Decision nephrologist


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.

47. DVD of the BBC-series: Great Rift: Africa's Wild Heart





I'm very impressed by the BBC series: Great Rift: Africa's Wild Heart
I love every moment of it.
The way nature is filmed is amazing. The effort the crew took to give us an insight in animal behaviour was huge. But it certainly paid off.
It's one of the few series that keeps me focused from the first second to the last. And makes me dream long after the episodes have finished.

The series is narrated by Hugh Quarshie, one of my favorite players of Holby City.
His voice calms me, and draws me in the film even more.

I think I can see this series over and over again, seeing each time new things, and never ever be bored.

So I think it's wise to have a DVD, so I can watch it when I'm in the hospital or very ill at home.

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Gone and back



So I did the urine collecting a week later.
When I collected the containers I expected one with a liquid or powder and one without. But they were both without.

The first day went OK, the second day my kidneys almost shut down, and as I didn't know if I could take a tablet to keep them going I took nothing. Maybe they can find the reason of the shutting down..

Had to pee in a little pot too. Pity...just a few drops. I was afraid they would tell me in the hospital it was not enough, but the nurse didn't even look at it.
She did the paperwork, and that was it.

Another nurse took some blood and off I went.

Had my eyes checked so I could order new glasses.
When the woman was ready she told me to come back later in the week. The results were so very much different from last time, she wanted someone else to check them too.
So: new appointment: saturday.

The rest of the day I did some chores, but I felt more and more cloudy in my head.
So at last I cancelled tomorrow.'s going with my son to the movieset.
It will be rather hot and I can't risk getting unwell. There's nothing to hide at the airfield.

In the evening my kidneys started to work again.

Pffff.




46. Each time they sound a smile of a friend enters my heart.



Yesterday I was talking with one of my daughters about the new friends online that are such a huge support, just as my offline friends.

Some offered to go with me to hospital appointments, which is very kind.
Right now I don't need a person to go with me to talk to the doc, because going by myself makes me more focused and more critical.

But I don't know what I need in the near future.

I said: 'Sometimes internet is not as good as writing letters, otherwise I could put their letters of support in my bag'.

Don't know what happened, but suddenly I had to think about my charm-bracelet.
I always took it with me when I had to sing solo with the choir. I had a wonderful voice, but I was always third in line because two other girls were far more confident.

Maybe it's a good idea to start a new charm bracelet.
Charms need not to be expensive. I already have a bracelet to put them on.
And each time they sound a smile of a friend enters my heart.

What do you think?



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Passchendaele 2017





When you died
by the need to kill
and disappeared for forever
in the mud
of war

when you died
a father, a partner, 
a son, a brother,
and a dear friend,
you were just gone
and none even knew at the moment

The hell created by others
because the lives of you all
are just part of a game
of ego
and false power
took all you stood for
and more

And there you are
a name on a wall,
no grave
but you left us far more

You left us our future
our new generations
You gave us peace.



© Syl

So I try



Today I started to feel better.
I'm sure it was due to all the well wishes ( ;)).

My head was not as clouded and my muscles could deal with movement longer and with less pain and tiredness.

I think the shock of being at stage 4 already and the realization that I have to choose for dialysis or refusing dialysis, and that it all means that when things won't improve I'm going to die sooner than later is fading.

Refusing treatment is not an option.
Dialysis at home is not an option. Not enough room for the machine and not enough room for the materials.
So the choice is no choice: hemodialysis at the hospital. My hospital provides the option for the night too. So that's good.

And that I feel a bit better helps too. It means things can improve.
Maybe I need to fight a lot less at the moment.

I'm not afraid to die, it's the road... that bothers me. It's that everything is about money and not about care...that bothers me.
And it bothers me that I'm alone.. no shoulder. Oh, I can do it alone. I know that.

But walking.... balancing...the thin line between being OK and depression... keeping watch I don't drop to the wrong side. Depression, self pity, they're so undermining. I can't let them happen to me.
It's a constant battle.

I love to be alone and do my things, but when I'm alone I feel lonely.
It's for a part because I don't feel happy in this house anymore.
And the spirit of: 'I'm going to survive that overall heart prognosis' is challenged a bit too much by the renal diagnosis. And by thee fact that I can sit on the couch and have great plans to clean and tidy and change things and when I stand up I'm so horribly tired.

With everything that needs to be done around me, and only me to do it, it's a vicious circle that needs to be broken.
So I try to do at least 1 thing each day, even if it's only the dishes.
But it doesn't tidy the house...
and it doesn't ease my mind.


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Admin problems -2-



The appointment for the heart echo arrived.
It's scheduled at the same day as the visit to the cardiologist. So there won't be a written report available during the consultation.

The health insurance was also present in the mailbox. It was agreed I would pay on their site, but  I had to contact them again because there was no payment link.
So I got the bill in the regular mail.
Those people are very very sick!!!

Well, at least I can pay and maybe then all issues will be finally solved. After precisely 6 months of troubles.

Bu I have to solve a problem here at home first: I can sign the card, but it has to be sent in a special envelope.... and I have none.

Now the rent-problem needs to be solved.
I will block payment for the next month tomorrow. I don't want  repeat of the problem.
Something, somewhere has gone wrong.
I paid, like they instructed. My daughter has read the letter a few times too, so we wouldn't make any mistakes.

I've decided that when they persist, I will go to a social worker. Not because I need that, but I want them to know there is some kind of extra eye looking to what they are doing.

Society is becoming more and more anonymous.
We used to be able to walk to the organisation that collected the rent. When something was wrong, we could talk to a real person.
Now we can't go to the office as it's at the other side of the country.

It makes me nervous, especially as they didn't even bother to confirm the emails.
I think it's impolite.
Well, maybe that's my age.... :)

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