John L. Conrod, 43 years Type 1 Diabetes, 2-1/2 years Insulin Pump
On December 2, 2013 I was honored to be become a member of the Medtronic MiniMed Ambassador Program. That honor caused me to reflect on the experiences I have had and the changes in the treatment of Type 1 Diabetes I have seen since my initial diagnosis in 1970.
The immediate result of that reflection is my first Blog Post on TuDiabetes.
A Continuing 43 Year History of Life with Brittle Type 1 Diabetes mellitus
I was diagnosed with acute onset "Juvenile insulin-dependent Diabetes mellitus", advanced Diabetes Ketoacidosis (DKA) and severe dehydration as a young adult in 1970.
During my 13 day hospitalization at onset, the first ten days were spent in ICU. I had felt ill for several months but various diagnoses were considered but rejected by my physicians.
Diabetes had been previously ruled out based on one random and one fasting blood glucose urinalysis using Clinitest®™ tablets and a"dual-void" urine specimens. During the three month period prior to hospitalization I had episodic blurry vision, extreme thirst, itchy skin but no skin condition, difficulty thinking or concentrating, and ultimately severe weight loss, going from a slender 125 pounds to about 86 pounds. The day before I was scheduled for another visit to my physician, the physician's assistant called and told me the doctor would prefer to do my test at the hospital so more advanced diagnostic tools would be available.
The fasting glucose tolerance test was not uncomfortable, but cloying sweet. The early results showed a high blood glucose. The ultimate result was clear: At the conclusion of the glucose tolerance test my bg level was over 650 mg/dl! I also had critical DKA and life-threatening dehydration.
I was immediately admitted to the ICU with both a senior ICU nurse and a nurse specialist with Diabetes treatment experience. IV saline was started to rehydrate me, and I was given my first ever injection of U-40 Regular beef-pork insulin. My life as Type 1 had begun.
It seemed I sensed the positive effect of the insulin injection right away, although that was probably subjective. Curiously, throughout onset, I "knew" that while my body was dangerously ill, that the "I" (the essential me) was OK and would get better. I determined at that point that I would learn everything I could about self-care and living a complete life with Diabetes, a chronic condition.
The hospital was very concerned about my case, particularly because one year before a 17 year old patient was admitted with a misdiagnosis, and did not survive.
During my stay I had multiple daily visits and personal consultations with the ER physician that admitted me, an Endocrinologist, other specialists, several interns, the nutritionist, dietician, and both of my primary nurses, as well as the general nursing staff. I was a learning sponge, absorbing and soaking up information faster than my body was rehydrating from the IV drips.
My second day in the ICU I practiced filling a syringe (glass syringes!) with sterile saline, then injecting an orange (which was supposed have the same surface resistance as human skin.) On day three, I started self-injecting. With insulin finally back in my bloodstream, I felt like I was given a new life, literally reborn from my near-death hospital admission. When my bg levels and rehydration got closer to normal, U-40 NPH long-acting basal insulin was added with my U-40 R bolus insulin.
I decided that I was not a Diabetic -- which was not denial. My viewpoint then -- as it continues today -- is:
I have Diabetes; I control Diabetes, it does not control me.
On day three I started to personally prepare and self-inject insulin, select meal choices using the Diabetes Exchange Lists, perform my own dual-void urinalyses with the test tube and tablets, and to complete my own Blood Glucose Log Book with approximate BG level with type and dose of insulin injected. I also saved my hospital menus to use as examples.
Carbohydrate intake was not yet measured or calculated then, in part because BG testing was only approximate. Blood BG tests were lengthy lab procedures, so were only administered daily. By the time the results were available they were good only for charting overall progress and too late for any insulin adjustments. Dual-void urine test result were limited to wide ranges like Under 70 "Low", 80 - 140 "Normal", 150 to 200 "High" 240 and over "Very High". Crude at best, but better than nothing. Except for severe hypoglycemia, it is almost impossible to "guess" blood glucose levels subjectively.
Ever since that hospitalization, I continue to realize that each day is a gift. Diabetes can be annoying, but is not a burden.
CONTINUING SELF-EDUCATION
I became an "expert" on the Diabetes Exchange Lists then bought and memorized much of Bowes & Church Nutritional Information for Portions Commonly Used and the USDA Nutritional Content Handbook. I created modified recipes using these source books to make Diabetes friendly recipes.
Diabetes control is a process of continuing self-education and careful record-keeping. I constantly learn something new about nutrition, advances in Diabetes research, new methodologies for bg control, evolving theories of the causes of Diabetes, becoming more aware of the differing types of Diabetes, virtually anything is more for my Diabetes Information "sponge". With the advent of reliable information on the internet, I have added professional and peer-support groups to my Medical support team. I often share new information with my Diabetologist. Just as maintaining bg control is an ongoing process, so is learning. Continuing education is key for me.
EMERGING DIABETES TECHNOLOGIES
Technology continued to advance. I changed from once daily NPH to twice daily NPH which reduced "Dawn phenomenon" bg highs or between meal or nighttime lows. U-40 insulin was replaced the U-80 R and NPH, so less fluid needed to be injected and I got fewer of the injection site "pockmarks" caused by temporary loss of local fat tissue.
Even better was the change from glass syringes and stainless steel needles to disposable syringes. I was surprised how rapidly a glass syringe plunger could wear out the ground glass which would cause insulin to leak past the plunger! I did not miss honing and sharpening the needles, then resterilizing the glass syringe and needles. Having a fresh, sterile syringe and new sharp needle for each injection felt like luxury! :-)
Clinitest®™ tablets and test tube were replaced with CliniTape®™. No more carrying a sterile specimen cup to do a urinalysis. Medical progress continued to march on.
U-80 beef-pork insulin was then replaced to an even more refined U-100 insulin with fewer animal antibodies. Result: even less fluid and fewer local reactions, sensitivity or pockmarks at injection sites.
BG testing became easier, faster, and more accurate with Blood Glucose Meters! A largish drop of blood on a test strip and 15 seconds later a numerical result, accurate to +/- 10 mg/dl. The meter even had a memory for the last several tests.
HUMAN RECOMBINANT DNA INSULINS ARRIVE
One of the best technology advances for me was the replacement of U-100 beef-pork insulins with U-100 recombinant DNA human insulin! No more animal antibody local reactions, sore spots, or site tenderness. Human insulin also seemed to be more effective and a better determined duration, even though I was still using R and NPH. The only downside I found was that human insulin did not produce the pronounced effects of hypoglycemia. While I didn't miss the sweating, shaking, dizziness, light-headedness, feeling cold, or disorientation, they had been easily recognizable symptoms of the onset of hypoglycemia.
My next step onward was the change from U-100 R and NPH human insulin to U-100 Rapid Acting Insulin and Intermediate Acting Insulin. I had the opportunity to try several the newer insulins because my world-class Diabetologist/Endocrinologist/Metabologist/CDE provided no-cost professional samples. I tried Novolog and Apidra Bolus insulins as well as Levemir and Lantus both vials in insulin pens.
These new bolus and basal insulins were much more effective in establishing improved bg control. I could safely eat 15 minutes after a bg test before the meal. The bolus insulin was effective almost immediately and had a clear 4 hour duration. The basal insulin had a smoother effective curve and caused few between meal or nocturnal hypoglycemia while sleeping. There is often a downside, and the issue was the bolus and basal injections could not be combined when using a syringe. Pen insulin necessarily required separate injections for each pen. The number of physical daily injections increased, but so did bg control -- a worthwhile trade-off.
Even with frequent bg tests, multiple daily injections (MDI) and careful food intake, my Diabetes was constantly "brittle". I had random hypoglycemia or hyperglycemia despite the best control methods I could apply.
For years I had apparent narcolepsy, falling asleep when sitting for any length of time, unrelated to the amount of sleep I had. In case this narcolepsy was caused by unrecognized nocturnal hypoglycemia, I underwent an overnight sleep study. The diagnosis was clear: Non-obstructive Sleep Apnea. I was prescribed a CPAP machine and mask to wear while sleeping, which controls the sleep apnea. The diagnosis was wholly unrelated to Diabetes.
CLINICAL TRIALS
Every available opportunity I volunteered for Diabetes Clinical Trials. I participated in a private clinical trial for diagnosing Diabetes Peripheral Nerve Damage. My result: Peripheral nerve response better than most participants who did not have Diabetes!
The next private clinical trial was testing Symlin for Type 1 Diabetes. Although my pancreas produces no measurable insulin, Symlin caused severe hypoglycemia for me, so my participation was eliminated. My results were similar with Byetta and Amylin.
In a related clinical trial I tested Januvia for Type 1. Like Symlin, Byetta, and Amylin, these drugs are FDA approved for Type 2 Diabetes. The studies I was in was to determine if any of them could be useful and safe for Type 1 Diabetes. Januvia had a measurable effect on the random hypoglycemia and hyperglycemia I experienced. The incidence of these random "brittle" incidents decreased 20% the first three months, then continued at 10% to 15% reduction of incidents for the next three months. I am continuing in a long-term private clinical trial of Januvia for Type 1 Diabetes.
Important note: My participation in these various controlled clinical trials were under medical supervision. My comments are my personal experience only. While I recommend applying for clinical trials, always consult your physician and medical support group for any changes to your medications, diet, exercise plan, or other alterations to your Diabetes regimen.
YOUTH HOSTEL, KINVARA, COUNTY GALWAY, IRELAND
Over the years, given the "brittle" nature of my Type 1 Diabetes, I had experienced numerous infrequent incidents of severe hypoglycemia. I'd had hypoglycemic seizures. If my wife could not get me to drink fruit juice or eat glucose tablets, paramedics were called. I had only one incident when my wife and I were visiting friends that required an ambulance trip to the Emergency Room. After a venous injection of glucose solution, I recovered and was discharged without hospitalization.
I always kept boxes of 100% fruit juice with me, as well as glucose tablets and snacks like peanut butter and crackers for longer-acting carbohydrates after hypoglycemia. That worked well much of the time, although one of the first complications of Diabetes I acquired was hypoglycemia unawareness. My wife was alert to the symptoms when we were together. My employers were always discretely told I had Type 1 Diabetes, along with an simple explanation of the symptoms of hypoglycemia. I've also had a Type 1 Diabetes Medical Alert Bracelet and now wear a Medical Alert Necklace as well as carrying a Medical Alert Wallet Card.
Shortly after retiring, I had the opportunity to provide volunteer Information Technology to a youth hostel in the tiny village of Kinvara, County Galway, Ireland. The hostel manager provided round-trip airline tickets, room and board, in return for my help with the host computers, wireless network, and installation of a security camera system for the facility. The area was incredibly beautiful, the Irish people and hostel guests were friendly, welcoming, and cordial throughout my three month stay. While the village was tiny and somewhat remote, the hostel was located several kilometers away in a very rural area on the edge of famous Galway Bay. The hostel building is an Irish National Treasure, almost 200 years old, with a 150-year-old walled "Victorian" country garden.
The hostel manager and staff were aware of my Diabetes. The manager even ensured that appropriate food was available for me, and the hostel always had "sterile-box pack" 100% fruit juices in the hostel store, which were free for me.
ENCOUNTER WITH DIABETIC COMA
(Or The Kinvara - Galway - Kinvara Saga)
One evening, after attending the 25th Anniversary for an Irish couple I had become friends with in Kinvara, the hostel members in attendance returned to the hostel. I finished a minor technology project, did a blood test, and had a bed time snack. I then went to bed. (I was in a 7 person male dormitory room at the hostel, which was full with guests.) I checked to be sure I had a juice box beside my lower bunk, as well as "Smartees" glucose candies, put on my mask and turned on my CPAP machine.
I remember having a vivid, disjointed dream. but could not wake up. The first thing I became aware of was several huge Irish paramedics trying to restrain me, and a doctor trying to talk to me. As I started to return to consciousness I learned what had happened to me and why was surrounded by paramedics.
Several of my temporary dormitory roomates heard me fall out of bed and start to have seizures. The hostel manager, whose bedroom was directly underneath my dormitory room, ran upstairs to see what had happened. When he saw me in siezures on the floor, he called 991 for the paramedics, then called his physician since the only local doctor was away on holiday.
His physician, who lived and had his surgery (Doctors Office and Clinic) in another town Gort, about 25 kilometers away. The physician did not hesitate, drove to Kinvara, and out to the hostel to make an emergency house call. The doctor arrived before the paramedics since the ambulance had to come from Galway City, 35 kilometers away. The hotel manager had informed the doctor that I had Diabetes, so the doctor brought Glucogen (European Glucogon) in his medical bag. By that point the paramedics arrived and the physician had them restrain me so he could administer the injection of Glucogen. Within minutes, the seizures stopped and started to gain awareness.
Either the paramedics or the doctor then did a blood glucose test, Since I was fairly aware, they shared the result, which was in mmol. I was alert enough to tell them I did not understand mmol. I explained I was from the U.S. and we used mg/dl, and asked to do my own bg test to find a result I could understand. By now I was still feeling weak, but mentally quite alert. After the Glucogen injection and and two quarter-liter boxes of fruit juice my bg level was 20! Theoretically, I should have still been unconscious!
We waited fifteen minutes then retested BG before transporting me by ambulance. After some glucose gel and another juice box, my blood sugar rose to 35, then 50. I felt cold, but normal. With a blood sugar of 50, the doctor and the paramedics felt I was in good enough condition for the ambulance ride to hospital (as the phrase is used in Ireland). The paramedics refused to let me walk downstairs, but belted me to the stretcher. They then laboriously maneuvered the stretcher down a steep, narrow 150 year old staircase with two landings to negotiate.
I did not have my backpack with my Diabetes testing kit and supplies, so someone was sent to retrieve it. They forgot to bring my clothes, sweater, shoes, or jacket. I was clad in long woolen underwear, flannel pajamas and bedroom slippers.
Ambulance to University Hospital, Galway
The normally 45 minute to one hour drive across the motorway to Galway took only about 30 minutes by ambulance. Rather than the normal Irish healthcare system procedure of waiting in queue at the ED (Emergency Department), since I was an ambulance transport I was brought directly to the nursing station triage area and transferred to a hospital gurney.
When the paramedics presented my clinical transport documents and a note from the initial attending physician diagnosing critical hypoglycemia, a nurse came and asked what food I would like and could eat for breakfast while awaiting the patient registration process! I was served my breakfast tray on gurney before I even got to the ED Admittance Station to provide my information.
The care I received at University Hospital, Galway was caring and impressive. A nurse took my vital signs and when I gave her my before meal bg result in mg/dl, got a bg meter and retested to enter the mmol result in my medical chart. I had asthma and a slight cough, so they had an attendant take me for a prone chest x-ray, then back to the ED treatment area to await the results and to see a physician. The dietitian came to see me and we prepared a lunch menu. While the ED wait was fairly typical of a U.S. ER visit, the nursing care was exemplary. Two physicians saw me, the first a Trauma Surgeon, and the second an General Care ED Physician with experience in Diabetes care. She became my primary ED doctor. Her care was impressive.
My lunch was served, and delicious for hospital food, especially in the ED. When my condition appeared stabilized, x-ray results were clear, and I had three consecutive bg's in normal range (mg/dl and mmol), they prepared to release me. My doctor ensured I left with an Irish prescription for Glucogen, to be filled by the Chemist (Pharmacy) in Kinvara, since the hospital had only in-hospital supplies available. She also wrote Irish prescriptions for my two types of insulin and syringes. I had a supply brought from the U.S. but U.S. prescriptions are not valid in the E.U. or Ireland specifically. My doctor wanted to ensure I could obtain essential supplies if needed.
The Journey back to Galway (Saga of the Coma Concludes)
I was then discharged from the University Hospital Galway ED, still clad flannel bathrobe and pajamas, woolen long underwear and bathroom slippers. The temperature that February winter day in Galway was about 4°C and falling. That's just above freezing. From my cell phone I called the hostel in Kinvara. The person that drove the shuttle was using the van to visit family more than 100 km away and would not be back until about 7PM. There was no other staff member with a vehicle that could give me a lift.
It was then time for a mid-afternoon snack by my schedule, Tea Time by Irish standards. The hospital public cafeteria was closed since it was Sunday. Fortunately the Gift Shop area had both a snack shop, small grille, and vending machines with sandwiches. I purchased a warm sandwich, something to drink and some "sweet Irish biscuits" (shortbread cookies) to have with me as longer acting emergency carbohydrates.
By the time I finished my snack, I got a call back from the hostel van driver. She would cut her trip short but did not have enough time or petrol to fetch me from Galway. She would rendezvous with me in a couple of hours at Kilcolgen, a tiny hamlet at the "T" where the main motorway met the smaller highway to Kinvara.
The inter-city bus terminal was in downtown Galway, almost 5 kilometers away from the hospital. In good weather it would have been a beautiful walk, but with freezing temperatures clad only in pajamas and bedroom slippers, an impossible journey. There was a taxi-stand outside in the entrance roundabout to the hospital.
Fortunately the driver of the taxi had Type 2 Diabetes and was empathetic when I explained my garb and that I had just been released from the hospital after ambulance transport. I told him I needed to go to the Bus Eirann Terminal in Galway and asked if he knew somewhere enroute where I could purchase a warm coat for the remainder of my trip. He took me to a department store that he knew was having a sale, and explained that the bus terminal was a very short walk from the store. I purchased a very warm insulated woolen jacket on sale, then walked to the bus terminal. After purchasing my ticket I had to wait only twenty minutes before the last daily Sunday evening bus left that passed Kilcolgen. There was no Sunday service on the route to Kinvara. The Irish bus was wide bodied, with comfortable seats, almost like a deluxe charter bus in the U.S. The only thing unusual was the driver sat on the right and the boarding door opened on the left.
I made my rendezvous in Kilcolgen just a minute or two before the drive arrived with the hostel van. We stopped in Kinvara village and bought Chinese "Take Away" food, then drove to the hostel where I was greeted warmly by the manager, staff, and guest remaining from the previous night.
The next day I was given a lift to the Kinvara Chemist, who had received my prescription for Glucogen from University Hospital Galway sent by telefax as a courtesy by my attending ED doctor. I also submitted my insulin prescriptions to keep on file in case of emergency.
Two days later, the hostel manager drove me to Gort where we both had appointments with his physician. After a brief but thorough examination, the doctor informed me that he had almost been unable to revive me. My first blood glucose was too low to register. The next blood glucose test after the Glucogen, before I gained a semblance of consciousness read "Low". My survival was miraculous, even more so since there seemed to be observable effects at the time of the follow-up doctor examination.
Lessons Learned from the Coma Incident
What I learned from this is Always expect the unexpected -- and be prepared for any eventuality. Since the coma incident, I always carry a Glucogon kit in my Diabetes Test Kit, as well a having a bottle of liquid glucose, fruit juice boxes, glucose tablets, and longer-acting carbs and/or snacks with me at all times.
I still continue to wear my Medical Alert devices and make sure family and close friends are reminded of watch to watch for hypoglycemia symptoms. I don't present this as paranoia on my part or an obligation on their part, but that I consider them valuable member of my Diabetes support group.
TECHNOLOGY COMES TO DIABETES LOG BOOKS
I studiously kept manual Diabetes Blood Test Log books for many years. I'd review them regularly, looking for patterns, analyzing bg results, and brought them to every doctor visit. I tried creating a spreadsheet to help make the data more useful, but manually entering data into spreadsheets after the fact became tedious, duplicated work. The spreadsheet analysis was useful, but not worth the time-consuming effort to keep them updated and current.
I used the internet daily as an Information Technology Manager and Consultant, and was also proficient in spreadsheets and databases. My exploration of Diabetes related software provided me with some early versions of Diabetes Management Software. Most of those were similar to the Log Books I'd already created with my own spreadsheets. Those early programs had a few useful features my spreadsheets lacked, but were still labor intensive. I found a couple of more full featured Diabetes Management software, but they were not much better.
Then I discovered SINOVO, a small software company in Germany founded by a software engineer who had Diabetes. His self-created tool was recognized by the European Medical community, and won endorsements from my German Diabetes medical specialist.
The founder then attracted other IT professionals with Diabetes and founded SINOVO, a company of people with Diabetes who created programs for people with Diabetes and their medical support team. SINOVO's first release to the general public, SiDiary5, won several gold medals for Technology in Europe, which is what brought it to my attention. The program was recognized by both users with Diabetes and by the European Medical and IT communities. A significant part of what differentiated SiDiary 5 was that it could be used on your personal computer, then securely synchronize the data to SINOVO's SiDiary Online database. Two-way synchronization means users can enter their data on their PC or online after securely logging in to their password protected account which holds their synchronized p in an encrypted database, with your personal records.
SiDiary5 was available in many languages and intuitive to use to use because data entry looked like a manual Log Book. The program included profiles for Type 1 and Type 2 Diabetes, supported injection therapy or insulin pumps, and could import data by cable connection from virtually every available blood glucose meter. Profiles are very personal with easy customization.
The Medications lists has selections for almost every medication, insulin type and brand, and could be expanded by easily added data types. Pump therapy tracks multiple basal daily basal rates using either templates or custom rates. There are an enormous variety of charts, graphs and other reports selected with a click by radio buttons, then printed or exported to PDF files or Word documents.
All of this data, reports or graphs can be securely shared with your physician or any other person you wish by e-mail. There is a clinical version for medical practices. Physicians with the clinical version can access the on-line data base for the patient's individual records, and send feedback or comments to the patient.
SiDiary5 became even more useful to me when I added their Windows Pocket-PC version for my PDA. I could now test when away from the computer, by entering the information in the Log Book on my PDA. I would just then synchronize the information either with my home PC or with the online database.
When I changed to a Blackberry Smartphone, I changed to the Blackberry version.
BETA TESTING SIDIARY6 FOR PC, BLACKBERRY, AND ANDROID
My e-mail chats with SINOVO's founder and their chief English support engineer turned into an internet friendship. I provided regular feedback and offered suggestions about useful features that might be added. When SINOVO decided to Beta Test SiDiary6 under development, I became the first beta tester in the United States and a primary tester for the various English language versions. I worked with them on the PC version for almost a year. The program had to undergo extensive testing to meet the governmental approvals required by Germany and the E.U. countries, as well as the U.S. FDA.
SINOVO also developed a version that could be run from a USB thumb drive, so I changed from the PC version to SiDiary 6 PnP (SD6PnP) -- PnP stands for Plug and Play, an older name for portable USB "thumb drives". When my wife and I travelled to spend the weekend with her and my grandson, I did not have to carry my laptop. I just took the SD6PnP USB stick with me and used it on her laptop -- just plug it in, and it was ready to go with all my current data!
When the PC version was released, we immediately started beta testing SiDiary 6 Android (SDA). That beta test took about nine months including German and EU certification. Concurrently SINOVO was developing SiDiary 6 iPhone (SDi) iPhones and iPads. They also developed versions for other Smartphones like Symbian, as well as Windows Phones.
The benefit of this beta testing was immediate. For a month or so I used both SiDiary5 and the Beta version 6. When it became apparent that the beta was stable and greatly improved, I had the opportunity to use it well in advance of the official release. The same was true for the PnP and Android versions.
Finally, I validated that SiDiary6 would run without issues or conversion on the U.S. versions of Windows 8 and 8.1. SINOVO had verified operation during the Windows 8 beta testing by Microsoft so needed no beta test or re-certification by EU authorities or the U.S. FDA.
QUEST FOR AN INSULIN PUMP
I investigated Insulin Pumps as soon as I heard about them. While I gathered a lot of useful information, my insurance coverage either did not cover insulin pumps or my co-pay was 50% to 75% which made them cost-prohibitive.
When I became eligible for Medicare, I selected a Medicare Advantage supplement plan to covered insulin pumps as durable medical equipment. I consulted with my Diabetologist (who is also my Primary Care Physician) and we started the process of medically justifying an insulin pump while exploring available pumps.
It took about a year and a couple of appeals, coupled with reams of medical history, test results, and several years of blood glucose log documentation, but I was finally approved for the Medtronic Paradigm Revel 723 insulin pump. My coverage was 90% of the pump price, but 100% coverage for ongoing pump supplies, test strips, and lancet, and an under $50 co-pay for a month supply of Novolog insulin.
After literally tens of thousands of insulin injections, the change to my Medtronic Paradigm Revel 723 Insulin Pump was an incredible relief. Even better, the infusion set insertion was easy and comfortable. I only needed to change an infusion site every three days, rather than eight to ten daily injections.
My blood glucose levels continued to be brittle, but the improvement in overall control was immediate and impressive. I could now titrate insulin doses to .10 unit rather than the approximate 1/2 unit with a syringe or a full unit with an insulin pen. Basal insulin injections were completely eliminated, replaced but a constant low background basal rate using the pump. Multiple daily Basal Profiles meant I could match basal rate to meal times, sedentary or sleep times.
Lab tests confirmed the improvement with pump therapy. On multiple daily injection therapy my hbA1c hovered in the 8's. With pump therapy by first A1c was 7, followed by consistent 6's to date. The pump has literally changed my life with Diabetes once again.
The only issue I encountered with insulin pump use was the initial infusion set I used. Because of more than 40 years of subcutaneous injections, I developed a substantial layer of scar tissue from the syringe needles. This scar tissue frequently caused the cannula inserted vertically into the skin would be bent 90°, occluding the tubing and blocking insulin infusion.
I changed to the Silhouette Infusion set which uses a 45° insertion angle so it was not affected by the scar tissue. I still had an adequate subcutaneous layer for the infusion site to be effective for two days. A small, but significant change. The control of my Brittle Type 1 Diabetes continues to be dramatic and effective. I would never consider returning to injections again -- except in case of extreme emergency.
BRITTLE TYPE 1 DIABETES
By the way, Brittle Type 1 Diabetes was recently recognized by the National Institutes of Health (NIH) as separate sub-category of Type 1 Diabetes. While Type 1 accounts for about 5% of all Diabetes and I have the rarest of Brittle Type 1. Brittle Type 1 in my case has combines both hyperglycemic and hyperglycemic random episodes. This sub-category has the unenviable characteristic of being the rarest type of Diabetes yet discovered, a tiny fraction of Type 1. Brittle Type 1 is wide-spread genetically among close family relatives and siblings.
WHAT'S NEXT ON MY DIABETES JOURNEY
Continuous Glucose Monitoring Medicare Coverage
Because of my modified diagnosis of Brittle Type 1 Diabetes, along with a long medical history of severe nocturnal hypoglycemia, I am very interested in Continuous Glucose Monitoring (CGM). CGM is more critical for me fatal Diabetes Coma incident in Ireland.
My Diabetologist prescribed CGM for me, and together we prepared the medical documentation, fresh lab results, and determination of medical necessity. This was submitted both to Medicare and to my Medicare Advantage HMO pre-approval offices. To our mutual dismay, the HMO deferred to the Medicare Advantage insurer. Medicare Advantage disallowed coverage because Medicare rules determined that CGM was advisory information only and determined not to be used for diagnostic or therapeutive purposes.
My physician and I investigated the clinical studies and found that current Medicare guidelines are based on earlier technology and outdated actuarial studies but at least a decade. New CGM equipment has evolved dramatically. While it is not yet an "artificial pancreas" it has made tremendous advances since the studies Medicare used. This improved effectiveness has been verified in peer-reviewed medical studies.
Newer CGM products not only monitor blood glucose almost continuously, they also alert the patient when there are significant upward or downward changes in blood glucose level, not just tick mark alerts for low or high levels. My Medtronic Paradigm Revel already has a CGM function. It does not require another device. It simply needs to have the CGM function activated when I attach a matching Medtronic CGM sensor.
The ongoing cost of CGM supplies is unaffordable out-of-pocket, since I am retired and living on a fixed income. .
Copyright © 2013, John L. Conrod. ALL RIGHTS RESERVED. Brief portions may be quoted or posted on non-profit Diabetes Support sites so long as the copyright notice is included and author cited.
IMPORTANT NOTICE: These comments are based on personal experience and observations, but should not be considered medical advice. Always consult your physician or medical support team about any changes to your Diabetes self-management.
Because it quickly became apparent that I was allergic to it, I had to switch to other insulins, none of which were all that great either, as duration was far too long. I sure appreciate the rapids we have now.