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Friday 25 October 2013

The Eyes Have It - Introduction.

By the end of this year I shall have reached my century. No, I am not yet eligible for my 'telegram' but I shall have had my hundredth appointment at the hospital's eye clinic.  Its been interesting. Really. None of my appointments has been a straightforward, routine check up - all have contained an element of stress and discomfort. I have no way of calculating the number of hours I have spent there but-never less than three and sometimes up to twelve hours when admitted for day surgery.

These visits have taken place over six years - so fairly regular and frequent. I have always taken the opportunity to talk to nurses, technicians, doctors etc. When I get home, armed with this information I do my own research. This enables me to understand the decisions I am often asked to make and to follow what is going on - to be an informed, not a passive, patient.

Its not possible to read when your eyes are dilated or after certain procedures, so as well as seeking information I also take the opportunity to try to inform less experienced patients, who are asking questions of those around them. Sometimes the nurses will ask me to speak to very nervous patients, to help reassure them.

For a few years now I have been trying to use my experience to help others whenever I see questions on various fora. and by pm. Now that retinal screening has become established and more people are experiencing diagnosis and treatment, there is both more demand for this help and more people in a position to offer it.

I don't claim any special knowledge -certainly not medical -and am fully aware that practices and opinions differ but it may be useful to some to read of my personal experiences and opinions - always bearing in mind that that is all they are.

I was referred to the eye clinic on my second visit to the GP after diagnosis. Retinal screening was in the process of being rolled out across the country but apparently my GP couldn't wait. Although I had been diagnosed only four weeks earlier I had to have an annual review and an eye test. He thought he could see something on the macular through his hand lens and managed to strain my eye muscle by forcing me to look to the right for far too long. I then had to wait for several months for the appointment while trying to come to terms with diabetes, medication, testing etc. And I was terrified, I shall never forget this period. No one explained, I knew nothing of retinopathy or what was likely to happen in the eye clinic.

Metformin caused me to suffer stroke-like symptoms yet I was told I must continue with it and I was too ill to argue. All I knew was that diabetes was said to lead to blindness in some cases. When I hear people complaining about the inadequacy of the screening programme -and- there are problems with all screening programmes - I am just pleased  that they are at least carried out by qualified opticians.

The one thing I do not understand is the fuss made by some over the use of dilating drops. Why would anyone want to refuse them ? A tiny percentage of patients may be allergic or sensitive but there are always alternatives. The point is that everyone I have spoken to in the hospital - biometrists, doctors, opticians and consultants all consider the retinal photo to be useless if the pupil is not dilated. Why would anyone bother to attend for a test which could be entirely meaningless because the pupil was not dilated ? Minor changes could easily be missed. The main use of the retinal photo is for purposes of comparison. It is carried out only once a year. Really People - get over it. Diabetic retinal checks are not the only occasions these drops are used, after all. I think the NHS should refuse to pay when pupils are not dilated as its just a waste of money. Why take the chance? I hear people saying that their vision is fine so that they are confident they can't have a problem. Very often there are no signs. I have suffered massive bleeds behind my eyes and been totally unaware of any problem.

Who are you cheating by refusing dilating drops? Only yourself. Some cite problems after the drops have been instilled as their reason for refusing them. There is always the human factor. I always have dilating drops on my hospital visits - sometimes twice or thrice per visit. Some nurses are expert - others not. Some drop the contents of the bottle into your eye and it takes many hours for the effects to wear off, some use exactly the right amount precisely placed and there is no problem at all. My consultant has a little metal dropper and is so gentle and precise I am not even aware it has been done. People ask why there is no measured dose - but anyone who has ever had to self - administer eye drops will understand the difficulties. Then there are the iodine drops, of course - but that's for another time..........

Next time I shall write about what to expect if you should be referred to an eye clinic, a terrifying thought for many but also something which raises unrealistic expectations.

Kath

6 comments:

Anonymous said...

Apparently, I'm a 'poor' dilater. So when I go for my annual check-up (only twice so far) I have to remind them I need the stronger solution.
Despite warnings of stinging, it really was no sweat, and nothing at all to be apprehensive about.

Thanks for sharing that, Kath

Geoff J

Lowcarb team member said...

Kath - thank you for sharing your experiences. I think it is helpful to exchange experiences, views etc. This way more information is 'out there' to help others in similar situations.

All the best Jan

Lowcarb team member said...

Thanks for sharing Kath and your vast experience is extremely valuable to anyone facing their first eye screening or who has been diagnosed with a problem at clinic and is scared or doesn't know what to expect from the hospital next in terms of treatment.

Best Regards

Paul

Lowcarb team member said...

You’re a real star Kath. Serious eye problems and instead of being bitter and twisted, you’re still working hard to help others.

Total respect.

Eddie

Lisa said...

Hi Kath. I am an orthoptist (but no longer working in that field) and used to work in ophthalmology. Most patients would be a little nervous about an eye exam, but I would explain what was about to happen and what the after effects would be. Drops to dilate the pupils are absolutely necessary to view the inside of the eye. Some patients eyes dilate faster than others. Children generally need a stronger drug to dilate their pupils. Once patients had their first exam, they were usually much more relaxed about future visits and accepted that these would be ongoing. For those who have never had an eye test, the side effects of pupil dilation are blurred vision and increased glare- it may last a few hours or up to a day, so it is important to have someone to drive you home and wear sunglasses.

Back then, I knew nothing about low carb diets, and it was just assumed that if you had diabetes, you would develop retinopathy. As the mother of a type 1 boy, the shoe is now on the opposite foot, and he is about to have his first retinal scan. However, I am confident that if he remains on a low carb diet for life, complications can definitely be avoided.

I really urge all diabetics to stay away from carbs, as treatment for diabetic retinopathy is very unpleasant, and really only slows down the rate of progression and does not bring your vision back.

Also, exercise and sun exposure to make vitamin D is very important. Your health is in your hands, and it is not difficult to eat and cook low carb at all.

Lowcarb team member said...

Thanks for your comment Lisa.

I did not want to go into the whole business of the retinal scan because most diabetics will have these annually anyway and as I have had all of mine at the hospital my experiences are different.

I am really just addressing the minor concerns that people express time and again on forms.

Some people almost boast that they refuse eyedrops so I am glad to have your confirmation.

Although apparently I had been diabetic for years before diagnosis I actually had only the tiniest amount of "diabetic changes" when I was referred to the hospital. I was about to be discharged after a year of tests of various kinds when I suffered an enormous bleed as the rosiglitazone kicked in. My diet before diagnosis had fortuitously been low carb which had probably kept symptoms at bay.

Unfortunately I had been persuaded to eat more carbs to enable me to tolerate the medication. I am extremely carb sensitive - so here you see me!

As you say sight can't be restored but had I not reversed to lowcarbing I am sure I would have lost my sight years ago.

Thanks for your input. Please comment on my next post on the subject. They are only my own experiences which I have posted about elsewhere but I am sure everyone would be interested in your comments on them.

As you say you will have seen it from both sides with your son.

Kath