical.

 Ask for Help: When you have an issue, it doesn’t hurt to explain your situation to the people around you.

I arrived at a bar recently, only to discover that my blood sugar was low. Thanks to Karin Hehenberger’s tips on drinking alcohol, I knew that I needed to bring the blood sugar up before ordering a drink.

The bartender seemed confused when I asked for a half cup of juice. “Uh. What kind juice?”

“I don’t care,” I told him. “I have diabetes, so any juice would be great.”

“Say no more!” He told me, grabbing a bottle from the fridge. He refused to charge me for the juice, telling me that diabetes runs in his family. “Cheers,” he said, passing me the glass.

 Accommodate for Travel: The inactivity of traveling long distances tends to push your blood sugar higher than normal.

To compensate for this, I often make some adjustments before and during a trip.

Driving from New York to visit family in New Hampshire was going to take about five hours. This is a lot more sitting than I’m a costumed to! So here’s what I did:

1) I took more basal insulin.
An hour before getting in the car, I set the basal rate on my insulin pump to deliver 130% of the normal dose, for the next four hours.

2) I ran intervals.
Since my dad was driving, we agreed that I could get a head start on foot. While everyone else finished packing the car, I threw on my sneakers and ran sets of sprints. They picked me up twenty minutes down the road, refreshed and ready for the trip.

3) I monitored my blood sugar.
While sitting in the car, I kept a close eye on my blood sugar. If it started trending up out of the target range, I’d make small adjustments by insulin dose. If it started trending down out of the target range, I’d make small adjustments by snacking.

Be Patient: Of course you do your best, but you’re not a superhero.

When diabetes throws me a curve ball, I try to stay calm. I consider the circumstances, think resourcefully, and plan my next moves. I also try not to blame myself for making mistakes, because it only adds stress to an already difficult situation. “Oh, Diabetes,” I think. “You’re keeping me on my toes!”

One time I was staying with my cousin, Matt, for a long weekend, and I realized I hadn’t packed enough insulin. When we got to the pharmacy, I learned that a fresh bottle would cost $250. Yikes!

Recognizing my distress at this news, the pharmacist shared that we could probably find a generic insulin at a cheaper price a few blocks away.

Matt then remembered that his buddy also has diabetes. They talked briefly on the phone. His friend was happy to help out, and he joined us for dinner that night. Not only was it a relief that I didn’t have to buy more insulin, but I had a really nice time sharing stories and tips with a fellow diabetic!

Wishing you all a wonderful, healthful holiday season!
What challenges do you experience with diabetes and vacation? Feel free to leave a comment and check out more of my articles on twitter @Robinrjsmith.

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?

[1] http://www.srtr.org/csr/current/Centers/TransplantCenters.aspx?organcode=KI

[2] http://www.americantransplantfoundation.org/about/mission/

Take your power back as a diabetes patient!

unnamedLiving with diabetes is difficult. Let’s not deny that.

Sometimes more so, sometimes less. On a day-to-day basis, there are many ways you can make it less difficult.

And then there are those times when it all becomes just difficult.

You feel unsupported. Alone. Misunderstood. Frustrated. Angry. Unheard. None of which help your blood sugar to stay stable either, right?

One of these instances that many a diabetes patient has experienced at least once throughout their diabetic career, is at a doctor’s appointment.

Not only do you have to see various types of doctors regularly, but it seems as though most of them don’t even listen to what you say.

You know what it’s like. You explain your case, how you’ve been feeling and what’s going on with your blood sugars, which don’t seem to make any sense, not in this, nor in any other possible parallel universe.

And all your doctor says is something very comforting along the lines of: “well, to me, it just doesn’t seem like you’re trying hard enough!”

*sigh*

It’s just as if they haven’t even heard what you just said, or, alternatively not even cared one little bit.

But what about if you have been “trying hard enough”, done everything in your power to get diabetes under control and, if for no other reason, not have to listen to that one sentence being said at every appointment? What are you supposed to do then?

For a long, long time, all I did was say “yes, doctor, I’ll try harder for next time.” And I’m sure you’ve done it, too, if only to get out of the doctor’s office and go back to your, apparently, according to them, unfulfilled life.

As soon as I got back home after those appointments, things got back to what used to be my normal. I’d do exactly what the doctor told me to do – try harder with all the tips, tricks and tools they had given me. Which only left me as disappointed the next time I had to endure another doctor’s visit.

I’m not certain when I had had enough of this circus, actually. But one thing was for sure, I felt I couldn’t keep disappointing myself like that anymore. I cleaned up my act, what I ate, how I exercised, how I viewed blood sugar numbers and what role my doctor played in this cobweb that is diabetes care. This took me quite a long time as I did it with baby steps, very gradually.

This was despite my mother always telling me since I was diagnosed with Type 1 Diabetes at the age of 2; “you are your own best doctor”. What she meant by this was NOT that I could just ignore health care professionals opinions and treatments, but rather that I know my body the best, only I can feel what treatment (or anything else) is the best for me and only I have the power to make the necessary changes to my care to make diabetes-magic happen. Sure, my doctor can help, advise, check and support me, but ultimately I’m the one who needs to make the decisions regarding my own care. And that requires a lot of preparation, skills and knowledge. Oh, and a little dash of courage, too.

I want to share my 5 best tips on how to become so confident during a doctor’s visit that they can’t help but listen to what you’ve got to say.

1. Knowing your options

I can’t tell you this enough: Research. Your. Options. It’s about keeping up to date with new tools, new science and new helpers.

Often I’ve arrived at my doctor’s office with a bucket full of new information that I’ve spent time and energy researching, only for us to come up with some kind of awesome solution to whatever is going on right there and then. A solution that my doctor, nor I had thought of. We got there together because I brought her new information.

Also, knowing what your test results mean without having to rely too much on your doctor to explain them to you is pure gold. That way you can get to a solution quicker as a team, as well as it enables you to be able to ask for extra investigation (i.e. more tests) should they be necessary. This goes for all test results, from HbA1c to thyroid tests to cholesterol to vitamins and minerals.

It also gives you the power to say no to suggested treatment options that you, through your research, have found out won’t work for you. For whatever reason.

This is a lot about taking responsibility for your own care. Knowledge is power!

2. Your Dream Health Care Team

This is one of my favorites!

Assembling your Dream Health Care Team is essential for you to get access to the best care for you and your needs.

What does this mean? As soon as you can’t be completely honest with a healthcare professional and your relationship isn’t working, it’s time to look for a new one.

For example, say your endocrinologist only wants to push more medications on you, whereas you would like to explore options for as long as you can, is when it could be in your best interest to find a new endocrinologist whose thoughts are more aligned with your own. This goes for any healthcare professional, from the aforementioned endo to CDE to nurse to nutritionist to ophthalmologist to GP.

In the end, you’ll end up with an awesome Dream Health Care Team that you know has your back whatever may or may not happen. I know I love my Dream Team of ladies helping me with whatever I need!

3. Get to Know Superheroes

Batman, Superman and Catwoman are all on your side!

Jokes aside, superheroes in this case means people that are going through the same thing as you are; other diabetes patients!

The absolute easiest way to do this is through the diabetes online community, or DOC for short, where you can find all kinds of diabetes related questions, issues, stories, experiences, and, first and foremost, help and inspiration to find a solution that suits you.

So check out a few diabetes related Facebook groups, blogs and forums. Your questions are there to be answered, preferably by people who have gone through the same thing themselves and live with diabetes 24/7.

4. The Fine Line

Empowering yourself with all this knowledge is fantastic. And necessary. But it can also easily come to a point where it’s all just too much.

Watch out – knowing too much and being a besserwisser about it is annoying. For everyone involved.

There is a very fine line between being annoying and being just-informed-enough-to-get-your-point-across-efficiently. If you push too much, the only thing you’ll achieve is to leave both your doctor and yourself feeling frustrated and unwilling to find the best possible solution for you. You still want your doctor on your side; they’re the key for you to get exactly the help that you need.

Remember that your physician also has years of experience with you and other patients individual forms of diabetes, so completely dismissing their opinion and suggestions is just as silly as just accepting everything they say. You need to find the fine line between these two.

5. Celebrate!

Don’t forget to celebrate!

Celebration is unmatched in terms of effectiveness for motivation and continued self care, especially when it comes to people with diabetes.

And it’s all about celebrating the small stuff, like a great blood sugar reading, a well-bolused meal, correctly guesstimating your basals for exercise or a successful visit to the doctor’s office.

The more small things you find to celebrate, the more you are able to appreciate yourself, with diabetes being a part of that self.

Learning these steps and daring to take them in preparation for, and during, your next doctor’s appointment is a very courageous, yet necessary thing to manage your ride with Diabetes as well as you possibly can.

“You are your own best doctor.” Remember that.

Winter and the BUGS

Autoimmune diseases such as MS, Rheumatoid arthritis, psoriasis, Crohn’s and ulcerative colitis all have the basic problem where the individual’s immune system turns against itself as opposed to fighting the outside world. Something beyond the genetic set up is needed to trigger the disease and so far, celiac disease (or gluten intolerance) is the only autoimmune disease where we know what the trigger is – gluten. There are about 100 different autoimmune diseases, and in the US alone, about 50M people suffer from one or more of these conditions.

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Type 1 diabetes is also an autoimmune disease, but in contrast to the ones I mentioned above, the treatment is rather different due to the progression of the disease. When a person is diagnosed with T1D, their insulin-producing cells are almost already all gone. Although scientists have shown that the human pancreas may have some regenerative capacity under certain conditions (obesity and pregnancy for example), we are not leveraging that in today’s clinical practice since there is no drug approved for that purpose yet, and we have not come up with a safe way to combat the immune system at the same time. That is the very issue with T1D, it is a constant battle between the body’s own immune system which is trying to destroy insulin-producing cells, and the lack of the body’s regenerative capacity in the pancreas. This battle can be distorted for years, and that is why some people are diagnosed as toddlers while others in their 40s! When one is diagnosed as an older individual, most often the disease is less aggressive, and perhaps these individuals still have some cells left and thus some endogenous (their own) insulin capacity.
Back to the contrast with other autoimmune diseases – in diabetes the treatment is to replace the missing hormone, insulin or to enhance the effects of insulin, while in other autoimmune diseases the treatment is to reduce the autoimmune attack since the tissue that is being destroyed often is regenerated in between flares. For example, in Crohn’s disease, the intestine is the target, but during long periods of time, there are no symptoms at all, and the goal of course is to maintain that status for as much time as possible without impacting other functions of the immune system.
So what are the risks now that we are entering the winter months? Well, for one, the flu season is upon us, children are gathering inside rather than outside, incubating their germs and spreading them more easily. There is no good scientific episode to show that the cold weather would trigger virus and bacterial infections, but common sense still says we seem to get sicker when we are cold. A person with an autoimmune disease, who needs daily medication to inhibit the immune system from destroying an organ system or tissue, is more vulnerable to catching and developing a more serious infection. The bigger problem is when the individual has caught an infection, and it spreads, since the best way to limit the damage is to improve one’s own system, but by doing this, the autoimmune disease is less restricted and can cause a flare.
My personal situation is further complicated by two organ transplants and the medication I am taking to reduce the risk of rejecting those organs. When I develop an infection, my doctors often reduce the amount of immune suppressing medication I take to allow for my own system to get rid of the infection in addition to quickly determining what the agent is that we are dealing with so that the right kind of anti-infective medication can be put in place. Targeting the virus, bacteria or parasite correctly and quickly is of utmost importance, and today’s analytical equipment is quite sophisticated but it still often takes days for the final result. Prior to having that, the doctors often prescribe some super duper antibiotic to kill off a majority of bugs, and in my case, that lead to opportunistic bugs taking over last year and three bouts of clostridium difficile ensued. When the immune suppressants have been reduced, I face two major threats, one being rejecting my kidney and pancreas on the basis of foreign bodies inside my body, and the second one my own autoimmunity may flare up and start attacking the new pancreas, like it did my first one.
My advice to anyone with an autoimmune disease, or with an organ transplant, is to try to avoid getting sick! Easier said than done, and one cannot live one’s life inside a bubble, but there are a few simple precautions:
1: avoid interacting with large groups of people (especially young children) inside during the winter months

2: wash your hands after using public transportation and before having food or drinks

3: do not eat any raw foods in restaurants, including pre-cut fruits

4: ask for water without ice when traveling to exotic places

5: if someone at work or in school is sick, do not interact with them

6: as soon as you start feeling a cold coming on, take precautions such as hydrate, rest, and if you have a temperature, seek medical advice asap

7: make sure you have taken the flu shot and any other vaccinations appropriate in the locale you are residing

Create Your Perfect Diet

personalized-diet

In the struggle to eat right one of the biggest challenges is figuring out which diet to partake in.  But before you dig into the world of diets, let me stop you–there’s an easier route.

You’re closer than you think to the perfect diet; the one that will help you reach your health goals, manage your concerns, and run smoothly alongside your lifestyle.

What’s the missing key, then, to unlock this mystery diet?  Your body!  And by body, I also mean what’s in it: your mind and your emotions.  Yes, one of the best ways to arrive at the perfect diet is by listening to our bodies.  I call this the Foundational Diet.

But it’s not always clear on where to start, or how to facilitate such communication.  And what do our emotions have to do with any of it?

Here are three tips to help you connect with your body in order to unlock your perfect diet:

Pay attention to how you feel with each meal

How did you feel after that Chicken Caesar Salad?  Any better or worse than after that grilled veggie sandwich?  By sensing negative reactions (bloating, sluggishness, heartburn) or positive ones (stable energy, improved clarity, satiated for hours), we begin to understand which foods work best for our body.  From there it’s simple: add in more of those foods that make you feel good.

And here’s an extra tip: the simpler the meal, the easier it is to understand how various ingredients make you feel.  This is especially helpful if you suspect an allergy.  You may want to be tested for if you find that you consistently feel bad with a particular food or meal.

Write it down

Keep a journal handy–digitally or traditionally–and write down every meal, snack and beverage you consume.  And don’t stop at the food: be sure to include how those foods (or beverages) made you feel, as I describe above.  It might sound tedious, but this practice helps you hone your ability to read your body’s cues; to know which foods in your diet contribute to your health goals, and those that don’t.  Writing it down provides reinforcement!

Confirm the consequences

Once you establish connections between certain foods and the way you feel, you’ll begin to see the value of your choices.  Every little decision leads you closer to a diet that helps you reach your health goals.  Like realizing your body feels better with whole milk in your morning latte rather than skim.  That’s encouraging; it builds confidence!  You’ll also be able to discern which foods are worth your while;  no one will have to tell you “don’t eat x” when you know for yourself “x” makes you feel crummy with a headache.

It is so empowering to know every choice we make–however small or large–has a consequence.  That our body can and will react to what we eat!  This connection is the foundation of every healthy, personalized diet.  Which is why I call it the Foundational Diet!  And over time that connection will become stronger and clearer.

And me?  My Foundational Diet provides freedom.  It also ensures I pay attention to every meal.  For example, I find that I have steadier energy, brighter skin and better sleep when I really limit my sugar intake.  That’s not to say I don’t enjoy sweets, but I know not to overdo it because I don’t like to experience those reactions.  (This is me weighing the consequences!  Chocolate tastes great and enhances serotonin, but at the same time it does add caffeine, sugar and most likely weight!)  What else?  My body loves quinoa.  It gives me energy, helps with digestion and keeps me satiated after every meal – it just works well with me!  This is helpful to know so that I can be sure to keep it a constant in my diet.

And what was that about emotions?

A healthy diet is optimized when we’re in a happy state; when we’re encouraged and confident our choices are leading us down the right path.  Stress hormones, like cortisol, force your body to store energy, which can lead to weight-gain, bloat and digestive discomfort.

So along with dietary choices, emotions matter!  Surround yourself with individuals who will encourage and support you in your health endeavours.  Lyfebulb sees great value in having such a community, which is why we love to connect people through our Lyfebulb Connect initiative.  Join us!

Please note: these tips are geared for individuals who are without medical conditions; for those interested in making dietary changes with a medical condition please consult your doctor first.

 

Falling Into Place – Restarting My Life with an Ostomy

It was an exciting day as I stepped out of my car door, onto a new college campus.  It was an environment filled with more new people than I could count, and of course a jumble of emotions one cannot control.   Oh yeah, and not to mention the ostomy I was sporting along with a suitcase full of supplies and all the medications I would need for the semester.  Entering college was hard, and with a chronic illness I expected it to prove even more challenging.  Surprisingly, I was wrong.

You may be asking, “what is an ostomy?” An ostomy is an artificial opening on the stomach, created during an operation such as a colostomy or ileostomy.  It is a “new” channel for waste to exit the body during the digestive process.  It can be temporary or permanent.

My Story

I thought life could not throw me any more surprises after nearly ten years of being diagnosed with Inflammatory Bowel Disease (IBD), and of course I was wrong!  I “restarted” my life two years ago when I came out of surgery with my ostomy.  Although it has been the hardest battle, I feel I have truly won.  I have my life back, and there is nothing more that I could ask for.  I have learned that every day is a new day and what you make of it is up to you.

Attending college and moving away from home was one of the accomplishments I was able to achieve with starting this “new life.”  It was the best feeling until I got there and thought “what are people going to think of me? How do I explain my disease or do I even have to? Do people even know what an ostomy is? What if….?” The list goes on and on, and although I tried to tell myself to move forward confidently, it was only human to have these questions.

The only way I found answers was through my experiences.  I found that people are going to think of you the way you think of yourself, so be confident and kind.  Explaining my Crohn’s went one of three ways; either people were really interested and asked questions, some already knew what it was, and others were extremely confused and just said “oh okay, well feel better.” Explaining Crohn’s was easy to me.  On the other hand, I was very nervous about explaining my ostomy. To me the circumstances of explaining my ostomy were much harder for a number of reasons.  Chronic diseases can also be known as invisible illnesses, and up until I had an ostomy everything about my illness was just that, invisible.  Although it was and is extremely frustrating to explain how sick you are when you “look fine,” it is also sometimes easier to not explain at all. I was always secretly happy that no one could “see” my disease.

My new ostomy took away that invisible feeling. The clothing I wear is just like everyone else, and more times than not, if not at all, no one can tell I have an ostomy.  The toughest situations I have had were going to the beach and going out on dates. I was so worried about what I would wear, especially when it was time to hit the beach.  It took a while but I found my niche, and that would be anything high-waisted!  These clothes allow me to be comfortable and cute at the same time.  Everyone is different, I know people who go to the beach and do not cover up their ostomy, which takes a lot of guts. No pun intended.

Dates can also be hard because sometimes your date may want to cuddle up with you and watch a movie, or something like that. It is hard for individuals with an ostomy as it can take a while to open up and share your life about living with an ostomy.

 

Life Moving Forward

I am in the process of finally learning how to let go and live my life.  I have learned you do need to tell anyone about your ostomy or your scars until you are ready.  If they cannot accept you, they are not worth another second of your time.  Either people are supportive but know that your ostomy does not define you, or they are too caught up in their own lives and do not even know you have one!  Most people do not care.  What a relief!

Although many others do not mind, it does not make it easier to live life with an ostomy.  Personally here are a few tips I find to be helpful while living with an ostomy:

  • Do not label yourself as someone who has an ostomy. You are still the person you are, and the person you want to become.  Just like before, you can accomplish anything.
  • An ostomy does not limit you by any means. I have been hiking, tubing, and spent all winter snowboarding down some of the biggest mountains in New England. Guess what, during these trips I did not have to worry about the bathroom as much so I had more fun!
  • Your self esteem will change because your life is changing, but you have to get back out there because once you do you will never turn back.
  • Although at times it may seem like everything is crashing down, tomorrow will be better.  Life does get better.

Living with a chronic illness day to day is not easy, but living through experiences over time can help.  Free yourself of all the things you think you are “supposed” to be.  All that matters is that you are happy, and if you are, then you are doing something right.  College and my experiences has taught me to feel comfortable in my own skin.  Once you are, everything else will fall into place.