www.diabeticretinopathy.org.uk

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What do people with diabetes and retinopathy think?

David Kinshuck

 

What do people with diabetes and retinopathy think?

Below are contributions from 3 people with retinopathy, the first of whom has lost a lot of sight

 

1 Living with vision loss

My diabetic retinopathy was discovered in a routine eye examination at the opticians. I was completely unaware that anything was wrong in fact, I thought my eyesight was improving with age, as I often had to remove my glasses to read, glasses worn since a teenager.

My treatment consisted of laser treatment, sometimes the painful invasive kind and sometimes quite painless and over quickly. I was always told what to expect. I had a mixture of N.H.H and private treatment, but much more N.H.S. treatment. I have no complaints with either although I would enjoy giving ideas for improvement in this very over worked service. When I am waiting for treatment I dream of what improvements I would make to help everyone if I won the lottery!

For about two years there wasn't any significant loss of eyesight, but I knew from the doctors that it was very serious as, in my case, the disease was very close to the Macula, and damage to the Macula is permanent. As my eyesight deteriorated, I became more and more depressed. I saw about four eminent eye consultants, including one from Japan. All told me the same. The next two or three months saw myself and my family filled with what I can only describe as black despair. I looked for help in many organisations, Walsall Society for the blind, Focus, R.N.I.B. Social Services, my G.P to name a few. They all tried to help but I cannot truthfully say that I found any organisation that stood out in helping me to cope with this great loss, at that time.

So what stage am I at now?

Well I have come to terms with the handicap. It is no one's fault and I have had to learn to deal with it myself. I am an avid reader and have talking books from the library, and talking newspapers. Social Services have been to my home and made practical changes, marked the washing machine numbers, shown me talking clocks etc. I attended a six weeks course on rehabilitation, organised by Social Services. Each week a different topic was highlighted and services and equipment were shown to us or discussed. I am now involved with a new group, who are going to meet monthly, a consultation and support group, who are meeting for the third time only this month. We are calling ourselves W'Eyes (Walsall eyes.) My family and my wonderful husband are a great source of help and encouragement to me and I hope we have many more years together, unlike two years ago when I felt that there was nothing to look forward to.

The practical achievement that I am most proud of is my success on the computer. Twelve months ago, on the advice of one of the doctors, I went to look at various computers and spoke to people who taught computer skills. I then began a touch-typing course given freely from social services, who also lent me a typewriter. When I had mastered that (about six months in my case) I then enrolled at night school for computer skills. There are many programmes for the visually impaired and many colleges willing to teach them. I had never used a computer before. I have now passed my C.L.A.I.T. exam. (Computer learning and Information Technology.) I can still write whatever I want and can even make personalised greetings cards.

I try very hard to keep as healthy as I can.

I ask my long suffering husband to read food labels, to me, checking for low sugar and low fat. I exercise daily by walking. I wear a pedometer and try to walk 6,500steps daily to keep my blood sugar controlled and stay healthy. That's about 3 miles which includes general walking doing housework etc. I am careful to eat the recommended amounts of fruit and vegetables.

Looking to the future.

I am 62 this year and I'm going to try to stay positive, carry on with the computer learning, and do as many things for myself as I can. We have just enjoyed a holiday in sunny Malta and are looking forward to a week in France with some friends. I still worry about the future, but at least I am better equipped to deal with it than I was five years ago.

2 What Now!

A brief synopsis of how diabetes has affected my life. 

There was a period in the mid-1980s that whenever I went to my GP or the Out-Patients' Department, I heard some more bad news. A mild heart-attack established me as a regular visitor to both places for a while. 'What now!' became a familiar thought as the latest bad news was revealed.

I remember when I was diagnosed as being diabetic, it was over a period of two or three days in 1987. At that time I was working in the Complaints and Discipline Department at Police Headquarters and I was there initially to recover from my heart attack, about twelve months before. My boss, the superintendent, was always understanding in respect of hospital appointments but it was appropriate to inform him if I needed to change my duties to accommodate them.

I had kept a specialist appointment on the previous Thursday during which I described the usual symptoms of raging thirst, lethargy, unexpected weight-loss and so on. The specialist arranged for a sample of blood to be taken but there was no mention of diabetes at that stage. He telephoned me at home on the Saturday morning. I don't recall his exact words but he told me that he wanted to see me on Monday afternoon to discuss the results of the blood test. He hinted at the possibility of diabetes.

Apart from a great uncle on my mother's side and my own cousin both being diabetic, I had absolutely no experience of the condition. I didn't have access to information then as I do now. The library was closed and the anecdotes from those I spoke to presented a gloomy picture indeed. That was one of the most difficult weekends of my life. It wasn't made any easier when, on the Monday morning, I told the boss that I needed to leave early that afternoon because the specialist thought I might be diabetic and one of the inspectors chirped in, 'Oh! My dad was diabetic, they chopped his leg off!'

I soon learnt a lot about my diabetes, as I had earlier about angina, and determined that, as far as possible I would control it, rather than the other way round. By and large that is what has happened. Of course there are certain things that cannot be controlled, one being institutional prejudice, usually borne out of ignorance. It was this, not diabetes or angina, I believe, that cost me my job as a police officer.

At that time there was a recently introduced policy within my force called 'tenure of service' which attached a maximum period of service in specialist departments, in my case as a crime prevention officer, was three years. After this period the officer was returned to operational duties for twelve months before being able to re-apply for the same or another specialist post. This is not the place to discuss the value of such a scheme. Suffice to say that, despite being good enough at it to receive an honour from Her Majesty and a commendation from the Home Office, I was removed from that post and returned to community policing. Before my period of twelve months had expired, a post for which I was considered suitable needed to be urgently filled. My Division sought a relaxation of the rule in my case and in the interests of operational efficiency, citing a better ability to control my diabetes in the vacant post, although I had not complained. The eventual result, however, was that I was 'cast out' on medical grounds. I resisted but the inevitable day came and I sadly left the police service after seventeen years.

I was bitter for a brief spell, mostly for the way that my treatment had affected my wife and children, then aged only four and six years. Philosophically I reasoned that bitterness is a destructive influence and the only people it would affect would be those around me. So we looked forward. On reflection it would be fair to say that the worst they did to me was actually the best they did for me.

After several disappointing attempts at finding work, my wife and I swopped roles, I became a domestic executive and my wife returned to full-time education gaining good BA (Hons) degree with the University of Wolverhampton, a Post-Graduate Certificate in Education and has just received DfEE accreditation as a Teacher at a local school.

I returned to higher education too, also at the University of Wolverhampton where I am about to complete a more sedate part-time degree in English and Geography. I don't have any firm plans for the future except that, when I'm not scurrying about libraries or surfing the internet for resource material for essays and assignments, I will devote more time to losing weight. I am indeed, and since my RAF days, have always been, overweight; now more than ever; I believe it is probably the cause of my physical condition. I consider myself fortunate to have a good relationship with the health professionals I come in contact with, particularly my GP, Diabetic Practice Nurse and the specialists and staff at the eye screening clinic.

At only 52, I'm not ready to give up yet, there's a lot more that I want to do, mostly involving travel, motor-cycles, writing, music and family but not necessarily in that order. If my approach is right and I follow the advice of those whose profession is my well-being, I'll do them and the cry will be a gleeful 'What next!' and not a dismal, 'What now!'

3 Lots of laser, but I can still drive

Carl Wood

I have been a type 1 Diabetic for 20 years now, and in the last 6 of these I have developed Diabetic Retinopathy.

For years before it started all I had to have done was have my eyes checked by the Diabetic consultant at the Hospital every 6 months when I went for the Diabetic clinic, this was done without drops and lasted about two minutes. Then in June 1994 he suggested that I attend the Hospitals eye clinic to have them screened properly to make sure there were no complications happening at the back of the eye that he couldn’t see.

So in September of 1994 I attended the eye clinic at Macclesfield General Hospital for a full check on the state of my eyes. Drops were put into both my eyes to dilate the pupils so that the Doctor can see to the back of the eye and a thorough examination was carried out. I was told that there was no signs of any complications and told to attend the clinic again in six months time. This procedure went on for 2 years until on one occasion in February 1997 it was said that some veins were starting to show deterioration, The Laser was mentioned at this point for the first time but I was told that they would just monitor the situation for the forthcoming months to see how things developed.

After two more visits to the clinic I was told in March 1998 that my right eye needed some Laser treatment carried out on it as there were quite a few abnormal blood vessels on my Retina that could start causing problems if nothing was done in the near future.

The appointment came in the post the same week for me to go to the Laser Clinic at the Hospital at the end of April, in this time I did a lot of worrying which doesn’t help the situation and also tried to find out as much as I could about the situation that was looming ahead of me. I had so many questions to ask but no one particularly to answer them. I had a booklet provided by the hospital written by the RNIB, which answered some of my questions, but not all of them so all I could were wait to see what happened for myself.

I arrived at the Hospital for my 1.30pm appointment and was given the usual sight test on the Snellion chart before having 3 separate drops into my right eye to dilate the pupils I then had to sit in the waiting room while these drops worked and I worried about what was to come. At about 2.30pm I was called for and led into the room with the Laser machine. It all looked very similar to the apparatus used to check the condition of your eyes apart from the extra add ons, which housed the Laser itself.
I had to sign a consent form to say that I had agreed to this treatment being carried out which I didn’t like doing because I wasn’t sure what the outcome was going to be, but I was pretty keen at this point to get it over with at this point so I signed it so that we could get on with it. Local anaesthetic drops were then put into my eye and I rested my chin on the frame ready for my treatment. A lens was then put into my eye to keep the eye open all the time, which I found uncomfortable but not particularly painful and then the Laser treatment began.

To put it into simple terms it is just like having your photo taken with a flash camera, your eye if focused on a small-lighted dot in the centre of your vision and then you see a very bright flash as the Laser is aimed into your eye.
This went on for about 20 minutes before the Doctor finally said “That’s it all done” I took my chin of the frame and looked around the room dazzled by the amount of light that had just been flashed into my eye. I was told that another appointment would be made for me to be seen in a month’s time when the eye had settled down so that they could see how the treatment had gone and that I could now go home. No patch is need on your eye after this treatment, the only thing that is vital is that you don’t drive for at least 3 hours afterwards and that it will be more comfortable for you if you wear sunglasses for a while as your eye will be very sensitive to daylight or any other bright lights.

When the drops had worn off and I could see out of my eye properly again then I could see lots of little dots in my sight where the Laser had burnt and killed off that area of retina, I found this very disturbing at first and worried that something may have gone wrong. I contacted the Hospital the next day and told them about these tiny little black dots in the vision of my right eye, they explained to me that this was normal and though they would never fully disappear I would get used to them and not notice them after a while.

The appointment arrived on the mat by Saturday for my eye to be re-examined to see how the Laser treatment had worked. I returned to the Hospital four weeks later to be told that it had been successful and that I wouldn’t have to go again for a further six months. I enquired again about the dots but was told the same as I had been told before and that the brain will learn to ignore these dots as you look through both eyes I am glad to say at this stage it proved to be correct.

About one year later after two separate appointments it was decided that my left eye had now reached the same stage as my right eye had done 12 months ago and that this too needed to be treated by the Laser. So six weeks later I went through all of the same procedure that I had gone throughout twelve months before only this time on my left eye.
My major concern after this treatment was my ability to drive as I knew that as soon as treatment had been given to both eyes your chances of being allowed to drive were less favourable, but my fears were put to rest this time as on my return to the Hospital for my check up three weeks later I was told that there was no reason to stop driving at this point.

My appointment times after having Laser treatment to both my eyes were reduced from six monthly intervals to four so that they could keep a check on the progression of the Retinopathy. Eight months down the line and I had to have another session of treatment to my right eye as new veins were starting to form on the retina surface and had to be dealt with.

After that I had about twelve-fifteen months off from treatment, each time I went the Doctors agreed to leave things as they were and see how things developed. This was great news to me, as I was now getting a little more wary of the Laser and the dots that were being left each time, although when looking normally through both eyes they were nowhere near as noticeable as they were if you closed one eye and looked through the other one.

Then in March 2001 I had a morning appointment for a regular check-up. After all the usual procedure of drops, sight test and eye pressure test the doctor sat back in his chair and told me that both eyes were in a bad way and approximately 2,500 burns were needed in each eye to stem the flow of newly growing vessels. This was hell of a knock back as I thought maybe they had settled down and that no more treatment would be needed. It was explained to me that they could only do 1 eye at each session and that only 1,000 to 1,500 burns could be done to one eye at one time, this meant I would have to go back that afternoon for the first session and return every fortnight until all the treatment had been completed.

I returned that afternoon not looking forward to what was going to happen and very apprehensive of the outcome. After about ten minutes of treatment I received on hell of a blast from the laser that at the time felt like I had been poked in the eye with a red-hot needle, I shot back off the chair and shouted something not repeatable in this writing as it may cause offence. The Doctor was claiming he had done nothing wrong and that the Laser must have hit a very minute highly sensitive area of the Retina. That basically finished it for me, as I now couldn’t face sitting back to the Laser machine after the blast that I had just received. The Doctor at this point went out of the room for about five minutes and returned to tell me that the only way forward was to have the operation under a General Anaesthetic at Leighton Hospital in Crewe, this would enable them to do the whole treatment to both eyes in one go and I would know nothing about it. I was pretty scared about that idea as well as I had never had a General Anaesthetic before but in comparison to sitting at the Laser machine again that day it seemed a pretty good option.

The appointment was made for the end of April 2001 with a pre-op two weeks before that. I attended the pre-op appointment in early April and felt a lot better for doing so as a lot of my questions were answered and worried feelings put to rest.
I arrived at Leighton Hospital on the Friday morning for my operation feeling pretty nervous but as the time wore on I started to calm down and accept that it was going to happen whether I worried about it or not. I had my operation at 4.30 that afternoon which lasted about 45 minutes, in this time all the Laser treatment that was needed was done, this entailed between 2000 – 2500 burns into each eye, so as you can imagine I had quite a headache when I came around from the anaesthetic. I was taken back to the ward and kept in the Hospital overnight for observation and then discharged the following morning.

I went back to the eye clinic about 2 weeks later so that the doctor could see how the treatment had gone and if anything else needed to be done. On the whole he was very pleased with the treatment and felt that in the long run it was good that they had put me under anaesthetic as they had been able to do a lot of Laser treatment to both eyes and to parts of the eye that could have proved difficult had I been awake. The only problem was that the back of my right eye had swollen up due to the intense amount of Laser given to it and ironically the only thing to do to bring this swelling down was more Laser on to the Retina.

So two weeks later I went back to Macclesfield Hospital to have some more Laser treatment into my right eye to help bring this swelling down. This had to be done while I was awake, as I had to be sat up to the machine so that the Doctor could get a good view of which parts of the retina were swollen and needed treatment. This session fortunately only lasted for about 10 minutes so I managed to get through this pretty well.

Since then I have been returning to the clinic every 3 months to have both eyes checked. I have managed to get my HbA1C down to about 7% which has helped my eyes a great deal, I am also on stronger blood pressure tablets and this seems to have settled around 135/80 which is pretty good for a Diabetic but the constant threat of newly growing veins finally caught up with my right eye in August 2003 when it was decided that they had let them go as far as they could and that Laser treatment was again required to stop them growing any further into my Retina.

On Friday 3 October I was back in to Leighton Hospital to have more Laser Treatment to my right eye to stop the newly growing veins going any further. This treatment has now been carried out and I am now awaiting to go back for the check up to see how this treatment has gone on and also awaiting a field and vision test for the DVLA to see if I can carry on driving.

In the long run it seems that this is never ending but I am assured that the eye will eventually give up trying to grow new veins and that all this Laser treatment will save what sight I have left, and that without it I would most certainly be blind by now. I myself have been one of the biggest doubters but when I think that I have nearly 5000 burns now in each eye and that my sight isn’t that bad and at the moment I can still drive, I am more than grateful for the time and treatment given to me by the medical staff at both hospitals.