From a new one to a new one.
From better to best.
Today I went to see the nephrologist again.
I was very stressed.
I expected to see the nice woman, and it turned out to be a young man.
So I asked him if she was changed into the male version. He looked puzzled and then smiled: 'she's on vacation'/
'Oh, she should have planned her appointments better,' was my reaction, 'I'm very fed up with ever changing faces.'
They don't know what is the matter.
But the echo showed the right kidney is smaller than the other kidney, which wasn't in the past.
Together we agreed part of the kidney problems might be due to my heartproblems, which made my body shut down.
And as I observed a few times that my bloodpressure went down before the kidney's gave symptoms, at least part of it all can be caused by this too.
I asked for the dietician, but the team has a different idea.
So I'm referred to the kidney nurse. She knows a lot about food and diet too. So we agreed I'll try her, and see if she can deal with the other diet requirements.
And I will be referred to one of the staff nephrologists.
I didn't let him speak, for fear I might end up with one of the male ones and asked if I could go to the female nephrologist, as she was the one who diagnosed the kidney insufficiency.
He started to laugh and said that that was what the team wanted too.
They are worried about the whole issue as they consider me far too young to deal with this.
Puh, I'm 61.
I got a compliment that I had refused to stop Fosinopril, even though I hate the stuff, it's good for the kidneys,
We also talked about the new prescription of the cardiologist (Labetalol) and that I want better cooperation between the two disciplines. But first we have to wait to see.who will be the new cardiologist.
It was a pleasant consultation.
And I have to say that I feel a lot more cared for than at cardiology...after my first cardiologist had left. Even though the cardio-nurse has been very kind and nice.
But when going home I got angry.
At that cardiologist. He told me the last time that my kidneys were OK.
Good that I didn't tell the kids or anyone else, because I didn't trust him. It was not up to him to give the result of the echo, and he gave it wrong!!!
Even worse.... he missed an issue in the ECG, or didn't know what it was, or didn't care to inform me.
When my first cardiologist left I was very sad, but now I'm relieved. Better without a cardiologist than with one I've had.
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.
By keeping the oldies at work, we're creating a lost generation.
The UK state pension age increase to 68 will be brought forward to 2037.
Of course a lot of reasons are presented.
People live longer, not enough young people to earn it, etc etc.
Let's look at one of the two main reasons: people live longer.
This statistical statement is true, I assume.
People live longer. So they will need a pension longer. Pure logic.
Independent of health or quality of life, the pension is needed.
But does that also lead to the pseudo-logic conclusion that people can work longer?
In a way people tend to assume that living longer means living healthier.
We're told in many advertisements that old people walk faster, walk happier, and walk more supple than the generations before us.
So we think that health extends further in old age.
Can we draw the conclusion that in the near future a 68 year old person can be compared to a 57 one of the last generation before us?
Not often do I hear discussions, let alone research outcomes, link for instance dementia with the higher death age. More people get dementia... we know that. And people with dementia can get a lot older, we know that too.
So the increase of life expectancy is caused by stretching life. And that doesn't mean we add more years with better quality of life.
What needs to be asked is if the onset of age related problems also undergoes a shift.
Because only that would be a good reason to move the pension age forward.
In other words: are the people who stop at 68 under the new law as healthy and unhealthy as those who stopped at 57 in the last generation before us?
I haven't seen this question asked, and I certainly haven't seen it answered.
All I can do is look around me and see what's going on with people my age.
We still have to work 6 years (when we have a job).
Compared to when my father was moving towards retirement my 'group' is not as healthy as they were. Yes, we move more, and smoke less. but there are more people suffering from diabetes, heart problems, kidney problems and depression. The amount of people who can hardly cope with daily requirements is growing.
Less health leads to a lower production and lesser quality of production, so the costs of the products rise.
Less health also leads to more investments.
So making people work longer costs more.
In the eighties of last centurie people were aware of that, and the thought was that it was wise for older people to quit working early, so young people could have jobs, and start a proper career.
I'm in favor of that thought.
Now many young people are without a job. Their education is often outdated when they finally can get work, so they won't get the job after all. Add to this the lack of life-long jobs with the same firm, and lots of job changes, even within a year, and it might be clear that young people will be struggling their whole life to earn a proper living, with the consequence that building a good career is out of the question and caring for a family too.
By keeping the oldies at work, we're creating a lost generation.
When my heart gave up, I was turned into a pill eating machine.
I know these clusters of chemicals keep me alive, but that doesn't mean I love them for it. Not at all.
They take a lot of my time and attention.
4 times a day I have to remember to take them, if I want or not, regardless of the place or situation. I've learned to take them with a piece of bread or something like that, because water is not always available.
It's not possible to take all boxes and pots with me, so I have to fill special boxes.
Some pills are very tiny, so it's a problem to get them out of the blisters.
Others stink when the blisters are opened.
Some boxes and pills look the same, so I have to be careful not to make a mistake. A while ago I put vitamin D in the box instead of heartpills. I discovered it, because I started to feel very unwell. And counting both kinds confirmed my suspicion.
At times boxes are completely changed and sometimes also the size and colour of the pills. So I can't rely on experience. It's reading and checking all the time.
It takes me over 90 minutes to get things sorted for a month.
The pile of junk that is left bothers me too.
The blisters are made of plastic and aluminium, the boxes of paper, and some pots are plastic too.
I have to pay to dispose of them.
Re-using is not an official option, but I often ask the kindergarten nearby if they want to have the pots and/or boxes. A few times a year they like to have the pots. They use them to put seeds of watercress in them, so the children can take the seeds home and grow watercress at home.
The boxes are used for crafts. They're painted, or they glue things on them, build things.
The blisters can be used to make bowls for the dollhouse 1:12. But a house only needs a few bowls.
So what's left goes in the bin.
I'd rather have my pills in pots that can be refilled. It saves time, and a lot of junk.
Taking pills is not a matter of following the doctor's wishes.
The pharmacy is supposed to control for unwanted interactions. I've never had a warning. They trust the cardiologist, and he doesn't check anything. As king of his profession he wants everyone to do what he wants; he thinks he's right.
So:
- as a diabetic I get pills from him that interfere with blood glucose levels.
- I'm allergic to lactose, but I get pills with lactose.
- I've got asthma, but I get pills I'm not supposed to take, because they enhance asthma..
- I get pills with positive interactions, meaning they enhance the activity of one or both of them
- I get pills with negative interactions, meaning they diminish the activity of one or both of them
- I suffer from kidney-insufficiency (thanks to him), but I get more nefrotoxic medication
- I get so many pills that even the additives add up and lead to side-effects.
There are so many issues, that I can't get a good insight anymore.
Some pills mask vitamin and mineral deficiencies, some pills cause them.
Some pills need a distance of two hours from each other, others need a 9 hour interval.
Some pills need to be taken with something fat, others absolutely not.
Some can't be taken with grapefruit. When you think that's not a problem as I don't like grapefruit... be aware that some jams, sweets and drinks contain grapefruit too, and it's not mentioned on the product.
And the cost of the fun to stay alive?
I pay for insurance, but before the insurance pays I have to pay 385 euro first, called 'own risk'. That means that in January I have to pay 535 euro for health insurance. (And those members of my family who use medication too. The pension is 1650 euro, and we're here with 3 medication taking people... so use your mathematical skills. Next year they want to raise the 'own risk' to 500 euro. Is it strange to think I won't be able to pay? (Rent is 754 euro)
But hej..that's not all.
Some pills need an extra payment per pill. I don't know why the government thinks this is fair.
And not all medication is covered by the insurance.
Metformin causes a B12 deficiency... because I get shots the insurance covers the problem.
But I also need Pyridoxine and folic acid, because of a metabolic disorder. I've got a Vitamin D deficiency, and a magnesium deficiency.
Since my heart almost caused a complete body shutdown, the metabolic uptake is insufficient.
So the doctor diagnoses, and I pay for what I need.
Leading to saving money on food and drinks....
And about theside-effects of the medication? That's for another blogpost.
Understanding a bit of dementia
It's half a year now, since he left the house, and I'm still dealing with the peculiarities of his dementia.
The 115 pairs of new socks have found a place, the enormous piles of blouses too. But I'm still dealing with the chaos he's created in the world of money.
I tried to be polite and kind when stopping memberships he didn't need anymore.
I've got plenty of bills over the past months of memberships he's told me he's stopped.
I tied to explain the situation and most of them expressed understanding, stopped the whole lot and that was it.
In fact only the workers union has no consideration at all. Can you believe it? They are there for the wellbeing of people, and they care for nothing at all. I don't have the money to pay them, as simple as that, but they want payment, even though they delivered nothing, no service, no magazine, nothing.
Then today I suddenly realized why they all complained the automatic payments were returned by the bank, even though I didn't do anything.
I think he has withdrawn the permission for automatic payment with the thought that they would understand membership has ended.
I know it doesn't work that way, but he didn't.
Dementia is a process which is very individual.
We're here with a nursing-student and a psychologist, so we saw the process grasping him.
The forgetfulness, the loss of decorum, the mood swings, the repeats.
He thought the world turned around him. Created rules in his head and expected us to act on them, even when we didn't know those rules.
Sometimes it was possible to talk with him about that and his reaction would be: 'It's a better way of dealing with things.' Like he had to reinvent the world.
But he had.... he had to reinvent his world, because he didn't understand the rules anymore. Partly because he'd forgotten them, and partly because he couldn't control them.
So let's see if cleaning the chaos is a bit easier knowing this.
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