Chronic Illness  
 August 12, 2016

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.