Diabetic retinopathy

[Depressed_Boy_Skelly]

(Also posted in diabetes.co.uk forum to get more advice)

I was diagnosed with diabetic retinopathy last year around April/May time. They told me I had sight threatening diabetic retinopathy.
Then I lost my sight a bit. had to go to an emergency eye clinic and then had laser surgery straight away.

i couldn’t go to my diabetic eye screening in 2019 because of my bowel condition, but I also heard they were inviting people in 2020 even with the pandemic happening. I never got invited but my nan did. So I partly blame the diabetic eye screening as I hadn’t been for 2 years and I thought they’d invite me back sooner.
What I’d like to know is if it’s going to get worse from here? im registered sight impaired now but am I going to eventually go blind?
when should I expect my sight to go completely? This is still all new to me and I would just like to know what to expect from people who have the same.

Also I already know it’s my fault, so I don’t need to hear that.

 

[Pumper_Sue]

You should be under the hospital due to having the laser treatment so ring the hospital eye dept and ask what is going on regarding your appointments.
You can also ring the screening dept to find out what is going on.
Hope you get something sorted out soon.

 

[Inka]

I’d speak to the hospital and ask them @WreckTangle We’re all individuals and they’ll be better able to answer any questions.

As well as the information on this Diabetes U.K. site, this website has lots of information:

http://www.diabeticretinopathy.org.uk/

All the best to you.

 

[Flower]

Hi @WreckTangle

Did the laser clinic discuss a follow up appointment for you? Once I was in the hospital system for laser, surgery etc with sight threatening retinopathy I didn't get recalled through the annual retinal screening programme and am seen and have my retinas scanned at the hospital retina clinics. I still have this 30 years on but I know you can be put back on to 6 month/annual recall if things settle down. I'd get in touch with the eye unit that saw you as an emergency and ask for advice as not being seen anywhere isn't right.

Retinopathy is a complication that can happen to anyone just because they have diabetes. Screening picks up changes early and can hopefully prevent or limit sight damage and loss. Tnere's a lot of things we can do to minimise the risk but other factors as well as control can play a part in what happens. I had aggressive retinopathy that progressed quicker than the laser treatment and am blind in one eye and partially sighted in the other, someone else with similar control may not have followed the same progression. There is an element of good or bad fortune in what happens. Hopefully good luck and timely treatment can stop/slow progression but as ever the main thing is controlling all the stuff we need to control with our diabetes. I've never been told it's all my fault.

The clinic that follows you up will do everything to preseve as much stable sight as possible, there are some excellent treatments now such as injections which are less destructive than laser - should they be needed.

As said above, get in touch with the hospital and/or screening service, you may have fallen through the gap with the pandemic. Wishing you well and hope that things settle down for you.

 

[everydayupsanddowns]

Ah @WreckTangle !

So sorry to hear about your eye problems And so unfortunate that this all started to kick off just at the time when eye screening appointments, follow-ups and the whole health system was under the kosh of the pandemic

Diabetes can be incredibly cruel, and unfair. Don’t be too quick to be hard on yourself. There don’t seem to be any hard and fast rules about who gets to experience diabetes complications and who (with just the same results) doesn’t develop them. I am pretty sure this wasn’t anything you set out to intentionally aim for.

The good news is that you are at last getting treatment, and that you are now looking to slow any further progression as best you can.

As I understand it reducing your glucose variation and instability. and keeping your blood pressure as near to the recommended range as possible are both thought to be helpful in slowing any possible progress of your retinopathy.

You can only do your best, and there is no blame attached in the development of complications of diabetes, nor in any progression that may happen in the future as this again does not necessarily happen fairly or with any sense of logic. As Chris ‘The Grumpy Pumper’ used to say, “Complications are a hazard of what we have, not a failing of what we do.”

#TalkAboutComplications

Renza Scibilia and Chris Aldred write about how to take the blame out of complications and their determination to reframe the way complications are discussed People with diabetes and other chronic conditions know all about disease related complications. They are told about them by healthcare...

www.bmj.com