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Diabetic Nephropathy - 'a fairly horrible experience'

'I was never a model diabetic patient,' says Marcus Merz1 of himself. The 43-year-old has suffered from Type 1 diabetes since he was seven. During his childhood, his parents did everything they could to keep their son's blood sugar level under control and allow him to grow up as unaffected as possible. The dilemma began when Marcus was 15 years old and outgrew the care of his parents and his childhood doctor. 'My diabetes didn't interest me very much at that time,' reports Marcus. 'I no longer controlled my blood sugar, I ate and drank what I wanted, and simply let everything go! I was too frivolous,' he sees today. 'I believed then that I didn't need to bother because in a few years there would be a cure for diabetes.'

But this view was too optimistic, which soon became clear to the young man. When he finished school he trained as a dental technician. By his mid-20s, the consequences of the years of neglect of his illness began to show. He was reading the newspaper when he realized for the first time that he could no longer see as well. Then, on the way home from a skiing holiday, 'Suddenly, a cloud formed in front of my right eye - it was as though someone put a drop of ink in a glass of water and it slowly spread out.' At the eye clinic in Heidelberg, he was diagnosed as having advanced damage to the retina at the back of the eye, caused by chronic high blood sugar levels. The 'cloud' was due to a haemorrhage from one of the broken blood vessels in the eye.

'That was the beginning of the end,' Marcus acknowledges with hindsight. 'If I hadn't done so much sport as a young man, it would probably have caught me much earlier!' Meanwhile, he had started studying dentistry but, after another haemorrhage in the eye, which

1 The name has been changed.

occurred during a lecture and produced a 'thick mist' in front of his eye within 15 minutes, an operation was necessary. This was not a success and Marcus became blind in his right eye. The other eye was also suffering. Despite laser treatment and removal of the vitreous humour, the doctors at a specialist clinic could not save it and Marcus now has only 3% vision in this eye. 'That's enough, in good light, to see someone opposite me as a dark shape.'

A career as a dentist was out of the question under these conditions, but the 30-year-old did not give up hope. 'I was angered by the poor results of the operations, but I did not despair.' He was helped by his large circle of friends, but also by continued sporting activity. Marcus says, not without pride, that three years ago he went on a diving holiday in the Red Sea. 'With the help of a diving instructor, physical handicap can be overcome.'

He has achieved much more. After a three-year break, Marcus began to study law. He had to go to court to win the money to finance this, since at the rehabilitation clinic they tried to make him study information technology - a subject he didn't like. He wanted a job that would give him contact with other people. Of course, a student cannot avoid using computers. He repeats the material from lectures using a computer system that reads him pages scanned in from textbooks. Marcus says that he has also been helped through his studies by the many contacts that he made by joining a student club.

Meanwhile, he has also involved himself much more actively in the management of his diabetes. Some time ago, he started intensive insulin therapy. He measures his blood sugar level at least five or six times a day and is content if his HbAlc concentration is about 6.5%.

Sadly, however, his efforts came too late in another area as well. By his early 20s, Marcus's blood pressure had begun to rise and the hypertension gradually got worse with lack of proper treatment. The high blood pressure accelerated the damage to his eyes and also affected his kidneys. Over the years, there were ever-clearer signs of failing kidney function.

As early as May 1992, patient and doctors together decided to try for a transplant. Marcus's own kidneys were not yet fully destroyed, but the prospect of a new, fully functional additional kidney, that would be transplanted with a new pancreas, which would also help to combat the diabetes, seemed the optimal solution to all those involved. 'I dreamt about a trouble-free existence, with a better quality of life and no more need to inject myself,' says Marcus. But luck was not with him this time either: within two weeks of the transplant there were problems and both new organs had to be removed.

Until one and a half years ago, his own kidneys could still cope but then they broke down completely. The ongoing diabetic nephropathy made kidney replacement therapy necessary and since then Marcus has been going three times a week to the dialysis centre for blood purification. The start of dialysis has made the greatest impact on his life up to this time and has been 'a fairly horrible experience,' he explains. 'Just the time: Mondays, Wednesdays and Fridays, each time having to lie there from 7.15 am to 1.30 pm with two thick needles in my arm and with six other people in the room.' For lively single people, the restrictions imposed by the dialysis on everyday activities are very disturbing. 'I love life - eating and drinking.' The limitations are particularly hard with respect to drinking: being allowed only water, apple juice, white coffee and an occasional beer badly affects his quality of life.

Of course, the visual impairment is also terrible, adds Marcus, but he has learned to live with that. In contrast, 10 years of dialysis seem unimaginable and he doesn't plan to put up with it. He is already on the waiting list for a new kidney transplant. This time the operation will be combined with the insertion of pancreatic islet cells. A very promising procedure has been developed in Canada which gives a relatively good chance that the islet cells are not destroyed by the recipient's own immune defence system. This Canadian method is being used in Giessen in Germany and Marcus will have his next operation there.

So for the moment he is optimistic, even though he has to put up with dialysis and the restrictions it imposes. He has completed his law studies and is starting as a junior barrister. After that, he wants to set up as an independent lawyer with two friends. He also has plans for his personal life: 'I can imagine a wife and two or three children.'

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Your fate is in your hands

As the story of Marcus Merz demonstrates, in the long term diabetes can lead to problems with many different organ systems, particularly when blood sugar levels are allowed to remain high over several years. Typical diabetes-associated complications are:

• Damage to the small blood vessels (microangiopathy).

• Damage to the eyes (diabetic retinopathy), even leading to blindness.

• Damage to the kidneys (diabetic nephropathy) that can make dialysis or a kidney transplant necessary.

• Arteriosclerosis of the large blood vessels, commonly known as thickening of the arteries, with an increased risk of a heart attack and other circulatory problems, particularly in older patients.

• Damage to the nervous system (diabetic neuropathy), with possible consequences including foot ulcers and amputation, itching and pain in the legs, impotence, a weak bladder and incontinence.

This list sounds dramatic and the possibility of suffering from such complications naturally causes worry and anxiety. What will happen to me? Will I become blind or have to undergo dialysis? These are questions that some people may ask themselves. Such concerns and anxieties in the first stages after diagnosis with diabetes are understandable. However, a deciding factor in life with diabetes is how one copes with these fears - you can be positive!

What we mean is that, as a diabetic, you can take care yourself that your diabetes is kept well controlled. There are various options at your disposal: a formal diabetes education is an indispensable basis.

Diabetes and the Kidney (English edition) by Christoph Hasslacher and Sonja Bohm ©2004 John Wiley & Sons, Ltd. ISBN 0 470 021158 6

The risk of nephropathy is equally high forType1 and Type 2 diabetes

Frequency of nephropathy [%)

Frequency of nephropathy [%)

10 15 Duration oi diabeies (yeara)

Figure 1.1 The risk of kidney damage increases with the duration of diabetes. After 25 years, it is between 40% and 50%. [1]

10 15 Duration oi diabeies (yeara)

Figure 1.1 The risk of kidney damage increases with the duration of diabetes. After 25 years, it is between 40% and 50%. [1]

You can also make use of books, newspapers, the Internet, self-help groups and diabetes organizations.

You should not allow the (unnecessary) concerns and anxieties to become so great that you feel 'crippled' by them and can no longer look after your diabetes appropriately. The urge to say 'It won't

What you should know:

• Diabetic kidney disease does not affect every person with diabetes.

• Diabetic kidney disease does not occur overnight -it takes years to develop.

• Doctors today have the ways and means to detect kidney disease early and to treat it adequately at every stage.

• As someone with diabetes, you can join in the management of your diabetes and thereby minimize the risk of renal complications.

happen to me' is not helpful (see the example of Marcus Merz) - such behaviour can easily lead straight to difficulties with the eyes or the kidneys. As someone with diabetes, you must address the problem of the typical complications associated with this disease. It therefore makes sense to acquaint yourself with the facts. If protein is repeatedly found in the urine (proteinuria), that is the first sign that diabetic kidney disease is developing. However, even with diabetes of long duration, not everyone experiences protein in the urine but 'only' every second or third person with diabetes. And it occurs as often in Type 2 diabetes, which develops at a later stage in life, as in Type 1 diabetes, where metabolic disturbances arise in childhood or adolescence (Figure 1.1).

This is alarming - particularly when one considers that the number of diabetics with kidney disease (above all those with Type 2 diabetes) continues to rise. Of course, this is partly due to the ever-improving life expectancy of the population. But that is not the only cause: an equally valid reason for this worrying situation is that the risk of developing kidney disease has, until now, been underestimated in the largest patient group, those with Type 2 diabetes. And not only by the patients (how were they supposed to know?) but also by the doctors who treat them.

Much has changed in the field of diabetes care in recent years. One of the most important things to be recognized is that even older patients with Type 2 diabetes need much more intensive treatment and management than was customary a few years ago.

Better therapies have reduced the risk in recent years

Better therapies have reduced the risk in recent years

Year of diagnosis

Figure 1.2 People who were diagnosed with diabetes between 1961 and 1965 had a much higher risk of nephropathy than those who were diagnosed between 1976 and 1980. [2]

Year of diagnosis

Figure 1.2 People who were diagnosed with diabetes between 1961 and 1965 had a much higher risk of nephropathy than those who were diagnosed between 1976 and 1980. [2]

Today, even a 70-year-old wants to live the most active and healthy life possible. The diagnostic and therapeutic means exist but not all doctors apply them. Patients today have to take much more responsibility for themselves and take a much more active part in the management of their condition. This book should help.

Finally, to show that such efforts can work, let us consider the example of the Scandinavian countries. In recent years, they have achieved a dramatic reduction in the frequency of kidney damage in patients with Type 1 diabetes, through intensive management by doctors and increased cooperation by the patients (Figure 1.2).

Today, diabetic nephropathy is the most common reason for dialysis

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Diabetic kidney disease -what is it?

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