Who Has Complications Already!!!
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BarbaraCarr1981
Posts: 903 Member
Hello, I've been T1 diabetic for 22 years. I got got news today that a past coworker with T1 diabetes had passed away due to diabetes complications. He was only 36. I guess in the last 2 years, he lost a couple of toes and was very close to being completely blind and at one point was on a feeding tube. He was diabetic since the age of 5 and starting using a pump around 25 years old. I knew he always tested his blood at work and stuff but im really not sure how well he treated his disease through the years. He has left behind a wife and two small children. I am very saddened by this news......
I also spoke with another fellow diabetic today and he was diagnosed with kidney failure last January (age 34) His A1cs were always between 7-10.0 (Canadian measurement - between 4.5 and 8.5 is normal) since he started treating his diabetes at age 13. He is waiting for a pancreas/kidney transplant but he must go through many tests to see if he's compatible to do so. If not, they won't do the surgery. You know what that means - dialysis til death.....
I have had uncontrolled sugars through my teenage years - rebellious against the disease. I have drank and done drugs like cocaine from the ages of 23-29. It was when i became 29 and met a new man, that i really smartened up and took control of my disease. That is until after my pregnancy, ive tried and tried and STILL trying to get the best control possible. Diet, exercise, and testing blood and adjusting insulin. It's all i can do to help prevent complications. But for these two fellows mentioned above, especially the one with A1cs 7.0-10.0; he shouldn't be suffering kidney failure. Those A1cs aren't that bad.
I would really appreciate some words from some fellow T1 diabetics so know if YOU are suffering from any complications, even with good control for most of your life??? When I spoke to my endo last week, he actually said to me "You are not as bad as you think you are with ur diabetes". I have no idea what he meant by that. Yes im doing all the work - logging food, testing blood, exercising BUT my sugars aren't great! I am very worried.....please tell me anything. Good or bad. Im listening. Thank you.
I also spoke with another fellow diabetic today and he was diagnosed with kidney failure last January (age 34) His A1cs were always between 7-10.0 (Canadian measurement - between 4.5 and 8.5 is normal) since he started treating his diabetes at age 13. He is waiting for a pancreas/kidney transplant but he must go through many tests to see if he's compatible to do so. If not, they won't do the surgery. You know what that means - dialysis til death.....
I have had uncontrolled sugars through my teenage years - rebellious against the disease. I have drank and done drugs like cocaine from the ages of 23-29. It was when i became 29 and met a new man, that i really smartened up and took control of my disease. That is until after my pregnancy, ive tried and tried and STILL trying to get the best control possible. Diet, exercise, and testing blood and adjusting insulin. It's all i can do to help prevent complications. But for these two fellows mentioned above, especially the one with A1cs 7.0-10.0; he shouldn't be suffering kidney failure. Those A1cs aren't that bad.
I would really appreciate some words from some fellow T1 diabetics so know if YOU are suffering from any complications, even with good control for most of your life??? When I spoke to my endo last week, he actually said to me "You are not as bad as you think you are with ur diabetes". I have no idea what he meant by that. Yes im doing all the work - logging food, testing blood, exercising BUT my sugars aren't great! I am very worried.....please tell me anything. Good or bad. Im listening. Thank you.
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Fortunately, so far, I've only been told by my ophthalmologist "I can definitely see the diabetes in your eyes now but that's not surprising because you've had diabetes for over 20 years."0
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A lot of this has to do with the low level of expectation from many of the diabetes practitioners out there. I would not consider an A1C of 7-11 as being in good control. Look at the link and see how the risk of complications goes up dramatically with the rise in A1C levels. Any length of time spent with a sugar above 140 increases your risk. There is an unfortunate lack of education out there and it does not seem to be part of the information you tend to get from your CDE, nutritionist or clinician. If that was more out there from the beginning, I think that there would be less long term problems.
Sadly many practitioners accept/expect that you will have long term problems rather than setting stricter guidelines with tighter targets. With the newer insulins, delivery methods and the availability of more accurate home BG testing and CGMs it is now possible to get a better handle on things. It takes a lot of work but also a lot of education and support from your clinical team. They/you have to be willing to look for patterns and do the basal testing as well as the I:C and CF testing to keep you dialed in safely. I think a lot of practices do not push this because of fear of lows/lawsuits as well as the fact that things change with D and you have to be willing to redo/reevaluate all your testing/calculations whenever anything changes.
I started with an A1C of 11 and was able to get it down to 5.8 on MDI without lows. It took a lot of testing, good record keeping and accurate nutritional logs. It took a lot of self education and a willingness/ability to test around 10x a day. When I got my CGM I found out all that I was missing and further modified my foods and the timing of my dosing. It has made a huge difference and helped me get pump ready. Now that I'm live with my pump I have been getting it dialed in so I can keep my tight control and try to improve it even more. It has been a whole new set of tricks to master.
There is no reason that a PWD should not strive for normal numbers rather than the higher ranges that are known to cause long term complications if you can get there without going low. Our clinicians should be right there with us, helping us to get there too.
The insurance limitations on testing supplies, pumps, CGMs etc that limit many peoples ability to care for themselves adequately are just criminal in my book. The cost in the long run is more if you have to treat the complications rather than prevent them.
Sorry - end of rant!
As to you original question - so far I have not had any but I'm new to the game - just diagnosed this January at the ripe old age of 60. Now looking at working for the next 8 years or so, so I can get the upcoming tech improvements before I retire and have to rely on the non existent coverage for pumpers on medicare. Am hoping they get this fixed before I need to use it!
http://www.a1cnow.com/Professionals/About-A1C/A1C-and-Complications0 -
A lot of this has to do with the low level of expectation from many of the diabetes practitioners out there. I would not consider an A1C of 7-11 as being in good control. Look at the link and see how the risk of complications goes up dramatically with the rise in A1C levels. Any length of time spent with a sugar above 140 increases your risk. There is an unfortunate lack of education out there and it does not seem to be part of the information you tend to get from your CDE, nutritionist or clinician. If that was more out there from the beginning, I think that there would be less long term problems.
Sadly many practitioners accept/expect that you will have long term problems rather than setting stricter guidelines with tighter targets. With the newer insulins, delivery methods and the availability of more accurate home BG testing and CGMs it is now possible to get a better handle on things. It takes a lot of work but also a lot of education and support from your clinical team. They/you have to be willing to look for patterns and do the basal testing as well as the I:C and CF testing to keep you dialed in safely. I think a lot of practices do not push this because of fear of lows/lawsuits as well as the fact that things change with D and you have to be willing to redo/reevaluate all your testing/calculations whenever anything changes.
I started with an A1C of 11 and was able to get it down to 5.8 on MDI without lows. It took a lot of testing, good record keeping and accurate nutritional logs. It took a lot of self education and a willingness/ability to test around 10x a day. When I got my CGM I found out all that I was missing and further modified my foods and the timing of my dosing. It has made a huge difference and helped me get pump ready. Now that I'm live with my pump I have been getting it dialed in so I can keep my tight control and try to improve it even more. It has been a whole new set of tricks to master.
There is no reason that a PWD should not strive for normal numbers rather than the higher ranges that are known to cause long term complications if you can get there without going low. Our clinicians should be right there with us, helping us to get there too.
The insurance limitations on testing supplies, pumps, CGMs etc that limit many peoples ability to care for themselves adequately are just criminal in my book. The cost in the long run is more if you have to treat the complications rather than prevent them.
Sorry - end of rant!
As to you original question - so far I have not had any but I'm new to the game - just diagnosed this January at the ripe old age of 60. Now looking at working for the next 8 years or so, so I can get the upcoming tech improvements before I retire and have to rely on the non existent coverage for pumpers on medicare. Am hoping they get this fixed before I need to use it!
http://www.a1cnow.com/Professionals/About-A1C/A1C-and-Complications
Thank you for all this information. I would give anything to have Type 2 diabetes! Seems easier to manage AND less chance of complications, therefore a little longer life expectancy. I totally agree with u that all medical professionals involved with diabetes should be more strict and i also agree that it would be less money to prevent the complications then to treat them. I can only hope that all my hard work is gonna pay off. Thank you.0 -
The less time you spend above 140 the lower your chance of developing complications. The tinnitus I developed shortly after my dx has started to resolve now that my numbers are in a much narrower range. I thought that it was the metformin I was initially put on as I was misdiagnosed as a T2 since I was 60. But it is actually a symptom of my sugar spiking - either up or down. My CGM has made such a difference. I can see trends before they get too far along and can make corrections as I go.
My doc set my target at 100 but if I use that then I get big swings after meals. I do much better with a target of 85. The longer I stay in that range the greater my insulin sensitivity and the smaller my doses are. Went to a pump so I could get the micro doses for basal and bolus. Could not do single unit dosing with MDI had to go to half unit on bolus and still had to eat to the insulin rather than dose to the meal. Was getting close to needing half unit on the basal as well before my pump.
Obviously every one is different, but I have had better luck using the info on how to test and set your basal rates, check your I:C ratio and test your CF and insulin duration found in Using/Pumping Insulin than in the handouts form my endo practice. My rules on when I correct are totally different from their recommendations. Having the dexcom G4 has made this possible. Would give up the pump before giving up the CGM. The other huge tool has been this site! Recording food info so I known how to dose has been a large part of my success. Get a food scale if you don't have one, it is a big part of getting the nutrition number right. Using my cgm to show when to dose in relationship to when I eat to stay as flat as possible made a big difference too.
While I do not follow their rules they can not complain about my success, especially since I can prove that the almost normal A1C is not caused by going low.0 -
I have been T1D for almost 23yrs and am almost 31. I have MANY complications already. I have severe neuropathy in my feet and legs, along with an open ulcer on my left foot. I have all of my limbs still though, but it scares me every day. I have to be careful with my kidneys because I went into renal failure in Feb. 2012. I am severely blind and have to have Vistatin injections in my eyes to control the Macular Edima and Macular Nonprofusion that I suffer from. I've had laser surgery on both of my eyes 4 separate times from Retinopathy. I also have severe gastroperisis. I am unable to take my boluses for my meals until an hour to an hour and a half after I finish eating because it takes my stomach that long to start to digest. It gets scary when I go low because it still takes an hour for me to go from 50's to just over 100 just because of the digestion. I have to hold honey in my mouth for 20 minutes without swallowing it in order to get it to start coming up so that the honey can soak into my oral cavity and get to my bloodstream that way. My youngest son has many medical complications due to my diabetes because they wouldn't loan an insulin pump to me during his pregnancy (they did with my oldest son). I had horrible control with his pregnancy and he now has had 2 open heart surgeries, missing bones, a brain condition, and is about 2 years behind developmentally. My highest recorded blood sugar is 1029 and I drove and walked into the ER on my own power at that time in DKA. My lowest was 11 while I was in the hospital for my kidney failure and had a full understandable conversation with the nurse telling her NOT to give me the full tube of sucrose or she will skyrocket me. I am terrified ever single day and night that something is going to happen and I will either leave my kids while they are very young or lose my limbs or eyesight. I tried so hard to control my diabetes as I got older but it was the bad choices I made as a kid that got me to where I am today. No one in my family has diabetes, T1 or T2, and in the small town I lived in, I was the only child with diabetes. I regret it every day of my life...However since going live on my pump my vision issues have improved slightly. I haven't had to have my injections in 4 months, when prior I was getting them every six weeks. My eye dr contributes it to my 8.6% A1c vs my nearly 15% A1c.
Jenn0 -
I have been T1D for almost 23yrs and am almost 31. I have MANY complications already. I have severe neuropathy in my feet and legs, along with an open ulcer on my left foot. I have all of my limbs still though, but it scares me every day. I have to be careful with my kidneys because I went into renal failure in Feb. 2012. I am severely blind and have to have Vistatin injections in my eyes to control the Macular Edima and Macular Nonprofusion that I suffer from. I've had laser surgery on both of my eyes 4 separate times from Retinopathy. I also have severe gastroperisis. I am unable to take my boluses for my meals until an hour to an hour and a half after I finish eating because it takes my stomach that long to start to digest. It gets scary when I go low because it still takes an hour for me to go from 50's to just over 100 just because of the digestion. I have to hold honey in my mouth for 20 minutes without swallowing it in order to get it to start coming up so that the honey can soak into my oral cavity and get to my bloodstream that way. My youngest son has many medical complications due to my diabetes because they wouldn't loan an insulin pump to me during his pregnancy (they did with my oldest son). I had horrible control with his pregnancy and he now has had 2 open heart surgeries, missing bones, a brain condition, and is about 2 years behind developmentally. My highest recorded blood sugar is 1029 and I drove and walked into the ER on my own power at that time in DKA. My lowest was 11 while I was in the hospital for my kidney failure and had a full understandable conversation with the nurse telling her NOT to give me the full tube of sucrose or she will skyrocket me. I am terrified ever single day and night that something is going to happen and I will either leave my kids while they are very young or lose my limbs or eyesight. I tried so hard to control my diabetes as I got older but it was the bad choices I made as a kid that got me to where I am today. No one in my family has diabetes, T1 or T2, and in the small town I lived in, I was the only child with diabetes. I regret it every day of my life...However since going live on my pump my vision issues have improved slightly. I haven't had to have my injections in 4 months, when prior I was getting them every six weeks. My eye dr contributes it to my 8.6% A1c vs my nearly 15% A1c.
Jenn
Wow! I am the only one with T1 in my family. But my granny got T2 a few years ago...I can only wonder that im safe with the highest A1c ever at 8.9...not sure what best is. I think i mostly stayed within the 7's my whole 22 years having diabetes. Ive never had DKA thank God. But I did end up in hospital a few times from lows....If I were u Jenn, I would do EVERYTHING in my power to control that disease! You have children who need their mom......0 -
type 1 since age 12 when i was put in iccu prolly had it longer since I had it hard. Its been 21 years and No complications. Yes it has been harder to controll even though I exercise but no complications. The dr told me I would be in and out of the hospital at the age of 12 havent been back once. Ive had two babies my first one sent to nicu but she healthy now and sec healthy from start. I have been blessed. Dont get yourself down just take care of yourself and eat right. Usually complications come from high numbers0
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Usually complications come from high numbers
That's exactly where all of my complications came from. I didn't care when I was a kid, I was the only kid in town with it and was made fun of horribly and was left out many times by teachers and other adults when it came to things that other kids were doing (parties, field trips, etc) so I rebeled against it all. I regret it horribly now. Now that I have better control with my pump (A1c going from 14% to 7.8% in 4 months) the symptoms and effects of my complications have lessened. I still have them but they don't effect me as severely (vision and neuropathy).
Jenn0 -
been t1 for 28 yrs & had a low bs coma while pregnant. Tubes tied now-0
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http://scottsdiabetes.com/2014/04/diabetes-complications-hope-talk/#wysija
Diabetes, Complications, and Hope – Let’s Talk About It - May 20
I’m very happy to announce the return of the Diabetes Hope Conference!
We have another amazing lineup of panelists (some returning, some new), with what we hope (no pun intended) are topics that you feel are worth participating in.
This year we have a very special opportunity to present questions from the community to Dr. John Anderson, Immediate Past President, Medicine & Science of the American Diabetes Association.
I hope you’ll submit your questions, and invite your friends (and readers) to do the same. This should be a really fun session, with questions being presented by Christel and Karen.
In addition to Dr. Anderson’s participation, we’ll be exploring the value of blogging in chronic illness with Pamela (co-author of groundbreaking research on chronic pain/illness and blogging), Kerri, and Mike, and discussing patient/doctor relationships with Dr. Jen and George.
We’re also very excited to add the ability to tune in with your mobile device (smartphone or tablet), and thank our sponsor, Metanx, for that additional capability.
The first year really seemed to resonate with people, and sparked some really great conversations, both during the event, and long afterward.
We hope this year is twice as good.
The Diabetes Hope Conference is happening on Tuesday, May 20, 2014, from Noon – 3:00 pm Eastern Time (USA). Registration is completely free, and you can tune in from anywhere.
If you’re in the sharing mood, I’d love your help in spreading the word. We’re using #dHopeConf as the hashtag on Twitter, and have some simple graphics you can download and use if you’d like.
Want to know how this all got started? Check out the backstory.
Disclosure: I have an existing business relationship with Pamlab (Metanx), sponsors of the 2013 & 2014 Diabetes Hope Conference.0
