In honor of my friend, Denise Higgins: “Being cured by a pancreas transplant isn’t as simple as one would think”

white flowersBy: Dr. Karin Hehenberger

In January of 2009, I was diagnosed with end stage kidney failure, after almost exactly 20 years with type 1 diabetes.  I was told that I needed a transplant and that if I went forward with the kidney transplant, provided I had a donor, I could also be placed on the list for a pancreas that potentially could cure my diabetes.

All this happened very fast and I was scared and quite ignorant about the process. Although I had studied medicine and worked in the life sciences industry my entire career, I was not familiar with the surgery and the medicines that I would need to be on for the rest of my life.  I did what most people would have done, spoke to my family, searched the internet, and reached out to thought leaders across the world for answers to my many questions.  Since I was in the unique position of working in the industry, and having a medical background, I had access to scientists and doctors all over the world, and I have always been a highly investigative person with a scientific mind, so my search was thorough and highly efficient.

What I had never done in the past was to speak to people who had been through the same experience. When I was diagnosed with diabetes in the summer of 1989, I did not speak to anyone who was diagnosed with the disease, but actually kept the information to myself, and asked my parents and sisters to do the same.  This time, I knew better, and actually asked my surgeons for names of people who had been through a double transplant – of which there were not that many!

Although there are about 17,000 kidney transplants done each year in the US, there are only about 100 pancreas transplants done, so finding a person with type 1 diabetes, who had had a kidney followed by a pancreas, and would be willing to talk to me about the procedures is not easy. I was fortunate enough to be introduced to two fantastic women, Tracy S. and Denise Higgins. Tracy lives in Connecticut, and was instrumental in getting me prepared for the kidney transplant, and guiding me through the issues following it. She helped me with what kinds of foods that my stomach could handle, and how to address multiple side effects that were rampant initially. Tracy remains a friend, and I hope we will see posts from her on this website soon!

Denise and I met several times over the nine months between the kidney procedure and the pancreas. She and I enjoyed lunches together and I was envious of her not needing to inject insulin.  She already had her pancreas, and was now living a life free of worries and I admired her.  She no longer had to worry about hypos at night, destruction to the eyes, and destruction of the new kidney.  I also admired Denise in her professionalism, since she was working in the financial industry and had made quite the name for herself. She was brilliant and kind – an unusual combination on Wall Street, and she was also so well put together, and exuded style and beauty on the outside and from the inside.

I will never forget the feeling of being insulin-free again.  January 2, 2010 was the day I received my new pancreas, and from then I have not needed exogenous insulin.  When I returned to work, two months later, I invited Denise to lunch, and we both enjoyed a delicious meal, without thinking about carb-counting or timing our insulin doses to the food service.  Over the years to come, we would meet over lunch and we shared experiences and when she asked me to refer a kidney doctor to her, I gladly introduced her to my doctor – David Cohen at Columbia Presbyterian.

In July of 2012, I turned 40 years old, and my two younger sisters decided to give me a big birthday party at a restaurant in NYC. They invited friends from all over the world to come and celebrate, and we had a fabulous evening of dancing, eating, drinking and talking. The theme was ABBA and the 70’s, since all young Swedish girls who grew up in the 70s and 80s had pretended to be either Anni-frid or Agneta , and knew all the songs by heart! Dancing Queen, Waterloo, Money Money Money… Of course, my friend Denise was invited and she showed up. That was the kind of person she was. Extremely reliable and loyal and with a kindness that was apparent to anyone who met her. Several of my friends told me how much they liked her, and Denise seemed to have a great time as well that evening.

In January of 2014, I started my company, Lyfebulb, to help people with chronic disease improve their quality of life. I reached out to Denise, since she was a natural to get involved, and I was eager to finally be working with her.  When I called her, I immediately knew something was wrong.  Her voice was weak and her tone down.  She was sick and in the hospital.  She had an infection she said.  I continued to reach out to her, but was not allowed to visit since I am on the same drugs that she was – i.e. immunosuppressive medications that allowed our transplants to be functioning well in our bodies.

This is the reality, it sounds fantastic to replace organs that do not work any longer with donated ones.    In her case she got a kidney from her sister, and I got mine from my father, and we both received pancreas’ from deceased donors; but to allow for these organs to not be rejected, we need to be on drugs for the rest of our lives that suppress the immune system.  There are natural consequences with these medications, including increased risk of infection/being less effective in fighting infections, and being more likely to develop certain kinds of cancers.

I had experienced the latter already through a mentor and good friend of mine who happened to be the former Chairman of JDRF – Jim Tyree.  Jim had suffered from T1D for many years, but still managed to become one of the most powerful men in Chicago.  He went through kidney and pancreas transplants but then developed cancer and passed away despite fighting until the very end.  I have myself experienced the consequences of the immunosuppressants already, despite only being on them for a total of six years.  Last year I contracted Salmonella typhii, while vacationing in the Dominican Republic, and ended up in the ICU due to sepsis.  I needed IV antibiotics for six weeks and it ruined much of 2014 for me, due to long term consequences such as clostridium difficile and weight loss making me tired and weak for a long period.

My friend Denise never got rid of her infection completely.  She fought for 14 months against the nasty bugs that caused her pneumonia, and despite the best medical care and consults from all over the world, she passed away May 15, 2015. I will not give up on my journey to help people living with chronic disease and improve their quality of life.  I have a special passion to improve the outcomes for people with type 1 diabetes and successfully eliminate this terrible disease.  Getting a pancreas transplant is only a bridge to a cure.  It is not a real cure.  Together we must identify solutions to provide everyone with a defective pancreas insulin-producing cells that can be implanted without the need for toxic immunosuppressive drugs.  This will not happen overnight, and it will not happen without team work across borders and disciplines.  When the United States decided to get to the moon, they worked on a plan until they solved the problem.  When they decided to create the first nuclear bomb, they reached an answer.  We need to address curing diabetes in a similar fashion.  There are no alternatives to success.  No pride, no territorial behavior, but relentless focus and clear leadership is required to win this battle.

Denise will forever motivate me to work harder and be a better person.  I will never forget her, and I will not give up until we have solved the riddle that is type 1 diabetes.

Karin

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