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A predictably rebellious few college years followed – the years my parents awarded me control of my own medical needs and care. I elected not to drink alcohol or to smoke, was never tempted by ‘recreational drugs’ and enjoyed boyfriends ‐ although it has to be said I ‘drifted’ somewhat on the dietary restrictions. I also chose to keep my condition very much to myself. It somehow felt ‘unclean’. I can’t explain. I continued to run.
My 20s were spent in London and it was here that the first manifestations of diabetic autonomic neuropathy (nerve damage) were identified. It started with my eyes. Diabetes can cause damage to many of the nerve endings in the body. This damage can remain dormant for up to 15 years but catches up with most people with diabetes at some point – not all will suffer in the same way and some people get away with very mild forms of this nerve damage. If a body is a ‘building’ then diabetic autonomic neuropathy is an insidious form of dry rot in the substructure gradually and systematically eroding the foundations.
The vessels at the back of my eyes began to bleed into my eye and I began to ‘see’ floaters (like clots of thin black thread in my line of vision). These were only visible to me as I looked out – they were not visible from the ‘outside’. The outer tubing of the vessels was no longer firm enough to prevent the blood seeping into my eyes. These ‘bleeds’ had to be ‘sealed’ by laser beam to halt the bleeding. The treatment is extremely uncomfortable but successful in combating this condition and not too invasive given that most patients will only require a few sessions while the bleeding remains ‘active’. However this is an aggressive treatment and does result, long term, in diminished field of vision. My night and peripheral vision is affected to this day.
The nerve sensation in my feet also disappeared. My balance was affected and running became a problem, but I continued.
I married in 1987 and by 1989 my husband and I were becoming concerned that I had not managed to conceive. I was 29. He was checked out and given the all clear. The ‘fault’ clearly lay with me.
It was during gynaecological investigations that blood and protein were discovered in my urine. This is usually a clear indication that the kidneys are malfunctioning. I was referred to a consultant nephrologist (kidney specialist) who explained that I had early stage renal failure secondary to diabetes. My feelings were mixed – I felt relief that there was, at least, an identifiable reason for our inability to conceive; a morbid curiosity at the myriad of bodily functions this condition appeared to affect and fear and trepidation at what the future may hold for me. We had only wanted to know why we were having no luck in our quest to have a baby.
By 1992 we had been accepted on a surrogacy programme at Bourn Hall in Cambridge which, all being well, would see my sister carry our babies through a full healthy pregnancy. It was on the return trip on 27 August from Bourn Hall, having successfully produced and fertilised three of my own eggs to be frozen from that point for 6 months (by law in surrogacy arrangements), that I felt the full impact of the earlier diagnosis of renal failure. I needed to be admitted to hospital. My condition had gradually deteriorated. The body can appear to manage remarkably well with quite dramatically diminished renal function but you are left in little doubt when end stage renal failure finally arrives. I was almost constantly tired and fluid was not clearing from my body ‘naturally’ which led to oedemic (swollen with water) legs. The nerve endings in my stomach became damaged and vomiting became part of my day. It was time to select a form of dialysis.
This article by Deborah is an extract from a fuller version she wrote for the Perceptions series on this website. Click here to read it.
NKF Controlled Document No. 193, Having Diabetes and Developing Kidney Failure, written 14 October 2005. Last reviewed 14 October 2007.
The National Kidney Federation cannot accept responsibility for information provided. The above is for guidance only. Patients are advised to seek further information from their own doctor.
Page created: 14 October 2005
Last updated: 18 August 2007
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