When you smile...there's something good in it, isn't it?
I feel like I'm on a sliding slope.
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.
And then there was a blood test with results that prompted immediate action to refer me to nephrology.
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.
.
It took 31 minutes to
1. phone cardiology.
I got an appointment, but only with the cardiologist, not for the echo.
So either they had forgotten the echo, or the appointment was made as a reaction to the kidney tests. I wanted to know what was going on.
It took quite a while waiting, but then the secretary had a peek in my files and said they'd forgotten to make an appointment for an echo. It was the 6-month appointment, not a reaction on the kidney problems. (Caused by heart-medication).
The person who makes the schedules for the heart-echo's was not at her place, so she wanted me to call back.
I said I wouldn't. So we agreed she would send a mail.
2. phone nephrology to find out if they'd made an appointment by now.
It's a week ago I was referred.
Yes...august 3. This secretary sounded a bit stressed when she looked up the date and it took longer than just checking, so I think I was still on the waitinglist for an appointment and she quickly booked me in.
And before I have to collect urine during 48 hours, have all the bloodwork done again (preferrably next monday....when I've received the paperwork) and I have to be 30 minutes early because they have to take blood pressure. (I take that myself whenever I want.)
I said I had some doubts about these tests, but she said: 'it's protocol'. Not knowing I hate protocols when they're used as laws.
She told me the paperwork was already sent, but it would take a few days because of the vacation.
Nonsense! The postman doesn't suffer from vacation.
And on top of it all: I'll probably get an assistant and not the nephrologist herself or himself.
I think they would be more informed by reading my medication list......
So I was not very impressed by this call.
In the evening I got the mail from cardiology.
Not just a mail, but a high security one... click a link, reach a page with a link, click that link, get a code, use the code... and then I found a very nice mail.... but the appointment was forgotten. LOL!
In the mail it said I would receive a written confirmation. So I'll wait for it.
I feel not very content with the way this goes.
22 days waiting for an appointment with the nephrologist.
I hope I feel better soon. When I deteriorate further there's no point to see an assistant first.
I's rather have an emailcontact to explain the situation in a few lines, give the relevant information and choose tests wisely. That's far more efficient than protocol-examinations.
The other day i was talking with a friend and she said, when she heard that I was volunteering, while I in fact needed to take some rest: 'Hun, which road are you taking?'
It made me think of a poem that was taught at school. I loved it so much, that I had it printed and put it on my desk.
My gram and I often talked about traveling through life, that we have to take our own road and not do what others do.
It has been my inspiration through life. Made me realize I have to stay the person I m, and stay true to myself.
It's the poem of Robert Frost.
The Road Not Taken
Two roads diverged in a yellow wood,
And sorry I could not travel both
And be one traveler, long I stood
And looked down one as far as I could
To where it bent in the undergrowth;
Then took the other, just as fair,
And having perhaps the better claim,
Because it was grassy and wanted wear;
Though as for that the passing there
Had worn them really about the same,
And both that morning equally lay
In leaves no step had trodden black.
Oh, I kept the first for another day!
Yet knowing how way leads on to way,
I doubted if I should ever come back.
I shall be telling this with a sigh
Somewhere ages and ages hence:
Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference.
.
