Jan 2, 2010 was the day of my pancreas transplant. This means I have been insulin independent again for exactly 10 years since my T1D diagnosis at age 16.
No words can fully describe how this gift changed my life for the better and how much the experience taught me about the reality of living with T1D. In fact, much of the foundation of Lyfebulb came from these insights: patients need patients and patients can be innovators. Two very important concepts that I only understood after my pancreas transplant.
I was diagnosed with Type 1 Diabetes in July of 1989, and the disease had never fully become a part of me. I hated it from the beginning, and never worked to embrace it. However, I did work hard to study the disease, both as a student of medicine and science as well as a businesswoman later on in my career. I wanted so desperately to get rid of it and I also refused to let it limit me. But it did. I realized how much I was truly burdened by this chronic disease once I was free from having to constantly think about my blood sugar and insulin dosing.
Diabetes took something from me that I never got back, even after regaining insulin independence through transplantation, which was my innocence and belief in happy endings. However, it taught me that fighting would forever be an essential part of my new reality and that being different was always my destiny.
Ten years ago on that morning in January, when I was on the table waiting to be put under and cut open, I had no memory of what life looked like without T1D. Almost 12 hours later, I woke up in great pain but, for the first time in quite a while, was already producing my own insulin that started to heal my failing body.
When I was discharged from the hospital, thus began my road to recovery. I had already been through one transplant nine months prior (a kidney from my father), so I was put on the same drugs, and was in better shape than I was before my first transplant. Only 10 days before my pancreas transplant, I had passed out and hit my forehead on the dishwasher corner, which led to a broken nose, cracked open forehead, and the loss of a couple of teeth. This accident was due to my T1D, so the transplant was extremely urgent. Although my face was still bruised from the accident, I was ready to fight for my new life during this period of recovery and each day, I got a little better.
The first few days after the surgery, I was weak, but I made a point out of walking a little each day and making careful food choices to gain strength. I had learned from my kidney transplant that there were certain foods that were better with the immune suppressants. These particular foods helped my stomach to handle the heavy drugs so I had a lot of toast, bananas and soup. I needed gentle and mild sustenance so I avoided spice and anything raw or fibrous. Interestingly, my diet has not changed much since my time with T1D. I still cannot eat foods like pizza, pancakes, pasta or rice. Although I’ve slowly added sweet potatoes and some bread to my diet, the psychology of living a low-carb life does not pass easily!
After a week, I could leave the hospital and after two weeks, I was cleared to fly back home to New York from Minnesota where I had my surgery. I remember it being such a happy trip back, with a newly felt freedom where I had no need for insulin or glucose testing. I felt like my life was starting again!
Only one week later back in New York, I started to feel tired and very weak. Something was clearly not right, and I went to the hospital late at night after speaking to my physician. Sadly, I had an infection and was readmitted to the hospital. I was now at Columbia Presbyterian, since that is where my local transplant care is based. It took another week before they isolated the cause for my infection. It was an abscess close to the pancreas, which needed to be drained and cleaned. To do so, I had a tube inserted into my abdomen and a bag hanging from it, which collected the nasty bacterial fluid 24/7. This went on for an entire month and it came with a period of intense pain. Every time I spoke, moved or coughed, it hurt. Laughing was impossible! After the tube was removed, marking the end to this difficult time, I was on the mend and my journey toward health was back on track.
Today, 10 years after that incredible day, I think back to the family whose young daughter died and the decision they made to donate her organs, which changed my life (and most likely many others’). I cannot imagine how they must have felt that day, but since I now have a little daughter of my own, I understand the emotions that come from seeing your child in pain.
To this family: I thank you from the bottom of my heart. I promise you to take very good care of your daughter’s pancreas, to do as much GOOD with my life as possible and to never, ever take anything for granted. I learned too early that life is a constant fight, and I know too intimately the fear that comes when you are close to losing it. If the kidney transplant saved my life, the pancreas from your daughter made it worth living again.
Somewhat symbolically, today is also the day for Lyfebulb, the company I co-founded five years ago, to enter into the transplant space. We are already in six other disease areas; Diabetes, Cancer, MS, IBD, Mental illness and Migraine. We will be building a community online and in-person for people living with transplants and their care partners. We will be searching for the best new, innovative solutions to improve quality of life by listening to people who have been through the process of a transplant. I am proud to make this announcement since it is a population that, so far, has not had a real home and where innovation is far from fully exhausted.
Happy New Year AND New Decade!