Showing posts with label kidney insufficiency. Show all posts

Appointment with new cardiologist





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.

Decision nephrologist


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.

Gone and back



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.

So I try



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.


.

Intense afternoon



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....

.

Entering the world of nephrology.

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.

.

No letter



I expected a letter from the hospital, but alas. Nothing. Not from cardiology, not from nephrology.

The heartmedication I take is complete again. So my bloodpressure is within limits, but the pruritis has started again. The muscle weakness too.That indicates that the heartmedication is the main problem for my kidneys.
I knew that already, but this is very clear evidence.

It's strange that there is not another system  used than letting a patient wait the whole waitinglist and then have a nephrologist see him or her.

In my case, I would have appreciated a consultation with someone who reviews my medication on the subject of nephrotoxicity. It might result in prevention of further deterioration.
If they had done this 4 years ago, like my first cardiologist planned, I wouldn't have had kidney insufficiency.

Started reading about the present issue. It's like they have a far more intelligent approach in Belgium than here. They are aware that prevention is very important, and that early information leads to a better outcome of dialysis.

Well, I'm lucky I can inform myself. But when the medical world won't cooperate...?

Had a nice dinner with one of the girls, the dancer, who came home for a few hours.

This evening the international summerfestival has started. Lots of open air concerts. I love to go there, and I planned to go there. But I'm not so confident I can cope with standing and walking a lot.
Well, we'll see.

.

And now.....wait



So our family doctor considered taking care of the kidney problems a matter of urgency.
But the hospital?

As far as I can see in the system it'll take 17 days before an appointment.
17 days!!!!

When waiting to be seen by the cardiologist the waiting time would have resulted in death wouldn't I not have been in hospital. I was lucky then.

And now?

To prevent problems I skipped part of my medication.
The cardiologist told me not to do so. Last time he told me I was irresponsible, but I had to take action because I knew I couldn't reach the hospital for proper care.
This time I mailed my cardiology nurse. I guess she's on vacation, because I didn't get a response. But it's equally possible she ha informed him and he didn't reply.

I skipped the medication I thought would be available in the body now it's not cleared by the kidneys. My bloodpressure was still rather low, so no harm done.
If the kidneys had caused high blood pressure I wouldn't have taken the risk.

I also skipped the vitamins I have to use for a metabolic disease (I can do without them for a day) and those I'm taking against existing deficiency. (The deficiency has been worse anyway.), skipped all salt and protein in my food, and drank only water.

During the day my brainfog cleared a bit, which seemed to be positive.
Only late in the evening the blood pressure started to rise a bit. So maybe that means some of the medication or its associated toxins are less burdening the body, and I need to restart medication?

Being on a waitinglist is being between doctors.
The urgency my own doctor experienced and which resulted in swift action, seems to be a thing of the past.
It's like none is bothered, but a few caring friends.
It's like reaching out from the water, but none on firm ground sees my hand.
When they bother it might be too late.
Or maybe we've bothered too much and all has normalized by the time a nephrologist sees me. And which kidneydoctor will I get?
And do I need to stay in hospital?
Do I need to make a choice for dialysis and other treatment options?

Will I be lucky and escape all problems?

Far more questions arise than I have answers.

We'll see.

My first reaction to CKD4



When my doc contacted me with the blood results I wasn't surprised.
All the symptoms already made me think about kidney problems, but I didn't expect it to be as serious as the blood results suggest.

I was surprised my doc didn't wait until the next day to contact the hospital. Within an hour I got confirmation that they had received his mail and I got a registration number.

I'm still feeling disbelief, the alienation of a huge shock. Part because I thought to have enough time to make decisions. But when I draw the line of deterioration I'll be on dialysis within a few months. So I have to turn the odds.
But how?

A diet? I already have many restrictions: salt, sugar, proteins, and I'm allergic to some vegetables.
I also try to drink between 1,5 and 2 liters a day.
So what's next?

The only option I see to change risk is adjusting my heartmedication.
It's like what I told my present cardiologist: It's about balance. When my heart is rotten, I won't get a kidney transplant or dialysis, when my kidney is rotten my heart will suffer and I certainly won't get any advanced therapy.
So he saved my heart and destroyed my kidneys.

And that makes me soooo mad!
Because I warned him over and over again and he just didn't listen.
He just didn't care at all. Why? His ego? Old age? Is he a routine monster and doesn't think about the consequences of his prescriptions?

My first cardiologist saved my life and really cared about me.
This guy didn't even bother to read the files. I had to tell him my heart was overall dilated, not only at the left, and that all valves were leaking. he was using my echo-movie at an information afternoon in the hospital, but I doubt if he knew it was, or he didn't care, assuming I wouldn't notice.
When I had one of the most important echo's he didn't even bother to have a good look at the results, let alone show the images or the movie.. he closed the files and said the echo was 'good'. And when I ridiculed that in that case I could throw my medication away he had the fright of his life. LOL! Then he explained he meant 'no deterioration'.
Well, it's not good now.
So I've mailed my cardiology nurse and told her to look at the blood results. She'll know what to do. :) Wish I could see her face when confronting him. But maybe he won't bother. It's kidneys.
Or maybe he calls me tomorrow... he loves to call his patients. Well I hate callers who don't show their numbers.

I wonder what's next.
Will I be lucky and will things improve? I've decided to skip part of my nighttime medication, the part which includes some heart medication and vitamins. My priority lies in improving the kidney function, not in treating vitamin deficiencies caused by other pills.

But the exception is vitamin D.
The kidney transforms inactive vitamin D in an active form that is necessary to get firm bones. The lack of vitamin D has a huge influence on calcium and phosphate in the body. But even worse. Research of my own university has shown that a vitamin D deficiency leads to kidney damage.
Well, I'm trying to treat a deficiency....

My thoughts are going from the past to the future.

I described to the doctor of internal medicine certain symptoms that are kidney related. He didn't measure kidney function but said I had no underlying disease. Suggesting a between-the-ears-syndrome. He didn't only miss certain vitamin deficiencies, he missed the kidney-connection, while gazing into the beautiful eyes of his female assistant.

Is the yawning a kidney symptom too?

I'm studying palliative care. Am I now one of the people receiving it? The bad tricks of life?

This is so not good.....

Bad news: Stage 4 Chronic Kidney Disease



This morning I felt horrible. I could hardly move around. I was dizzy, my muscles were very weak, there was some dull headache, brainfog,and a lot more was wrong.
My blood pressure was OK, heart rate slightly higher than usual, and the saturation was changing from 94 to 98% and back.
Reviewing everything I expected the problems due to the kidney insufficiency

I always had good kidneys until I started to experience the effects of the heart medication. Maybe by that time the consequences of the heartfailure on my kidneys became apparent, and the nefrotoxic effects of the medication were just building upon it.

Gradually my kidneys became worse, and I wondered if I was suffering from kidney insufficiency. The cardiologist told me I shouldn't worry. It was normal to have some diminished kidney function.
I didn't believe him. Certainly not after I saw a cyst in one of the kidneys, during some routine echo. The man doing the examination said I'd seen it right and suggested that with all the cysts that had been discovered before: ovarium, liver, lungs I might suffer from LAM, but it was ignored by the other doctors.

My own family doctor was willing to keep a close look on my kidneys and after a while agreed something was wrong. He consulted a nephrologist again (another one had said the lower kidneyfunction was due to the hot weather) and this one said that reviewing all the data made her draw the conclusion I had kidney insufficiency already during 3 years. (Still then the cardiologist wouldn't believe it.)

Often I asked for a change of heart medication, but the answer was always 'no'.

Yesterday I went to hospital to get bloodwork done. The physician's assistant filled in the form with quite some tests, yet I wanted her to add kidney- and liver function, and later added a urine test myself.
Good decision.

Already today my doc contacted me to tell me he was very worried about the new results. Kidney function had deteriorated tremendously to eGFR 24/25, which mean stage 4 (out of 5) of Chronic Kidney Disease. It's called pre-dialysis stage here. So not even an hour later he had referred me to the nephrologist

I don't know what's going to happen, but I hope a good review of my medication. I informed my cardiology nurse and told her I wouldn't mind a stay in hospital to get a medication review.

Now I have to wait.



To comment, scroll down.

 .
Subscribe to: Posts (Atom)
Related Posts Plugin for WordPress, Blogger...