Wednesday, June 6, 2018

72 Years of Type 1, How is that Possible?

Good Health After 72 Years of Type 1, How Is That Possible?
In one of the diabetes support groups I was asked if I attribute my good diabetes health in my early years to my sugar free diet. My doctor, when I was diagnosed in 1945, told my parents that I should not eat anything sweetened with sugar. That was the only advice I had to follow for many many years. I was scared of sugar, and I followed that rule very carefully. We thought that as long as I avoided sugar, I would be fine! There was no mentioning of possible diabetes complications. There was no stress during those years, just aggravation with the lows I would have when I exercised too much, and the occasional seizures I had while sleeping. My mother prepared wonderful desserts sweetened with saccharin. I did not feel that I was missing out on anything important. I did eat a lot of food that had fast acting carbs, but I did not know that carbs had anything to do with diabetes until 1988. I think that avoiding sugar did help, but all the bread, milk, cereals, fruit and those desserts mother prepared were causing very high urine sugar. Those foods did not contain actual sugar, so we thought they were okay for me.
I did not have a meter to measure blood sugar until the mid 1980's. That was 40 years of not knowing my BS (blood sugar) numbers. I felt very good, and was very healthy, with no diabetes complications. In 1970 I saw a diabetes specialist for the first time. I was given a blood sugar test when I arrived at his office building. They were able to do an in-office test on the blood sample without having any device like we have now. When I entered his office he told me my BS was very high. I was given a book on diabetes. The book showed that my life expectancy was not good, and that I might not live beyond my 40's. That was the first time that I was depressed, and actually scared of my diabetes. I was so healthy after 24 years of diabetes, and there was an estimated 10-20 years of life left for me? We had two boys at that time, one less than a year old, and the other 3 years old. I thought I might be leaving my young kids without a father, and my wife having to support them. I did not sleep much that night.
We moved from Virginia to New York that year, and I started teaching math at a community college. Life was great, and we loved New York. I had tossed the book on diabetes, and it was of very little concern to me then. I had no worries about dying in my 40's. Well, maybe a little, but I did not discuss it with my wife anymore. We were making mortgage payments on our home, and I thought we should have mortgage insurance. A local insurance company had me see a doctor for an examination. He was a very old, retired doctor who saw people who wanted insurance with that company. The doctor told me to pee on a test strip in the office bathroom. The strip was a very dark green, almost black. That indicated very high urine sugar. I had been using strips of that tape for many years at home, and the dark green color appeared very frequently. The doctor said he could not approve me for the mortgage insurance. That decision was made based on one urine test. Really? So ridiculous! The doctor followed me to my car, parked in front of the building. He told me about a former patient who had very good health with diabetes, and then the following year he had terrible kidney problems and died. The doctor said that blindness and kidney problems happened with that patient in that year. He told me that I should prepare my will ASAP. He knew I had a wife and kids, so I suppose he was actually giving me good advice. I told Anita about my day, and we did not let it bother us very much. The earlier experience with the previous doctor made coping with this situation much easier. The next day I visited the local office of Metropolitan Life insurance. They got word from my local doctor, and realized I was in good health, with no diabetes problems. My mortgage insurance was approved. Our mortgage was paid off in 1995, and I was still healthy, with no complications.
I have often wished that I had not seen the doctor in Virginia, and that Metropolitan was the only insurance company that I asked for mortgage insurance. Things would have been so much better!!
Now I am 78 years old, with 72 years of type 1. I have some neuropathy, and my neurologist says it is severe. I feel some numbness in my feet and legs, but very little pain. I do not need any medication, so I do not think it can be severe. A misdiagnosis? I take long walks and workout at a gym, with no problems. I do not consider my neuropathy to be a significant problem. I do not have any other diabetes complications. I am no longer depressed about my diabetes. I have a good outlook, and am very optimistic about my future.
So what has caused me to live so long, and have such good diabetes health? I do think good genes has a lot do with my good health. There are many long term type 1 people like me with good health. Some of them have lived 75-80 years with type 1. Most of the 1000 participants in the Joslin Medalist Study have been found to have good health after 50+ years with type 1. I participated in the study in 2009, and again in 2017 I attended a Joslin Medalist meeting in Boston in 2011. Dr. King, head of the Study, announced that many of us have a special inner protection that helps prevent problems with our eyes, kidneys and nervous system. He also said that our hearts are not protected in that way, and that we should be very careful with our hearts. I had a nuclear stress test two years ago, and my heart is in great shape. Will this last for many more years? Dr. King and his research team are still looking for the source(s) of that special protection that so many of us, and so many of you have. If the source is found, maybe it will provide some kind of treatment that will prolong the lives of young type 1 diabetics, and enable them to live long healthy lives. 

Monday, June 4, 2018

Coinsumers Safety Guide

I found a consumers safety guide. There are  some very helpful topics there. Take a look.

Saturday, June 2, 2018

Pumping in 1978

The following article was written by a lady who started using an insulin pump in 1978. She gave me permission to post this.
(Written in 2003)
"I was thinking at some ungodly hour last night how much I love the current pumps, and how different they are from 25 yrs ago, and thought I'd actually specify what pumping in 1978 involved.
First off, there were no easy plastic cannulas you inserted at home. Initially, the cannulas were similar to IV drip cannulas, and yes, they hurt. Mine were inserted into my butt... but not just put in and left, no no. The whole procedure was done at the hospital and involved betadine swabbing, a local anaesthetic, at least two medical staff, the whole shebang/catastrophe. After the site was swabbed thoroughly and the local given (why do locals sting so much??), the doctor (usually an endocrinological registrar; if you were unlucky, a resident) would thread the cannula in, using a rather large introducing needle (21g I think), then back OUT, and in again. I have no idea why this was necessary, but at the time it was deemed to be so. If these sites had problems - infections - they exploded along the whole line. I had one infection so severe that 25 years later I still have a small crater on my right buttock from it being excised and drained (but thankfully can no longer remember the intense pain associated with the three direct penicillin injections straight into the site that were administered). Sites were usually replaced every 5 days, and I dreaded those days. The whole procedure took about 3 hours.
As a back up, we had "butterflies" (winged infusion sets). If a cannula came out, a butterfly could be used as a stopgap until a new cannula could be inserted. Butterflies brought their own horrors, of course. While they had a much finer gauge (as small as 25G at one stage, more commonly 23G) and were far shorter, positioning them was very difficult because they were inflexible metal needles. Regardless, the trauma of the cannula insertions led me after 3 mths to request the use of butterflies on a permanent basis (at the ripe old age of 13!).
Now, one problem with the butterflies was that the tubing actually absorbed insulin, so priming them was a time consuming business. First, insulin for the "day strength" syringe (presuming it was day time) had to be prepared (I generally prepared 6 days' worth of day and night syringes in advance, and labelled them so I could tell them apart, storing them in the fridge). Preparing a syringe was fiddly/fussy, but not difficult. It meant getting a 2ml syringe (or more, depending how many were being prepared), using an insulin syringe to withdraw the correct amount of insulin for the particular syringe, injecting it from the drawing up (insulin) syringe to the "pump" (2ml) syringe, then using a second 2ml syringe to add normal saline to the pump syringe to dilute the insulin adequately. The fully prepared syringe - with insulin and saline in proper proportions - could then be capped with a sterile needle and stored in the fridge. Day and night strength syringes were quite different, and varied over time. To actually prepare the butterfly meant taking the pre-prepared syringe, and rinsing the tubing of the butterfly out TWICE, before gearing it up for insertion (we also did that with the 2ml syringes, adding a small amount of insulin and flushing it through the syringe twice).
Using butterflies was "interesting". When I first started putting them in, an insertion, including swab padding and taping took me about 15 minutes. After some years I had it down to 2.5 minutes (yes, I timed it, I was a busy girl!!). Using both cannulas and butterflies meant you could only sleep on 3 of your possible 4 sides (front, back, left and right), as you invariably had a sore spot or a potentially sore spot on the fourth. If you bumped a butterfly it was wont to dislodge, which was not only extremely painful but meant, of course, that your insulin delivery was disturbed or possibly discontinued. I look back on all of this and wonder how I endured 17 years of it really - but endure it I did, and gladly. Finally I was able to eat what I wanted when I wanted and I was no longer left out of more "normal" activities that had previously been denied me because of my diabetes.
Placing a butterfly involved having the following things on hand: butterfly, syringe, pump, gauze pads, tape, and alcohol swab. First, the site had to be swabbed (in later years I left this part out, as well as the priming of the tubing). The butterfly was "fed" with insulin (no checking for air bubbles back then). Then, the needle would be inserted, at anywhere from 40-70 degrees. Gauze placed under the wings of the butterfly helped to prevent it pressing down and thus the actual needle pushing up through the subcutaneous tissue (ouchy!), meaning it stayed relatively stable; a piece of gauze over the wings meant that the entire dressing could be replaced at any time without (theoretically) displacing the needle. Lastly, tape would be applied liberally to strap it all down, and the syringe and pump would be reconnected.
The first pump, of course, was somewhat of an encumbrance. It was a Millhill infuser, and it was all metal. Hence, every time I flew to Sydney (my family and I were living in Canberra) it would set off the metal detector. Canberra airport in the mid to late 70s was a quiet place, however, and they came to expect me every 3 mths, jetting off to Sydney for my 48 hour line to be put in, where blood was taken every 30 minutes night and day to try and get a profile of what my blood sugars were doing. It was all very false of course, but all they could get, since I refused to do even rudimentary tests at home (when they became available). The Millhill was about 20cm (8") long, 10cm (4") wide and 5cm (1.5") deep. It was LARGE. It was later replaced by the Graseby Infuser, which was slimmer, but still large. Both were kept (by me) in a specailly made pouch that was worn on my thigh, with straps that went up around my neck (sans boobs) and my waist (apres boobs), with an additional - optional - strap around my thigh to ensure it didn't bounce around.
The pumps did not have variable basal rates. You had a set rate and that was it - but at least it meant you were getting a steady stream of insulin 24hrs/day (all being well). The number of times I disconnected and then lost my needle, dressing and all, in the surf is uncountable. I hate to think what the finders thought of their strange flotsam and jetsam. Bolusing was also an interesting event. In theory, you could program the pump to push through X mm (yes, millimetres, on a scale, which had to be converted depending on the size of the syringe - 2ml was my standard but these pumps could take 5 and 10ml syringes as well - to ml, which then had to take account of how much insulin - diluted, remember - was in each ml) at a particular time. It was very difficult, so much so that I took to just going "OK, here's my syringe, I know it has about 0.7units per .1ml, so I need half a little mark" and manually pushing that through. If you didn't know how to carb count, you were completely lost - and even some of us who knew how to do that - in "portions" - were still lost.
It's funny, I've just written all this and it sounds archaic and nightmarish now .. but at the time it was cutting edge and it saved my life. I still have my old pump and pouch. I wonder if I'll ever discard them? Somehow, I doubt that!"