"Many long-term survivors with diabetes show little or no progression of retinopathy after a certain point, and this resistance apparently has nothing to do with glycemic control, a researcher said here.
A new study of 'Medalists' a cohort of diabetics who have lived for 50 years or more with the disease, assembled by the Joslin Diabetes Center in Boston, indicated that about half did not have proliferative diabetic retinopathy, and those individuals almost never showed any worsening of eye disease after the first 17 years."
[url=http://www.medpagetoday.com/MeetingCoverage/AAO/22856]Medical News: AAO: Ocular, Glycemic Surprises Found in Diabetic 'Medalists' - in Meeting Coverage, AAO from MedPage Today[/url]
It's interesting you post this Richard because when I was seen up at Joslin during the 2 years I lived in Boston, my endo there told me they were finding that d-related kidney disease is unlikely to start after about 20 years of the disease. I'd had T1 for about 22 years at that point, so she took me off the preventative med (lisinipril) I was on b/c I didn't have any signs of kidney problems. Have you or Tom heard anything about that? She didn't quote any studies, and at the time, I didn't think to ask.
[quote user="Sarah"]
It's interesting you post this Richard because when I was seen up at Joslin during the 2 years I lived in Boston, my endo there told me they were finding that d-related kidney disease is unlikely to start after about 20 years of the disease. I'd had T1 for about 22 years at that point, so she took me off the preventative med (lisinipril) I was on b/c I didn't have any signs of kidney problems. Have you or Tom heard anything about that? She didn't quote any studies, and at the time, I didn't think to ask.
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I haven't done very much investigation of kidney problems, or the lack thereof, because I have been fortunate to not have encountered any kidney problems so far (67 years + 11 months). So I guess my experience has supported what you were told, Sarah. I have been taking lisinopril HCTZ that was prescribed by my cardiologist about 10 years ago.
As far as the retinopathy is concerned, I must be an exception. Background retinopathy was dx about 45 years ago, when I had been diabetic for about 22 years. About 5 years ago the right retina became proliferative and required laser treatment. No further problems since then.
My experience as a patient in the 50-Year Medalist Study at Joslin Diabetes Center in Boston leads me to say that Richard's statement, without the question marks, is accurate, although I seem to be an exception.
Tom, I had no symptoms of any D complications until the mid 1990s. That was 50 years after my diagnosis in 1945. I had spots of retinopathy in both eyes and some neuropathy in one foot. Neither problem progressed. In fact the retinopathy would disappear, and then show up again. My ohpthamologist was seeing me every two months. When my blood sugar was bouncing around with too many highs and lows, my retinopathy would reappear, and my neuropathy would increase too. Stabilizing my blood sugar caused all symptoms to improve. Then when I started pumping in 2007, the symptoms totally disappeared. Now I can say I have no D complications.
So I am definitely an exception to the "20 year rule". Mild complications first occurred after 50 years, and now no complications after 65 years. I have seen many diabetics post on the D sites that their doctors told them that if they have no complications for their first 20 years, then they are unlikely to ever have them, provided they maintain good control. But Tom and I are exceptions. I'm sure there are other exceptions as well.
Sarah, I have never had any kidney problems, but my doctor started me on a BP med many years ago. I was not having any BP problems, so I assume it was for preventative purposes to protect my kidneys. He is an internal medicine specialist and is in charge of the kidney/dialysis center at a local hospital. I have taken BP meds for many years now, and my BP sometimes runs too low. It was 104/50 at his office on my most recent visit. Is it any wonder that I have a lot of dizziness? He has taken me off the BP med, totally. I was taking the lowest dosage prescribed. I am anxious to see if my dizziness disappears.
Sarah - I am also familiar with the "20 year rule", and have been told that by more than one doctor. I'm not sure what study/studies that information comes from, though.
Unlike the rest of you, I don't recall that the "20 year rule" has ever been brought to my attention by any of my doctors.
I started using an insulin pump in 1995, 52.5 years after dx (having already earned my Joslin medal). I love to point out that before starting pump therapy I had many, many occasions of severe hypoglycemia that required transport to the ER. I never attempted to keep track of, or count, those occasions, but there were a great many. And of course, that's indicative of relatively poor control, in spite of the best efforts of me and my mother. Now, after 15 years of pump therapy, I can brag that during those 15 years there has not been even one occurrence of severe hypoglycemia requiring transport to the ER. I realize that bragging about this is probably asking for trouble, but I want to get the message out to prospective pumpers to show them how much of a difference can come from an insulin pump.
[quote user="Richard Vaughn"]
I have taken BP meds for many years now, and my BP sometimes runs too low. It was 104/50 at his office on my most recent visit. Is it any wonder that I have a lot of dizziness? He has taken me off the BP med, totally. I was taking the lowest dosage prescribed. I am anxious to see if my dizziness disappears.
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I was also worried about this when I was put on lisinipril because I tend to have low blood pressure. But, my endo claimed it was such a low dose there was no way it would actually lower my blood pressure. Obviously, you could be the exception, but it didn't affect me at all.
I'm personally happy to be off lisinipril though because you can't be on it while pregnant. Per my endo, it's NOT good for the fetus. While not trying to conceive now, it makes me feel better not to worry about it while in my childbearing years... I think you're okay though, Richard. (:
Sometimes I get too much information about diabetes. I feel like it is most likely my little girl will suffer from complications
even if she does have good control. It makes me sad to think my wonderful child will have to suffer when she grows up.
If my daughter becomes a 50 year survivor she will only be 59 years old. I would much prefer they write about 70 year survivors.
50 years would be a short life for her. Blindness, kidney disease and amputations for such a wonderful joyful person would be
a tragedy.
[quote user="Terry"]
Sometimes I get too much information about diabetes. I feel like it is most likely my little girl will suffer from complications
even if she does have good control. It makes me sad to think my wonderful child will have to suffer when she grows up.
If my daughter becomes a 50 year survivor she will only be 59 years old. I would much prefer they write about 70 year survivors.
50 years would be a short life for her. Blindness, kidney disease and amputations for such a wonderful joyful person would be
a tragedy.
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Don't worry Terry, Joslin didn't set up the study because they expected people to die at age 50. It's to see why and how T1's are living with the disease for longer. If she remains in good control, her chances are good for a long life.
Terry, I have been T1 for 65 years and I have no complications now. There are 50 and 75 year medals awarded by Joslin. I have read about several people getting the 75 year medal. I expect to get mine in 10 more years. There is a man named William Rounds who has been T1 for 87 years. Google his name and read his story. It is very inspiring. He is my hero.
Terry, You also need to remember that 50 years ago (even 20 years ago) diabetes care was MUCH more difficult than today. As Tom and Richard (and several others in the 60+ age group) on here can relate, they only had urine glucose tests, no ketone tests, 1 kind of insulin etc. Tom and Richard's parents didn't worry about a rollercoaster day of high and low BGs because they had no way of knowing that is what was happening! They had to boil their syringes every day! When I look at it that way, I think it is a HUGE accomplishment to have lived 50 or more years with no or few complications. Now we have all these wonderful tools to help keep our kids healthy in our fight against this terrible disease. The best part of these tools is that they help us maintain good BG levels and lower the risk of those long-term complications. It also doesn't help to worry about the future - worry isn't going to change it. Consider it, and work to prevent it, but don't dwell on it. When I start to wade into the swamp of worry, I have learned to snap myself out of it by saying "or my son could be hit by a car tomorrow and then I wouldn't have to worry about any of this. I just don't know what the future holds." Morbid? Probably. Ridiculous? Maybe. But you can almost always find something worse. And it is way more fun to look on the bright side and celebrate the accomplishments vs. wallowing in the 'what ifs'. (That said - it is totally normal what you are feeling and part of the grieving process. So take your time in getting there.)
[quote user="JDVsMom"]
<snip>They had to boil their syringes every day!
<snip> Now we have all these wonderful tools to help keep our kids healthy in our fight against this terrible disease.
[/quote]
I need to make a confession, which I think most of you will understand. I was supposed to boil the syringe and needle every day, but that soon became a hassle, so I figured it would be almost as good as boiling if I stored the syringe and needle in alcohol. And I didn't pay any attention to what kind of alcohol I used for storage, so usually it was rubbing alcohol. This was ok with my mother too. The situation for changing the alcohol was very similar to what most of us now do regarding the changing of lancets - the alcohol got changed every couple of weeks (or was it months? I don't remember this detail.) Since alcohol has a tendency to evaporate, I don't think it ever lasted as long as a year, the way lancets do.
Back in the 1940s the only wonderful tool we had was insulin. And that was more wonderful than any of the newer tools. I guess I have used nearly all of the newer tools, and each one has made things better. With all the new tools it has been interesting to see how the mothers of then-current kids have pushed for the development and application of new tools to improve the treatment being received by their kids. There are so many of us who owe so much to what our mothers did to make us into responsible adults in spite of diabetes.
Fascinating stuff. I've been T1 for 15 years, so I guess I have five more to go before the clear, assuming I'm in the majority. I've never shown signs of retinopathy, but I did show protein in the urine (kidney issues) when I went off Lisinopril briefly. I got back on it and haven't shown any signs since.