Uraemia - CKD/statins

[fixitflav]

I am due the next stage, anytime, which is to have a catheter installed

I'd be nervous about that! Hope things turn out OK

 

[aveatry]

Sounds like classic covd vax injury. You are not alone

 

[Harry Bloomfield]

I'd be nervous about that! Hope things turn out OK

I'm terrified of the idea, but I've already had an appointment with the surgeon, to check me out for the op. They mistakenly arranged that, too early. He claimed to find I had a belly button hernia, I didn't know I had, which he said he would fix, at the same time. The catheter, is just 'leaky' pipe, which coils up in the tissue bordering my belly, the peritoneum, with a connector/plug at the end.

That then connects to a portable machine I have at home (PD), which exchanges fluids over-night, to do the job of my kidneys, a few nights per week. The alternative, was to spend several days/nights per week, in hospital, with cannulas in my arm.

They asked me long ago, which option I preferred, and the PD seemed to offer more freedom

Sounds like classic covd vax injury. You are not alone

What does?

 

[Brigadier]

What does?

To aveatry, many things

 

[motorbiking]

I'd be nervous about that! Hope things turn out OK

The alternative could be pee backing up in to the kidneys, water retention, infection etc.

This is just another way to drain out the pee. I assume harry is talking about a nephrostomy catheter rather than a urinary catheter (up the gentlemen's japs eye)

 

[Highway Man]

The alternative could be pee backing up in to the kidneys, water retention, infection etc.

This is just another way to drain out the pee. I assume harry is talking about a nephrostomy catheter rather than a urinary catheter (up the gentlemen's japs eye)

OMG how horrific

 

[motorbiking]

which bit a tube up your japs eye or a kidney infection?

 

[Harry Bloomfield]

This is just another way to drain out the pee. I assume harry is talking about a nephrostomy catheter rather than a urinary catheter (up the gentlemen's japs eye)

All the catheter will, do, is allow the filtering of my blood, somehow - via the peritoneum, to remove the toxins in my blood, which my ineffective kidneys are unable to remove. The machine pumps the cleansing fluids into my peritoneum, leave it a while, it does what it does, then pumps it back out. The peritoneum, is a layer, like a layer of fat, between your skin, and stomach. It has nothing to do with urination, or peeing.

Nephrostomy - I had to look that up, and no, not that. This is for kidney failure, my kidneys are no longer effective, at filtering the toxins from my blood, and therefore an alternative way needs to be used, to filter my blood. It's called dialysis. They offer one of two methods - peritoneal dialysis, done DIY, at home, as you sleep, or hemodialysis, where you go into hospital and they do it, similar to giving blood, but the blood just goes back in, after filtering. Of course, being keen on DIY....

Once they get around to the op to fit the catheter, once it has healed, I'm told - they will transport Av and I, over to a specialist centre in a hospital in Manchester, put us in a suite for a week, whilst they teach us both to set up, and operate the dialysis machine. They seem to insist that you must live with someone, able to keep an eye on you, and offer some supervision.

As my kidney failure has progressed, more and more of the toxins have remained in my blood. I had connected it, before, but It's those toxins, which have been causing all the weird mental episodes I've been suffering recently. The toxins can affect the brain, but why didn't they warn me to expect this? Why was I left struggling for months, struggling to diagnose it myself?

For each monthly appointment at the moment, they want me to turn up knowing my weight, some home BP readings, a measure of liquids in, and liquid out (urine) over 24 hours.

 

[Harry Bloomfield]

Patient Record, from my yesterdays F2F appointment with the doc...

Under renal doctpor due to CKD-5
He has been informed that the rising urea could be the cause
He has since restarted ezetimibe and bempedoic acid has been added
He is been reviewed monthly
Examination: Looks well, afebrile, normal hydration
Diagnosis: Uraemia
Plan: Patient has already figured out the cause

I like his final line of entry

 

[MNW67]

Patient Record, from my yesterdays F2F appointment with the doc...

Under renal doctpor due to CKD-5
He has been informed that the rising urea could be the cause
He has since restarted ezetimibe and bempedoic acid has been added
He is been reviewed monthly
Examination: Looks well, afebrile, normal hydration
Diagnosis: Uraemia
Plan: Patient has already figured out the cause

I like his final line of entry

I think you've done an amazing job to work this out for yourself.

 

[Old Salt]

Perhaps time for the addition of a medical forum. With Harry’s diy approach we could bypass the GP and start a trend of self diagnosis/healing. Well done Harry and I hope things go well for you. One of my close friends had a kidney transplant years ago and has to be very cautious of their surroundings because of the dangers of infection and the use of drugs to prevent rejection.

 

[Harry Bloomfield]

I think you've done an amazing job to work this out for yourself.

Not entirely by myself. In desperation, I wrote to the Kidney Foundation, listing what seemed to be the result of my symptom gathering, log. One of the members took the time to email me back, with a very similar list of symptoms, that the Uraemia is known to cause.

The worst part of the many episodes, was the simply not knowing what was causing them, and the stress of not knowing was making them worse/last longer. The nightmares/night terrors, are simply weird, they last well beyond waking up, and are frequent.

The last one, last night I woke at 2am, and began looking for an elastic band I had lost somewhere in the bed, or on the floor. I even put the light on to help search for it. The night before, I woke thinking I had fallen asleep with a glass of water in my hand, and had spilt it all over the mattress. I spent ages looking for the glass, until it dawned on me. Another night I woke from a dream, where my car had broken down in a long, unlit tunnel, and I was struggling to find a way out, in complete blackness, using the light from my phone. I woke up, absolutely desperate to find my phone.

I'm lucky that Av, seems to just accept my waking her up, in the middle of the night, without complaint, which is when the episodes usually happen.

 

[Justin Passing]

Given your symptoms, the answer took me about 30 seconds.
That's how long it took to read it at AI. I used Grok.
"Does he have CKD".
All textbook stuff.
The restlessness is from raised adrenaline.
Blood acidosis makes your limbs feel heavy, fks with your brain, and on and on.
It gave explanations of all the other things too.
I find AI is very useful for medical stuff, as others do. Kidneys , as you know, are responsible in part for so much.
Grok and ChatGPT are both good. Keep chatting and they'll keep going - free, and as deep as you want.

Sympathies, no picnic you're going through. Still, sounds like it's addressable.
Yeah, someone should have given you a heads-up.

 

[securespark]

Harry, I'm sorry you're having this crap in your life. Being ill is not fun.

I think you've done amazingly to self diagnose.

Peritoneal Dialysis is a much better option than going into hospital. You do need to be careful to keep the site clean, though, but they'll teach you all about that in Manchester.

I wish you all the best, mate.