Sunday, June 23, 2013

Heart ultrasound and....


I went to the heart ultrasound without any expectations of good findings.
I knew by then there would be probably be a valve problem, perhaps even a contractibility problem.

It worried me a bit that I had to lay on my left side during the examination.
Up till then it had been a problem when I would be on my left side for longer than a few minutes.
The woman told me to signal that I had to sit up.

She started the examination by not allowing me to have a look at the monitor.
That bothered me a lot, as I want to know things at the same time as someone else does.
It´s my body...

But soon I realised she found a valve problem by the place she kept reviewing the anatomy and by the way she kept measuring what she saw.
I didn´t dare to move, nor ask to sit up.

Then she said there was no need to be frightened by the sounds which would follow.
Well, I welcomed them as I know the sounds of the heart very well.

All I heart was an enorumously leaking valve and a woosh that indicates a very weakened side of the heart.
It almost took my breath.
"Well, that´s a leaking valve for sure", I said.
She asked me to keep lying down even if it would be difficult.

Someone came in and left.

I was not allowed to sit up, and my breathing problems increased.

"I need to finish these measurements", she said.

Then I was allowed to sit up and I immediately looked at the screen.
All I saw was a very thin side of the heart and a valve that closed about half.

"Are you OK if I call your doctor in"?
Ofcourse I was.

He came, sat on the bed with me and looked at me.
I just looked back.
"You know?"
"Yes, I saw it and heard the enormous leakage."

"It's very bad. The valve is not closing at all, and the side is thin as paper. Your heart pmps 15% at most.
I want to admit you."

"Hmm... can I fo home and tell my autistic son and fetch my things.?"
"When will you be back?"
"Hmm...7 o'çlock?"
"no".
He smiled...I knew.
"OK, 6"
"No".
"Can't make it back at 5...so I'll stay."

"I've already arrabged a bed, so let's go there."

I was allowed to dress myself and walk to a bench.
It was about 5 steps away.
I could hardly get breath, but managed with all my energy to get there and sit down.
When I looked up he was standing near me looking at me.

One of my daughters walked in.
" I have to be admitted now. call the rest, please", was all I could say.

He was called and told the echopgraphist to bring me to the department as ony she knew what was the matter and could innform, others when something happened on our way there.
I didn't even protest when I was told to sit in the wheelchair.



More tomorrow.


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First visit to cardiologist


When finally the day arrived I could see a cardiologist I felt a bit better because the pneumonia had gone, but I was far too fast very tired. I had difficulty breathing and because of that was on the list for a CT scan of the lungs.

I arrived half an hour early for my appointment, but the assistant asked me in anyway.
She said there was no need to make an ECG, as the former one was just a little while ago.
I asked to do it again, as I was ill when it was made and I hoped it to be improved.

She said I needed the whole standard assessment, including length and weight, but I didn't mind as long as I got an ECG.

It turned out to be exactly the same as the former one, so I knew something was terribly wrong.

I had to wait for the cardiologist and expected to wait for half an hour, so took a paper from my bag and a pencil and started to draw.
I can't draw well, but sometimes I just try to get my mind away from worrying. So it seemed very appropriate at the moment.
No need to phantisize about what was going on when a cardiologist was on his way to explain to me.

Quite a while earlier than expected he stepped into the room.
He saw me drawing and smiled.
I smiled back and said that there was no need to study what was on the paper, because I can't draw at all. I just needed to kill time in a creative way.

It just clicked between us.
I don't know why.
Maybe because he looked very much like one of our chinese friends in Amsterdam.
Maybe my mala did the trick, as it does more often between like minded.

He gently told me that something was wrong with my heart and he wanted to do an advanced heart echo, followed by a 24 hours holter, which is an heart monitor one carries around as a very small box.
He didn't want to speculate, just go through the process step by step, if I could agree.
I could.
He told me I was not allowed to engage in any sports of intensive bodily movements. My heart rate was far too high, in the dangerous zone. I would place my life at risk.

He also asked if I could agree with him being my cardiologist.
I said that the challenge would ne on his part by having me as a patiënt.
We laughed and parted with a good feeling, even though I now knew for sure something serious was the matter.













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Livin' on a Prayer



1) This song tells the tale of Tommy, who works on the docks, and Gina, who works in a diner. Where do you work?

After what has happened the past weeks I'm not alloweed to work at all.

2) Jon Bon Jovi has said that he and Frank Sinatra are distant relatives. Tell us about one of your relatives.

The famous Erasmus is part of our family tree.

3) Jon and his high school sweetheart tied the knot in Vegas at the Graceland Wedding Chapel, and they remain married today. When you were in school, who did you fantasize about marrying? Where is that person today?

I was engaged to be married, but he went to study at another part of the country, so we hardly saw each other.
We broke up.
He married with a woman with many musical qualities. he lived now in the north of the country. he took over the business of his brother after the wonderful guy sadly died far too young.

4) The Jon Bon Jovi Soul Foundation is devoted to supplying local food pantries and helping rebuild neighborhoods hit by natural disasters. Here's your opportunity to give a shameless plug to a charity you support.

I'm collecting money for an autism house annex caretaker's house.

5) Jon is often complimented on his hair. What's the most recent compliment you've received?

That O look so young the doc thought I had small children.

6) Everyone talks about their favorite vacation spots. But, since Sam is crazy, she wants to hear about a place you visited that you wish never to return to.

Can't be of help. Sorry.

7) When was the last time you played cards with an actual deck (as opposed to on your computer)? What game was it?

I hate playing cards, so I can't answer the question. But I was aksed to play cards just a week ago by an old man in hospital.

8) Do you bite your nails?

No. Inless one breaks and leaves a sharp edge.

9) Where are you as you answer these 9 questions? What's the view from where you sit?

In a corner between bookcases. On the shelf above the computer a small gnome is hanging, and a felt star. At the desk is a buddha statue, a prayer wheel and a few nice stones. And my glasses.


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Thursday, June 20, 2013

I'm back!!!


I'm back!!!

With a lot to tell and the hope I'm able to tell it all.


It started a while ago.

I wasn't feeling well, had problems breathing and felt I had to prepare my autistic son for living in a protected environment outside home.
The last is almost impossible after the whole caresystem has changed due to the recession, but the whole idea of having to take care of him untill my death frightnened me to bits. I assumed that would be untill my 80ties and I saw myself repeating every daily activity year after year in the same way, without any change than his beard getting grey and I growing a terrible curved back.
On the other hand I worried about him being left alone when i wouldn't be on this earth anymore.

I was tired of fighting all those people who know everything so well about the lives of others without being able to manage their own, and seeing even uglier fights in the near future.
Ofcourse I have my friends, but I felt alone for some strange reason.

Then I got pneumonia, which was rather nasty and more troubling then the 5 times I've had it before.
It was like something had taken my breath away and left me like a night candle, trying to stay on.. barely.

When the antibiotics were gone I still felt ill.
My doc send me to hospital for a bloodtest to see of there was still an infection.
The nurse said I would get his call in about an hour, but it took him all afternoon so I assumed he had to speak to the lungspecialist.
I was right.

She wanted to see me. I would get a mail the next day which would tell me when to call for an appointment.
It came the next morning, thursday, and stated the department would have the paperwork ready on monday after 14.00 o'clock so I could call after that.
Then the phone rang: I had to be there on monday.

She showed me the x-ray with the pneumonia and a lot more that was ugly, listened to my lungs and told me she thought I had a lung embolism.
I smiled. Told her I didn't have one, but that something else was seriously wrong and went on trying to breathe.

Then I got paperwork and was ordered to have bloods taken and to have an ECG.
I had to walk through a large part of the hospital, even had to go back because the secretary had mixed up names, and could hardly make it to the ECG.

To my surprise I got the transcript straight with me including a computerized diagnosis and it scared the hell out of me. I sat down, wrote it all down and handed the transcript over to the doc.

She told me I didn't have a lung embolism and was allowed to go home, but with a referral to the cardiologist.
It looked like something was wrong.

I had to wait 6 weeks before I got an appointment.
By then I had deteriorated badly, could hardly walk, had difficulty breathing every day for hours on end.



More tomorrow.














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Tuesday, June 4, 2013

quick message

Laane is in the hospital with severe heart problems.
In case you want to mail her, just comment here and I'll send her the message or ask for my mail.

Her Daughter.
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