Sue from Pennsylvania

In 2000 after my husband Marc had knee surgery, I experienced for the first time what severe hypoglycemia looks like. After being cooped up in the house with Marc for over a week, our son came for a visit and I decided to take the opportunity to visit a friend who lived a few houses from ours. When I left the house, both my husband and son were sitting on our family room sofa watching television.

I was gone for no more than an hour. When I came home, only our son was on the sofa. I asked him where his dad was and he said that Marc had gone upstairs. I went to check on Marc and found him face up, half on and half off the bed. He was drenched in sweat and his eyes were fixed and staring. I tried to speak to him and got no response. I had no idea of what was happening. I yelled for our son who came bounding up the stairs and was as shocked by what he saw as I was. I reached for the phone and hysterically called 911. I was told that the EMS was on their way and I should stay on the phone with the 911 operator. I can remember yelling at Marc not to die on me because I really thought that this was happening.

I know the EMS came quickly, but to me it seemed like forever. They took one look at Marc and said that he was having a very low blood sugar episode. They gave him an IV and within a few minutes, Marc started to come around. He didn’t remember one thing about what had happened…he didn’t even remember going upstairs to our bedroom. This is what can happen when blood sugar dips so low. The EMS said it was at 39 which is dangerously low.

Until that day I never even knew that there was such a thing as hypoglycemia. Marc’s sugars had pretty much been under control since he was diagnosed in 1996. He might have had a mild low here and there, but nothing that incapacitated him. I can only say that my scare level was at its highest peak during this episode.

Needless to say, this terrifying incident was only the beginning of a long, long journey into the world of being the spouse of someone with Type 1 Diabetes and hypoglycemia unawareness. Over the years since this first episode, we have gone through many times when my panic level rose above and beyond anything that I have could have ever imagined. Matter of fact, there have been many instances when this first episode paled in comparison to what was to come. That will be a blog post for a later date.

Please welcome Sue from Pennsylvania who will be a regular contributor to my blog. Sue is the wife of a Type 1 diabetic and a crusader for the coverage of Continuous Glucose Monitoring Systems by Medicare. I will be Medicare age in four years and Sue is fighting the battle to help her husband and everyone like me who follows in his footsteps.

This is my very first blog post, so here goes. I am the wife of a diabetic. My husband has had Type 1 diabetes for over 15 years. He’s been on an insulin pump for most of that time. About five years ago, he got his first Continuous Glucose Monitor (CGM) and it made a tremendous difference in his life. He has brittle diabetes, hypoglycemia and hyperglycemia unawareness and before he got his CGM , would have episodes of very low blood sugar and in many instances, pass out because of this. With his CGM, this no longer happened.

In June of 2012, he reached 65 and had to enroll in Medicare. Since then, our life has been somewhat of a nightmare. His CGM, at that time, was over 2 years old and starting to act up. It no longer gave accurate readings and at times when he would go low or very high, it would no longer sound an alarm advising him to take immediate action. When his endocrinologist wrote a prescription for a new CGM, his insurance company denied payment because unlike our private insurance, Medicare does not consider it a necessary device and in their words it is just a “precautionary” device. We have appealed the decision and had a hearing with an Administrative Law Judge on June 26, 2013 and are now waiting for the Judge’s decision.

For five years, my husband was able to lead a normal life without the constant worry of going into a state of confusion or comatose, especially when driving. Now all that has changed and it’s put indescribable pressure on both of us emotionally and on him physically as well. Having these peaks and valleys in blood sugars makes him tired and out of sorts most days. Since he is gainfully employed and does quite a bit of driving in his job, it’s a constant source of worry that something awful will happen when he’s out on the road.

It’s so hard to wrap our brains around the fact that something that is so lifesaving to my husband (and myself) is being denied by Medicare. This is especially troubling in the face of the fact that our endocrinologist has gone to bat for us so many times during our quest to get a new CGM because she considers it of the utmost necessity for my husband.

Our hope is that our ALJ rules in our favor and that our insurance company upholds the Judge’s ruling. After this happens, my mission in life is to have Medicare change their guideline for Continuous Glucose Monitors.