IgA Nephropathy and me.

It all started about thirty years years ago when I was working very hectic hours away from home for a few years at a Ford plant in Southampton. I caught a really horrible chest infection and then noticed that I was peeing blood. This wasn’t just a dark brown colour. No. It looked as if I was peeing from an artery. My back hurt like hell and it took a few days to feel well enough to drive, in a fair bit of pain, back home and go and see the doctor. It all settled down and there seemed to be no ill effects and within a few months I had forgotten all about it.

A couple of years later I went for a pretty standard insurance medical as I was increasing my life cover significantly. The results came as a bit of a surprise; They wanted to load my premiums quite heavily.

I went to see my GP who decided to send me for all sorts of tests, one of which was a renal biopsy. I went into hospital as a fit and healthy chap who was running an average of 60 miles a week at just over 6 minute miles and came out of there the next day barely able to walk. Lord knows what they did wrong, but it was a very unpleasant experience.

This was followed up with a visit to the consultant. He told me I had dangerously high blood pressure and that the results of the biopsy had shown that I had Berger’s Disease, also known as IgA Nephropathy. The prognosis was not great, to be honest, but by careful monitoring and the right medication my kidney problem has been managed pretty well in their slow glide-path of decay.

I was put on ACE inhibitors, which reduced my blood pressure to normal levels and things settled down. It was explained that it was a chronic condition; it was going to get worse every year. With check ups every six months or so and then yearly, my kidney function deteriorated quite slowly. But it looked like they were going to see me through my three score years and ten, so I wasn’t too perturbed.

Fast forward now to a year or so ago. Just before setting off for the TGO Challenge in 2011, things started to change quite rapidly. The standard yearly check up had picked up that my potassium levels had shot up to 6.4 This, apparently, is really not very good. They changed my BP medication and advised me to go on a low potassium diet. Brilliant, Shadwell… No chocolate, nuts, bananas, not much fruit… and no Marmite!

Potassium levels can affect heart rhythms and they were worried that if I were to scoff my usual diet I would drop dead somewhere in the Scottish Hills whilst eating handfuls of trail-mix.

The change of blood pressure medication produced startling effects: Ankles like an elephant. A doctor friend on the Challenge noticed this and told me to get the prescription changed to some other wonder drug and soon, via this change and then reverting back to my original ACE inhibitor and a reduced potassium diet, things settled down again.

However in that year my kidney function took a dramatic turn for the worse, halving their efficiency from something like 30% to 15%. In the midst of all this, I moved from Cambridgeshire to Berkshire.

The last few months have been busy. There was another renal biopsy to find out just how bad things are. I am now seeing a whole new team, based around the Royal Berks Hospital. I have a new consultant who found I have a very low blood count (Haemoglobin) of 8.7 – A normal chap my age should have a blood count of around 15. This explains a lot. It explains why I have been feeling totally knackered and why the TGO Challenge was such a monumental struggle this year, as the red blood cells carry the oxygen around the body and I had about half the normal level. Looking at my records, he says I have had a very low blood count for quite some time, which again explains why I have struggled getting up the hills over the last few years.

Completely out of the blue and unasked, my family came forward and my two brothers and a sister have offered me one of their own kidneys as Live Donors. This is incredibly brave of them as it involves a major operation, performed using keyhole surgery and under a general anaesthetic.

I have been to the Churchill Hospital in Oxford to see the Transplant Surgeon and have come away with all sorts of booklets and DVDs to peruse and pass on to my brothers and sister. I really should get them sent off ASAP. As this is a pretty major undertaking, at every step in the process they can opt out if they change their minds.

I have been to see the renal nurses at the Royal Berkshire Hospital, who pumped me full of intravenous iron earlier this week. Hopefully, over the next few weeks, this will increase the blood count to a more normal level. There is also the option of EPO injections, which will surely mean that Bradley Wiggins should watch himself as I’ll be coming right past him.

The target is to get all this sorted with me back to full health for the TGO Challenge next year. The Transplant Surgeon thinks this is possible. However, because transplanted kidneys have a bit of a limited shelf-life when installed, the renal nurses are recommending caution, saying I should hang on to the old kidneys for as long as possible. However, a new kidney has the best chance of a long and happy life if it is transferred to me before dialysis is needed, so this means that it’s best to do the transplant sooner rather than later. So it’s a bit of a balancing act as to when to do the operation..

There’s another visit to the consultant next week, so I shall find out more then. We live in interesting times…