Retinopathy......again!

Big piggy

Member
Messages
14
I can see this is one of the oft discussed subjects so I'll try not to bore you too much but an interesting story I hope it will be?
I'm a T2' diagnosed about 20 years ago after a 'prolactinoma' was discovered on my 'pituitary gland'. Several test later I was told, your diabetic, take this medication etc etc etc, you get the picture. I took the meds for the prolactin issue and a few years and MRI's later, sorted, no longer an issue but was left with the T2. I lived life to the full, ate what I wanted, drank what I wanted, never really paying much attention to my blood sugar levels, thought I could get away with it..... BIG mistake!
I was an HGV Driver, yes that's right, WAS! Long story short, I had to renew my licence at 45 years of age and could not read the eye chart correctly with my left eye. A few test later, you've got diabetic retinopathy! **** and blast, unable to renew my licence, career down the pan, what do I do? Well, extensive laser treatment, 'dry' locally and eventually, 'wet' at Moorfields, I say eventually because whilst I had secured a non HGV driving job, I broke my leg, tibial-plateau fracture and ended up on my back, non-weight bearing for about 9 months! During that time I developed a DVT and had to go on Warfarin, and then the problems began......!
Diabetic Retinopathy, essentially lack of oxygen to the back of the eye, hence the growth of further delicate blood vessels to improve the blood/oxygen supply. With me so far? If they burst, and they do, the blood is absorbed and you are left with 'scar-tissue' that pinches the retina and causes vision issues...... Keep up now! Whilst on that damned Warfarin, I had a bleed in my right eye..... Warfarin thins your blood to stop it clotting..... It did not stop bleeding..... Eventually it did but it was too late, I went down to Moorfields to try and get it sorted (wet laser work) but the blood had become 'organised' (part of the retina) and despite valiant efforts, it could not be cleared sufficiently to restore my eyesight...... Anyway, career well and truly over, blind in one eye, about 20% max in the other, registered blind, blah blah blah. Same old story wherever you go, all over the world people are diagnosed with Diabetes and don't do anything about it......! I apologise, I digress, the main point of this post is to warn you all of the perils of Warfarin and Diabetic Retinopathy..... They don't mix!
My last point is simple, if you are diagnosed with Diabetes, SORT IT OUT STRAIGHT AWAY. Get your eyes checked regularly, at least once a year if there are no problems and more frequently if there are, oh! and don't break your leg, well at least avoid that nasty Warfarin......!
Happy days :D
 

Unbeliever

Well-Known Member
Messages
1,551
As a fellow sufferer you have all my sympathy Big Piggy. I too have found that surgeons etc make valiant efforts but I believe that the real problem is that hey only have injections and laser in their "armoury" and it just isn't enough in some cases.
Presumably you have added your "vote to he petiton against NICE's decision not to allow Lucentis to be given to patients on the NHS?
I know avastin works for some people but not for everyone. Lucentis was developed specifically for eyes
and could work where avasin does not.

The cost of lucentis must be less than the cost of blindness.

Sorry to hear your sad story and for all the trauma you have been through. Life is very unfair isn't it?
 

Big piggy

Member
Messages
14
Appreciate your kind words Mr. Unbeliever :D

I am very fortunate to have an amazing wife and two daughters who are always there for me whenever I need them. I am able to get around the house and look after myself pretty well, it's getting out and about that is sometimes difficult and that's when my 'posse' steps in :D

I'm given to understand that my experiences at Moorfields are not uncommon. As you say, there are limitations to what they can or want to do. As soon as my condition worsened, they wiped their hands and moved me on! I'm not bitter, not now anyway, lots of water, lots of bridges and compared to some, I'm as fit as a butchers dog :D

I will find the petition and duly 'sign' it, NICE have a lot to answer for, as you say, how can they put a price on someone's eyesight?

T
 

Unbeliever

Well-Known Member
Messages
1,551
Good for you, I am actually Mrs Unbeliever but no matter, I have always liked pigs!I

I was actually given the link to the petition in an email from this site. I will try to find it but somehow. although I can post have great difficulty in looking back over things.

I had thought that the hospital were about to wash their hands of me and in a way I found the thought quite liberating after 4 years of treatment which hasn't worked. Unfortunately they want me to have more steroid injections which I had 3 years ago and which while they worked for a short time to allow laser treatment to be done also had side effects which affected me for quite some time.
Its a difficult decision to say you've had enough but difficult to judge whether the risks are worth the possible advantages. I suppose they mean it for the best but I have always felt that they should concentrate on those who are more likely to benefit. Perhaps this is a last ditch treatment .

Did your treatment in itself cause the condition to deteriorate Mr Piggy?
 

Big piggy

Member
Messages
14
My apologies MRS Unbeliever :D I don't know where I got the Mr from but hey-ho! Not the first time I've got it wrong. There was a time, in a bar, when I was much younger and a bit green when....ooops! Not here, no no no, not here!

Anyway, my treatment at Moorfields in the early stages was very very good. Until they had tried to remove the 'organised' bleed which I feel was carried out in a bit of a 'gung-ho' fashion! Too much of the retina was scraped away which, whilst now very very thin, detached and left me with a 'choroid-collapse'. In their words, '.....to try and separate the retina, would be like separating wet tissue....' and I did hear the Prof tell his registrar, '....try and persuade him not to have anymore surgery, we have more important things to attend to....' So, no sight in my right eye, and about 20% in my left, now down to 6 monthly check-ups and focussed on weight loss and diabetic control which are all going well :D

There's obviously loads more that I could put but it's all been said and done before and honestly, there are people out there far worse off than me, I still have some sight left..... AND, I just love my iPad.....it's the best investment I ever made!

T
 

Tracey69

Well-Known Member
Messages
310
HI Big piggy,
I am a T1 with Retinopathy. Both eyes Lasered . My left eye continually bleeds, saw the consultant QE 2 hosp in welwyn who now says the blood is stuck in the vitreous jelly, there is no room for any more laser so they are considering removing the vitreous jelly which should replace itself, but i also have macular oedema in the same eye. I have no peripheral sight in my right eye. I use to drive but had my licience taken away due to my sight.
I was very much like you ate, drunk everything i wasn't suppose to do it and also having diabetes for 36yrs doesn't help. But most things on my left side are affected, with left foot,back pain and leg numbness.
So any new diabetics out there PLEASE KEEP YOUR DIABETES AS CONTROLLED AS MUCH AS POSSIBLE, please don't think it won't happen to me, because eventually it just creeps in.
Take care
 

elmacri

Member
Messages
16
Tracey69 said:
HI Big piggy,
I am a T1 with Retinopathy. Both eyes Lasered . My left eye continually bleeds, saw the consultant QE 2 hosp in welwyn who now says the blood is stuck in the vitreous jelly, there is no room for any more laser so they are considering removing the vitreous jelly which should replace itself, but i also have macular oedema in the same eye. I have no peripheral sight in my right eye. I use to drive but had my licience taken away due to my sight.
I was very much like you ate, drunk everything i wasn't suppose to do it and also having diabetes for 36yrs doesn't help. But most things on my left side are affected, with left foot,back pain and leg numbness.
So any new diabetics out there PLEASE KEEP YOUR DIABETES AS CONTROLLED AS MUCH AS POSSIBLE, please don't think it won't happen to me, because eventually it just creeps in.
Take care

Hi my partner is very simular to you too. ( in the eye department lol)
He is T1 with Retinopathy. Both eyes are lasered to the max. He cannot have anymore either. The thing is that the doctors have said his vision is good and they don´t feel they can do anymore at the moment. They talked about replacing the jelly but only want to do that if his sight was bad. So basically we are left waiting for his eyes to bleed so much that he losses his sight and then they will replace the jelly. We are devastated. He is 37 and we are just starting a family. I spoke to the doctors and now understand´that this was caused from not controling his T1, he use to be an alcolholic before i met him and is now t total. However i am now trying to frantically learn all about T1 and have realised his diet has also been terrible. I feel guilty i didn´t realise over the last four years of being with him. I just thought he couldn´t/shouldn´t have sugar. Now my eyes are opened to carbs too. So i am now in control of his diet and am hoping that that will somehow help his eye situation. Sadly its too late for his brother who is 9 years older then him. He had glucoma and lost most of his sight, over the last year he has also had both his legs amputated and a finger of each hand. His kidneys are failing and he has dyalasis every two days.............. I so hope my efforts with my partner are not too late. He too is trying very hard. I think he just hasn´t had the help needed over the last few years.
Thanks for listening