13, pumping and competitive swimming -- Sara's story as told by Mom, Pamela Myers-Payne
Our daughter Sara was diagnosed as Diabetic at the age of 8 while we were on a New Year's Eve vacation at Disney World in Florida. My husband is an Emergency Room Physician and I was an RN. Needless to say we totally fell apart like any heart broken parents. Sara had always been an easy child until first grade. She then started crying often, hated school and was always tired. Her normal personallity seemed to be drifting away. Sara had also started swimming competiviely at the age of five, because she wanted to get the pretty ribbons. She was a natural at this sport. She had a very hard time competing the summer she turned eight. It was a struggle for her to complete the season with any enthusiasm. When she asked to take off winter swimming we thought a break was a good idea to let her batteries recharge. We discovered her diabetes December of her second grade year. Sara was still good enough in the pool to be asked to swim for her school team as a second grader even though the team started at the third grade level. There are so many things we mourned when Sara was diagnosed, but the most was the loss of the happy, pleasant, upbeat child she had once been. The stress of feeling bad most of the time, the shots that hurt, the strict scheduling of her life, and the finger sticks all seemed to drain some of the joy from most daily activites.
Sara is a trouper in ways that can never be measured by "normal" kids and parents. By June of that year after only six months of adapting she asked to train for swimming again. We could not find any Diabetic swimmers to ask how this would work. We were very lucky to have two people who were willing to help. We found a Pediatric Endocrinlogist at the Cleveland Clinic, an hour from our home, who had older patients who swam competively and he completely supported us. He told us it would take extra work on our part and Sara's to do this sport safely. The other lucky find was her coach. As I am sure you know you often find two sorts of folks in the "other" world. There are those who panic at the though of dealing with a diabetic child and do not want to take on the extra work and stress, and those who overreact and forget that this is still just an average kid with a health problem, not a science experiment gone bad. Sara's old coach fell into that blessed "she's jus a normal kid and that is how I will treat her." He said if she wants to swim then let's do it.
Coach Ed Burnsed had swum as a young man with another diabetic and knew that it is tough, but do-able. Sara went to work. He would give her challenges at the end of practice to encourage her to push herself into remembering how much fun she had trying to win. If she could do it the other swimmers would get out a few minutes early. Needless to say this also gave Sara a few cheering spectators.
It was very hard trying to regulate insulin shots, one to two hour practices, practice schedules that changed each night, and seasonally. If you want to talk about taking shots in the dark, try to manage swim meets when the excitement and competition stress levels throw everything into total chaos. Through all of this every year Sara was improving, moving up in the pack in her finishes. By the age of 11 she was a kid to worry about as a competetor, by 12 she was going to large swim meets and placing consistantly in the top 5. She knew her dreams in swimming could come true when at large championship meet a top swimmer looked over at Sara and commented that she wished she did not have to swim against her. Here she was, insulin dependent and making the competition nervous before they entered the water. That was a great day.
To manage her illness during practice was, to be perfectly honest, a hit and often miss endeavor. We had meal/snack schedules with a combination of carb, protein and fat for even glucose absorption, blood sugar checks before entering the pool, juice, glucose and a monitor near by. Usually her Dad or I would stay at the pool. We became good, but believe me it was very far from perfect. Sara's body never seemed to react the same way two days in a row. There were never any serious lows, and she has never blacked out or needed instant glucose. On occasion she has gotten out of the pool looking pale and worrying us for a few minutes.
Swim meets were tough. The range for her starting blood glucose level depended on the distance of the race, and how soon she would be in the pool again. Too high and she was uncoordinated and seemed to fight the water. Too low and the power just was not there. She would check her blood sugar before warm-ups, then between two and four times during the meet depending on how good her glucose levels were staying. We had to learn to adjust for the excitement reacton. Her body would release Adrenaline in response to her mental "revving-up" to race, and her blood sugars would shoot up. It would often mean three extra shots on competition days to maintain an adequate great blood sugar. Sara was willing to make this extra effort to succeed.
Sara has had high hopes for her swimming for several years. She wants to win for herself, but also to show other Diabetics and the rest of the world that this illness is in no way a deterrent to achieving sports goals and dreams. She began to feel this way when new Diabetic parents would call us to talk concerning their child's recent diagnosis. In every instance when we encouraged the parents of newly diagnosed children to make them get out and exercise we met with incredible opposition. It was as if this child was in a wheel chair and unable to move a limb. The thought of exercising, let alone something as strenuous as swimming and competing like Sara does was just blown off.
This is discouraging because we know first hand the incredible physical and mental benefits swimming has brought to Sara's life. Anyone who knows Sara and knows of her swimming while being diabetic never treats her as less than totally capable in any area of life.
Sara read about the pump in a Diabetes magazine in 1998. The pumper was a high school student. Sara immediately wanted a pump. This article was not encouraging for teens as pumpers as it was a new type of treatment even for adults. She was 12 at the time and the article was not encouraging. But Sara is not your usual kid. She badgered me to talk to Dr. Rogers. She had already shown she was very responsible.
She had an opprotunity to attend a state camp for outstanding math and science students as a fifth grader at Miami University, four hours from home. The camp, though loaded with above your usual intelligence math and science teachers and counsellors, did not have a nurse or doctor on site. Sara wanted to go so much we made a deal. If between spring break and the end of the school year she could learn to handle this illness with no back-up and no mistakes she could attend. The camp was willing to help. They had never had a diabetic student but had a counselor willing to keep close to Sara, call for help if needed and learn how to administer emergency aid. Sara met the challenge, of course. She went to the camp, never called us, handled everything perfectly and had great blood sugars. The staff were even amazed. When they would ask her if she had remembered to do something she had already handled it, even extra checks and snacks for game times.
She was determined the pump was for her. Dr. Rogers agreed the summer she turned thirteen. Last August Sara began pumping the first day of school. My only question is: Why did we wait so long?!! Sara loves the pump. At first it is an incredible amount of work. You must be able to interpret, without cheating, the amount of carbs your are eating, learn all the beeps and buttons etc.
The freedom Sara has found has changed her life completely. She sleeps in, and loves every minute. She can now have an ice cream cone without planning a day ahead. When she gets together with her friends, she has no problem eating that pizza. Oh, and thank-you, my fun, pleasant, just a great nice kid is back. I feel as if someone I loved moved far away for five years without the ability to contact me and has finally returned home. The pump gave us back a life of normalcy and spontaniety. If she has blood sugar above 160, we can tell in an instant. Amazingly Sara does not usually complain if we say "Check your blood sugar, you are acting grouchy." She knows often it is high. She now feels anything below 60, and her body lets her know. Before, well she just mostly could not tell until it was panic time.
How about the swimming? Sara has had her best year yet. Oh, it was very, very hard work adjusting to the hard practices and when to eat, how much to eat, when to turn down the pump, how much to turn it down. There is not a formula for this type of thing. It required meticulous record keeping, fine tuning every day, blood sugar checks all the time and at various times. The pay off is that Sara now can swim with fewer very low reactions. She swims full time. We learned how to juggle everything for Sara, what works for her. It was worth every minute of sitting at the pool, writing in note books, reading and trying different food combinations.
The regimen is easy now.
Sara tries to eat 1-1/2 to 2 hours before practice, takes her usual dose of Humalog (2 units per carb, adjusting for the current blood sugar), then turns the pump down to 10-20%, depending on her activity level before swimming. She checks her blood sugar again before getting in the pool. She needs to be in the 150 -180 range. If she is below that she will go low even with a sports drink. She has learned to remove her pump while swimming. She is working hard enough that she does not need insulin during practice. She checks her blood glucose after practice, and if 140 or above she takes a unit to cover the down time. Sara keeps a sports drink on the pool ledge and drinks some after each set. She still has evenings when the work out is too tough and she feels low and must get out to check her blood sugar and treat with lots of sports drink. She has found that juice is too upsetting to her stomache to swim on, and the fluid replacement is a better option than food.
She never leaves a practice due to low blood glucose level. She sits on deck and treats until she feels able to return. This is somehting Larry and I felt was important for Sara's mental strength. She needs to know that this illness may slow her down, but it never, ever needs to stop her. Retuning to the task and finishing is more important than finishing first. Once again we have a great coach who agrees and is willing to let Sara hang on the deck as long as necessary without criticizing, pushing or making Sara feel uncomfortable. Even if there are only ten minutes of cool down left in practice, Sara returns. We stayed with Sara at practice most of this past year while helping her learn how to judge and treat blood glucoses while pumping.
One of Sara's goals this year was to not miss a practice. She swam every practice, five to six days a week for six months. This was a goal that the pump made possible. Swim meets still require so much extra out of Sara, but with the pump the results are so satisfying she feels as if the work does pay off. Before, the extra work often felt as if we just spinning our wheels and playing catch-up.
Now, Sara is in control. She eats a meal of carbs, protein and fats about 3 hours prior to competition warm-ups. A blood sugar check 1-11/2 hours after the bolus helps to assure a proper dose. The blood sugar levels on race day need to be very tight and closely monitored for good performance. She does a blood glucose check before starting warm-ups. Then checks are done every 30 minutes one hour before an event. If the levels are needing more than a minor tweak she might check an extra time. This may seem excessive to you. Sara feels much better and performs so much better on competition days when the blood glucoses are maintained nice and stable. Fluctuations effect her physical and mental performance. It takes a great deal of mental focus to perform well and less than ideal blood glucoses have great effects on mental performance. Another bonus with the pump she does not need to stick herself with a needle to take a 1/2-1 unit of insulin to maintain the tight control, just pump.
Sara has acheived many goals this year she never dreamed possible. She has broken several age group team records, she went undefeated in the regular Y season, several firsts in local championships, top five in regional and the Five State Y Zone Championships and qualified for National Y Long Course Championships in two events. Not bad for an illness treated as a determent to attempting new and challenging endeavors.
That is the point of this long letter. Do not stop. Goals are achievable by diabetic kids if they are motivated and committed. They must work harder and accept days when things go very wrong, but the days things go well are worth the effort. I know that Sara feels more satisfaction than team mates who do not need to overcome a stumbling block to acheive a goal. Do not sit at home not trying. You will be surprised at the support from singularly intellegent adults who will encourage the diabetic child. Mostly, the support from team mates is amazing when you treat your illness as just a part of you, neither good or bad, not an excuse, just an extra hurdle, higher than some, not as tough as many. Sara's friends on team have been one of her greatest supports because she is treated as just one of them, no different.