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.
.
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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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.
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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........
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The past days my blood pressure was quite high. I was just too busy to pay enough attention to it.
As I was stressed about several things I had good excuses for it, and I thought today would be a day of relaxation, so I expected the blood pressure to go down.
But the day was less calming than I expected.
I had a beautiful present for someone's birthday. Very beautiful.
We were very happy to have such a lovely present.
She rejected it with the words: 'Sorry, I'm going to get it tomorrow.'
I got it back, wrapping paper included.
As I have had my birthday two weeks ago she had a present for me. A huge thing. I thought it was a large cookie-container, but it turned out to be some huge cylindrical thing where a small candle can be put in. It was larger than my largest vase, and my first thought was: 'where do I put this monster?'
I was invited, not along the family as usual, but along a care-oman who thought the world of herself and did nothing else than showing how well she knew everything. Add to that a very loud voice,.... and she was sitting beside me.
Normal conversation was impossible. Of course I managed to get a word somewhere in between, because she needed to breathe. But that was it.
When I went home I had a splitting headache.
Right now I don't know where to go with my blood pressure problems.
Cardiology took care of it, but it turned out this week that it's now in the hands of nephrology (kidney department). None told me, so when I had a talk with the nephro-nurse I had the feeling that she should keep out of the business of someone else.
When I'm ill I have to report to cardiology, but... at the beginning of the evening my left kidney (the best one) was hurting. Later I also had some chest pressure. At a place I've had pressure before and nothing happened, so nothing bad is expected.
It's weekend and it's carnival. So the ER is crowded with drunk festive eejits.
I'll monitor the problem and stay at home. Will call my own family doc on monday.
Unless it's a real emergency of course.
And even though the deadline of the magazine is tomorrow, I'll give myself some rest this evening and go to bed a bit earlier than usual.
.
Finally an appointment with a new cardiologist. Next week.
Looking forward to it, because I want to change all of my medication.
I have to calm down, as I feel like a rugby-player in the middle of a tackle.
Cardiology too refuses to treat my anemia. And the treatment of the blood pressure is now down to....tadammmm... nephrology. Well, i'm not happy with that at all. NOT AT ALL.
So I'm going to look for the mail of that nephronurse and ask for another one, as I don't want someone who lives around the corner here and who acts like the black bad stepmother, and who is worse than my own mother was (and she was absolutely not an image of a kind, moderate or slightly bad mom) to be my carer.
Isn't it ridiculous that no one told me properly that there was a shift in treatment of blood pressure between cardiology and nephrology?
They don't even cooperate!!!
I don't know how long this cardiologist will stay, so maybe I'd better prepare to ask that question first and pack my bags when he's there for just a few months. He's not a real bad one, as he is one of the former students of the departments I've worked two weeks ago, but I don't want to go over my story over and over again.
I want one who I can trust for a long time and who can work together with nephrology.
I there's no cooperation, it's a no go.
(I can't tell on the phone to patients to go for the best care when I don't want to do it myself.)
I feel very rich, because there is a good cardiologist waiting for me at the other hospital. But I'd rather not go to that hospital. Worked too long there.
The real problem is nephrology.
It's a mess there, I hate that nurse, I don't like the way they exaggerate the use of a few ibuprofens a year into nearly daily use (I absolutely don't use many, as I don't even have the money), treating me like a stupid kid when I object and tell them they interpret my words wrong, and I think their way of dealing with blood pressure is completely wrong, leading to undertreatment.
Yesterday I was at a day where they wanted to shift patient treatment from treating the disease to treating the person. Patients should not say I have a headache, but say I want to do than and this without a headache.
Well, I bloody have a heart disease that was missed a long, long time, because all told me asthma was the cause. They even didn't listen when I told them Ventolin wasn't working anymore.
Then they put me on the waitinglist so I nearly died from it,
cardiologist 1 saved my life and warned me not to take all those meds longer than about a year.
Cardiologist 2 said he didn't dare to change meds and caused kidney insufficiency and when my family doctor hadn't interfered, based on my pressure on him, (sorry, but it was for a good cause) I still wouldn't have known about it.
And I still have the same medication!!
I feel shit, tired, depressed, old, nauseated, or so stupidly hungry I can even eat old bicycle tyres or not hungry at all so I have to force feed myself. I can't fall asleep, because I'm wide awake at night (so I applied for a job as night carer) and I drift off after dinner.
And I'm often dizzy, my muscles are either as stiff as wood, or stop working far too soon, my neuropathy is worsening, so my body is trying to find a different balance as my toes won't offer feedback to the brains anymore, and I feel like I have to fight my way through life each and every day.
Oh, it keeps me going.
But they have messed up and my body has messed up and I want better doctors who cooperate!!
I don't want patient targeted care.
Have you ever heard of non-patient targeted care? LOL! Something like: I need to treat your heart, so give your pills to your neighbour.
I want teamwork.
I want communication.
I don't want a patient online file which can be reached with the same username and password as my health insurance account and my tax files, kept by the government.
I want them to talk to another and to me,
So it's teamwork or no work.
New model? Not used to it?
Get used to it!!
And don't tell me I have a fluid limit, and at the same time to drink as much as possible.
I'm not a puzzle, and that my image pops-up when you put the arts together?
I'm me.
So respect me.
