Those of you who are regulars here at www.diabetic-lifestyle.com know that after I wrote an article on the pump, I decided to get one for myself. As with any new technology, there are ups and downs in how a person will accommodate to a new product's use. But right up front, I want to state that having the pump these last few weeks has made my life significantly better. I'll explain later. If you are considering a pump do go back and read the first article and then this will make more sense.
Why me? Why now? I have had diabetes since my 41st birthday and always prided myself on how well I both understood this disease, and how well I took care of myself. As the years wore on, however, I developed hypoglycemia unawareness and my life became more and more difficult to manage. Over the years, I would talk over getting a pump with my endocrinologist and continued to read everything I could about research on an artificial pancreas which would, as a natural pancreas, be able to provide insulin needed 24/7 with no finger pricks, no fear of high or low blood glucose levels and in reality make my diabetes less of a time and thought consuming disease. So why now and me? One can only be rescued so many times in dangerous or semi-dangerous situations when blood glucose levels fall precipitously, with no warnings. My life is full. Travel and family outings with young grandchildren are the joys of my life. I wanted others to trust that I could be trusted to be OK. That look! We all know it. After a hypoglycemic attack, your friends are staring and you feel like the biggest"_______" ( put in your word), in the world. Those who don't understand diabetes may blame you , others who understand worry, and me, I just lose time, wash my hair, and try to forget, but I never do forget. The fallout feelings can only be buried so long. Why now? Because I don't see an artificial pancreas on the market in the next year and I needed to know I would be safe and healthy.
When I went to the doctor this time, we both agreed that it was time and he gave me two videos, each by a different company. I went home, wondering about my decision, and watched them both. Both my husband and I called around to get the scoop. Everyone reported that both were good and to not sweat the differences, which were minimal. One was waterproof which parents tend to like for active children. Mine is constantly being upgraded and in fact, I will be getting a newer one this summer. It is my impression, not having the specs, that it will be even smaller than the one I use now, and that will be small.
I made a decision, and then relayed that to the doctor's office. Within a day or so, I received my first call from the manufacturer. The people who called were easy to deal with and quite thorough. They needed much information about me physically so that the length of tubing would be correct. You wouldn't want your pump to hit the floor if you drop it by mistake. More than these facts, the company was responsible for getting my insurance company to agree to pay their part. One of the reasons that I had put off getting a pump was that I thought if it was so good, why didn't all type 1 diabetics use one. The answer is complex.
First, you need to be able to take care of the pump, change the set as needed, program the computer, and take your blood glucose levels many times a day. The second reason must be that these things are expensive to purchase and, I assume, to keep going, so without good insurance you might get a very large bill. Mine is what I'd call significant even though the insurance will pay the vast majority of the bill. After being told how much our insurance would not cover, I hung in there even after the initial "sticker shock," and within a few weeks a large box came from the manufacturer, which I did not open. I did not open it because I was to be trained at my endocrinologist's office and when I called for an appointment, I was told to hold off until after the first class. I did.
My first class was really two. First I met with a dietitian who explained carbohydrate counting. I brought her an advance copy of our newest book, The Joslin Diabetes Healthy Carbohydrate Cookbook that I had just received from our publisher, Simon & Schuster. That lesson ended quickly and I went in with the trainer. That was more interesting, at least for me. The night before I had been asked to watch the video that came with the pump and I had. It was easy to follow, but foreign. Now I was sitting in a small office and for the first time, I saw my pump, the Sof-serter, the tubing etc. and I tried to listen to everything that was said. That's hard when you are coping with your own feelings of apprehension and excitement and your husband is asking medical questions about you and this new "thing". I went home and waited for the next day when I was to actually begin to pump insulin-again with feelings of apprehension and excitement.
One o'clock came whether I wanted it or not, and once again I was sitting in the trainer's office. She really is a caring, nice woman and obviously has gone through training at the two manufacturers' that they use. With manual in hand we went through the process of filling the reservoir syringe. I had brought a new vial of Humalog, as I would not be using any long term insulin again. "Easy, a piece of cake", I thought as I filed the syringe to the level needed for three days including the small hourly doses of "basal rate" and the proposed amount I would need for meals plus an amount to prime the pump and tubing.. We had already gone over the programming screens once more and now we were into setting the time and date. So here we were and I was getting closer and closer. How do children do this? Now let me stop a second and share with you that I was frightened about only one thing and that was using the Soft-serter which with a needle inserts a short tube into your abdomen or stomach or wherever you and your educator decide to insert the tubing.. I hate pain, and I didn't know what to expect although I knew it could not hurt too much. We were ready and I did it and it does not hurt at all, not one little bit. I primed my pump correctly, and with the infusion set in place, I was ready for any last questions. Both my husband I had some, like what do I do when I want to shower, how long of a bath can I take off of the pump, or how long of a swim can I take? What happens if I need help and the office is closed? How do I use the remote programmer? What is this square wave bolus and why in the world would I want to suspend the pump? I know I should have gotten this information before, but to tell the truth, I was thinking about other stuff, like "Can I do this?" so now I got a crash course and went home. It was Friday afternoon.
The first thing I did was to call my friends and family to report on the pump. Then because we were going out, I went into the shower and to my dismay when I got out, my infusion set was gone. What to do? The doctor's office was closed and I should be able to do this, right? I called the manufacturer and got the only person who was on her way home and really didn't want to deal with a type A personality on a late Friday afternoon. After she hung up, I reread the directions, got it right and went on with my evening. Boy, was that easy, and with each time I change the infusion set, it gets even easier. At the time of my two week visit to the educator, she asked me what had happened. I told her the tape she had used gave way, but that I had suffered through. I told her the pump had changed my life and she said. "I told you so". And finally, I told her I was allergic to something in the tapes and showed her the sites. Within a few minutes, she was on the phone with a friend in the OR and wonder of wonders all I needed was an over the counter cream which stopped the itching and blisters. These were probably due to yeast on my skin; they occur in the OR with regularity. I'm now fine and the fingernail marks are fading so by this summer I'll be able to wear a bathing suit of my choice.
So what do I have now that I didn't have before when I was giving myself 4 to 6 shots a day? Do you remember the medical student I wrote about in the article on the pump a few months ago? I feel much as he must have. I have freedom. I have the freedom to not eat a meal. Imagine that. Humalog had helped me gain some weight and was having difficulty getting that extra 15 pounds off. I wanted back into my size 6 jeans and would you believe, the first week, with exercise and diet, I actually began to lose. Happy is not the word for it. I feel normal, like my friends who are always on diets and always loosing a few pounds. At the birthday party I gave for my husband, someone actually told me that I looked better. This was not weight but just me. I've had others to say the same. My blood glucose levels are no longer falling into dangerous levels. I have more energy because of that. We all know the effects of blood glucose levels that fall and then rebound. I go on long hikes into the spring budding hills and vales of our state and I am not afraid of getting caught someplace without a snack. I am not losing brain cells with each attack and I am not stressing my heart. I am living a more normal life and I wish I had done this long ago. I continue to read everything I can about research into an artificial pancreas, but for now, I am happy and feel confident that my diabetes and me are under better control than before.
Once more a pump is not for everyone. You need to be motivated. You need to be OK with checking your blood glucose levels frequently. That first 2 weeks I woke each night at 2:00 am to take mine to make sure the basal rates were correct. I had a new baby, me, who had to be tended to, but that is over. I sleep well, and my life is, as I stated before, in my hands with the help of this small pump.
If you have any questions, e-mail me and I'll try to answer. Or, talk to your care givers. In our last article we gave you addresses on the web for "pumping" sites and they also have a great deal of information. Good health and good days.
BSP
