The day has been spent in bed researching anything and everything that might help me, from "mindful meditation" to "sleep apnea". Things that jump out:
- Target blood pressure. To prevent further kidney damage, blood pressure should be maintained below 130/80... my levels have been around 150/90 WITH medication. This is going to be fun... it seems like I am going to have to make some serious lifestyle changes to reduce my blood pressure (like acheiving a zen like state that allows me to relax my arteries...)
- Causes. It's not clear if the kidney damage was caused by high blood pressure, or the other way around. On one hand I have a suspicion that my restricted nasal breathing (due to a childhood accident) could have caused high blood pressure and this could be the culprit. It was first mentioned to me that my blood pressure was high when donating blood at age 20 (but feeling healthy I didn't do anything about it). On the other hand, I feel sure that my blood pressure must have been measured during the couple of medical exams I've had since then and it was never mentioned (whereas protein in the urine was, so perhaps the kidney disease came first).
- Prognosis. All the literature talks only about 'slowing' the onset of the inevitable kidney failure. Not too optimistic. One particularly cheery piece mentions that most (> 50%) of people with chronic kidney disease never experience kidney failure... they die of cardivascular problems before that. I'm looking for grains of hope, I really am, but so far I have found very little to go on.
Costs
At some point in my reading, it occurs to me to wonder about the cost of a kidney transplant. While there is no conclusive answer on the web, the amounts are quite staggering... a total cost of around $100,000 USD for the first year's treatment, followed by about $15,000 USD a year in medication for the rest of my life (maybe around 20 years after the transplant). Dialysis costs around $45,000 USD a year so it seems like a transplant is the way to go... my wife has already offered (and is the same blood group) but I don't think either of us expected it to be a reality. A near relation would be a better option but I would never ask my only sister (who is about the same age and also has two children) and my father has his own health problems. My mother is healthy but does it make sense to put a 55 year-old kidney in a 36 year-old body? A website mentions children as close relative donors... I don't think I could ever do that, what's the point of taking from your children just so you can live a little longer...
Then I also have to wonder if it wouldn't be better for our children to save the cost of the transplant and the treatment and to let nature take its course... and then I begin to sob for about the first time in my adult life. It's so frustrating for me to be have been let down by my body in this way and to have to make an economic decision between life and death... especially as I'm such a rational person. As the tears subside it strikes me how the passing of many people close to me never moved me to tears, considering their deaths to be natural and "in the scheme of things" but that my own pending death is quite another matter!
Likewise, I was never previously in favor of expensive life-preserving treatments, considering that all that money would, rationally, be much better spent on other things, like third-world children who don't even have clean drinking water (although I have always known that I would probably see things differently if it was my life we were talking about!).
Thoughts about death
If it wasn't for my children, the whole idea of dying in 10-30 years time really wouldn't bother me in the slightest. In fact I had often thought that it would make a lot of sense to set an artificial death date for ones self, ej. 60 years-old, and then work out how to fit everything you want to do in that timeframe. If you reach your death date, you kill yourself. But now with two beautiful girls, it is almost too much to bear thinking about them not having me in their lives, the "strong" father I promised them they could always depend on to protect them no matter what.
Life extension
Now I am in search of a miracle... I intend to completly change my lifestyle and start practising meditation and yoga, improve my diet, improve the structure of my life to avoid stress, stop worrying about the future, enjoy every day for what it is, actively help others, and dedicate myself more fully to my children.
Will it work? Stay posted.
Beautiful blog. I've had the same concern about my kidney health and found much of your thoughts resemble mine. I'm really hoping you'd keep updating this blog and share more of your finding. The road to cure may be long and winding, but it does not mean impossible. I wish you all the best. God bless.
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