Syl's Bucketlist: renal insufficiency

Showing posts with label renal insufficiency. Show all posts

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.

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.

So I did the urine collecting a week later.
When I collected the containers I expected one with a liquid or powder and one without. But they were both without.

The first day went OK, the second day my kidneys almost shut down, and as I didn't know if I could take a tablet to keep them going I took nothing. Maybe they can find the reason of the shutting down..

Had to pee in a little pot too. Pity...just a few drops. I was afraid they would tell me in the hospital it was not enough, but the nurse didn't even look at it.
She did the paperwork, and that was it.

Another nurse took some blood and off I went.

Had my eyes checked so I could order new glasses.
When the woman was ready she told me to come back later in the week. The results were so very much different from last time, she wanted someone else to check them too.
So: new appointment: saturday.

The rest of the day I did some chores, but I felt more and more cloudy in my head.
So at last I cancelled tomorrow.'s going with my son to the movieset.
It will be rather hot and I can't risk getting unwell. There's nothing to hide at the airfield.

In the evening my kidneys started to work again.

Pffff.

Today I started to feel better.
I'm sure it was due to all the well wishes ( ;)).

My head was not as clouded and my muscles could deal with movement longer and with less pain and tiredness.

I think the shock of being at stage 4 already and the realization that I have to choose for dialysis or refusing dialysis, and that it all means that when things won't improve I'm going to die sooner than later is fading.

Refusing treatment is not an option.
Dialysis at home is not an option. Not enough room for the machine and not enough room for the materials.
So the choice is no choice: hemodialysis at the hospital. My hospital provides the option for the night too. So that's good.

And that I feel a bit better helps too. It means things can improve.
Maybe I need to fight a lot less at the moment.

I'm not afraid to die, it's the road... that bothers me. It's that everything is about money and not about care...that bothers me.
And it bothers me that I'm alone.. no shoulder. Oh, I can do it alone. I know that.

But walking.... balancing...the thin line between being OK and depression... keeping watch I don't drop to the wrong side. Depression, self pity, they're so undermining. I can't let them happen to me.
It's a constant battle.

I love to be alone and do my things, but when I'm alone I feel lonely.
It's for a part because I don't feel happy in this house anymore.
And the spirit of: 'I'm going to survive that overall heart prognosis' is challenged a bit too much by the renal diagnosis. And by thee fact that I can sit on the couch and have great plans to clean and tidy and change things and when I stand up I'm so horribly tired.

With everything that needs to be done around me, and only me to do it, it's a vicious circle that needs to be broken.
So I try to do at least 1 thing each day, even if it's only the dishes.
But it doesn't tidy the house...
and it doesn't ease my mind.

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People don't like to read blogs about depression, illness and pain, unless they suffer from the same.
I know that, but I still write about my days, because I think it's important to give an insight what goes on, so people are able to help and support someone to feel better, or live through it too, knowing they're not alone.

No news on the subject of the financial administration. I bugged the organisation that collects the rent to confirm receiving my mail, first by using the regular email account and then I went to the part of the site which is aimed at doing business with homeowners and got a confirmation there. It doesn't mean anything, but I can show I've been busy with them.

Was reading on their site a bit, as they took over the renting out just a month ago, and read we don't have the income to rent in their system. I hope it's for starters. We're in the house over 30 years now.
I want to move but can't find anything I want: a small house near the sea.

Reading this caused a lot of stress.

The past months I've been fighting such a lot, that I'm tired and want some relaxation.
Stress piles up.

This morning my second son came to drive me to the opticien to get my eyes checked.
Before we collected the materials for some tests at the hospital. A cranky nurse gave the stuff.
I've decided to do the urine tests next week. Pity when the results aren't available in time. I couldn't have done it this week.

My eyes aren't checked. There were so many people waiting.
Did some looking around in the shopping center. Found two small books. The covers are of the same fabric and colours as my fabric backpacks. Kind of mexican or peruvian weaving.
Something nice for myself...need that.

Then we went home and when we wanted to leave the car the motor wouldn't stop!!!
My son was completely stressed out, and I played calm.
He managed to stop it after all, and immediately called the friend who is the mechanic.

We need the car this weekend. One of my daughters has to work odd hours at a village that can't be reached by bus in the weekend. And my son needs to go to the airport where they do parachute jumps. This weekend is very important, because they'll work on a movie.

I was glad my second daughter was visiting. She's a very calming person, lots of smiles, and lots to tell. We had a nice time.

In the evening I looked for information about what I can expect from the nephrologist and the preparations for dialysis.

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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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