9/2/08 ~ Living with Juvenile Diabetes through the years.

This week Kitty and Dr. Fallon will interview Parth Leach whose five year old daughter Nyssa was diagnosed with Juvenile Diabetes at the age of three. Also appearing with them in the studio will be Ms. Barbara Pancari who has lived with Juvenile Diabetes for the past “54″ years! Listener’s are invited to call in with their questions and comments. 

Parth & Nyssa Leach

Parth A. Leach is a 38 year old married mother to two girls, ages 11 and 5, and a step-mother to a 16 year old girl.. She and her husband have been married for almost 13 years. Their youngest daughter, Nyssa, was diagnosed with Type 1, Juvenile, Diabetes in November, 2005. She had just “celebrated” her third birthday the previous day. The day of Nyssa was diagnosed she began a regimen of finger pokes (7 or more times per day), carbohydrate counting (for EVERY morsel of food), and insulin shots (4 or more per day)…every single day. She endured Multiple Daily Injections (MDI) for just over 2 years before beginning to use an insulin pump in January, 2008. An insulin pump eases some of the daily issues associated with Type 1 Diabetes, but it is not a cure. Nyssa must be connected to her pump 24/7 to be able to receive her life-saving insulin. She is still required to test her blood sugar 7 or more times per day. The insulin pump is connected to her via an infusion site which must be changed every two to three days. She does not enjoy site-change days…but she does not want to go back to a needle with every meal. We must find a cure.

Photo Above: Parth & Nyssa Leach

Ms. Barbara Pancari

Diagnosed with diabetes mellitus at age 8, I am now about to turn 62 years old and have had the disease for almost 54 years. Quite frankly, it is very unsettling to see this statistic in writing.

As a child my disease was controlled with first one, then two daily injections: Lente and Regular insulin in the morning, and Lente at dinnertime. Although throughout my childhood I was a very conscientious diabetic who almost never “cheated,” I suffered greatly with the dietary restrictions. I was on a rigid diet of “exchanges” which left very little room for variety. I hated being hungry so much of the time and I also hated HAVING to eat when I was not hungry.

When I became an adult I made the supremely stupid and irresponsible decision to start eating more of what I wanted. My insulin remained the same, but I began eating more sweets and other “forbidden” foods when I should not have. Through all this, I excelled in high school and college, graduating in 1968 magna cum laude with a B.A. in foreign languages. I became a high school language teacher.

At age 21 I decided to ignore the protests of my parents and travel to Madrid, Spain to study for a Master’s degree during one summer. It was an exhilarating experience, and I had no significant problems controlling my diabetes. Or so I thought…but the cheating continued. By the third year I decided to relocate to Madrid and work for one year. I cannot overemphasize how strongly my parents opposed this move. They were terrified for my health, but I persisted and made the move in 1971.

I spent almost eight wonderful years living and working in Madrid for several multinational firms. I had never thought it possible that I could survive – successfully – in a foreign country, and I am extremely grateful for the experience. Although I had no major health setbacks, I must admit to continually being lax with my diet. In hindsight, I realize I have been extremely fortunate to have not developed complications much earlier than I did. I never tested my sugar – I’m not even sure when home glucose monitors became available – and saw my endocrinologist only once a year, when I returned to the USA to visit my family. My parents, incidentally, continued to be extremely opposed to my living in Europe and berated me constantly.

For several reasons – none related to diabetes – I decided to return to the USA to live in late 1978. I was 32 years old. By my late 30s I had developed hypertension and had already been treated for diabetic retinopathy in both eyes.

By age 50 I was being treated for hypertension and hyperthyroidism and early stage kidney disease. In all these years my insulin regimen had not changed and I still was not checking my glucose levels. When it became increasingly apparent that I was in very poor control, my internist recommended an endocrinologist, Dr. Edward Ruby of Jefferson Hospital in Philadelphia. Dr. Ruby prescribed taking only Regular at dinnertime, but also a third daily injection of Lente at bedtime. At first, I was devastated at the thought of an additional shot, but soon became accustomed to it as it formed part of my daily routine. For the first time I started getting my hemoglobin A1C levels checked. They were not good. Dr. Ruby advised going on the insulin pump, but I was extremely frightened at the thought of an accidental overdose, and the thought of wearing an apparatus was a complete turnoff.

By age 54 and realizing that a consistent fasting blood glucose level in the 400s was completely unacceptable, I made the life-changing decision to try the insulin pump, thanks in part to encouragement by Kitty Castellini. I chose the then-Minimed 508 model and attended training.

Again, I cannot overemphasize how frightened and overwhelmed I was with the thought of wearing and using the pump. After my training, which was five hours long, I was convinced I would never master it and cried bitterly in the doctor’s darkened waiting room. Fortunately, my then-boyfriend was with me and helped allay my fears. Notwithstanding, for the first few weeks I was on the Minimed hotline every single day with questions and concerns. But I did it. I mastered the pump.

Now, of course, I count carbohydrates like I should and I test my glucose about 12 times daily, or more if I’m having unexplained highs or lows. It doesn’t bother me in the least. My A1c results are much improved from pre-pump, but they could still be better. I have always been difficult to control and I continue to be, in spite of the more flexible lifestyle afforded by the pump. It is still a daily struggle, but at least I have the knowledge I am doing all I can to control my disease.

I have had serious complications, however. At age 43 I was diagnosed with one almost completely occluded (blocked) carotid artery. I had surgery at Jefferson and since that time have not had a recurrence, but it can happen. At age 56 I had a cerebral aneurysm that required a month-long hospitalization. It was a very slow recovery, since being on life support for a time had caused a horrendous infection in my throat that impeded my breathing for months. The incident occurred in September 2003 and the throat infection was not diagnosed until March 2004. I was referred to Jefferson’s Dr. Joseph Spiegel for laser surgery and had to wear a trach for several weeks following the two surgeries. They were successful, although my airway is not 100% clear and never will be. However, I am able to breathe normally, and am grateful for that. The entire experience of the aneurysm was the worst of my life, and I continue to live in fear of a recurrence.

I try very hard to control the hypertension and kidney disease, which seems to be responding to medication. Of course, I am very careful with any eye issues and see my retina specialist regularly. I perform aerobic exercise almost every day for 30 minutes. I hate it with all my heart but know it can benefit me greatly.

In summary, if I had to rank all the major problems in my life, diabetes would not be on the short list. I can see, I can walk, I can drive, I can go to work every day, and that is a privilege I do not take for granted. If I have to say so myself, I don’t even look that bad for my age!

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9/2/08 ~ Living with Juvenile Diabetes through the years.