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Opt Out

On Wednesday 20th May 2020 the law around organ donation is changing to an opt out system in England. This basically means that all adults will now automatically be put on the list to be an organ donor. Anyone who is under 18, lacks the mental capacity to understand the law or who has not lived in England for at least a year before their death will be excluded from this. You can still choose to opt out at any stage if you do not want to be considered to be a donor. As I mentioned in my last post, when a young girl named Keira sadly passed away in a car accident, her kidneys, liver and heart were donated to a young boy named Max. Max and his family campaigned for this law change which is now known as ‘Max and Keira’s Law.’

According to gov.uk, “Three people die each day while on the waiting list. The new law will help to reduce the number of people waiting for a life-saving transplant.” If you look at some of the statistics around organ donation, the numbers are baffling. It seems that a lot of people agree with it but have not got around to signing up yet – around 80% of people in England would be happy to be donors but only 38% have opted in. I get it, when it isn’t something on your radar you might forget, or not make time to jump online to register. From Wednesday, it will be done for you meaning that hopefully more life saving transplants will go ahead.

Another statistic that really blows my mind is that half of families don’t give consent to their loved one’s organs being donated. This is usually because they don’t know the wishes or views of their family member. Death is such a taboo subject in most households and it isn’t really something people want to chat about over their roast dinner on a Sunday afternoon but is so important to have that conversation. If you don’t know how to bring it up, show them this blog post and get them talking! It might just save someone like me one day in the future. Families will still be consulted when the law changes and the final decision is made by them.

I think another important thing to take from the law change is that you can still opt out if you want to. This can be done at any time on the NHS website and there is absolutely no deadline to do it. Also, I have heard a lot of people say that they are happy to donate everything except their eyes because they find the idea a bit strange. Obviously, this is entirely the choice of the individual but I think it is worth noting that the NHS do confirm that “the eye is never transplanted whole. The cornea is transplanted, which is the clear outer layer at the front of the eye that helps the eye to focus light.”

So the law is changing and you will automatically be put on the register unless you fall into one of the excluded groups. You can opt out at any point by visiting the NHS website. Your family will still make the final decision so it is still really important to have a chat with them to let them know how you feel about the idea and also to know what they think as well. “Every day, someone in the UK dies in need of an organ, because not enough organs are available for transplant. But only 1% of people die in circumstances that would allow them to donate. Most people support organ donation in principle and would be willing to donate their organs after their death. However, many people do not make this decision clear either by signing on to the NHS Organ Donor Register or telling their family. The change in law better reflects what most people want to happen and will help save and improve more lives.”

Original article published here.

The Lyfebulb Philosophy – An Introduction

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  • Work Hard
  • Eat Well
  • Exercise Regularly
  • Expand your Horizons
  • Relax Frivolously
  • Do Good

We believe that living well and being happy with yourself include all these components. It is not enough to work hard and play hard but we need to take care of our bodies and minds as well. Treating our bodies as finely tuned machines is a method top athletes are used to and that works for periods of our lives but to succeed to be overall happy the human being needs more than just fuel and toning, we also need intellectual stimulation, feeling needed and to use our hearts.

I have lived a life that has been divided into different phases, the first phase as being a child athlete in gymnastics, track and field and tennis which required me to keep my body very strong and flexible.

This changed when I was diagnosed with diabetes a few days before my 17th birthday after which I dedicated many years to forcing my brain to take in as much as possible about my own disease and show the world that I could compete well in academics and later on in the work place. I did not focus on my health for a few years and due partly to my lack of care for my own body, it broke down and forced me to switch focus again.

After having to solve for several complications to diabetes, such as kidney failure, vision loss and general dysfunction, I started the third phase of my life, which now took into account my body and mind, but I still had not included my heart. When you are fighting for your life, it is hard to think about what you can do for others, but survival instincts take over and the individual becomes selfish. I see this a lot in people who have chronic disease, they tend to feel sorry for themselves during periods of time and it will take some soul-searching until they realize that helping others, ie doing good makes you feel and even look better!

When I realized all this, more than 20 years after my diagnosis I felt a new kind of energy and motivation that reached beyond making money or getting ahead. I wanted to make a difference but to do that, I needed to take very good care of my mind and body.

For me, my motivation changed from being a competitive athlete, star student and young professional trying to make it, into an adult with some disabilities but with a clear compass for what I wanted to accomplish and how I wanted to be seen.

I think motivation is the driver for behavior and any program to affect health, esthetics or performance need to include strong motivational triggers, otherwise technology, diets, gyms do not work.

My simple advice to anyone who wants to keep a healthy diet is to eat a balanced diet, with proteins, fats and carbohydrates, but to reduce the portion sizes and the amounts of simple carbs, saturated fats and red meat as soon as you want to reduce weight. Another important trick is to have many smaller meals, rather than a few heavy ones, to never have a large meal late in the evening and to replace alcohol with water as much as possible. You want to keep your metabolism high and working, which you do not do if you starve yourself and skip meals. Coffee is a great metabolism booster, although there are side effects to consider if you are hypertensive or if you have GI issues.

Regarding exercise, my simple advice again is to be regular and to incorporate physical activity daily, almost as a part of your routine. It could be a walk in the morning, after lunch and dinner, taking the stairs and to walk the distance from the last bus stop before reaching your home. If I do not have time to get to the gym or go for a run in the Park, I pay extra attention to my body during the day and do small things such as lifting my legs while sitting, tightening my muscles in meetings or volunteering to do errands (will make you popular in the office). Getting your heart pumping is critical and using your muscles will build tone and make you look better.

At Lyfebulb we also believe in broadening your horizons beyond work and exercise. This means that we encourage individuals to participate in activities that are not directly related to your work, for example music, art, antiques, theater, movies. This is different than just enjoying some time off, which falls under the category of relaxing and we add the word “frivolously” to make sure there is no required learning in the relaxation.

Personally, broadening of my horizons is the most difficult pillar to incorporate in my life and that has to do with my competitive spirit. If I am not very good at something, I rarely participate actively, just passively, as a form of relaxation. For example, I love watching movies, but I do not push myself to watch so-called intellectual movies or classics unless they are enjoyable. I do not listen to music to learn about a composer/artist or genre, only to feel happy or work out. I love fashion, but only if the clothes appeal to me personally and if I would consider buying them. I am not interested in their history, the designer or how they were originated or made. I have a strong sense and clear views on esthetics – but only for my own pleasure.

Lastly, doing good – something we feel we should all be doing daily and always keep the concept in mind. It actually should not even be a thought, but it should be inherent to your character –  we believe that people who are good, normally do well!

So now let us get back to motivation. What drove me to become a top tennis player in my country as a teenager? Not doing good, not to be healthy and not to be rich, but I was driven by the motivation of winning, becoming a champion and the satisfying feeling that I was truly excellent at something. A similar feeling drove me to do well in school, but the direction my studies took me also included the motivation to learn more about my personal disease and to be part of the race toward a cure. I wanted to graduate with two degrees from a top university in record time, and so I did. But when I had reached that goal, my motivation to pursue medicine was lower than my motivation to become successful financially and to again prove to the world that I could do something very hard, ie move careers and become a successful young woman in finance despite my scientific background. Although it appealed to me to make money, financial success was never the driver, while “winning” still was. I set up goals for myself, in getting great jobs, performing well in meetings and being recognized for my intelligence. When I got very sick due to genetic predisposition to microvascular complications and mismanagement of diabetes, I was motivated by a different driver – health.

I needed to get back in shape metabolically to continue the life I was living, and although I made big changes, this fight required double transplants and lots of medical care to get to the point where I am now.

 

What motivates me now – health and doing good are at the forefront, success at work and personally are secondary. I want to be happy and I want to make others happy. I love seeing the work we do at Lyfebulb make a true difference for people and that I can use my experiences to help others – companies, individuals, foundations and hospitals. I guess I still like to be recognized and my inherent insecurities push me to work very hard and to continue my quest, but I never forget to keep space open for my health which clearly is backed by how I eat, exercise, relax and how I expand my horizons!

My advice to others is to recognize your personal motivation – it may differ from mine. If you focus on your looks, health, family, net worth really does not matter. All that matters is that you use your trigger at the moments when you need to make decisions and that you keep in mind the 6 Lyfebulb pillars of our Philosophy.

For example –

1: if your motivation is your family, keep them at the forefront of your mind when you are faced with stress. When you are close to eating the wrong meals, skipping your daily exercise or when you are close to making an unethical decision – think about your family and how they will suffer if you are no longer strong and happy.

2: if your trigger is your financial situation, think about the long term and how your health is critical to your pocketbook and that making short term profits while disregarding your waistline and your morals will not enable you to enjoy the money for a very long time

3: if your driver is your appearance, consider the food you are eating or avoiding to eat and the exercise you are dropping or overdoing. It is equally bad for your appearance long term to be too skinny as it is to be too fat. Health is reflected by your appearance, so if you drop your driver, your health will be suffering a great deal.

We will be featuring a number of ideas to stay on the plan – simple, enjoyable and motivational posts will be launched on our various social media outlets. Stay tuned and do not hesitate to reach out to tell your story and to ask us more about ours!

The Power of Human Resilience: Quelqu’un m’a dit

I just listened to a song by Carla Bruni and it triggered many feelings that have nothing to do with the woman singing, the music, or the lyrics.

It triggered feelings of nostalgia for a time period of my life when things seemed to just get worse by the week, while I for the first time in my life, experienced the beautiful spring and summer time in Stockholm with no tennis matches, exams or business meetings.

In April 2007 I was on a business trip to the us while I was living in Sweden working in venture capital. I stopped by my parents house in Westport Connecticut on my way back to Stockholm but did not feel well. My feet were strangely swollen and when I arrived to the airport in New Jersey, I could not fit into my shoes. I had a terrible flight back to Europe and when I got to my apt in Stockholm I realized something was very wrong. My blood sugar was unmeasurable (indicated HIGH) despite having given myself insulin in a timely manner.

Back home I realized the insulin pen I had been using had not been dosing properly but had broken and thus no insulin had been injected for the past 24 hours or more.

I was now so tired and weak that I simply dosed myself with a new pen, put a bottle of water next to my bed and dosed off. When I woke up my sugar had become measurable but at the highest level of the machine I was using. As a doctor and a long term patient with type 1 diabetes I understood that I had been in keto acidosis and very close to going into coma.

The following morning I went to work but my state was still very weakened and I was in cold sweat all morning- so bad that I went to see my doctor acutely, who took my labs.

My hemoglobin was 6, meaning I was severely anemic and I was immediately ordered a blood transfusion which was administered by a childhood friend who was a nurse in the hematology department and she was the first one who noticed my blood pressure was 220/180!

The doctors were very concerned and immediately ordered a whole range of tests, from bone marrow biopsies to complex blood cell analysis since they thought I may have cancer of my blood.

My parents back in the US were very concerned and the next thing I knew, my mother was on a plane to Sweden to help me, which made me livid since I wanted no help and definitely not for my mother to move in with me. I could not stop her despite yelling on the phone and telling my father he didn’t care about me anyway (!).

It was my mother who pointed out the fact that my feet may be swollen due to my kidneys, not some disease of my blood. She asked me to test my urine with these urine sticks all diabetics are supposed to have at home, measuring glucose, ketones and importantly protein. Low and behold, the protein in my urine was at the highest measurable level and my mother and I went to the emergency room that evening.

At the ER my blood pressure was still 220/180 and the more exact measurement of my urine was showing macro proteinuria meaning the amount of protein leaking out through my kidneys were significant indicating severe kidney damage.

Now two weeks of exams as an in patient followed and after every single possible expert had had his or her say, a very wise older doctor said “you have kidney damage from poorly controlled diabetes, nothing more complex than that”.
After this diagnosis I was put on multiple drugs to halt and possibly reverse the nephropathy and told to manage my sugar very aggressively. My blood pressure was still elevated and my electrolytes poorly regulated and I was leaking protein through my kidneys.

For the first time over the 18 years since my diagnosis of type 1 diabetes I was affected by the disease in a severe and very concerning way. I went back to work after my stay in the hospital but a week later, when trying to read the paper in the morning, my vision was so blurred I called my retinal specialist for an appointment to examine my eyes. Kidney damage and eye disease often go hand in hand as complications of diabetes and I was very worried when I sat in the waiting room that same afternoon.

I was diagnosed with macula edema and severe, proliferative diabetic retinopathy that needed aggressive laser treatment to save my vision.
Now followed a period of laser treatments several times a week, on both eyes, each time rendering me blind for a few hours afterwards. My sister who lives in Barcelona came to see me, and came with me to one session and I could hear her crying when I was sitting in the chair while being “shot in the eye” with the laser gun.

My friends were concerned and my partners at the fund were worried. I kept going to work and even those times after the laser I would come back to the office in an almost pathetic way of trying to seem normal.
Before this period of physical decline, no one except my family knew I was diabetic, so it was naturally a shock for many to see me this way.

I continued with the blood transfusions regularly, tried to keep diligent blood sugar control although my sugars kept being volatile and treated my high blood pressure with the highest doses of multiple drugs to lower it. My whole system was disturbed and I was very nervous and stressed which did not help my recovery. I was told that I was a “walking stroke risk”, due to my blood pressure and was asked to avoid strenuous exercise and to try to “slow down”.

Finally, a wise friend of mine made me take serious time off. It was now the middle of June, and I asked to be off for the summer, which in Sweden is a time when people take between 4-6 weeks of holiday anyway. I tried to learn how to play golf, spent time with friends, ate healthy and watched an incredible amount of movies and caught up on TV shows. My future was uncertain but a plan was beginning to take shape in that I knew I had to get more directly involved in articulating the voice of patients and fighting for the acceptance of patients “at the table of decision-making” going forward.

It is now 9 years later, a new kidney, new pancreas and a pacemaker have been transplanted and implanted into my body, but I am back in shape and I am running a company, Lyfebulb, that intends to connect, inspire and impact people living with chronic disease.

I do not have to take insulin any longer thanks to the pancreas, and my blood pressure is stabilized and my new kidney manages well to take care of electrolytes and hemoglobin levels.

I will never forget that spring of 2007, but I have tried to avoid thinking about it since it was probably the worst time of my life to date. Thanks to my parents, sisters, my friends and colleagues and of course the doctors and nurses who treated me, I am alive and prospering. I hope no one ever has to go through what I went through that year, but memories from that time are beginning to trigger feelings of nostalgia instead of despair and I take that as a positive and a sign of human survival instincts.

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.

Jan 2, 2016: My 6 Year Pancreas Transplant Anniversary

Exactly 6 years ago, in the early morning of January 2, 2010, I was on the operating table, in Minneapolis, at the University of Minnesota, Fairview, about to undergo a pancreas transplantation. I was on the finish line of a very long race that had given me a number of curveballs on the way.

I was diagnosed with T1D at the age of 16, and had already undergone a kidney transplant 9 months earlier due to complications of my diabetes, and my eyes had been treated multiple times with aggressive, destructive laser therapy to save my vision.

After 20 years with diabetes, I had forgotten what it was like to live without thinking about sugar levels and insulin dosing since my very being was contingent upon injections several times daily, and glucose measuring even more often.

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In the late evening on Dec 30, 2009, the attending doctor on the Minnesota transplant watch called me with the message – “there is a match, you better get here soon to receive your new pancreas.” At the time my sister Anna and I were having a holiday cocktail and some appetizers, but we immediately paid the check and dashed home to prepare. I had a bag packed that just sat in my apartment, and I constantly carried the plane schedule to Minneapolis with me. It was an anxious wait that was about to end. I was excited and nervous. This kind of surgery is not done often, a few 100 procedures per year in the US, many of them in Minneapolis, which had made my decision to choose this location easy. I had spoken at length with my surgeon, Dr David Sutherland, who is a world-leader and innovator in the transplant surgery business.

Upon arrival on December 31, I was immediately taken to the transplant ward for preparations and soon moved into pre-op while waiting for the surgeons to get ready.  Dr Sutherland walked into my cubicle in his dinner jacket looking dapper enough to be on his way to a New year’s eve party and said “there will be no surgery tonight – the pancreas does not look good enough.” I was devastated, but completely understood his decision. There is no way one can undergo serious surgery, literally stapling a new piece of intestine and a pancreas onto my small intestine, without knowing that the organ is in good shape. I got dressed and went out to dinner, it was after all, New Year’s Eve 2009.

The following day after deciding to stay around for a while, since I was now on top of the transplant list, we went shopping in Minneapolis, but eventually decided to sit down for lunch and ordered oysters and champagne, trying to embrace the holiday season while being far away from home and suddenly we got a call. This was it – a new pancreas was on its way to Minneapolis, and I was the next person on the list. We finished our lunch, I did not eat any oysters, nor did I have any champagne, since I was now on pre-op fast, and then we slowly walked back to the hotel in the freezing cold. Going to bed before the procedure was hard, I was nervous the second pancreas would not be good enough either, and I started to realize what a huge surgery I was going to go through. My parents were in Spain at the time, celebrating the holidays with my other sister, Lisa, and her family, but they were notified and were already on a flight back to the US.

The pancreas came from a young woman who had died of an asthma attack, and I thank her family each day for their sacrifice. I tend to believe she is in a better place and is watching over me and our pancreas. Early morning, January 2, 2010, we were back in the pre-op room, and this time Dr Sutherland came in to see us in his scrubs and was smiling. “The pancreas looks good!”

I will never forget waking up after the 7 hr long procedure and hearing that it had gone well. The pancreas was already providing me with insulin and within hours the insulin drip would be shut off and I was for the first time in almost 21 years producing my own insulin. However, the pain, nausea and weakness were great due to the very significant surgery involved. This incision was not done by minimal surgery, but I have a vertical scar from my belly bottom to my pelvic bone, and the recovery took much longer than the kidney transplant 9 months earlier.

However, the change was even more dramatic than after the kidney – from the day after surgery, I have not needed one insulin injection and my HbA1c has been around 5, with fasting glucose levels around 70. The pancreas from the young woman completely changed the course of my life. I have become a healthier person both physically and mentally.

It is difficult to explain the joys of being insulin independent beyond the obvious ones, but it is really about the small things. Not having to carry around all my diabetes devices, to simply walk down the street and decide on a whim to sit down for lunch or a cup of tea with a cookie and indulging without having to prepare and thinking how much insulin is required, or going to sleep and not be afraid of waking up in cold sweat and having to address a hypo. Equally important is also the mental and psychological stability that improved for me after the pancreas, since my mood swings, unexplained fatigue and periods of sadness disappeared after correcting my glucose excursions. Most importantly though was my renewed confidence in a future. Today, on the 6th anniversary of my pancreas transplant, I am full of joy and hopes for tomorrow and beyond.

At Lyfebulb we want to bring this sense of well-being, love for life and self-belief to everyone with diabetes. That is why we work so hard in connecting people on and offline, and in working with industry to identify needs that truly make a difference to people with the disease and secondly to bring better products to people living with diabetes NOW.

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?

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

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!

 

The Donor’s Perspective

On March 12, 2009, at the Columbia-Presbyterian Hospital in New York, Dr. Rodrigo Sandoval extracted a kidney from my body. On the same day, Dr. Lloyd Ratner transplanted this kidney into my daughter Karin’s body. Her two kidneys were no longer functioning after twenty years of Type 1 diabetes. I will forever be grateful to Drs. Sandoval and Ratner for completing the difficult parallel procedures and for taking such good care of both patients after the operations. Columbia-Presbyterian’s helpful staff did a great job as well. In particular, I remember Nurse Wendy who was present when I woke up and later monitored our progress. Anesthesia is affecting the brain in surprising ways, and when regaining consciousness after the operation I almost felt euphoric, despite the unusually difficult and lengthy extraction of the kidney: When I saw Wendy’s friendly face and heard her say “how are you doing?” my answer was “fine, Wendy, and I’m Peter Pan”.

For me, the decision to donate a kidney was not difficult. When Karin told me about her problems with kidneys and eyes, and her fear to have to resort to dialysis, I concluded that a kidney transplant was her best option, and that among her close family members I was the prime candidate. I remember telling her so while we were walking together at a beach near our home in Westport, Connecticut, and I keep feeling good about the fact that I offered the kidney donation without having to be asked. Loving and protecting their children, isn’t that what fathers are supposed to do?

I clearly was the obvious choice as Karin’s donor although, genetically, siblings are the best choice, ahead of the parents. Karin has indeed two younger sisters, Lisa and Anna. However, asking them to volunteer ahead of me was out of the question, mostly because young women may give birth to children, and there is hardly a more stressful circumstance in life than going through pregnancy and delivering a baby. Nature has built in redundancy into our renal system, thereby enabling us to survive accidents, but going through pregnancy with only one kidney certainly increases risk, both for mother and child. Asking my wife ahead of me to donate a kidney never entered my mind. Actually, it kind of felt right to make a contribution that was almost comparable to what she did when giving birth to Karin, our first child. I know very well how hard it was because I was there and tried to help her through it.

Having answered the question of family priority, my only remaining concern was my physical fitness. Donors are supposed to be less than 60 years old and my age was 63, going on 64. Although in good physical shape, I could not be sure that the transplantation team was willing to accept my candidacy. Age increases risk of complications, and a kidney that no longer performs at a high enough level should not be transplanted.

Fortunately, I was able to pass the tests – and there were many. It was certainly a big advantage that I never have smoked in my life. However, I was slightly overweight and suffered from mild hypertension, requiring medication. My job at IBM was certainly stressful and it required a lot of travel, limiting my opportunities to exercise. Still, I was running regularly, usually 3 miles at a time, and was still capable of doing it under 30 minutes. My 15 minute stress test on February 26, 2009, was decisive: according to the cardiologist, my performance was excellent, removing the transplantation team’s concerns about my age.

In the meantime, Karin’s kidney function had deteriorated to the point that there was no more time to waste: Dr. Ratner felt it was time to set the date, and it was set for March 12. I was very much in favor of doing the parallel operations as soon as possible, for still another reason: Together with my good friend and IBM Research colleague, Ajay Royyuru, I had planned a trip to Darjeeling that would include a 5-day hike along the Singalila ridge, along the border of India and Nepal, with views of four of the world’s five highest Himalayan peaks, namely Mount Everest, the mighty Kanchenjunga, Lhotse and Makalu. Ajay and I, along with 3 other friends, had been dreaming about this trip for a long time and finally set the date of departure for May 3, 2009. There was no way I would miss this chance to visit the Himalayan foothills, so I had a second reason to get into my best shape and to get the kidney donation done at the earliest possible opportunity.

There were still important hurdles to clear, including a discussion with my surgeon, the incomparable Dr. Rodrigo Sandoval (a big soccer fan who admires the skills of Leo Messi like I do), conversations with a nephrologist (Dr. J. Crew), a compulsory interview by a psychologist, and the crucial medical imaging of my two kidneys by means of Single Photon Emission Computed Tomography (SPECT): the radio-active tracer (a Technetium isotope) is ingested and emits gamma radiation that is measured directly, thereby  permitting accurate tests of kidney function. It turned out that both kidneys performed at a good enough level, and the team felt that my mental health was strong enough to move forward. Needless to say, our family that has always been very close, provided the best possible support ahead of and after the procedure. My wife Ulla has always been at her best in crisis situations and our youngest daughter Anna is an extremely caring and good-hearted person. Finally, our second daughter Lisa, who is living in Barcelona, Spain, and was actually pregnant with her second child, made the trip to New York and teamed with her mother and little sister Anna through the difficult time during and after March 12, the day of the operation. Lisa is as strong as a rock, in particular when her family is at stake.

For my wife, the hours of waiting on March 12 must have been particularly difficult. We left Karin’s New York apartment at around 6am, my anesthesia was performed around 9am, and it took until 4pm before Drs. Ratner and Sandoval informed my wife and daughters about the positive outcome of both operations.

My recovery after the operation was quite quick. I did not experience much pain and was released from the hospital into my family’s care quite quickly.

Karin, however, had to struggle much harder, because the newly inserted kidney needed a few days of adaptation before it started doing its job. We were all quite nervous during this waiting period, it would have been such a disappointment to go through what we did together and then having to accept failure. However, the medical professionals at the hospital assured as that we needed to be patient and that it was quite normal to experience a delay in the startup of a newly transplanted kidney.

Finally, “Pisse-Nisse[1]” started working, Karin started feeling better, and our family was back to having fun and making jokes.

Karin’s recovery was much slower than mine, but she soon felt better and stronger than during the weeks prior to the transplant, when her kidneys no longer performed the important functions of cleaning the blood and regulating blood pressure. She was able to get back to her work at Johnson & Johnson, where a great number of very nice colleagues had rooted for her and sent her beautiful flowers during her recovery at our home in Westport, CT.

As to myself, I went back to work after less than 2 weeks, started running on March 28, and participated in a warm-up hike for our Himalayan trip as early as April 12, one month after the operation.

On May 3 I boarded a plane to India and arrived at Darjeeling on May 5, along with Ajay and friends. It was a wonderful experience hiking the Himalayas. Dr. Sandoval had told me that there was a good chance I could do the trip and I did not want to disappoint him.

On the first day of the hike from Darjeeling to Sandakphu and Phalut, on the Singalila Ridge, we arrived at a Buddhist Monastery. I purchased the largest candle and a young monk lit it for me. Figures 1-4 below show how our hiking team, a young monk at the Meghma monastery, and how I held a picture of Karin and myself next to the candle. My friends and the monk joined me in praying that Pisse-Nisse would like his new home and do his job faithfully for many years to come.

Starting in 2010, every year on March 12, our family is getting together and celebrates Pisse-Nisse day by eating well and drinking well. Pisse-Nisse thrives on water, so he always gets lots of water on his anniversary. We have done it 6 times so far and I sincerely hope we will continue for many more years. Lisa is not always able to join, but we talk to her and use “What’s Up” to send her our pictures and to receive hers and Ingrid’s and Octavio’s and Busolito’s[2].

So far, I have talked about the deeply personal part of my kidney donation.

Let me add a few thoughts about the current system in the US (and most other Western countries), and what could be improved to deal with significant organ donation bottlenecks.

Many patients experiencing kidney failure have to receive dialysis. They are unable to receive a kidney donation because there are not enough potential donors. For ethical reasons, it is not possible for patients to pay donors for their sacrifice. The most frequent source of organ donations are therefore the relatives of patients.

There are other countries where such ethical considerations are set aside – for example Iran – and in those countries there is no longer a bottleneck in kidney donations.

I strongly feel that new ways should be tried in the US to encourage living donor organ transplants. Instead of paying donors for their organ (as is done in Iran), ethically acceptable ways of incenting donors should be found, such as providing free healthcare, paying for a donor life insurance, etc.

In addition, I think there should be more studies done of donor health after the donation. Before my donation, I was told that my life expectancy was still about equal, that I could buy life insurance without a penalty, and that my remaining single kidney would start working harder and achieve close to 80% of the previous combined workload of both kidneys.

After the operation, there was not much follow-up. There seems to be no real interest in monitoring and studying the health of kidney donors. For example, I have not seen any research results regarding physical performance before and after the donation. In my case, I am clearly seeing a 5-10% drop in lap times when I’m running. It’s not that I mind very much – at age 64 or 70 it really does no longer matter how fast one is running a mile. However, I have not found a doctor that can give me a clear answer when I’m asking about physical performance with one kidney versus two kidneys.

Creatinine values are higher with one kidney, that’s all I am told, but how are Creatinine values related to physical performance? How are the heart and the lungs impacted by the loss of a kidney.

Aside from such second order problems that are mostly caused by scientific curiosity, I am doing very well since March 12, 2009. Some people call me a “hero”, others just tell me they would do the same, without hesitation, for one of their children. I believe them. And whenever I meet Karin and give her a hug I have this strange feeling that a part of me is inside her and I’m hoping and praying the Pisse-Nisse will do his job and continue to make me a proud father, for as long as I will live.

 

[1] to understand the meaning of this name (given by Lisa) you have to learn Swedish!

[2] Busolito or Octavio Jr. is her (currently) 5-year old boy, a huge FC Barcelona soccer fan like his grandfather

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