Mistake in referral, and decision.

7/22/2017 Syl's bucketlist 0 Comments

So I got the paperwork from hospital.
In a hurry I have to collect urine during two days.
Need to go to hospital to collect the containers,
collect two days,
bring them back, and get bloodwork done.
When I make a mistake, like forgetting to collect, I have to start collecting again. So I have to go to hospital to fetch a new container.

And then I have to sit for 30 minutes in a position I rarely take for longer than a minute, in a silent room, without reading or whatever, alone, and the blood pressure is taken every 5 minutes.

I looked up the reason for this examination and found a few articles.
Less than 30% of patients experience white coat hypertension. Being in a neutral environment in a neutral situation gives a better blood pressure recording.
Great! But I don't have white coat hypertension.
In the past, with my former cardiologist, I've recorded blood pressure at home and we compared it with blood pressure recorded by the nurse and by him. All the same.
As a check I've also recorded at home when I went to the cardio-nurse the past years. No difference.
Another kind of articles wrote about the comparison of what we call a halter procedure: a complete day recording is just as good as a 30 minute one.
Which is nuts, because orthostatic hypotension (drop in blood pressure when you stand up from a chair) is not recorded when you sit all the time, emotional changes are not recorded, etc etc.

Problem for me is that 30 minutes in the position they want is almost impossible due to scoliosis.
And after raising 6 kids, 4 of them with very special needs, and 1 with a chronic illness I can't sit such a long time doing nothing. Too much stress in life, too much to worry about.

And why? Because the hospital wants to see if there's a need for blood pressure treatment, the leaflet said.
Well, I've already got a lot of treatment for high blood pressure.
Apart from that...that's not what I need from the nephrologist.

I mailed my doc to ask to see the referral.

In it I found that he mentioned Brugada syndrome as one of my diseases.
Brugada syndrome is a conduction problem in a normal built heart. It's a genetic disease, associated with sudden cardiac death. And it can be diagnosed by a special procedure to induce the rhythmic problems, and from the ECG.
I don't have that. I was diagnosed with DCM. My heart was extremely dilated, in such a way that the valves couldn't close any more. So the heart didn't look normal at all.
And I didn't have the diagnostic procedure.
On top of it all I was referred for genetic testing for DCM, not for Brugada syndrome.

So the more I thought about the tests, the more I experienced a strong resistance.
Part is due to my irritation by protocols. I want to see them as guidelines for thought and action, not as a law that needs to be followed under all circumstances.

Plus I was irritated that no name of the doctor was given, which gives me the feeling of being  a piece of laundry. Whoever gets what's on top of the pile has to fold it.
And the doctor was not a nephrologist, but an assistant. Which means he reports my case not the way it is, but the way he can deal with it with his present knowledge, which might be OK, which might be pretty minimal.

It all gave me the feeling far too much focus is on the end result of a chain of problems.
So yes, my kidney function is in the pre dialysis range.
Do we accept that?

Yes, when we take things from there.
No, when we also want to find the cause.

And the cause is clear: cardio-medication.
I'm still taking the same medication as when I was nearly dying from a tremendously enlarged heart with leaking valves. The cardiologist at the time told me he wanted to review the medication after a year, to prevent over-medication.
The present cardiologist told me, when I asked for it, that he 'didn't dare' it.
When a year ago my blood pressure dropped suddenly, I stopped taking certain tablets. It took 3 days before my body showed signs it needed those meds again., and with half the amount of those tablets I reached a lower pressure than before.

And there are more reasons I blame my cardio medication for the problems I have.

So I think my question for reviewing my medication and assess nephro-toxicity is a good one.
And when we have assessed it I think a new regime needs to be introduced.
That's a risk I accept, but in a controlled and safe environment.
As I'm having an echo this month (no date yet) it can be used as a base-line for the changes.
I don't want to have my heart deteriorate when my kidney improves...if that happens.

I took quite some time this evening to mail my family doctor, the one who referred me,
to ask about the Brugada syndrome. I think it's a mistake in my files.
But it's also a mistake in the referral.
And to make clear I won't do the tests according to protocol.

I want to see a proper nephrologist who knows a lot about medication and who can come to an agreement with the cardiologist about my medication.
Then I want to see what another scheme of medication does for my heart and kidneys.

I expect I'm over-medicated and hope my kidney function can increase.
I feel better than last week. My muscles are stronger and don't hurt as fast as before, for instance.

So when I was ready with the mail and it was to the doc, I felt a great relief.

Tomorrow I'll write a short letter to the cardiologist and nephorologist, whoever that is, to make clear what I want.
I don't want to throw away a lot of money on tests that are of no use at the moment.
I don't want to go to the nephrologist to prepare for dialysis, unless it's really necessary.
I want to stop the deterioration of my kidneys, feel better, and trust the people around me.
Because I don't trust my cardiologist for one single bit. He just doesn't care at all.

So let's see what the result is of this all.

At least my files will be a bit more accurate.



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