Entering the world of nephrology.
When you smile...there's something good in it, isn't it?
When I was in hospital waiting for the morning or death, I didn't feel like this at all.
I had the feeling all was about attitude and inner peace. I got that. Didn't feel dependent on anything. Just being in the hands of life, of nature, and with the request to the nurses to place my bed under the trees and stars outside so I could die there, I was at rest.
If I hadn't survived it would have been OK too.
Now I feel like the frightened kid, standing on top of a slide that's far too high, far too steep, and at the bottom is nothing soft to land on, but those horrible hard concrete tiles. And no one is waiting there, no hands stretched out to catch me. No smile to make me smile back and give me some confidence.
Because ...when you smile...there's something good in it, isn't it?
A few days ago I got such a swollen envelope, it was like the ego of nephrology as shining through.
I had to redo the bloodwork, which is done a week ago in the same hospital. Do a test that will certainly lead to the wrong interpretation, and a test I have no time for at all.
I've been thinking, weighing, balancing the protocol with my wishes, balancing the protocol with my needs, thinking what would be more efficient and cost effective, balancing the causes of the kidney insufficiency with the way they want to go about.
The conclusion was clear: I have to go their way, but hell I want it to go the way I want.
It's better to die fighting, then to die passively depending on a system that stinks.
Oh yes it does.
For the past years I've asking myself and others why all the focus of money and research is on a mobile kidney for people who have a deplorable kidney function, and almost nothing is invested in prevention of kidney deterioration.
What do we know? Live healthy and follow a diet.
When my body was shutting down because my heart gave up, a lot of damage was done.
I know, because my muscles have never been the same.
I got a large amount of medication to keep me alive. The cardiologist told me we would review them at the end of my first survival year, to prevent over-medication.
Suddenly he moved to another hospital. Too far to follow him.
I landed on the desk of a cardiologist who told me, when I asked for a review, that he 'didn't dare' to change the medication!
When I asked him about the deterioration of the kidney function he said it was a normal thing. 'Quite acceptable'.
Then it dropped below 'quite acceptable' and he ignored me.
My family doctor worried and consulted a nephrologist. He said that the problem was probably due to the hot weather.!!! I was fed up by the whole todo.
Adjusted my diet a bit more.
I asked to adjust my cardio-medication about a hundred times, kidney function was dropping and dropping.
Then the bargaining started: 'When you don't trust it, why not try diminishing the medication in the controlled setting of the hospital?' I was treated like a small child who was not able to understand what was going on, so I didn't even get proper information about the condition of my heart.
But as far as I know it gradually improved.
My complaints...might be called symptoms by those who care, multiplied.
The doctor/student of internal medicine I was referred to didn't listen to me, but gazed and drowned in the beautiful eyes of his assistant 3/4 of the time. His conclusion: no underlying illnesses and nothing to be expected.
Findings: cysts in a kidney, fatty liver (I don't drink alcohol at all!), and far too high vitamin B6, and Folic Acid. I've used the last two for years after I was diagnosed with an amino-acid metabolic disease. Never before I've had a surplus.
Luckily I knew that a surplus can hide deficiencies of other vitamins.
So I lowered the dosage and: vitamin D deficiency, vitamin B12 deficiency, magnesium deficiency appeared. As expected. Vit b12 is depleted in about 30% of users of Metformin.
I started to take supplements. The deficiencies slowly normalized.
But why, after 20+ years without any problems would I have deficiencies? The kidneys? The heart-medication? Both?
The deterioration of the kidney function went on.
Gradually I developed all kinds of symptoms.
- Numb toes...reaction: due to diabetes. (Might also have been due to Vit D or B12 deficiency, etc.)
- Itchy skin
- Clouded brain
- Hazy vision
- Muscle cramps
- Blue spots
- Insomnia
- Vague pain in my back at the height of the kidneys
- Crumbling and splitting nails
- Dizziness
- Nausea
- Lack of hunger
- Muscle problems varying from weakness to fast tiring and pain with movement.
I informed the cardio-nurse, who wished me the best... which was in complete contrast to the kindness I'd experienced before.
Through all the past years there's 1 item bugging me:
Kidney problems started later than the heart-problems.
Might they be caused by the cardio-medication?
So do we stick our heads in the sand and only do some problem solving, like adjusting the diet just that absolute marginally bit, and prepare for dialysis?
Or do we stick heads together and adjust the cardio-medication and monitor kidney function and heart very well, get well informed about the choices in case dialysis is on the horizon and built a trusting relationship. because I'm completely fed up by doctors who want to fill their wallets and ego-bubble far more than my files with good results.
So I'm not going the way of the standard protocol.
I'm not going to jump on the slide.
I'll ask for a meeting with a good nephrologist, who has knowledge about nephro-toxicology and who can deal with my cardiologist or another one who wants this case.
Maybe I'm clinging on the railing for a bit more time to be normal.
Maybe I'm waiting for someone to remove the concrete landing, and ..yes...I'm waiting for those two hands to catch me.
After I mailed my own doc with the plans, I knew he would shake his head.
He likes protocol far more than creativity, and I understand that.
But I'm standing right in front of a prognosis with a death sentence, and it's OK for them, because it's the way they earn their money.
I first want to have a close look if I should stay here, see if we can alter things on this end, before I take the slide.
Let's see if changing the cause can change the outcome.
I want to know that I've done all I could.
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