Friday, September 7, 2018

Type 1 For 72 Years, Chapter 1

Type 1 for 72 Years
Chapter 1

The fact that I am alive and well today, after 72 years of diabetes, is due in large part to my Mother and my precious wife who gave me such loving care all those years. My Mother died in May of 2005. My wife and I celebrated our 54'th anniversary in May of this year.
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CHAPTER 1
I was born Richard Alvin Vaughn in 1939 in Roanoke, Virginia. My parents were both raised in the mountainous regions far to the south of Roanoke. There were no paved roads when they were young and going to a doctor involved a day's journey by horse and wagon to Stuart, Va. My Father tried to save his younger brother's life by taking him on one of those trips in the cold winter. His brother was very young and they wrapped him in blankets and laid him in the wagon. He had whooping cough and was very ill. He died before they could reach Stuart. My Mother had an older sister die of diphtheria. There were no vaccines available in the early 1900's.
When my parents were married my Father was 27 and my Mother was 19. They moved from their mountain homes to Roanoke hoping to find a better life. My parents settled in a one room cottage on a plot of land owned by my Mother's uncle. The plot was covered with shrubs that my uncle had planted there. That was my uncle's business. My Father took care of the grounds and sold the shrubs when people came to buy them. That was my Father's only employment at that time. I was born in that one room cottage on Sept. 10, 1939. A midwife saw to my birth there. The three of us moved a year or so later to a rented house and my Father drove a milk truck and started delivering milk in glass containers to people's homes. My sister was born in June of 1942. In very early 1945, when I was 5, I had chicken pox and mumps, all within a few months time. After I had somewhat recovered I started losing weight and by mid-summer I was skin and bones. I had no appetite, I drank water all the time and I urinated very often. My parents took me to our family doctor. He had no diagnosis and prescribed a tonic to help me regain my appetite. This tonic probably contained sugar and was most likely much the same as the old "snake oil" remedies that were not uncommon back then. The tonic was ineffective, of course, and I was taken to a second doctor. Still no diagnosis and so I was taken to a third doctor. No diagnosis there either. Despite my condition my parents enrolled me in first grade at a nearby elementary school. There was a bathroom in one corner of the classroom. I spent much time there. Mrs Thompson, the teacher, became very annoyed with this despite the fact that my Mother had explained my symptoms to her.
My parents took me to a fourth doctor who had read about diabetes and had my blood checked for sugar. I have no idea what the blood sugar level was. I only remember one thing about that doctor visit. When the doctor told my parents of my "sugar diabetes" my Mother's face turned white and the expression of fear on her face frightened me. My Father stood behind us and I did not see his face. My Mother's expression will always be with me until the day I die. The doctor gave them a reference to a fifth doctor who was supposed to be the "expert" in the area for diabetics. He was a far cry from an endocrinologist. I was hospitalized and given beef/pork type insulin. After awhile I regained my appetite and I started gaining weight. Insulin from pigs and cows saved my life and I regained much of my health. I do not remember all of what happened back then but my parents told me all the details years later.
Dr. Davis, the "expert", told my parents that I should never eat sugar or anything with high sugar content. There was no other advice given. So there we were with containers of insulin taken from animals, a glass syringe and metal needles that were twisted onto the end of the syringe. The syringe and a needle were sterilized by boiling them on top of our stove every morning. I had one injection before breakfast each day. We also tested my urine for sugar prior to my injection. A blue liquid called Benedict's solution was poured into a large test tube, 8 drops of urine were added to the solution and then the tube was placed upright into a metal container and the water in the container was boiled for awhile. When the tube was removed the content might show any one of several possible colors. Blue meant 0% sugar; green, 1%; yellow, 2%; orange, 3%; and red, 4%. I may be wrong on some of those percentages, my memory is not too good on that now. The needle was very long. I don't remember the actual length but i think it may have been about three quarters of an inch. We were instructed to stick the needle directly into the muscle on top of my upper legs. The diameter of the needle was greater than the ones used now. The injections were very painful. I remember those very clearly.
While I was still in first grade my parents bought a ten acre property and my grandfather and three uncles came and built us a four room house. My grandfather was a professional carpenter and he was training his sons to follow in his footsteps. The house went up very fast. Brick siding, no basement-just a crawlspace underneath, no insulation in the walls. The only plumbing was one faucet in the kitchen. We had to walk about 100 feet from the back door to reach the outdoor toilet. That toilet was attached to the chicken house. Down the hill was a pig pen. Further along we had a pasture and there were two cows and a horse. We had a large orchard with many fruit trees and a 2.5 acre garden space. Yes folks, we had us a ten acre "farm". It was a lot of fun. I used to help stack hay, pick peas and beans. gather fruit from the orchard. Later on I slopped the pigs and milked the cows. A lot of good memories, but a hard life in so many ways. My Mother canned 100 quarts of beans, 50 half gallon jars of tomato juice, 50 quarts of peaches, 50 quarts of applesauce, and much more every year. There was much more canning, I cannot remember it all. We had grape vineyards and there were was canned grapes and grape juice. We made apple butter too. We had an old fashioned churn and we churned the milk and we had butter milk and our own butter. Eating was great! My Mother was an excellent cook!!! I ate carbs by the hundreds every day but I avoided "sugar" and never cheated. We followed the doctor's instructions but there was no advice about carbs. I had high urine sugar almost all the time. My blood sugar was tested at my doctor's office every six months. There were no other blood tests that I can recall until I was in my late teens.
The first picture below shows my family in 1946, about a year after my diagnosis. The second picture shows my wife, Anita, and I in October, 2011

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.

https://www.consumersafetyguide.com/medical-devices/

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!"

Saturday, May 12, 2018

DKA and Type 1 Longevity

DKA and Type 1 Longevity
Several years ago I researched but could not find much info about DKA occurring long ago, in the 1940's and beyond. Common sense suggested that there had to be a lot of deaths due to DKA back then. There were no meters that allowed us to test at home, and urine testing was totally unreliable. Animal insulin that was injected once per day certainly did not make carb counting and basal/bolus control possible. My first meter was purchased in the mid 1980s, about 40 years after my diagnosis. My numbers were awful, and most were in the upper 200s and lower 300s. I might have had DKA some of the time. So how have I survived through those years? I did not know about carb counting until the late 1980s, and I did not start basal and bolus insulins until the mid 1990s. So that was about 50 years of poor control due to lack of the necessary devices, insulins and knowledge.There had to be many deaths resulting
from DKA in the early years. I never heard about DKA
(diabeticketoacidosis) until the new century, and I never tested for it until 2007. I think that those of us diagnosed that long ago, who are still alive and with good diabetes health today, must be blessed! I don't know how I managed to survive and stay healthy, but I did, and so have many others among the Joslin medalists. They receive medals for 50 and 75 years of living with type 1. There are almost 6000 people who have received the 50 year medal. and most of them are alive, without any serious diabetes related complications. What makes us different? Why have we survived those early years, and why did we not die from DKA back then? This question is what Dr. King and his research team are addressing at the Joslin Diabetes Center. The Joslin Medalist Study has been running for thirteen years, and more than 1000 medalists have participated. I participated in 2009, and again in 2017. Many interesting results have come from the study.
The above discussion was posted several years ago. A friend replied to my post. She had access to much of the information I was lacking. Here is her report:
From Brie Jontry:
"There is a HUGE span of time and circumstance between having ketones and going into DKA (a drop in blood pH so significant that the blood becomes acidic). For DKA, there has to have been a sustained absence of insulin for a lengthy period of time (I've read that LARGE ketones must have been present for at least four hours--so small-to-moderate would have been present even longer than that--for blood to reach the point of acidosis).
While you likely had small-moderate-large ketones growing up, from time to time, you weren't in DKA for a sustained period. If so, you would have died!
A BG of 250+ also doesn't necessitate ketones. It can come from poorly counting carbs, or other factors, but in the absence of illness and so long as there is *some* active insulin on-board, chances of developing ketones from high BG alone isn't likely.
Here is an article from Dr. Ponder explaining the difference between DKA and ketones:
https://www.facebook.com/stephen.ponder.9/posts/3695328899194
A quote from Wikipedia on Diabetic Ketoacidosis:
"DKA is a medical emergency, and without treatment it can lead to death. DKA was first described in 1886; until the introduction of insulin therapy in the 1920s, it was almost universally fatal. It now carries a mortality of less than 1% with adequate and timely
treatment."
"DKA is the most serious hyperglycemic emergency in patients with type 1 and type 2 diabetes mellitus, and is associated with significant morbidity and mortality. The mortality for DKA before the discovery of insulin was greater than 90%. This was dramatically reduced in subsequent years to less than 50% and was further reduced to less than 20% with the incorporation of antibiotics and forced hydration into the therapeutic armamentarium. In the 1950s, the mortality of patients
with DKA treated with high doses of insulin was reported to be less than 10%. In more recent years, the use of standardized written guidelines for therapy has resulted in a mortality rate less than 2%, with higher mortality observed in elderly subjects and in patients with concomitant life threatening illnesses."
Now I know much more about DKA, past and present, how about you?

Thursday, November 2, 2017

Blue November, Diabetes Month

    November is the official month for diabetes. Blue is our color, and JDRF is our organization. Let's make type 1 become type none!
    Type 1 for 72 years, but looking forward to new horizons, new technology, and a brighter future for all people with diabetes.





Saturday, October 21, 2017

Low Carb for Type 1?

Low carb for type 1?
I am type 1, diagnosed in 1945. I knew nothing about an appropriate way of eating. My doctor told me to take my insulin before breakfast and to avoid sugar, but there was no other advice given back then. I could eat anything I wanted, and as much as I wanted, if it did not contain sugar. I lived on a farm, and there was soooo much to eat. I drank milk from our own cows with every meal. We had an orchard with many kinds of fruit, and an acre of garden space. I ate tons of carbs every day, but I did not eat sugar, so my parents thought that was OK.
There was no device for testing my blood sugar until the mid 1980's. I survived and thrived that way for 50 years until the 1990's. I started testing my blood sugar with a glucometer, and before the dawn of the 21'st century, I was counting carbs and using a fast acting insulin. I began gaining weight. I had never been overweight until then. I was diagnosed with insulin resistance in 1998. Yes, type 1 diabetics can have insulin resistance. I started taking oral meds for the insulin resistance. With Metformin, eating an average of 130 carbs per day, and getting a lot of exercise, I lost all of the extra weight. My A1c's were in the high 5's and everything seemed good, but then I started having diabetes complications. Retinopathy and neuropathy were diagnosed. The roller coaster control, with too many highs and lows gave me a good BG average and A1c, but the complications were there.
I started using a pump in 2007. There were fewer highs and lows. My diabetes management improved so much that the retinopathy disappeared, and the neuropathy was not much of a problem at that time. My A1c's have remained in the 5.4-6.4 range for about 15 years. I am averaging 150 carbs per day, and I am not overweight. I am obviously not following a low carb diet, but my diabetes management is good. I am using a pump and a CGM, and my complications are under good control. Why should I follow an even lower carb diet? There are many type 1 people following a very low carb diet but I don't think a low carb is necessary for all diabetics. What do YOU think?
The following link gives an article written by Sysy Morales on diabetesdaily.com. It asks the question "Should all people with diabetes try eating low carb?" There are 50 replies to the article.