Amount of time you've lived w/ Complications

I agree Onesaint. Last summer right after I started on the pump, I zonked out in the middle of the night. I was apparently screaming & banging on the walls before I passed out & my neighbors called 911. After I got home from the hospital, I got a shower & noticed a huge blister on the side of my foot. I immediately called the doctor I see for my feet – he is a wound specialist. It healed up really fast and he told me that he never saw a diabetic foot do what it is supposed to do before.

Still trying to get that tight of control, but I won’t know until June. I am lucky, because I do seem to heal relatively fast – I had the beginnings of a pressure sore on my heel when I was in the hospital last September, but I kept the weight off it, and it did heal, although it took about a month. (Rather not go through what Kelly went through!) I also rarely get colds. And the incision from the angiogram is healing properly.

I’ve also read that we heal slower as we get older, but you ain’t there yet, onesaint! :slight_smile:

“I’ve also read that we heal slower as we get older…”

There could be some truth in that, Natalie. I’m 62, and never had any healing issues, until last fall (right before I hit 62). I had slit my finger with a box cutter, while laying some carpet, in the dining room. It took almost 2 weeks to heal. Since then, there have been a couple more cuts (not with the box cutter), and they took between a week and two weeks.


Funny, you don’t LOOK 62! :slight_smile: :slight_smile: :slight_smile:

Ditto! I was just going to say the same thing!

Floaters may be blood dropletsandcan be dangerous. I had them in both eyes, initially treated by laser to cauterize the blood vessels that were growing at the back of my eye. Eventually one of the blood vessels rupotured and blinded be with an eye about 50% full of blood. Fortunately a wonderful doctor at Vanderbilt University performed a Vitrectomy on each eye about a uear or two apart. I was blind but now I see!!! It is amazing what they can do nowadays. When I see any new eye doctor or retina specialist, they always comment on the work that was done on m y eyes and comment what a good job was done!Fortunately no changes and that was about 20 years ago!!! Fine font stilol bothers me but otherwise things are good.

This is the first that I have heard of this since I had my eye problems. I had my problems right after going on the pump and they told me that sometimes good control after lack of control can cause vision problems

ditto exact samething for me in 1991- 1992 but 20 years and 2 Vitrectomies later all is good. I hate the peripheral vision lost and regularly walk into low items that i can not see. Fine font is an issue but no problems w color. If they know this can happen why aren’t we cautioned? I waspart of the dCCT study in the 90’s where they were trying to provr good control reduces complications but in my case and several others here tight control causede the complications - go figure!!!

Hi Danny,

I have had T1 for 32 years.

It is an interesting topic. Retinopathy for me is in a good and bad way and obsession of mine. I started have noticeable vision problems in 2002. I had mild NPDR ( Background retinopathy) since my 20th year, but to be honest my control was not that great ( in the ( Aic range for a long time). When I finally had a progression to moderate NPDR, there were some cotton wool spots, which are basically infarcts ( interruptions) in the nerve fiber layer of the retina. While the Cotton wool spot is in fact a result of the interruption of blood flow or oxygen to parts of the retina, the swelling it causes is transitory...mainly it can regress. What it causes to the veiwer is little grey spots in the vision. Unfortunately even thought hose can fade, the damage that caused the swelling in the nerve layer is generally a small permanent scotoma or spot in vision.

So, long story short, I got in gear and did all I could to get in better control. The Retinopathy has not really progressed in 6-7 years. I have a small amount of leakage as well, which , I hope in time will reabsorb. It comes and goes. My vision is still 20/16, and I don;t have problems with sight other than the symptoms I mentioned.

I will admit freely I am very scared of progression, and the idea of PDR make me become an emotional wreck, because I am such a worse case scenerio type person. I do go to the Beetham eye institute at Joslin and have since I was a teenager. I think I drive my drs a little nutty because I am so in tuned to any vision fluctuations, but my Endo seems pretty confident my Retinopathy can stay stable, and my outcome looks good. I guess I have to trust that, but still be vigilant, because at the end of the day it is my quality of life that is at stake. I am a designer and a painter, so vision is everything to me.

I think, the early worsening seen in the DCCT trials was seen in a relativly low percentage and I have been told that you need to lower it 3% or more for it to really be a concern. Say an A1c of 10 down to 6. If you are looking to tighten say an 8-7 or 7-5, there is less risk. This again has some things to do with genes as well.

I have read a lot about how there are three paths, to Background retinopathy. Type A, B . C. Those being , slow, wet, and ischemic. 66% of cases tend to be slow and follow a path that has better prognosis. I hope mine is that, simply because it has progressed rather slowly, and at the same time, my goal has been to try and stabilize for long enough for some potential reversal to happen. Being in the Moderate stage, it might still be possible, but thats why it is so important to me, as once you start to reach more severe NPDR, the damage already done is going to be harder to heal. Severe Background tends to have more ischemia ( oxygen damage from capillary fallout) and swelling and damage to the larger vessels.

Anyway, these reversal, or stabilization stories give me hope. I hope to keep my retinaopathy where it is and stop this emotional roller coaster. ;-)

CAn you tell me more about your moderate retinoapthy? I have it too. Ddid you have any visual symptoms? Did it actually regress a little, or just stay stable?

My hope is with tighter control mine can stay were it is. I have had moderate for 6-7 years, and it has not yet progressed. Congrats to you ;-) Just nice to know it can be done.

Geez, I’ve told this story so many times, I almost hate telling it again. I lost a lucrative career because I kept getting sores on my feet that wouldn’t heal. I’ve lost so much sight that I can no longer drive and rely on family to help me out. Last year I had a hypo in my sleep and sustained brain damage that affects my memory. Need I go on? Because I could. And I’ve done my damnedest to take hold of this disease. Trust me, it’s worth every minute you spend taking care of your illness. Your freedom is really at stake. So take hold of this illness, and fight the hell out of it. Diabetes is a serial killer. Don’t allow yourself to become just another victim.

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Wow Josh, we must have both been diagnosed at almost the same time (1978, for me). I’ve been diabetic 34 years now…never met another diabetic that’s had it as long as I have…

Eric, we have a group on tudiabetes that is called "diabetes for 30+ years".. I am a member. There are many people here on tudiabetes with diabetes for over 30 years: I think Shoshanna has had diabetes for 65+years, and richard1957 for over 65 years as well. I have had diabetes for 43 years.
Getting back to complications, I have mild-moderate( but it varies from day to day and gemerally just bothers me at nigh), tingling, slightly painful neuropathy in back, feet, and calves. Improves when I am in consistent control. I am just coming back to better control now. My Dad just died in Apri, so I had many BG swings due to stress, tiredness, and just greiving. I am convinced that the BG "swingset" really makes the neuropathy worse.
I take Lyrica at a very small dose, 50 mg, daily, as I do not like the side effects of higher dosages( leg edema, hair loss, double vision). As for time span. I got a sudden onset of the neuropathic symptoms as a result of a serious b-12 deficiency, also autoimmune, in 2002 (I was hospitalized and could not walk). I had a fantastic recoverey, but the nerve symtoms have not completely left. ..They seem to have gotten a bit worse as I age. But then, my blood sugars have not been stable for the past couole of months a I said, so that is also a causative factor... I keep on going anyway. The pain is may be a 2-3 on the scale of 1-10 during the day and a 4-5 on the worst nights. I can, When I am busy and active, push it to the background and ignore most of the discomfort. Exercise helps....No eye, kidney or autonomic issues. Cholesterol levels and heart function are at "optimal levels', say the test reports.

God Bless,

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Hello fellow diabetics. I have had Type 1 diabetes for a very long time and was recently diagnosed with NPDR. Very scary! My Ophthalmologist told me there is nothing they do for this right now but my part is to keep my blood sugars very tight. I have a CGM and am trying to keep my A1C’s below 7 but everyday is a challenge. Danny2 I was so thankful to read that it’s been 9 years since your diagnosis. That gives me hope!

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Welcome ! Your profile shows 60 years with T1D, that is incredible to only be showing NPDR now.

I have had T1D for 53 years, and was diagnosed with NPDR after about 20 years. The options and technology available today is tremendous compared to 1980s. So you are very lucky.

I suggest you may want to get an appointment with a retina specialist. They specialize and may do treatments that Opthos don’t have. Often they will take photos of eye retinas, for comparison of changes over time.


Thank you SO MUCH MM1. Great advice about seeing a retinal specialist. I just got the name of a great one in our area. I will make an appointment tomorrow! Thanks again!


Great !

When it comes to your vision, always helps to get a second opinion, even if it simply confirms the advice of the first doctor.

I was not as lucky. In late 1980s, I had bleeds in both eyes, and scheduled for laser treatments. (I had been seeing optho every year since childhood). The equipment they had back then was archaic compared to what they have now, and few places had them.

When my laser appointment came up about 2 months after scheduling, the equipment was not working, and postponed my treatment for 2 months. Then had about 10 laser treatments on each eye done by optho, and vision improved.

But after a few weeks my left eye became totally cloudy. Dr recommended a vitrectomy, but that I should wait 6 months. Got a 2nd opinion that suggested to do sooner, but first Dr strongly disagreed, and said many cases will clear on their own. So I waited. 6 months later, I had the surgery, and had some vision, but also scar tissue had formed that they were unable to see while I was waiting for 6 months.

From hearing stories from others, I know that treatments today are done sooner with less invasive tools and fewer people get to the point that I got to. Much more preventive care is available, in particular tools that help keep BGs and A1Cs much lower than in the old days.


@Jane22, I’m curious whether the retinopathy was diagnosed before or after you got a CGM and/or tightened your control. There is good evidence that better control can (paradoxically) result in retinopathy or worsened existing retinopathy, but this often resolves on its own after a few years for mysterious reasons. Which is maybe why your ophthalmologist is taking a wait-and-see approach if laser would not be of much benefit for non-proliferative retinopathy right now.

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That was what happened in my case. I had dropped my A1C about 2 points, while using NPH and Regular, but it involved many more up and down BG fluctuations. And was also at the 23-24 years w/T1D timeframe, where it was also common.

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Beacher, I couldn’t believe what I read when you asked if my NPDR was diagnosed AFTER I was on the CGM! YES, it was diagnosed AFTER I got on the CGM! Talk about baffling! Thank you so much for the site that explains this better. I will definitely check it out. I still plan to see a retinal specialist so he/she can take pictures etc. In the meantime I will continue to try to keep my A1C’s under 7 which they actually have been for the past 3-4 years.

Thanks again for responding! Have a good day!

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