Medical stuff

Daughter 2 went to her GP to get things arranged. She took her twinsister with her, and they had a good conversation. They agreed that if there would be a result of the genetial tests of daughter 1, he would refer her too.

Then the same afternoon I had my bloodworks done, and daughter 2 had her appointment with a doctor who would give her the results of the genetics tests done after a muscle biopsy.
She has problems with her muscles. They don't have enough power (I'm having the same issue since childhood and her twinsister too).

1. 
The muscle fibers are not displaying any abnormalities, she said. (I read the result from the lab stating there were some abnormalities found.)

2.
The enzymes which are the result of the actions in the mitochondria show no abnormailities.
(I have seen no labresults from that, and they should be in the files.)

3.

No genetic abnormalities found.
(Which is strange as they were found before. But no answer what created that shift.)

The conversation was bussinesslike.
When I wanted to ask a question she got unkind and impolite.... but I had to ask that question later anyway.

The conversation was without any empathy.
I tried to steer her in giving a perspective for the future but she gave none.

"You have to live with it."

So that means that from the age of 30 on you have to live with artificial feeding, loosing weight gradually to point zero, feeling pain everywhere, sleeping most part of the day and feeling extremely tired the rest of the day.
And her sister, is wasting away, is in a wheelchair!!

I see my daughters of 30 fading away, like 90 year olds....

When I mentioned there would be the option of the R'dam Center of rare diseases she got her mad reaction in her face quickly under control.

Hmmmm...makes me think she is not very sure of her results, otherwise she would agree that would be the next step.

So we went home with very bad feelings.

This consultation lacked empathy and hope.

The next morning I found my labresults.

Someone has been worrking during the night... Thanks!

Things were completely off, which was understandable for me.

I woke up yesterday very nauseated. Lots of pain and stress. 

Left the bus with a high bloodsugar, without having eaten anything. So I got an insulin shot at the busstop. (No one there.) And then I had to walk the rotten walk uphill to the hospital.

So: kidneyfunction lower, and I already have chronic kidney disease... Not that they take care of you here. Nothing. In the other hospital I was regularly seen by a kidney-nurse and the nefrologist and had the dietician do everything she could to create for me a nutricious and responsible diet.

The nefrologist send me to hti hospital to have the specialists under 1 roof, so they could work together.

Nothing happened!!

Well, my kidneyfunction went so low that I also got the dialysis-preparation, (without the shunt).

My diabetes got worse, which was a surprise, as the data should reflect the past months, and I have been very strict, got my good values between the lines for over 94% which is very good. So something there is wrong. Either my sensors, my reader, or the bloodworks itself.

The kidneydisease might cause red blood cells to live less long, which might be the case. As my higher blood sugar levels are from the past days.

My potassium and ureum were too high too. Heart rate sllower than usual. So the kidneys are the issue.

I have an appointment at the end of the month...

Then I went to my appointment for my hand.
No bus stopped near the entrance of the building.
So I took the bus that went to the front of the hospital and walked around it to the back to where I should be.

No footpath...
Had to step beside the barriers and walk in the grass and mud not to walk in front of cars.
No signs..
Had to walk through the pavement ditch... (Lucky it was not raining at the time.)
At the end of the road was a sign!!!!!!!!!!!!!
Walked around a huge area with trees... I could have walked less if there would have been a sign: footpath to....
Then there was a sign...

Got inside and sat down immediately. Pfff....

I had received a long mail with all sorts of at home check in, which is nuts, because you'll never know if you'll be in time at the hospital...
But I don't want to have the online filing system, because it has the same login as the taxes.

So I went to the desk. Got a few questions checking GP and insurance. Still the same.
Then she said in a rather reproaching way: "You are an hour too early."
"Yes, I know. I come from the side of town that can't reach this part of the hospital so I didn't know how much time this would take. It's like we are not welcome."

"Go to waitingroom 14   ....   11."
So I looked for waitingroom 14...
Nowhere a sign "waitingroom"... Just a waitingroom...
So I sat down and thought they would come and look for me when they can't find me, because I am in the building.
Settled for waiting an hour.

Was called in witthin a few minutes.
Nice lady doctor. Checked the story, checked the hand.
Surgery approved.
Some laughs and fun talk.
Done.

Had to wait for the planner.
Was called in witthin 3 minutes.

Had a good time with the planner, after she offered me a date in august, which couldn't be because of the september plans of myself...needing the hand. So I told her about my work and travels, and instead of planning after november, she put me in front of other patients for july 16. So that's very early in the morning. Surgeon: the boss. I have met him before. He did the second opinion of my toe, and I was impressed by his honesty and the way he viewed matters.

She then wanted to make an appointment to remove the stitches, unless there would be dissolvable stitches used. "GP...here by the assistant..?"
"Or I can do it myself."
"Can you? Do you want to?"
"Yes, I can. Yes, I want."
She gave me a kit...

We had a longer talk about her work and we both enjoyed it and then I went on my way back.

Stopped in the waitingroom for a chocodrink and painkillers.

Glad the surgery was approved.

Walked all the way back... with pain!! Grrr.

I arrived at the busstop and the bus was coming. Arrived at the railwaystation and the lovely woman driver had seen me in the first bus and assumed I wanted to go with her, so she waited....
Thank you very much!!

Then went home.... and lightning and thunder started, with rain and hail..
Pfffff.....

. . .

About **Syl

Syl: "Life is a chain of challenges. Sometimes the largest challenges are we ourselves. Facing life, facing others and facing yourself requires either a worryless attitude or plain courage. Most of the time it is dealing with judgement. Maybe life is about getting rid of it."