About Kitty Castellini

I have lived with Juvenile Diabetes since the tender age of three. I learned at a young age that Physicians would end up to be my best friends as I had a life ahead of me of uncertainty. I remember watching my mother boil my needles and syringes on a daily basis as there were no throw away syringes at the time. Insulin came from animals, beef or pork. I remember be taught how to take my own injections using an orange and having fear. I cried a lot as a little girl as I tried to understand. There was no blood testing monitors out at the time to test ones blood glucose levels. Testing was done using a strip with a drop of urine placed on it, one would hope not to see a one plus to a four plus, ketones were tested using a test tube with urine and dropping a tablet in it. It would fizzle and you would have to give it a gentle shake and then match it up to a color chart.

As a young child I felt so isolated and full of fear not understanding this disease one of which I was told would be with me for my entire life span. Diabetes was rampant in my entire family. I decided to hide my diabetes from the world keeping it a secret from friends, wanting to be like others. Not having to try to explain something that I myself did not completely understand.

I had been on insulin for over 40 years, from multiple shots to an insulin pump. To testing my glucose levels from 15 to 20 times a day. I was determined to live a normal lifestyle and not be controlled by this disease. I went on and had a carrier in the Construction Industry. I was in control and enjoying life to its fullest so I thought.

Diabetes is a silent disease, slowly and unknowing the disease was eating away at my body, slowly destroying it from the inside. My eye sight was slowly being taken from me. I remember the day I lost my eye sight to this disease, August 8, 2001 at 6:00pm to be exact. One never forgets such an awful experience. It was no time at all that I had no vision in both eyes. I had what is known as Diabetic Retinopathy, one of the leading causes of blindness today among adult diabetics. I underwent many laser surgeries including three major eye operations to help restore my sight.

I also suffered from diabetic gastro paresis. A condition which made it difficult to digest food and very hard to match insulin to my food needs. This put me on a rollercoaster ride from high to low. I had gotten to the point of having what is known as hypoglycemia unawareness on a daily basis.

I had now reached a point in my life that I had no quality of life, I was just existing on a daily basis to survive. I remember asking God to take me from this life to relieve my suffering. It then dawned on me that God chose me as he knew that I could handle this, so my fight began to save my life.

I search out one of the best endocrinologist Dr. Joseph J. Fallon, Jr. who just happened to be a type one diabetic, one who completely understood me. How was I going to get this physician to look at me differently from other diabetics? To get him on the same playing field I had to show him that I was the most compliant patient he had ever had, however that was not enough. I needed his trust and honesty as I needed to give him back the same. To develop a Dr. ~ Patient relationship based on trust and honesty was the key.

Little did anyone know that I was in the process of putting together my own medical team looking for the best physicians to help me with my battle. My team consisted of the following: A primary care physician, nephrologists, cardiologist, retina specialist, endocrinologist, among other wonderful physicians, including a diabetic educator. My plan was to get these physicians to communicate with each other.

I started to research each part of my disease and understand what was happening to my body allowing myself to communicate with each of these physicians, to be able to ask the right questions, to understand, to help in my battle of diabetes. I was now at the point where I was completely comfortable with my endocrinologist to ask him about islet cell transplantation. He wasted no time in telling me about a clinical trial being done in Miami, FL at The Diabetic Research Institute, Miller School of Medicine, University of Miami. My endocrinologist directed me to a transplant team at Our Lady of Lourdes Medical Center in Camden, NJ. Who would be able to help get me in contact with The Research Center in Miami. He told me to take someone with me who would understand. I wasted no time in getting to this transplant center and did bring with me certified nurse who is also a diabetic educator. I was told that most likely I would have to wait until my kidneys had got to a certain percent of failure before I could be listed. They tested my kidneys only to discover that I had most of my own kidney function after 40 years of this dreaded disease. The transplant surgeon told me that I would benefit from a whole organ (pancreas) instead of islet cells. I had also been accepted for the islet cell clinical trial in Miami, FL.

In no time I was now heading to yet another state to see about a Pancreas transplant alone. I was accepted immediately in their program and was listed within days. I was on UNOS list for only nine days when I received my life changing phone call that I was what is known as a first match.

On August 13, 2004 I underwent a life changing/saving Pancreas Transplant Alone (PTA) done at The University of Maryland Medical Center in Baltimore, MD. Since my transplant my life has changed in many ways. I am now insulin free after living with diabetes for over 40 years. I no longer hide behind a disease that took so much from me.

Today I am a healthy vibrant young woman who is enjoying life, What diabetes took from me I am now taking back. To experience a cure through transplantation and live a normal healthy life is like having a small peace of Heaven in my Heart.

I pray for a cure and hope other diabetics will never have to walk in my shoes. I have made a personal decision to help educate others in the areas of Diabetes and Transplantation.

I have teamed up with my wonderful endocrinologist who stayed by my side and believed in me and helped to keep me inspired on this journey. We are in the process of writing a book which makes us the first “Diabetic Doctor ~ Patient” team to ever be published.

I have been blessed with the opportunity to travel the country to visit leading research centers and meet with world renowned scientist in these areas. Dr. Aaron I. Vinik from The Sterlitz Diabetes Research Institute at Eastern Virginia Medical School and Dr. Camillo Ricordi from The Diabetic Research Institute at The University of Miami School of Medicine. Since my transplant, I donate my time to working with patients to help them to understand their own fears, to give hope and be an inspiration. My story has been told around the world.

On August 21, 2006 I held a Rose Ceremony in Walt Disney World where people came from across the country to help me honor my donor and bring donor awareness to others. We honored our donors, all transplant patients, and those living with diabetes, along with the medical field. It was an emotional event for all who attended. I have visited dialysis centers, centers for the Blind and Visually Impaired all in an effort to help educate. This fall I will visit UNOS headquarters in Richmond, VA and tour the facility and hang a poem written by John Earle in my honor named “Life’s Celebration.”

To date I have encouraged over 300 people to become Organ Donors. I continue to be a guest speaker at many events and am always donating my time to raise money for diabetes research. We need a cure now.

I have been blessed with an outstanding Post-transplant nurse coordinator Mrs. Pati Walsh and wonderful Transplant Surgeon Dr. Nasser I. Youssef at Our Lady of Lourdes Medical Center who warms my heart with their continued hard work to keep me healthy.

I am grateful for my Gift of Life. It is a good feeling when I see the smiles on so many faces of those that I have touched.

I shall continue to help educate others to understand, as the more they know the more they themselves become empowered.

Please don’t take your Organs to Heaven…

Heaven knows we need them here!

Luv, Kitty