Still amazed

2/23/2018 Syl's bucketlist 0 Comments

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

2/22/2018 Syl's bucketlist 0 Comments

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

2/18/2018 Syl's bucketlist 0 Comments

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

2/15/2018 Syl's bucketlist 0 Comments

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.



Valentine's Day 2018

2/14/2018 Syl's bucketlist 0 Comments

Happy Valentine's Day!!

Started the day with another gold for speed skating. Brilliant!
Then hurried to two meetings, one of them as postponed because the first took far too much time.

The meeting was fun. We really enjoyed it.
The group attending is usually very large, and between them are some 'characters' and ego's that claim a lot of attention and spread a feel that is not always positive.
One of them tends to disagree with me before I've even said a word. It's very disturbing to hear after each sentence: 'No, no, it's my opinion that....', like I'm hired to speak her words and I'm not doing the job well.

So I had a sense of freedom, and watching the others they had it too. We had good laughs, could speak our minds, and had a nice brainstorm that lead to a meeting that will be dedicated to all of that.
It made me feel more positive about the volunteer work.
Nevertheless I asked for someone to take over the information sessions in the hospital for a while. I was surprised that the other speaker (we alternate) asked me not to stay away forever. Didn't expect that.

I'm over my ears in writing. More pages need to be filled and HQ has asked me to write a piece for the national magazine. Great, but the telephone service needs a lot of attention too. Which means each call lasts about 20 to 30 minutes.
I'd rather have face to face contact and today I was told that when it wouldn't costs a penny a could do that too. Sounds great, but I want my travel costs back, and it also means the hospital should give me a room to talk with patients. The way the hospital is functioning now I don't think there are rooms available.
one wing is completely demolished and is ready for rebuilding. So whole departments are moved around.

Had some fun with the dog of a colleague. It's a service dog,but when her jacket is off, she's allowed to play. A few years ago I would have been afraid, but now not anymore and it's great to have some fun with such a huge dog.

This added to my blood pressure going down.... so somewhere between the end of the meeting and the end of shopping I lost one of my most loved ring.
My fingers are much thinner suddenly.... so it just slipped of my finger.
I feel sad about it.

I've always brought back things I've found, so maybe...maybe....
Went back to the conference room: nothing, toilet... nothing. Street...noop.
Mailed the shops and posted it on the council site.

Strange the ring got lost on Valentine's Day.... No, it's not a wedding ring.



A better day

2/12/2018 Syl's bucketlist 0 Comments

When I went to bed last night.... when I planned to go to bed...I found the washing machine had a problem. Knowing I wouldn't be able to sleep with that knowledge I decided to try and fix the problem.
It wasn't pumping at all, so I suspected some dirt in the pump. But nothing was found.

Trying the thing... nothing. Doing something and trying again, nothing.
Maybe a sock in the hose? Otherwise I needed the repairman and it costs such a lot of money I'd better wash by hand and hang it in the garden to leak and dry....

Before getting the hose open I tried the machine again and flushed the toilet when it should start to pump, to give a different pressure in the hose.
It worked!!!!

Went to bed far, far too late, but I had some sleep.

Today I felt a bit better than yesterday. Blood pressure was a bit down.. not much, but at least some symptoms disappeared.

Managed to write 1 article and almost finish another.
Made a decision to limit some of my volunteer work. New tasks are on my desk soon, but I can't do it all.



Present disaster

2/11/2018 Syl's bucketlist 1 Comments

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.



Appointment with new cardiologist

2/07/2018 Syl's bucketlist 0 Comments

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.


The wreaths

2/06/2018 Syl's bucketlist 0 Comments

The wreaths

When you held my hand
and we walked
past the wreaths,
I didn't dare to look
nor understand
until I was old enough
to run through fields of poppies
and celebrate the freedom
in the sun
without the loaded planes
the fears and silence
of all the young men
of whom so few returned

Year after year
the stories were told 
gram, you, my uncles,
the teacher at school,
and later 
Aunty Cathy, Ron,
and all those names
on endless rows of graves
that shouted pain and past
through eternal sky

The failure of man
to live in peace.

And now so many voices have gone silent
the uniforms untouched
the medals lost or sold
like they have no meaning anymore
my soul sees
your belongings in your drawer
which are all gone
and so are you.

I am not shy anymore,
none keeps my hand safe, 
nor my heart.
My eyes reach the horizon
and I still don't understand
the silent cries of all the people
all those who lie there and all those
who stayed at their homes and wept

But one by one
I see those wreaths
the poppies oh so red
that surround the messages 
and sometimes just a name

I hear the trumpet
and the weight of the short silence
and greet those
who keep our lives
in their buried hands.

 ©Syl 2018



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