New nephrologist

3/09/2018 Syl's bucketlist 0 Comments





It felt like shopping... going by bus, walking into the hospital, which has become a familiar place, because I'm there almost every week. Smiling at the woman of the desk, who knows my name without thinking. Pushing the button in the elevator without looking and talking with the nice lady of the foodcar, who needs to be at the lower level.
On my way to the department greeting a secretary of the administration, greeting the nurse, and saying 'good afternoon' to the elderly people in the waitingroom.

One of the doctors had a quick look at me with a questionmark in his eyes. Guess he didn't expect me sitting there. Maybe the age, maybe the place. He couldn't have seen that I was reading the worst feminist magazine of the country. I took it from the pile, as I was surprised to find it there. The last time I was reading in one of the editions was 20 years ago, when I was visiting a feminist writer to interview her. The content was almost the same, the photo's more of this time, and I was looking for the stress of anticipation...getting to know a new doctor in my life, who can either give me rest or ease the decision to leave the hospital... but I didn't feel stress or even something unnerving.
In fact I was just tired.

She was a bit smaller than I expected.
The same kind of petite as my daughter, compensating with energy in a natural way.
She apologized for being ill, while joking about it. I said that of course I felt annoyed when standing at the desk, but I also liked the fact that a doctor took the consequence of being ill, instead of doing her job at just 50%.
It was kind of women between each other, reaching out, adjusting the mode of conversation, keeping it light, trying to grasp some sort of idea who the person at the other side of the table is.
I always wonder why people want to define someone else by their profession. Yep, I'm a psychologist and a journalist, worked my way through medicine studies without having the opportunity and the money to do the exams.

As expected she started with the Ibuprofen... the files said I was a user, and it's a dangerous pill to take. If I knew why...
Right at that moment I knew again why I had only one friend-doctor at internal medicine. I'm not looking for a mom or a teacher, I want a doctor who listens, hears what I need.
And I didn't need a speech and lesson again, so as a lame schoolgirls I said: 'In short: it shuts the kidneys down.'
Got the lesson again. Not at the level of the stupid child who presumably won't understand it anyway, but more at my own level, so protest didn't pop straight up out of my head, but I swallowed it away and smiled. 'Oh yes'.
'There's one huge problem...' she gave me attention, 'the nurse treated me like I was ibuprofen addicted, but I told her clearly I used it about 3 times a year, and I got the message. Before my kidney function dropped tremendously I hadn't used it for over 3 months.'
She had the last words: 'never ever use it again'.

No question why I used it, no alternative. Like telling not to use chewing gum and not to blow bubbles, without explaining that chewing gum will get a weird taste after a few minutes, and some bubbles explode with the sticky stuff grasping your face and chin to never let go.

So those files have a life of their own. Someone puts a mistake in it, due to not listening properly, and you land in medicine school with a 'stupid hat' on your head for a long time.

Asked again for a dietitian. 'Our nurses are very good'. I didn't say: ' I don't want your bloody nurses, I want a dietitian who sits with me to puzzle an exciting menu together, so I can feel a bit happy to eat again'. I said: 'I need good input as I'm bored with the way I eat: no sugar, little salt, low protein, low fat.'  She looked into the files again. 'Bloodvalues are good... You're doing great.'
Well, hell. I'm not doing great! Banana for breakfast, 2 sandwiches for lunch, 3 potatoes and a few veggies for dinner.... when I eat dinner. Often I skip it. Eat a few sandwiches. Is that great? I guess it is for people who can afford expensive meals, a salmon sandwich for lunch bought at the canteen.

Again I got more professional insight in how lonely people can feel, how pushed aside. I can understand people are driven to suicide, because they feel there is nothing to live for, while others exclaim: 'We don't understand, he had everything he needed in life.'
Well, leave your own seat... place yourself into the person in front of you. Leave your own frame of thought and listen...bloody hell, LISTEN!

Yes, my kidney function is up again... great! No question how that happened. Did I do something special to bring it up?
Well, maybe better not ask the question when you think you already know the answer you can't know.

That damn smile of me.. it makes people think they're doing great. But I can't let it go, because they wouldn't see me at all....

Maybe I love the sea so much because it doesn't ask, doesn't expect things, doesn't assume things, and doesn't pretend anything else than to be there, being subject of the wind, changing colours when the sun sets, and my shadow follows me with larger steps until it fades.

Yes, the cardiologist called before monday. They agreed on diminishing my medication. Waterpills..off, Ace inhibitor in half,  beta-blocker in half.
'What if the edema starts again?'
'You take the pills again.'

I tried stopping them two weeks ago. piled 2,5 kilo in one day...
Tried to skip 1 metoprolol a while ago.... blood pressure ran up after a few days.

Oh, I got the advice to stop gradually.
Didn't need that. I'm not a fool.

Then challenged the diagnosis. Didn't want to leave without that.
'I would have agreed with diabetic nephropathy when the diabetes would have involved large glucose swings, too high values, but I don't. I've always worked hard to keep them low, within the limits and at level.'
Again a dive in the files.
'Well, when we do a biopsy of the kidneys all diabetes patients show diabetic changes.'
Well, when you conduct autopsies, all people show cancerous changes somewhere in their body, which doesn't warrant the conclusion that a common cold is caused by cancer.
She looked at me...expecting me to talk and so I did. 'My first cardiologist warned me that living such a long time with such a bad heart would have consequences, as the oxygentransport to muscles and organs would have been below what was needed. He said I might be confronted with unexpected problems, as certain organ damage. I was a dancer, was well trained. When I came back I couldn't walk 10 meters without my muscles getting bad and weak, and muscle pain. It's still not completely normal. So I assume we can pass the diabetes hypothesis....'
She thought, and agreed.

I left after we agreed she would stay my nephrologist. Told her I would change cardiologist, maybe even go to the other hospital. She was not happy with that, as the files are on different computer systems. 'The cardiologist is a very open person, he can deal with that, and I can. I will hand deliver my info at your desk in time for the appointment.'

Blood pressure, weight. My weight was up 1 kilo since two weeks ago.... Not a word.

I left.
Not mad.
Not disappointed.
But not content.
Like I had bought the wrong colour of jeans, but still had jeans to wear.

When I arrived at the busstation my daughter was waiting for me. We went to the shopping center to fetch my medication, which was waiting for me. The young woman was happy to see us, took the time for a talk and when my daughter bought something with an extra little bag, she gave me one too.

Then we went to the second hand shop. I like to look around, wonder which people use the items.
Found small cups and saucers I liked and while he was wrapping the different elements, with care, we joked and had fun. His face relaxed, and it was like he went 10 years younger.

When I was at home and unwrapped the small cups I saw printed on the paper:
'Listen to your instincts'.

Time to ask the cardiologist of the other hospital if he still wants me as a patient.
And follow his advice whether he wants me to stay with this nephrologist or move to a nephrologist of the other hospital too.
I'm done shopping.







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He compared himself with the world.

3/05/2018 Syl's bucketlist 0 Comments





So our car broke down during the cold weather of last week and my second son was planning to come this afternoon to see what was the matter. It's not freezing anymore, so something that was frozen would be defrosted.

I didn't dare to do some work for the phone service as he might walk in with a lot of noise.

And later in the afternoon I started to get ready for the meeting. I kind of forgot that the bus takes such a lot of time. So I had to hurry to be in time at the busstop.
I arrived in time at the hospital, could walk through straightaway, and was told by the secretary to find a bread I like. (No rucola).

It was nice to see the others again, and ity was good the other woman was not present. It created a far more relaxed atmosphere.

He came in rather early, took a chair outside the circle and that surprised me.

When he arrived he shook hands with every person. His boss shook his hand and called him by his first name. When he arrved at me he was surprised. With a bright smile I shook his hand and sad 'hi ...mentoning his frst name, we know each other.'

He finished his studies two years ago. He looks a lot older, so I guess he had a different job before this.
He didn't work with patients, but was advisor of the board. When I worked there at the hospital that was the job for those who could learn well, but didn't have the human skills to deal with patients. So I think he needs to make 'patient hours' and that's why he works at the other hospital.
I might be wrong...

He started with a photo of a tropical island, telling that in the past he had to use a travelshop, but nevertheless he went there often. But now he can book online. To show that the world has become more digital. I started grinning, as one could say he compared himself with the world. LOL!

He's working on a project to digitalise patient care.... When I told him that I missed a good psychosocial care plan, he didn't understand that that is more than psychological care.
That gave me the feeling: get me on the development team, because you don't know one bloody thing about emotion.

I asked him why they want to go digital to a high level. when they can't deal with simple emails to the cardiologist. He didn't like the question. "You can't just plunge patients into an all digital care-world when you can't fit a low level of digital patient care into the present world.'

I had the expected sharp moments and they were good. He was not able to deal with them, but his boss picked it up.
He was speaking about patients dealing with changes in medication themselves. I said that I thought he was creating a world which can't exist when cardiologists tell patients they're not able to give them the knowledge they want in 10 minutes.
And there were some more moments like that.
It was not only paytime, but I mainly was criticizing a researchplan the way I would have done with my own students. It has been my job for 5 years.

I wonder about the psychological consequences of what they want. Waking up and your phone asks you if you have breathing difficulties..... Would maker me feel more ill than I am... He said it would take just a few seconds to answer, but he doesn't have any understanding I don't want that in the morning, because I would feel the patient and forget to be grateful I'm still alive.

In the meantime I've got an invitaton of the patient care coordinator of my hospital to talk about this last consult. Used it as an example why there is more to patient care than just having a consultation. The hospital wants to change communication into more patient driven care. So the patient tells what he or she needs and the doctor replies. But the doctor needs to be able to deal with this.

Went home in the car of a very nice colleague. Took 15 minutes instead of the 1,5 hour with the bus.

So all in all a worthwhile day.

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Not nice, but had a good laugh.

3/04/2018 Syl's bucketlist 0 Comments




Considering that I don't feel well,  need to get rid of the high blood pressure (Yes, the systolic pressure is very high), and I have to do a lot of other things that take a lot of time, I decided to call in ill for the meeting of tomorrow evening.

Then I saw the agenda... stating that my new cardologist is guestspeaker on new ways of consultations with heart failure patients.

Not nice, but  had a good laugh.

He'll get some very interesting questions...

Made an appointment with one of our local political leaders for thursday.
Her invited me after a through comment on one of his online fb-posts.

On friday the nephrologist is planned.

We had a nice weekend, as the other part of the twin came and stayed here until this evening.
Her leg is finally healing with the help of the fysiotherapist.
It was very relaxed.
But the blood pressure stayed far too high and I got swollen feet and legs. Not good....
Counting down to friday...


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