Feeling loss

Community Share Your Stories
1

Well, there is a double edged sword to getting your A1c in tighter control when you have DR. It gets worse.

So after 6-7 years of moderate NPDR my eye dr casually tells me I have Severe NPDR in my "good eye" due to the increase in micro anyarysms in the peripheral.

I am emotionally numb and beyond terrified that this is the short path to PDR. He said it does not have to get worse, but it might.

Well, what other choices are there? It get's worse but maybe won't.

Needless to say my hopes of making my DR go from Moderate to Mild feel dashed and once I have reached this level I feel like it is a one way path. I am so sad right now, it is surreal.

I have been working so hard, maybe it was too fast... from a 8.0 to a 6.2 in under a year. I don't know what to think.

37 feels to soon to be worrying about my eyes this much. Bu there it is. My career as a designer, sitting in the balance. My obsession of my eyes hurting my relationship with my wonderful supportive girlfriend. The meds I take and the therapy I go to, not really helping much.

This illness really sucks.

2

Yes, when your A1c lowers this can hurt your eyes, but there's no choice and no good way to do this: lower is better, but actually nobody knows.
Now you have to keep going and keep a steady A1c, no lower than needed no higher, and keep glucose levels "intraday" range tight. This should stop it getting worse, and let it better a little. And at last there's something new which can be done: new pharma and therapies.
Keep good, and enjoy your A1c, things will get better !!

3

Yes, this disease sucks, i agree. . i am 40 years old w/ type 1 and also have NPDR. . I started receiving Scatter laser treatments one year agao and it is slowing the progression substantially, have u started these treatments? talk to your opthlamologist about starting treatment asap. Google "retinal consultants" they have offices all over the US, they are treating my NPDR.

4

Thanks for the kind words. No, I know. I go to a retinal dr at Joslin and have since I was 15. Scatter treatment is for leakage, and micro anarysms in the macula and surrounding area. Not what I am talking about. For what I am discussing the treatment is pan retinal photo laser for Severe NPDR to PDR from ischemia due to capulary closure from Cotton wool spots, and the non perfusion that comes from a lower A1c. I understand the mechanism of retinopathy very well, as I study it quite a bit, but I am just at an emotional loss from the fact that despite the hard work, it is getting worse. It is hard to find the right balance that the body will be able to heal to.

5

oohh, i understand now, im sorry, i do understand trying to find the right balance, i am still searching for it. . . i have never been able to get my A1C below 7 w/out many lows and yet between 7 to 8 suffering from complications. . i feel stuck between two evils. I am impressed w/ your knowledge!

6

I agree, it does suck. I make my living with my eyes as well. Have for 40 years. I also have NPDR. I brought my A1c down to 5.6 from 12.3 in four months. I didn't know that was too fast. All I knew was that normal BG was the only thing I could do to try and reverse my NPDR and PN. I suffered the the worsened vision and extreme pain for srveral months. I've had four rounds of injections(Avastin) and three rounds of laser. Both the PN and the NPDR are better, but not gone. They continue to improve though. These complications and their improvement motivate me to keep a tight reign on my BG. My A1c last week is still ar 5.5. Beyond that I take 1000 units of r-ala per day along with 1000 fish oil. My Dr just started me on 200 mg L-Arginine and 25 mg DHEA per day. I don't know if it is coincidence or not, but after the first day I could see a marked improvement in both issues. A very noticeable difference.

When I started this process I was told by most that they were probably NOT reversible. I am finding that NOT to be true. It is a slow process that does not always seem to be going in the right direction, but eventually the setbacks turn into gains. Be committed, patient and work hard. I don't know if I can get back to 100%, but I'm going to try.

7

Thanks Randy. I am hoping even with my left eye at Severe NPDR I can stablize it. My other eye dr that I get a second opinion from thinks I can. It is just hard to deal with . I have worked my butt off to get to a 6.5 and yeah i tend to have some lows which cause spots to happen. I wish I could see into the future a bit to see if I am on the right path or not. My endocronologist thinks I am, and also thinks the first eye dr I have tends to be severe in his assessment of my eyes, and that he thinks the changes are a result of the lowering the A1c and will get better in time. We will see...all I know is I obsess about this a lot and am pretty scared of getting worse and hving to have laser done.

8

It could be worsened by the quick drop. But the issue still existed in the first place. Your A1c is an average. You want the numbers that make it up to be as flat as possible. Keep working on your BG. Experiment with some lower glycemic foods than some of the carbs you have been using.Check out the r-ala if you haven't already. I know that it has helped me and I believe it has helped to keep my numbers where they are.Like I said, it's not a quick or linear process. Just stay on course and don't get discouraged. You have to latch on to it like a pit bull. The key really is your BG.

Also, the laser and injections are not as rough as they sound. You do want to make sure that they are done with an argon laser. I can't remember the earlier type, but I have had both. Hold out for argon. The older stuff is very uncomfortable, even painful. I never had any real pain with the argon, even at the higher settings. There is a new laser therapy called micropulse (I read about it in Retinology Today)which I believe is still in testing. If you get to that point you might want to check it out. It is supposed to be less damaging to the surrounding tissue.

If you want more specifics about anything I have done, let me know. I am more than willing to go into whatever detail might help. I just don't want to come off like "do it my way and you'll be fine". I know we are all different and my success is 2 cents for some one else.

9

Hell Randy I am all ears man. Any advice you have for me, I am happy to get. My goal with my CGM is to have a more even blood sugar level, and avoid the spikes and falls. My eye dr said to avoid the lows as much as possible. I am trying my best by doing low carb in general, I don't drink, I don't do caffeine, I don't even drink soda because of the aspertame. Do you find cardio helps? I need to do more of that, as I tend to do moderate weights, but really feel because my blood pressure is low, my blood flow needs to be stronger through improve my circulation. My eye pressures are at 12 and my bp is usually 110/70 on average. I don't feel the need to go below a 6.5 but just try to maintain a consistent level. I have not had a blood sugar over 240 in a couple months, which for me is amazing. I used to hit 300+ without breaking a sweat. I think I stayed at moderate despite the A1c in the 8s because I was pretty consistently that. So i certainly get where you are coming from with the consitancy being vital.

Any advice you have man, I am happy to learn from you. Thanks.

10

Well, to begin with, when I started this journey 18 months ago I knew virtually nothing about D. I began learning as much as I could about it and how my system responded to food, meds and exercise. I have never been particularly athletic and my PN still limits what I can do. That being said, here is some of what I do and why I do it. Hopefully you can find some useful ideas that can be of some help.

To begin with, your A1c is an average. A normal A1c is between 4.5 and 5.4. I started with a 12.3 in October 2010. In Feb of 2011 it was 5.6. Problem was that I was all over the place from well over 200 to the 40's. Good A1c with crappy control. I restricted my diet both in variety and carbs to eliminate the variables while I figured out insulin and my body. As I learned more and became more comfortable with my diet and routine I added more foods.For me, this is an ongoing process. Because I test 6 to 10 times per day I know that my subsequent A1c's are good numbers. I rarely see anything over 140 or so and seldom fall below the high 60's. Most days I rum between about 85 and 125.

I try to stay around 100 carbs per day, more or less. The carbs I do consume are primarily low glycemic. With rare exceptions I do not eat any white flour, potatoes, rice or sugar. If I do I treat it as a relish and limit myself to just a few bites as part of a meal only.

Here is a typical day for me. Breakfast at 6:00 is 3 eggs, 1 slice sweet potato chopped, maybe some bacon or sausage chopped and cheese. All prepared in one skillet scrambled. The meat, if any, and sweet potato are precooked and just reheated. Between 9 and 10 a.m.I have some raw almonds, an Extend Bar (these have been a great find for me) and a small cup of coffee. Lunch is between 1 and 2 p.m. and is about 6 ounces of roasted chicken and some type of cooked veggie (again, this is all precooked and simply warmed up). I have a snack around 5:30 which is usually some cheese, 2 cups of popcorn (which I season in various ways) and most likely one beer. Dinner is around 8:00 and is some type of meat or fish with a veggie. I usually have some peanut butter just before bed. NOT JIFFY! The only ingredients in my peanut butter are peanuts and salt. Obviously not every day is exactly the same, but this accounts for at least 80 to 90 percent of my meals. I prepare a lot of my food ahead of time on the weekend and try to cook a little more than I need at other times. This way I have some known and safe foods I can grab and go. If I eat out I stick with salads or other things I can account for with some degree of accuracy.I have good portion control, but I have been doing that for a long time before D. If I splurge I plan for it and try not to get too carried away. I usually have to correct for those episodes. I try to make my diet do most the heavy lifting and only use insulin as minimally as possible. I feel this gives me flatter results and very few severe lows.

The hardest thing for me was to establish a routine and restrict the variety. Like my father always said, I used to live to eat now I eat to live.

11

All good stuff Randy. Thanks for the insight into your routine.

12

Randy, you have had T1 for only 2 years and had laser already? What level of NPDR did you have? I assume it was focal laser for leakage. I can't imagine someone would need PRP within 2 years. See the main problem is I have had T1 for 34 years ;-) that might prove to be more difficult to help the retinopathy settle.

13

You may be right about that.

Thing is I was diagnosed in Oct of 2011. The best I can figure I have had some symptoms of D since the late 90's. Before my DX I had not been to a doctor since 1992. I ate healthy, never got sick and was not overweight. Since I knew nothing about D I had no clue or even a concern. Then I finally all began to unravel I got health care insurance again and here I am.

When I started having real vision issues I thought it was because my rx was out of date. My retinologist did not give me much hope in the beginning. He was pretty bleak with his outlook. I think he is as excited as I am with the progress.

14

Well I am happy for you about your progress, I just think we might be talking about two different issues. Unless you were T2 and then shifted to T1 or T1.5 over time, I can't see you being T1 that long. But your suggestions are still good ones regardless. Being T1 since I was five and having retinopathy since I was in my 20's I see my situation a little different in terms of prognosis. Anyway, i will keep trying.

15

Josh, I understand the feelings you are going through. I went from no signs of retinopathy to severe proliferative in the blink of an eye (no pun intended) and then I freaked out, lowered my A1c, and made it worse for myself...and almost overnight I needed many (ie dozens of) laser treatments. I also had surgery. The GOOD NEWS is that after all my laser and my surgery one of my eyes is completely stable - no signs of any further retinopathy AT ALL. The other eye (that I only had laser on, no surgery) has some mild/moderate retinopathy but it's slowly (ie over 4-5 years) tapering off and stabilizing as well. If your dr. ever suggests doing the laser - do it. It's well worth it in the long run.

16

Hey Josh. I am so sorry about your sad news. It IS very scary, you are right. From reading other's reports here I get the idea people vary a great deal in their outcomes with retinopathy. I think you can count on having SOME amount of vision left no matter what, given state of the art care, which it sounds like you are getting. For whatever THAT's worth, right? From reading your bio I get that you've not let diabetes stop you doing things even normal folks might be afraid to try. So bravo and don't beat yourself up about this as if it is somehow your fault. It's not.

I am artistic too, and not doing so well retinopathically speaking. I understand the loss. But I'm older than you, and more resigned to the fate we all meet eventually. I'm finding that really, as one pursuit becomes too difficult, another captures my interest, so life still holds much joy.

None of this is very encouraging. Maybe it helps to know you are not alone? Keep us posted. And thanks for sharing, Josh.

17

Thanks everyone. I realize this path is never one that stands still and is ebbing and flowing. I deal with the fear of losing my sight yet also realize I am so hyper focussed that even my eye drs tell me to try to relax. My endo Dr Wolpert at Joslin is a god send...and has told me one day i will look back and realize he was right when he told me I am destined for a long healthy life.

I think having T1 since 1979 I am not doing so bad, no kidney issues, no neuropathy, ( my dr uses the smallest needle to check my toes and laughs I can feel it even with my callouses) and my A1c is now down from always being in the 8s to the 6s. I have to expect that since that last part of the changes I have made are still recent....past 8 months, that I need to be patient and expect the retinopathy to worsen a bit before it gets better. I still don't have to have laser and my edema has always been minimal and even reversed a bit. The main thing was new hemorages in my peripheral, but damn, I have gone through a lot of changes in the past year and I am sure my body is readusting. I have two retinal specialists at Joslin and one is a very old skool man of few words... whom gave me the news ....he said it ws "slightly more than moderate"... which of course I quietly freaked out over. I contact my other eye dr who had seen me 3 months before at my request because I was noticing cotton wool spots increasing....and at that time it was moderate and he felt I could reverse it a bit,, but it would take some years of constant control, like I am doing now.

He too was sad to hear of the news but suggested there is hope it can and will stabilize, and he said the good news is he is confident even if ultimately I had to have therapy for it, I would do well. So what else can I ask for?

I gave up drinking all together, I gave up coffee, even diet soda because of the aspertame... I eat lower carb and lots of leafy greens and am now trying hard to do cardio every day. I lost 20 pounds and am back to my weight of 165 ( i am 5 foot 9) so my BMI is much better too. I got the A1c down just oldskool without a pump, and a cgm, and did it with 20 blood sugars a day and being dedicated to following though even in the middle of the night. I am proud of that. So now I am on a Dexcom and multiple injections. I might go on the pump but am still scared of the scaring I used to get and the spikes by only having fast acting in my system when I was on the Animas 1200 years ago.

I used to feel invincible...I have not in 12 years but I am also trying to not get so caught up in my depression over what ifs, that I waste my life not living.

Everyone else seems to think I can beat the DR, I guess I need to start believing despite this set back, it might be transitory and I am doing everything in my power to make myself healthy again. My endo said something funny the other day...he said, (after assuring me the changes where likely transitory worsening) that "My rule is that when things work out well you should take credit; when not, blame the diabetes (it's not your fault your pancreas isn't making insulin, right?) and vow to do better tomorrow."

I am going to try to take that to heart.