Proliferative Diabetic Retinopathy and Coping


#1

Ok, that phrase alone - proliferative diabetic retinopathy - has got to be sending a chill up anyone's spine who is a PWD like me. I've been racking my brain over this for about 48 hours since my diagnosis (Friday 7/29/11). It wasn't a surprising diagnosis. After all I have diabetes since 1989 (22 years this December) and it is a complication that as we get older (44 right now) comes with the disease. That and a personal inability to control it effectively, until at least these last six months, probably have led to my downfall.


Now before you go and think, "Oh no he's blind," or "Pretty soon he'll have a guide dog," STOP. I am not blind yet, although admittedly I am taking great pains to write this without too many spelling errors and literally have my face inches from my laptop screen. I know BAD thing. Good news, we caught it. Bad news, well it's not curable. Even worse news, I don't quite know how it will affect me and my ability to work. I am at computers every day, sometimes 6-8 hours a day, looking at spreadsheets, small type, and other items. My work is all about detail. Spelling does count. Especially when you are dealing with money coming in and out of a company and transposing that. Or if you are working as a notary public and ensuring everything is complete in a document, your journal and even making sure you put your seal in the right place.

As you can imagine, given the last six months since I started my leave of absence, I have had a number of challenges cross my path. First the angina which led me to my new doctor and treatment team. I can say today that even though I still occasionally have "twinges," my heart is functioning normally - two echoes’ (treadmill and "dye") appears to have returned unremarkable. My kidney functions are a roller coaster still at best. My GFR numbers are slowly dropping as my serum (blood) creatinine numbers are rising. That is not a good thing, but it is more a "wait and see" approach. I can reluctantly live with that. My diabetes which was WAY out of control (13.9 A1C in March 2011) is now under much more tighter control being on Lantus and Humalog and on a much better and more understandable algorithm...the proof was a 6.9! I am nothing by psyched for that! I have to follow-up with a urologist due to some issues which I will not discuss here due to the more adult nature of them, but sufficed to say are diabetic related and something a 44 year-old guy should not be having. And now....this.

I was asked during a follow-up class at the diabetes center I attend in San Francisco by one of the CDEs (Certified Diabetes Educators) who also is a RN, "Anthony, how are you coping?" Admittedly, some days very well. Others not so well. When you are juggling your living situation (admittedly alone and let's just say not in the best of conditions (no not homeless)), your work situation (which is about to be decided now with this DX), and your health...not to mention your own economics and that of the country as it relates to you...well I think you can all see what I am facing. Yes I have even thought about asking to see someone professional. I think it IS that time.

So back to the newest diagnosis. In layman's terms, I am growing blood vessels where I shouldn't be. Sounds like something out of a sci-fi movie (ATTACK OF THE ROGUE BLOOD VESSELS). But add to that I have swelling in my eye and I have a "hole" in my eye. No not my pupil but a little "hole" in the macular. When you can't see street signs about 30 to 40 feet ahead of you, even though you KNOWS what they say from memory, well that's what I see. And yes, it is worse in the AM when I wake up, and yes, it's hard some days to be on the computer, which has been MY lifeline these last six months. It’s hard to chat when you have to press your face almost to the screen. I’m six inches away now and even with stronger bifocals the letters are there but with a slight haze to them, like a fog.

Phew. Well that felt good to get it out of me. But as you all can see, diagnosing and coping are two totally different and yet related things I have to face. The diagnosis, treatment and follow-up, well that's a given I cannot withhold that. The coping, the insurance, the potential of not being able to return to work when my LOA ends and having to do everything related to that, well that's another story. That is what I am trying to wrap myself around now. Yes, I know, it will come to a conclusion and work out somehow, that is what I keep telling myself. But until then...any "TuAmigos" or "TuAmigas" who have this and can offer their 50 cents of thoughts, please by all means do.


#2

Hi Anthony: You must be so worried right now. It’s so hard to stay calm when faced with complications. I can only tell you about a personal friend who has Type 1 and had serious problems with retinopathy. Like you, her blood sugars were out of control for awhile. She was very scared to have the treatment but she says it really wasn’t as bad as she thought. She is now fine and has had no further problems. I hope this is a little helpful. I wish you success on your journey. Joanne


#3

Ji Anthony. Just finished my second round of laser surgery for retinopathy. I had injections before each to reduce the swelling which worked quite well. So far things are much better. I also am using some eye drops that reduce the inflammation. These make a big difference, especially in the morning. I do not remember the name of this rx but if you want it let me know. I know exactly what you mean when you describe what you see. I know exactly what you mean when you talk about work and using a computer. I am a printer and have been since the early 70’s. I will freely admit to being scared when I found out about what this is. I thought I just needed a new eyeglass rx.

Do not waste time. get the best retinologist you can find and get to work.This is not a quick process. Most importantly, keep working like a dog on your BG. This is my primary motivation. Keep my BG close to normal and I can see close to normal. Hopefully for many years to come.

I would be glad to give any support and info I can. It truly is a scary and frustrating condition to live with.


#4

I hope that treatments will help your vision. I think the number of people who actually lose vision from diabetic retinopathy is very small. Good luck!

I also wanted to let you know that vision loss is not the end of the world. I know that to most people the thought of losing their sight equals a life of having to give up everything they used to do and sitting around doing nothing. Nothing could be farther from the truth. I have been legally blind my entire life and work with children who are blind and visually impaired in the public school system, and it is still absolutely possible to work on computers, travel, participate in leisure activities, and so on. It just means doing things a little differently. Right now I am using a Windows computer with Firefox (same as anyone else), but I have additional software that magnifies and reads aloud everything happening on the screen. I also travel every day in a major city with no problems (again, just using some specific tools/techniques). And there is nothing special or amazing about me—visually impaired people do these things regularly every day. :slight_smile:

I said before, good luck and I hope your vision stabilizes. If it doesn’t for some reason, and you have any questions about living with a visual impairment, please feel free to PM me any time.

Also, congratulations on the A1c! A drop like that is fantastic!


#5

Anthony, how scary. I have read that there is a lot of progress in combatting this complication. Please let us know how you are doing, ok?


#6

You’re truly facing some scary moments but having support such as Tu will help get you through. My advice since you have other complications wouldd be to file for disability. Disability doesn’t mean you can never work but eventually it will help ease your financial situation.


#7

I congratulate you for your emotional honesty in sharing your feelings! :slight_smile: At the level at which you are functioning, you could probably benefit from some low-vision adaptations which are readily available. There must be some kind of program in San Francisco which deals with low-vision, to which your CDE could refer you.
I just found out this weekend that all Mac products are now automatically equipped with text to voice programming – you might be able to use that in your job, or get a screen magnifier, or something else, depending on your function. Your job is legally required to make reasonable accommodations to your disability, and low-vision adaptive equipment is definitely considered reasonable.

Meanwhile, good luck, and keep on keeping on! And remember all the stuff that Jen said – she’s right!! :slight_smile:


#8

so sorry to hear, my father also had to get laser treatment in the eye for his type 2 diabetes last month…a month later, the other eye started bleeding again and again, needs laser treatment. he’s a cab driver so this will be pretty devastating. try to keep your blood sugars under 7, probably best to keep it between 5-6, that’s what i try to do. education and knowledge and encouragement go a long way. unfortunately, my father and mother (who cooks for him everyday) are not educated (and older). but you are much younger and have hope…i wish you the best.


#9

Kat, so sorry to hear about your father! Somehow it seems to me that Type 2’s develop complications faster than Type 1’s, probably because they don’t get diagnosed until after they have actually had the disease for many years. I hope that will improve in the future, and I hope the laser helps your father enough to retain enough vision to drive!


#10

I hope laser surgery might help you maintain the vision you have. Complications are a reality with this disease but we always push the possibility to the back of our minds and when they do happen it is very hard to accept. Having once worked with a blind person (who was doing Word Processing work) with the aid of an OCR, many, many years ago, I do think there are optical aids to help you do your job. I’m sure technology has improved since then. I would contact Lighthouse for the blind to see what aids are available. While you are not technically blind, the aids could help the legally blind or those with visual problems. I’m hoping you would then still be able to do your work. God bless you and I know you will fight like heck to stay the course and keep as healthy as you can. You are doing a great job so far as you have virtually halved your A1c.


#11

I could not edit my previous comment, but the completely blind person doing computer work with help of optical aids… this occurred in 1987. So it was many, many years back. Technology has surely improved since then. P.S. He could do his job as well as any other person in the department.


#12

I had proliferative retinopathy and macular edema about 12 years ago Had two laser sessions and except for a loss of some peripheral vision, can see just fine.
I agree that you should get the best eye doc you can find.
There seems to be an ever increasing success in treating this, especially if discovered early.

All my best, Kathy


#13

Hi everyone. A new poster. I’ve had type one diabetes for almost 25 years, I got it when I was 11 years old and now I’m 35. I’ve been using a insulin pump for the last 12 years. My A-1 C has been in the 6.0 to 7.0 range for the last 15 years. Today I went for a eye exam. This is the first time that The optometrist said I had some hemorages. I almost fainted and I’ve been really scared. Can’t function because I don’t know what it means. My brother had poor control and in 1989 and 1990 he needed vitrectomy. . What the optometrist said specifically was that I had 13-15 spots on bottom right eye and about 5 in my left. They are not broken blood vessels because I have not seen floaters or anything. He also said he said retinalschesis which he said is some minor bulging or pocket of fluid.

He said He just wants to watch and see and see if my control would be better and check me in 10 days. I am totally freaked out really worried I am a man I need some encouragement and maybe some hope from those of you on the board. I scheduled an appointment with a retinal doctor tomorrow because I am so freaked out. I don’t have any relationships with these guys as I’ve always gone to pearle and lens crafters and they’ve said my dilation eyes looked good. Can someone tell me possibly some any positive news or I’ve had diabetes for 25 years and I’m just worried. Thanks!


#14

First take a deep breath and relax. Yes, this is serious, but you are catching things at the start and have an appointment with a retinologist. You are officially beyond Lensecrafters qualifications. I have had multiple laser treatments and three vitrectomies because I was in denial and untreated for god knows how long. I have seen much improvement and you are WAY ahead of my game.

I have been able to maintain a solid 5.5 A1c which my retinologist credits with much of my progress. That would be my only advice aside from the specialist. Work on your control. Do everything you can to stay in a normal range as much as possible. I don't hit it all the time, but it is always my target. Every meal, every day. I have been successful doing about 100 carbs per day, but you have to find what works for you. Treat it like you are starting all over with you control. I'm sure your doctor was fine having your A1c in the 6's, but you are finding out the truth in that.

The good news is it is early in the process for you AND the outcome IS in your control. Hang in there and don't freak out. Keep your head in the game.

I am more than willing to chat if you like, but am getting ready to leave shortly. I'll be back on in the morning.


#15

Thanks. Any chance I could call you?


#16

Right now at 485-947-1527


#17

It didn’t go thru? Is that correct number


#18

sorry try again


#19

Ok. Sorry it just says can’t get thru.


#20

My bad! try 425 not 485