2011-09-12

Insulin Pump - My Story

Sidenote:
I was moving over the last few days, which should explain my relative silence during that period. I have many exciting updates to provide, each in their own due course. The first of which appears right now!

My Experience With an Insulin Pump
After less than a month (and a little bit of arguing with my health care team), I have put an end to my insulin pump therapy. Given that this is in part a diabetes blog, and that I have written extensively about my experience with diabetes, providing recommendations to others from time to time, I feel somewhat obligated to put some thoughts down regarding my experience with the insulin pump. 

First of all, I have to say that I think insulin pump therapy is right for some people. I do not think it is "all bad." Who I believe should be on the insulin pump is something I will get to in a moment. First, I would like to describe my own experience in detail.

My experience on pump therapy began the night before I was attached to the pump. Because it would be dangerous to use a pump while there is long-acting insulin in one's system, I had to forego an injection of Lantus the night before. My blood sugar skyrocketed to my highest-ever reading on record (post-diagnosis). I felt terrible. Having blood sugar that high is never safe, and I felt that my body was in real danger.

At any rate, I made it to the diabetes clinic in one piece the next morning and began my pump therapy. My nurse thought it prudent to initiate therapy with a basal rate equivalent to about 10 units of insulin per day. By the time I ended my pump therapy, I was on 14 units. For those of you unfamiliar with basal insulin, let me tell you: those four units make a huge difference! The fact that I had to titrate up over such a long period of time really discouraged me during the first couple of weeks of therapy. In my opinion, starting me off on such a small amount of daily insulin was the wrong decision. My blood sugar was high all the time.

At long last, I became fed up with having high blood glucose levels all the time, and I embarked on a somewhat reckless path of going for a 15 minute walk in the morning while my body still contained active bolus insulin from breakfast. I did this again in the afternoons, after lunch. Two 15-minute walks (very brisk), followed by a heavy workout in the afternoon. After weeks of being unable to work out due to high insulin levels and a general "run down" feeling, I brought my average daily blood glucose reading down from over 11.0 mmol/L to under 8.0. That's significant! It was also a lot of work. 

On top of that, a major part of the drop in average blood glucose was due to repeated daily hypoglycemic or near-hypoglycemic events. I had finally achieved somewhat normal blood glucose readings, only to discover that my diabetes was out-of-control. I felt low all time. 

Then, on one bad night, I unexpectedly dropped from a BG reading of 6.9 to one of 2.5 in twenty minutes. For my body and my diabetes experience, this is unheard of. It was the most horrible, violent hypoglycemic event I have ever had. I felt like I had reached the bitter end. When it was finally over, I couldn't get it out of my head. I was terrified of exercise, scared to take my mealtime bolus, worried that any small level of physical activity would plunge me deep into a coma. This was not entirely a fear-induced state of mind. Simple, every-day tasks like shopping at the mall or packing boxes were enough to send me into a low. This may be the experience of some diabetics, but prior to my going on insulin pump therapy, it was not my experience.

To make matters worse, I couldn't exercise. I tried running, by the pump would send me low every time - even if I disconnected it entirely. If I did both strength training and cardio, I would have a guaranteed low. If I only did one or the other, I wouldn't be in shape. My physical fitness deteriorated. Aiding in that process was the fact that simple foods like fruits and fats were wildly unpredictable on the pump for me. One banana - less than 30g of carbohydrates - would spike my blood sugar over 16 mmol/L even if I accounted for it perfectly. Sandwiches became a problem. Fatty foods became a problem. In short, eating became a problem. The only foods that were in any way predictable for me were whole grains and dairy products. Don't get me wrong, I think both are important parts of a good diet, but humans need vegetables and fruits. 

My diet was deteriorating, my fitness was deteriorating, and my blood glucose was out of control. At long last, I contacted my health care team and told them I was ending my pump therapy once and for all, and returning to four-a-day injections of Lantus and Humalog.

At Odds With My Health Care Team
When I informed my team about my decision to return to daily injections, they literally argued with me for nearly two hours. 

I tried to explain to them the following:
  1. I was experiencing higher highs and lower lows than ever before. In particular, the lows were deep, dark, and evil and I was starting to become afraid of them.
  2. Food was unpredictable on the pump.
  3. Exercise was unpredictable on the pump.
  4. My average blood glucose had not improved beyond pre-pump levels.
  5. Being on the pump was a hell of a lot of work.
  6. My pre-pump therapy was working for me.
Considering those facts, I could no longer see the benefit of remaining on the pump. If something works, and you have a chance of experiencing a small improvement at a great inconvenience, the marginal benefit is extremely low. This was and is my belief regarding the pump.

Could I have further altered my behavior and tweaked the pump in such away to capture even better control of my blood glucose? Yes, I think I could have. The problem is that my whole lifestyle was changing from being an active, healthy man with a good diet and an excellent attitude toward diabetes, to being a man who hardly exercises, eats poorly, and lives in constant fear of a severe hypoglycemic event, or else running blood sugar so high that I might as well not be taking any insulin at all. 

I don't want my lifestyle to change. All I want is blood glucose control. I can get it on injections. To get it on the pump would require a lifestyle change I'm not prepared to make. My BG would improve, but every other bio-marker I have, from cardiovascular health to digestive tract health, would worsen. Who wants that? 

My nurse and dietitian, however, remain convinced (as far as I can tell) that I simply hadn't had an adequate "adjustment period." According to them, short-term periods of high blood sugar "are not a problem." They tried to convince me that a lot of people like me have better control on a pump, that I can avoid injections, that things will be better once I get through the adjustment period.

To that, I have the following replies: First, I don't dislike my injections. They honestly don't bother me. They aren't painful, and I don't feel like a social outcast injecting before meals. Second, my diabetes wasn't out of control on injections. If I really struggled to maintain blood glucose control, I could see their point; but I'm fine on injections, so why bother? 

Thirdly, though, is something very important...

Health Care Practitioners Don't Get the Full Story
Since my diagnosis, I have been accosted by doctors, nurses, educators, experts, interns, students, pharmaceutical marketers, and all other kinds of diabetes "stakeholders." Every conversation with each of these people has lasted about fifteen minutes on average. Fifteen minutes speaking with any one person, and then it's rush, rush, rush, off to the next health care practitioner. No one sits down and explains things medically. No one is interested in the complicated questions or any kind of individual care. No one seems to have time.

Therefore, the only one getting the full story is me. I'm the only one who hears from one person that "running high blood sugar in the short term is no big deal," and from another person that "diabetic retinopathy isn't caused by high blood sugar, but rather by large swings in blood glucose."

One person tells me to check my blood sugar no less than five times per day; when the next person hears that I am obeying the orders of my doctor, they say, "Wow, you test a lot! You should be on a pump!" One person tells me that I'm in an "adjustment period," the next person tells me I need to change the course of my therapy radically.

At all stages of the game, health care practitioners are attempting to steer me into the one path approved by "guidelines." Individual choice? Individual care? Individual experience? Forget about it. 

This is a systemic problem. It's not the doctors' "fault." They are handed guidelines, and so they make use of them. This is the way the system works. They are doing things exactly the way they know how.

The problem is that if you are someone like myself, who doesn't fit into the box, you end up being at odds with your health care team, which is not a comfortable place to be when you have a serious, chronic illness.

Conclusion
Well, I have written a lot about this today. I plan on writing more later. My experience on the pump has taught me the value of patient advocacy, and I am considering becoming a more active member of my local chapter of the Canadian Diabetes Association. But we shall see.

Until then, I'll stick on my injections. 

By the way, all's well that ends well. The day after returning to Lantus/Humalog therapy, my blood sugar stabilized. I'm back to eating normal, healthy food, and I can even run again. In short, I feel great. This is the therapy that works for me. If you're a diabetic, always make sure you do what's comfortable for you.