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IDDT Canada

Points of View

THIS IS MY STORY

By Brenda Johnson.

May 2001

I am 50 years old and have been an insulin dependent diabetic for 31 years. On February 13 of this year, by some miracle, I caught the segment on Marketplace addressing the issue on Human Vs Animal Insulin. I taped this program and have since shown it to my family physician, pharmacist, family members and diabetes specialist. Without exaggeration, it has changed my life. I was shocked and appalled, yet elated. I cried.

I was shocked at the number of people (which is growing daily) experiencing the same effects as me. I have since gathered personal testimonies from Human insulin users from all over the world.

I was appalled to find out that the pharmaceutical companies are more concerned about their bottom line and their reasons for pulling animal insulins off the market are more of a business decision rather than a medical one.

I was elated to realize that I was not going crazy after all! I cannot state enough how fortunate I have been to have a wonderful, supportive husband, family and group of friends. There have been many times, believe me, when I wanted to give up the fight. They have all been to hell and back with me and I thank each and every one of them from the bottom of my heart for being there for me.

When I was diagnosed with diabetes in 1970, I of course was placed on beef/pork insulin and for all intents and purposes, basically sailed through the next 18 years or so with relatively few incidents of extreme high or low blood sugars.

In 1983 I went on the first insulin pump. I was using beef/pork regular insulin and again, did not experience too much difficulty until December 1983 when I experienced my first seizure. I persevered with the pump until late 1984 then gave it up. I found it too cumbersome, expensive and quite frankly felt I could control my blood sugars just as well with regular injections.

In 1989 my specialist at the time suggested I switch to Humulin. Like most diabetics, I trusted his word and was certainly taken in by the "new and improved" exciting new Human Insulin. Very soon after I switched, I noticed drastic differences in my reactions and my blood sugars were literally bouncing like mad. I no longer had adequate warning of impending lows. For example, all of a sudden my vision was impaired when my blood sugar bottomed out. I didn't just have blurred vision, I could not see at all! Everything was "washed out", like a bright, bright light. If I was trying to find something in the fridge to counteract my reaction, I could not even see or distinguish items in the fridge to help myself. I reported these incidents to my doctor. My complaints were met with complacency. He looked at me and suggested that I was not testing enough, that I was not controlling my blood sugars adequately, that I was to blame. Certainly it couldn't be the insulin! I thought I was going out of my mind. Needless to say, I switched back to beef/pork insulin and found things went back to normal immediately.

I continued to use the beef/pork insulin until 1996 when I discovered through my local Shopper's Drug Mart that it was no longer available. I reluctantly went back on Humulin; also thinking perhaps this time it would be different. How wrong I was! Again I reported unusual reactions; again my concerns were ignored.

This next portion of my story is just about the last couple of years of my life because the number of incidents that I have experienced in the last 5 years are just too many to list. I don't intend to write a book here, although lord knows I could!

One important thing I should mention is that in 1995 I was diagnosed with gastroparesis and for those who are unfamiliar with this ailment, it means paralysis of the stomach and entire GI system. This is a result of worsening neuropathy and cannot be reversed. As you can imagine, having this problem along with diabetes is disastrous. A "normal diabetic" has the assurance that say after eating lunch at 12, in roughly 4 hours, your food will be digested and insulin doses can be established to coincide with what you eat. I, however, have no guarantee that my food is going to be digested, not just in 4 hours, but even 8-12 hours. My gastroenterologist has told me that food can remain in my stomach for up to two days! This has had a horrifying effect on my diabetic control, because I simply do not know when the food is going to pass through. Complicating this, I always feel full, continually nauseated and have chronic diarrhea as a result. This factor, compounded by using Humulin Insulin has been nothing short of a nightmare.

In October 1996 I was forced to retire from my job in Home Care with the Red Cross, because it became apparent that I was not only a danger to myself, but also to those I was supposed to be taking care of.

Getting back to the last couple of years, I went on the new insulin pump in June of 1999, using Humulin R and hoping that I would establish better control. The new pump has better programs including what is called a "square wave bolus", designed specifically for people like me who have gastroparesis.

In August 2000 I experienced a sudden spike in my blood sugar and started vomiting uncontrollably plus had severe dehydration and chest pains. I ended up in ICU for a week. My doctor came in the morning after I was admitted and advised me that I had had a heart attack sometime in the previous 12 hours. I was stunned. HOWEVER, the interesting thing is that my cardiac enzymes showed a heart attack, but my EKGs were totally normal. My doctor paced around my room, scratching his head and saying "I just don't understand this. This is a mystery to me". He could not, for the life of him, understand how my blood tests showed definitive proof of a heart attack, yet the EKGs were all normal. Subsequently, I went for a 6-hour stress test in Hamilton, the results of which were normal. It is still a mystery today. Although I have no proof, I suspect Humulin insulin played a part in this near catastrophe and I intend to do plenty of research to get to the bottom of it. I began testing my blood sugars obsessively (8-10 times a day), but to no avail. I would still bottom out without warning.

In November 2000 I ended up in ICU again. This time, the problem was coming from the other end. Again, my sugar spiked suddenly, I was suffering from uncontrollable diarrhea and rapidly became dangerously dehydrated. As with the incident in August, my blood sugar was being monitored every hour on the hour and at one point my sugar was at approximately 26. My next test an hour later showed a reading of 5. At one point, the nurses came in to get me ready for a urine test. I had just tested and was at 4.8. Not two minutes later, I passed out on the bed and woke up to find them finishing injecting glucagon into my I.V. After 4 days in ICU, off I went home again.

In December 2000, just 4 days before Christmas I had a seizure. I had just finished eating supper when all of a sudden I noticed that I could not concentrate on the TV program I was watching. Suspecting low blood sugar, I went out to the kitchen and quickly downed two containers of Sunny Delight and a Dextrosol tablet. I fortunately still had the mental capacity to test myself and sure enough, I was at 2 something. Luckily, my husband was home. He gave me another juice and that's the last thing I remember. I guess I put my head down on the kitchen table and passed out. Because we live in a semi-rural area it took 15 minutes for the fire department and ambulance to get to me. They finally injected a dose of glucagon, but I was still not coming around. I do not remember anything at all until I came to half way to the hospital. I was in emergency until 2am and even by that time, my blood sugar had only risen to 7.

The frightening thing about this incident and many others I have experienced is not just the horrifying, unexplained lows and highs, the lightening quick onset of a reaction, but how difficult it is to recover from such reactions. A few months ago I experienced, in the space of an hour, three reactions in a row! It was one of the most frightening experiences I have ever had.

I am pleased to report that I have found a new specialist - one who will listen! I went off the pump in February and started back on pork insulin on April 23 of this year. I know it has only been a short time, but I am improving every day. I can once again recognize the onset of a reaction and treat it immediately. Knowing in my heart that I really was not going crazy has bolstered my self-confidence.

MY HOPES:

It is my hope, that by sharing my story with you that:

For those of you who are doing well on Humulin, I sincerely wish you continued success and good health. I hope that for those of you who have been diagnosed since the late 80's and have only been on human insulin (thus having nothing to compare your experiences with) that you don't accept unacceptable fluctuations in your blood sugars as "normal".

For those of you who are not doing well on Humulin, I beg you to see your Specialist and report your experiences to him/her and explore the options that are still available to you.

For the pharmaceutical companies who somehow fail to understand that there ARE tremendous differences between animal and human insulin I pray that as our numbers grow, they will be forced to listen to us and bring back the choices of insulins that we so desperately need.

For the all physicians, diabetes specialists, and anyone remotely connected to this problem, I hope and pray they will start to listen.

Brenda Johnson
1338 Effingham Street
Ridgeville, Ontario
L0S 1M0
Home Phone No. 905-892-0803 Home Fax No. 905-892-8853 e-mail bjohnson71@home.com

A Personal Note From Canada

By Lucille Radley who has three children with diabetes

Published in IDDT Newsletter July 1998

When we were first introduced to diabetes my husband and I read everything we could get our hands on in regards to this disease, its management, its complications and funding for research etc. It took only a few months of reading to make me realise that what I was reading was not realistic, nor representative of what life with diabetes was all about. I found the information very clinical, impersonal and cold. The ideal blood glucose levels were unattainable and you were made to feel like a hopeless jackass and an uneducated idiot if you did not restructure your lifestyle to their guidelines. As well, parenting skills were scrutinised and often criticised without the benefit of doubt nor supportive input. [This is of course how I felt towards the printed material I found, I’m sure others would disagree with me.]

However, I find living with three children challenging enough without having to carry any suggestive additional guilt around too. So I stopped reading and instead followed my instincts and focused my attention to the quality of life, both physical and mental, of my children and our family as a whole.

I found the internet was informative enough for my needs as well as the Diabetes Forum on Compuserve where I was dealing with real people who lived with diabetes and knew the dragon that it really was – always a threat to my children despite my best efforts. When your Newsletter first arrived I was a bit sceptical of what I would find but was thrilled to read for myself that my initial impression of IDDT was wrong. I enjoyed it from the very first glance and took great delight in re-reading it. These days whenever I am greeted with your Newsletter at our mailbox, I feel as if a friend has come over for a nice long chatty visit. I make myself a cup of coffee, sit in my comfy armchair and read it from cover to cover.

Your Newsletter takes up residence on our kitchen counter for a few weeks and it is enjoyed by the whole family, and friends who come over for coffee, then it is stored in a binder. I have suggested to my friends that for a small donation they could get their own copy but they prefer mine since it comes with coffee and cookies!