Hello fellow diabetics

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Asia

Asia

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Type 1
I'm 30, type 1 for approx 20 years. Insulin pump for around 10 years, various meds and complications. I'm a student biomedical scientist after working in medical care roles.

I'd like to hear from people with proliferative retinopathy. I've signed the papers for pan-laser, they're really understaffed and very behind. My check up is two weeks overdue and still not got appointment through, I'd like to know how others are getting on with their proliferative retinopathy the good and bad
 
Hello Asia, I don't have proliferative retinopathy but would like to welcome you to this forum and wish you all the best of luck getting some advice from others who may be able to help, all the best.
 
Thanks @NickD I take it you're type 2 on metformin? I don't think I've used a support forum before and the local or NHS support has been reducing for a while although complications have increased. I've got some medical knowledge but it would be very good to speak to others on their experiences
 
Yes T2 according to my GP and hba1c, yes on metformin also. I have only just joined this week but have already found some useful info and good contacts, so recommend a look through some of the other discussions and using the search box top right. All the best.
 
Hi Asia , Welcome to this friendly forum. I hope find it as helpful, informative as I have.
Sorry I can’t help with the Proliferative retinopathy, someone here will though.
How long have you been waiting for the treatment on your eyes
 
Hello @Ljc
It was about 4 months ago that I had my screening results and referred to the Eye team, I signed the paperwork for pan laser for when they think it's the right time to zap away but one of the worries is that they are behind with patients and very short staffed, my check up was due 2 weeks ago and still no letter. The receptionist said they're still seeing various patients due in Jan/feb. She also said if I get symptoms in the mean time go to gp, although the reason for yearly screening is to avoid leaving it to that point and catch it whilst more treatable, I was wondering how long it is safe to leave the check up. They did say I'll likely loose some p-vision from the pan laser, I've not had chance to ask anything since.
 
Hi Asia. It seems pretty quiet on here at the mo, others with more knowledge than me will be along later. So please keep checking back here.
You have been waiting such a long time, too long imo. I’m wondering if your gp may be able to help or even refer you to another hospital, apologies if you have already spoken to your gp about the awful delay.
 
Thank you @Ljc
It is nice to hear from others such as yourself and good for other ideas and advice, I will do that if I do not hear sometime soon.
 
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Hello and welcome Asia 🙂

I've been dealing with proliferative retinopathy for about the last 20 years. The main bulk of the treatment which included maximum laser treatment to both eyes and vitrectomy operations to remove the eye ball jelly were about 15 to 20 years back but I'm left with ongoing issues.

Are you waiting for the first session of pan retinal laser? Have you had any retinal haemorrhages? that can delay treatment as the blood needs to clear before the back of the retina can be seen clearly. I would keep on at the clinic or the consultant secretary and ask when you will be seen.

I found laser more frightening to think about than to do. I had anaesthetic eye drops put in my eyes and then sat at a slit lamp table in a darkened room -similar to the slit lamp where eye checks are done. A contact lens is put onto the surface of the eye and then a lot of coloured flashes come towards you, the laser is directed to the areas of new fragile vessel growth to seal off the abnormal vessels and prevent bleeds. I would describe it as a slightly odd sensation having to watch lasers come at you and slightly uncomfortable but not painful. If the laser is painful ask the person doing it to move to a different area for a while.

Don't be alarmed if you need more than one session as they can only put a certain number of laser burns on to the retina each time. I didn't notice any loss of peripheral vision until I had been through a number of sessions but my eyes were very light sensitive after laser treatment so do take sunglasses.

This site has good information on what happens with proliferative retinopathy and the treatment/progression http://www.diabeticretinopathy.org.uk/proliferative.html

It is a proven way to try and conserve as much sight as possible, if you only require a few sessions you may not notice too much difference to your sight. Make sure your diabetes, blood pressure, cholesterol are all as well controlled as possible but if your HbA1c is higher than you'd like ask for advice on how best to reduce it as perversely rapid tightening of glycemic control can speed up the progression of proliferative retinopathy which is the last thing anyone needs.

Good luck, I hope you hear very soon when you will get laser treatment and I hope it is very effective for you.🙂
 
Welcome Asia. 3 days in the last week I have been helping with research for NHS. I love this country & with the help of some wonderful staff I got a right kick out of it. 8 bells train to Cockney land but was good. Still in employment after more than 51yrs of T1. I never sit still long & travelled nearly 20mile this morning to see my son win 7-nil this morn 😎 Happy ! Keep Hydrated & Good luck with Retinopathy probs
 
@HOBIE your doing well 51+ years of T1! Well done. I've not had very good control for most of it, found it hardest to manage in some of my employment, manic shifts etc. But struggle due to a variety of reasons and quite a few complications. Congrats to your son

@Flower thank you for your information and advice. I see you have had D1 for a long time. How has your control been? I got diagnosed with bilateral background retinopathy 10 yrs ago then seems to have jumped a few stages. My control has not been top since childhood. Although we put in a great deal of effort, I also struggle with memory problems which makes it more difficult. I've got quite a few complications. I can't remember exactly what they said, I remeber something about leaking and proliferative also I'd be going back and forth for some time, plus the peripheral loss. Did you get any symptoms before your treatment? I don't know if linked but I get vibration in centre, many floaters and light to dark can be a bit strange. We've been speaking to the reception and they've said they're very behind and short staffed and about 9-10 months behind with pt's. And to go to GP if they're any changes. I know that is not a great way to go around thinhs, that's what the screening is for. we don't get an answer for how long I'll be waiting.
 
Hi Asia, you talk about memory probs ! I know lots of us T1s out there have thought "Have I injected?" What was my last BG test. Your head gets bombarded with numbers etc. Carb counting & your Life depends on it does it not. You have to laugh at times don't you. I used to be able to remember what my BGs where days ago but it just lasts for a few hours at best now. I make myself ill with worry if I out of control to long. Life 😉:D
 
Hello Asia and welcome to the forum. 🙂 Can't offer any advice on proliferative retinopathy as I've only got background ret but just want to wish you the best of luck.
 
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