New nephrologist

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., 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.


He compared himself with the world.

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.


Not nice, but had a good laugh.

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...


Still amazed

I'm still amazed about what happened yesterday.
Telling me he doesn't want to inform me fully about the way my heart has changed, because he just has 10 minutes.
And stating it's the national system not to cooperate wth other disciplines.

I bet he didn't know my files at all, just like my former cardiologist. And he didn't know why I was referred to him. Otherwise he would have started with that.

He didn't say a thing about the EKG. Didn't compare it with the former one. Certainly didn't make an interpretation, but just went with the computerdiagnosis. Which is not accurate.
I wasn't told anything about my blood pressure.

In fact he didn't do anything useful.

Let's wait if he contacted the nephrtologist. She's, according to other people, very good in cooperating for the wellbeing of the patient.


Another cardiologist...another disappointment

I was open awaiting the new cardiologist.
Found him on internet and he seemed to be nice.
Worked at a center that not only is technically advanced, but also renowned for its good care.

Arrived in time, was called in in time by the nurse. Weight, EKG, blood pressure.
Some chatting. I sensed something I couldn't put my finger on.

The guy came in. Smile, hand, OK.
I asked how long he was staying. 'A year, and when I do OK, longer.'
'I'm working for a heart organisation. So we have to send fanmail to the head of the department to make you stay...'
He asked why I wanted to know and I told him my experience with people who need to clear up the waiting list, that they don't know the files and just do something to make you stay away for another half year.
Saw that sudden something in his eyes that made me think he didn't know my files.

Then he started to ask if I could sleep.. said I didn't sleep well.
'Can you sleep flat?'
I always could sleep flat, even when I was dying, I couldn't sleep on my left side, and now I can most of the time.
Did I ever get dizzy or fall. Told him I fall once in a few months, just out of the blue.
If I did something like walking or bicycling. 'I'm not bicycling much, as I don't want to fall from a bicycle, and my hip often hurts too much'

He was just checking symptoms... he didn't even know why I was there!

So I told him that I was not happy with the way things were going with my medication. That the first cardiologist told me to review it after a year and it wasn't done, as the second cardiologist didn't dare to change anything.
To my surprise I got a love song about my second cardiologist. He was so good, so experienced.... He knew what he was doing. 'Yea, ignoring a kidney insufficiency for 3 years, denying it completely.
He never told me anything. that's why I asked to sit down with the new cardiologist to go through the imagery and see what happened with my heart, what changed in time, how it is now.'
'We just have 10 minutes for each patient...I have 17 more patients to see'... so in fact he said: ' I won't take the time to tell you how your heart is doing.'
He told me I should be happy to know I came from a very bad heart up to now. My output is reasonably good.

Well...isn't that nice?

And my arteries were clean, very clean. 
Yes, that's what the written report of that time starts with, as they expected cluttered arteries and I had none.  (5 years ago)

I felt I was shutting up again. He didn't listen to what I said.
I don't want to be told to be happy I'm still alive. Been there, done that.
I want to see with my both eyes what has happened with my heart.  I've seen how it was, saw the movie during an information afternoon for heart failure patients as an example of a dying heart. (!!!!!) after I saw it with my cardiologist.
That was all.
It's MY heart, my insurance paying for his time.
What do I need to do to see what I want to see: ask the head of the department for half an hour of a cardiologist? Or just give me the movies and photos. I can interpret them pretty well. Did my studies...

Then he came back on my question about diminishing medication.
'You can do without the furosemide'. It's a waterpill. Added to the pile of the rest because I started to keep water. I got 40 mg a day, turned it back to 20 in 2 days. Can't do with less.
Discussed it with the nephro-nurse and she wanted to keep me on it, as did the doctors. So I told him nephrology wanted that to stay, as they did one of the other pills the former cardiologist wanted to throw out.
'Your advices go against each other. Why can't cardiology and nephrology work together? I'd rather have one consultation each year with the two of you, discussing matters and sitting in each other's hair, than me stuck in between two disciplines giving opposite advices.'

'But we don't work that way in our health care system. We each do our job and that is it. That's the system.'
'That doesn't make it right. It doesn't benefit the patient. When my heart gets better and my kidneys worse, what's the use?'

So he felt he had to talk with the nephrologist.
'I call her, but I'm not sure I can get in contact.'
I mumbled that mail is invented for that. He had me say it again.
'To reach someone by mail is even worse.'
I gave up...
Maybe he hasn't found out the benefits of mailing in the medical world.

'I came here to exchange Metoprolol for something else, as it makes me feel depressed.'
That's why I was referred to him.
Not a kind word, just; 'you'll hear it on monday'.
'See you in 6 months.'

Well, I'll guess he sees me walking past his room when I'm on my way to speak at the information afternoon.

And then I walked outside, angry, disappointed. thinking I'd met another car mechanic from the fanclub of my former cardiologist.

How on earth can I feel happy my heart is doing 'reasonably well' when my kidneys have paid the prize and I feel shit?

At the toilets a woman greeted me with a nice smile. Last time I was speaking at an information afternoon she sat at the front row.
Went to the shops and visited one of the shops I used to go a lot. Retail therapy. A lot of things for a euro, so I bought 2 cookbooks for my kids. Had a bit of small talk with one of the girls. She's so kind.
Son needed toiletpaper, so I bought the largest package available.
Suppressed the need to bring it to hospital to clear away their shit.

Well, on monday I'll meet the new nephrologist.
I think I have to leave all my questions at home, not to be awarded a note in my files of being the worst patient of the hospital.
If she's not what I need, I 'll go to the other hospital.

Cardiologist is waiting there.
But right now I feel like crying against his shoulder.... Problem is: he won't mind...

Maybe I'll throw all those pills in the bin and see what happens........


Writing about and living it

Tomorrow I should go to the dentist, a meeting, an information session, and a political evening.
I'm staying at home.
Because none of the boys wants/can drive me.

I woke up still tired.
My face hurts like hell at unexpected times. It's not when you have toothache and you eat an icecream, or drink a hot coffee, enjoy a sweet or whatever sets your toothache off. (Better to say: on).
It's a pain that either generates from the lower jaw under my ear  and moved to the front, or in my left sinus, moving down.
In fact I just don't know if it's toothache or neuropathy. I don't care, I want it to stop.

None can take me to the dentist.... imagine that....
They can do what they want all day, ar ready to take dogs and cats from a friend through half the country, and me?

Not that I ask them more than the absolute necessary things. Just hospital visits and the volunteer work. Not even to bring back the awful present I got last week..., not to buy a new bra in the center of town, and certainly not to have some fun. I haven't even been to the christmas exhibition with the wonderful fairies. Haven't been to Germany to get cheap groceries.
I'm stuck at the house like a 99 year old, looking at the same walls, cleaning the stuff of others, and solving their problems too. What I don't move away stays...
I don't have the money to use a taxi.

One of the girls has hurt her leg two weeks ago. She's a dancer. It still hurts a lot and I suspect one or more muscles to be torn. A hospital visit is planned for tomorrow, she wants me to go with her.
I gladly skip the dentist to go with her, but she's in another town, an even when I would go by train, I have to walk a distance that's too much for me.

So I woke up feeling like my life has no purpose, but to be there for others.
They don't care to spend half an hour to get me somewhere to get rid of my pain or to assist their sister.
I work hard to write articles for  magazine that shouldn't be filled with my stuff.
I'm happy not to have such an ego that I want my name under each and every written piece, but it would be nice to experience a paid job, instead of working many hours a day for nothing. I need money to move to a place where I can be happy. I want to be in nature, not in this stone city, with loud neighbours and never silence.

There is so much that bugs me (kids wanting the drill and not bringing it back, so I have photo's and other stuff waiting to be put on the wall, etc etc.).

Maybe I've got some flu, maybe...whatever... but I felt depressed today.
I miss someone of my own age to talk to for hours, I miss being hungry (thanks kidneys), I miss a relaxed time...

I heard the geese fly... and oh, how much I wanted to fly with them.

But I was writing articles, about heart disease and genetics and, how ironic, about depression.

Well, mailed the dentist that I want an appointment and asked if he wanted to prescribe antibiotics before extracting a molar. The articles of today are done. Tomorrow I'll have to find photos and maybe write more. And do all sorts of other things that need to be done and I can do from home, waiting for my daughter to call to tell me what the orthopod said.
And make a list of questions for the new cardiologist and nephrologist (thursday and next week monday). Why they refuse to treat the anemia is one of them.

I want a better quality of life...

Oh no!! - day

This was a typical 'Oh no! - Day'.

I couldn't sleep, to begin with. Went downstairs to eat something, because sometimes it's a low blood sugar that keeps me awake. Found out is was snowing...a tiny, little bit.

All gone an hour later...

Tried to write my articles and I was too tired.
So I made a call for the telephone service, which was perfectly OK.
In the afternoon I was yawning so much that the tears in my eyes prevented reading my own stuff.

Tried to take a nap, had a nap (yeay!!) and woke up with pain in my jaw. Didn't know if it was neuropathy (my feet were hurting like hell too) or tooth ache.

No way I could find out. One of my daughters has hurt her knee last week and she had her whole leg full of large blue patches. I told her to go to the doctor again. She didn't. Argued that the doctor spoke about a contusion of her knee and it was done.
The past week she had a lot of pain and it didn't get less, today she saw new blood patches under her skin, moving downwards. So there's a fresh bleeding in the leg. Probably torn muscles.
She's a dancer!!!

So we told her to call the doc and have a referral for the ER.
The woman taking the call...told her to go to the doctor tomorrow....

In the meantime one of my sons arrived here to fetch the car to drive her to the ER. I was hanging clothes and putting my pills in the bag to go with him. So he could return home.

Mu tooth ache became a lot worse. Painkiller I took didn't work, so I had to take something which is not good for my kidneys. Under normal circumstances I take it at the first sign of a problem and that's it, but the nurse didn't want me to take it. So now the problem is far worse.

I hate going to the dentist. Had a very good and kind one in the past, but he works in Toronto now. If someone would pay my flight I would hurry to him with my mouth open and sit there reasonably relaxed until he had fixed my whole mouth.

Before him I had two female dentists. They demolished my left bottom jaw, so I couldn't have an implant there, and they not only gave me loads of fears for the dentist, but also a lot of anger.
After my beloved dentist I got one of his pupils who was even more fixated on cars and money, than on being a kind person. Most of the time he's very kind to me, because he knows I know where he comes from, but sometimes he's not the guy I want to have as a dentist.
When I wanted him to remove the molar which is hurting now, he refused. I understand why. The roots are turned outward. So he can't just pull the thing out, but has to work on it. And he doesn't know what it will do with my jaw.

Then I got my heartproblems, and I didn't think it was worth to invest the money and effort in my teeth, as I wouldn't live long anyway.
The fear crept in, then kidney problems, so a lot of medication is a no-no.
Then I had no money.
The insurance pays a bit, but not everything. I just don't have the money to create a fancy supermarket mouth, as I call the dental look of the moment. Most of my teeth are good, but just like one of my daughters I was born with some dental oddities. Didn't change some teeth and molars, so I still have my kid's teeth, and they're bad. The one hurting is one of them.

So I'll start with sending the practice my list of medications.
And then I have to go and face the guy's tremendous car and ego.
Well, I like his fancy car...not his ego.
And I don't fancy the bill... for a hole.

Related Posts Plugin for WordPress, Blogger...