Syl's Bucketlist: medical

Showing posts with label medical. Show all posts

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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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 butchers...eh 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.

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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.

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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.

My favorite job is to teach medical students.
Used to do it in the past as part of the staff, and now I do it as volunteer. (With the hope of getting a paying job.)

This morning was special as the accompanying cardiologist was the one who will be my cardiologist after switching hospitals. I still doubt it a little bit, because I's rather want him to be a member of my friend's list.

He caught me kind of off guard when he asked me how I was and stood there waiting for an answer. I wanted to be honest and tell him I'm not feeling OK and I started messing with my medication, but it was neither the place nor the time to discuss matters so I said 'good'. He studied my face and I made a joke.
Oh boy, someone really interested in how I was doing!

The students were great!! Had good questions, humor and were able to ask questions beside those they'd prepared.
They decided to stretch the lesson a bit longer.
A colleague came at the glass door, gesturing time was up, but we all had a laugh and we went on.

On my way back one of the students walked with me, and I felt so at home I could have stayed all day.

But my son was already waiting in the car. We went to a second hand shop where he found two great items he needed, and I found two lovely mugs, one for my daughter and one for me. Also found the small basket which was the reason to visit the shop. I have a huge hook near the front door and had a small basket there for years, all birds knew. It was completely worn out. So now I have one again.
I also found a wonderful scarf, I'm going to wear tomorrow and two other funny items. All together for jut a few euros.

The rest of the day I was far too tired to do anything, which was not good, as tomorrow the room needs to be at least a bit tidy.
But cleared part of the attic, as space is needed for the heating repair man tomorrow.
And cleaned half the fridge.

After dinner alone I suddenly fell asleep.

Wish I would have my energy back!!

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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.

The past days I've been thinking a lot about the implications of the renal insufficiency.
If it's really as serious I might be on dialysis within a few months.
Dialysis is not very well tolerated by my heart, so I will deteriorate fast.
And when it happens there's no escape this time.

It makes me feel sad and a bit depressed.
I've cared for other people all my life. Worked hard to change things for the better in all sorts of areas: political, medical, educational, etc etc..
I'd expected this time would be a time for me, an opportunity to travel, have fun, to live life to the fullest and move to a little house near the sea, or even move to little house in the UK.
Instead I have to juggle with money and can't even go to town here or get groceries across the border.
It's so sad.

Today a friend fetched me to drink a cuppa in town in his favorite coffee bar.
It was a nice little shop, right near the HQ of the paper I used to run, so I even enjoyed the ride, seeing all those well known places.
The coffee was great.

We talked a lot about the problems we're facing. He's got serious heart problems too.
Gave each other advice.

Telling out loud, what I'm facing, makes it even more real than it has been the past days.
I'm feeling a strong inner feel of wanting to speed my life up, as if I don't have enough time.
At home I want to clean and tidy things, like I want to make the house prepared to be without me.
And I'm starting to feel tired, tired of fighting too.

At the same time I want things to go on the way they are.
So I've accepted an invitation for public speaking for family physicians and one for heart patients at the same day at some kind of information day at a hospital.

It's strange to experience all those extremes of feelings.

For the second time in my life I was asked if I ever find some rest.

The first time was long ago, when a dear friend asked where I had my inner home, by whom I could find it. I didn't have an answer.

Now I had an answer: I find it when I walk near the sea (that's why I want to live there) and I find it with my friend in Belgium.
But when I was at home, alone again, I realized that it's not only about finding rest. When it's about resting my head on another shoulder... there is none.

That's even more reason to move to sea....

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When you smile...there's something good in it, isn't it?

I feel like I'm on a sliding slope.

When I was in hospital waiting for the morning or death, I didn't feel like this at all.
I had the feeling all was about attitude and inner peace. I got that. Didn't feel dependent on anything. Just being in the hands of life, of nature, and with the request to the nurses to place my bed under the trees and stars outside so I could die there, I was at rest.
If I hadn't survived it would have been OK too.

Now I feel like the frightened kid, standing on top of a slide that's far too high, far too steep, and at the bottom is nothing soft to land on, but those horrible hard concrete tiles. And no one is waiting there, no hands stretched out to catch me. No smile to make me smile back and give me some confidence.
Because ...when you smile...there's something good in it, isn't it?

A few days ago I got such a swollen envelope, it was like the ego of nephrology as shining through.
I had to redo the bloodwork, which is done a week ago in the same hospital. Do a test that will certainly lead to the wrong interpretation, and a test I have no time for at all.

I've been thinking, weighing, balancing the protocol with my wishes, balancing the protocol with my needs, thinking what would be more efficient and cost effective, balancing the causes of the kidney insufficiency with the way they want to go about.

The conclusion was clear: I have to go their way, but hell I want it to go the way I want.
It's better to die fighting, then to die passively depending on a system that stinks.
Oh yes it does.

For the past years I've asking myself and others why all the focus of money and research is on a mobile kidney for people who have a deplorable kidney function, and almost nothing is invested in prevention of kidney deterioration.
What do we know? Live healthy and follow a diet.

When my body was shutting down because my heart gave up, a lot of damage was done.
I know, because my muscles have never been the same.
I got a large amount of medication to keep me alive. The cardiologist told me we would review them at the end of my first survival year, to prevent over-medication.
Suddenly he moved to another hospital. Too far to follow him.
I landed on the desk of a cardiologist who told me, when I asked for a review, that he 'didn't dare' to change the medication!
When I asked him about the deterioration of the kidney function he said it was a normal thing. 'Quite acceptable'.

Then it dropped below 'quite acceptable' and he ignored me.
My family doctor worried and consulted a nephrologist. He said that the problem was probably due to the hot weather.!!! I was fed up by the whole todo.
Adjusted my diet a bit more.

I asked to adjust my cardio-medication about a hundred times, kidney function was dropping and dropping.
Then the bargaining started: 'When you don't trust it, why not try diminishing the medication in the controlled setting of the hospital?' I was treated like a small child who was not able to understand what was going on, so I didn't even get proper information about the condition of my heart.
But as far as I know it gradually improved.

My complaints...might be called symptoms by those who care, multiplied.
The doctor/student of internal medicine I was referred to didn't listen to me, but gazed and drowned in the beautiful eyes of his assistant 3/4 of the time. His conclusion: no underlying illnesses and nothing to be expected.
Findings: cysts in a kidney, fatty liver (I don't drink alcohol at all!), and far too high vitamin B6, and Folic Acid. I've used the last two for years after I was diagnosed with an amino-acid metabolic disease. Never before I've had a surplus.

Luckily I knew that a surplus can hide deficiencies of other vitamins.
So I lowered the dosage and: vitamin D deficiency, vitamin B12 deficiency, magnesium deficiency appeared. As expected. Vit b12 is depleted in about 30% of users of Metformin.
I started to take supplements. The deficiencies slowly normalized.

But why, after 20+ years without any problems would I have deficiencies? The kidneys? The heart-medication? Both?

The deterioration of the kidney function went on.
Gradually I developed all kinds of symptoms.

Numb toes...reaction: due to diabetes. (Might also have been due to Vit D or B12 deficiency, etc.)
Itchy skin
Clouded brain
Hazy vision
Muscle cramps
Blue spots
Insomnia
Vague pain in my back at the height of the kidneys
Crumbling and splitting nails
Dizziness
Nausea
Lack of hunger
Muscle problems varying from weakness to fast tiring and pain with movement.

And then there was a blood test with results that prompted immediate action to refer me to nephrology.

I informed the cardio-nurse, who wished me the best... which was in complete contrast to the kindness I'd experienced before.

Through all the past years there's 1 item bugging me:
Kidney problems started later than the heart-problems.
Might they be caused by the cardio-medication?

So do we stick our heads in the sand and only do some problem solving, like adjusting the diet just that absolute marginally bit, and prepare for dialysis?
Or do we stick heads together and adjust the cardio-medication and monitor kidney function and heart very well, get well informed about the choices in case dialysis is on the horizon and built a trusting relationship. because I'm completely fed up by doctors who want to fill their wallets and ego-bubble far more than my files with good results.

So I'm not going the way of the standard protocol.
I'm not going to jump on the slide.

I'll ask for a meeting with a good nephrologist, who has knowledge about nephro-toxicology and who can deal with my cardiologist or another one who wants this case.

Maybe I'm clinging on the railing for a bit more time to be normal.
Maybe I'm waiting for someone to remove the concrete landing, and ..yes...I'm waiting for those two hands to catch me.

After I mailed my own doc with the plans, I knew he would shake his head.
He likes protocol far more than creativity, and I understand that.

But I'm standing right in front of a prognosis with a death sentence, and it's OK for them, because it's the way they earn their money.
I first want to have a close look if I should stay here, see if we can alter things on this end, before I take the slide.

Let's see if changing the cause can change the outcome.
I want to know that I've done all I could.

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