Re: high bladder pressure/kidneys

[Guest guest]

Hi-

I am by no means an expert on kidney disease but my TC son developed high

bladder pressures after years of cathing (possibly inadequate cathing). He had

to have a bladder augmentation this summer, which enlarged his bladder to reduce

pressure in an effort to maintain his native kidneys as long as possible. I

think the smaller the holding capacity of the bladder (neurogenic bladders

typically have thicker walls), the bigger chance the urine will reflux to

kidneys. He has a urodynamic study scheduled for late December and we'll see

where the pressures are.

re: rhe question posed by stvtm--He was diagnosed with stage 3 kidney disease a

year ago, but the high bladder pressures were first noted in June 08.

It's a whole new frontier for us, and the immediate concern. Never mind that we

learned at the same time he'd been retethered for almost ten years (no one told

us, apparently). Tethered cord for now is not the priority, believe it or not.

Yleana in Boston

[Guest guest]

Thanks Yleana. That sounds like the kidney disease was diagnosed about a year

after the high pressures. Thats not that long of time. How do they diagnose

stage 3 kidney disease and what does that mean?

Were his kidneys normal when the high pressures were first diagnosed. I have

about no bladder capacatiy (50-60cc) with very high pressures. I am pretty much

in shock over everything, just recently found out about the TC and have not had

surgery yet. Not even sure I should and it won't improve bladder situation. So

far ultrasound does not show hydronephrosis, but I have been told the high

pressures are probably already damaging kidneys. Not sure what to do.

Thanks,

>

> Hi-

> I am by no means an expert on kidney disease but my TC son developed high

bladder pressures after years of cathing (possibly inadequate cathing). He had

to have a bladder augmentation this summer, which enlarged his bladder to reduce

pressure in an effort to maintain his native kidneys as long as possible. I

think the smaller the holding capacity of the bladder (neurogenic bladders

typically have thicker walls), the bigger chance the urine will reflux to

kidneys. He has a urodynamic study scheduled for late December and we'll see

where the pressures are.

>

> re: rhe question posed by stvtm--He was diagnosed with stage 3 kidney disease

a year ago, but the high bladder pressures were first noted in June 08.

>

> It's a whole new frontier for us, and the immediate concern. Never mind that

we learned at the same time he'd been retethered for almost ten years (no one

told us, apparently). Tethered cord for now is not the priority, believe it or

not.

> Yleana in Boston

>

>

[Guest guest]

I know this probably sounds dumb what exactly is kidney disease. I have had

reflux and I am diganoise with a neuorgenic bladder . My left kidney is not work

so Dec 6 I am going to have it removed.

Subject: Re: high bladder pressure/kidneys

To: tetheredspinalcord

Date: Saturday, November 27, 2010, 8:30 AM

 

Hi-

I am by no means an expert on kidney disease but my TC son developed high

bladder pressures after years of cathing (possibly inadequate cathing). He had

to have a bladder augmentation this summer, which enlarged his bladder to reduce

pressure in an effort to maintain his native kidneys as long as possible. I

think the smaller the holding capacity of the bladder (neurogenic bladders

typically have thicker walls), the bigger chance the urine will reflux to

kidneys. He has a urodynamic study scheduled for late December and we'll see

where the pressures are.

re: rhe question posed by stvtm--He was diagnosed with stage 3 kidney disease a

year ago, but the high bladder pressures were first noted in June 08.

It's a whole new frontier for us, and the immediate concern. Never mind that we

learned at the same time he'd been retethered for almost ten years (no one told

us, apparently). Tethered cord for now is not the priority, believe it or not.

Yleana in Boston

[Guest guest]

Usually it is based on your blood levels of BUN and Creatinine. In other words

how well or not well your kidneys are filtering the wastes from your body. If

you are having a kidney removed, you have it.

Subject: Re: high bladder pressure/kidneys

To: tetheredspinalcord

Date: Saturday, November 27, 2010, 8:30 AM

 

Hi-

I am by no means an expert on kidney disease but my TC son developed high

bladder pressures after years of cathing (possibly inadequate cathing). He had

to have a bladder augmentation this summer, which enlarged his bladder to reduce

pressure in an effort to maintain his native kidneys as long as possible. I

think the smaller the holding capacity of the bladder (neurogenic bladders

typically have thicker walls), the bigger chance the urine will reflux to

kidneys. He has a urodynamic study scheduled for late December and we'll see

where the pressures are.

re: rhe question posed by stvtm--He was diagnosed with stage 3 kidney disease a

year ago, but the high bladder pressures were first noted in June 08.

It's a whole new frontier for us, and the immediate concern. Never mind that we

learned at the same time he'd been retethered for almost ten years (no one told

us, apparently). Tethered cord for now is not the priority, believe it or not.

Yleana in Boston

[Guest guest]

Hi Yleana,

This is what they possibly go to do it is called " Bladder augmentation "

ofcourse it is a gues of me.

example

The bladder can not store more urine by a muscle damage caused by to fast

overfilling of the bladder or by an uncontrollable contraction of bladder

reflex. for increasing the volume of the bladder most used technique.

How

A small or larger piece of intestine is used that is connected to the

circulation.

In the bladder are two incisions made in which the bowel is attached (cup

shaped) so that the bladder capacity is increased and it can store more

urine.

It is sometimes used because the acidity has bad effect on bacterial growth

in the reconstructed bladder.

They use use intestine because urine can make a acid reaction on the

stomach tissue.

Problems like urine is going back to the kidney possibly solved so is can

make any damage anymore

Re: high bladder pressure/kidneys

> Hi-

> I am by no means an expert on kidney disease but my TC son developed high

> bladder pressures after years of cathing (possibly inadequate cathing). He

> had to have a bladder augmentation this summer, which enlarged his bladder

> to reduce pressure in an effort to maintain his native kidneys as long as

> possible. I think the smaller the holding capacity of the bladder

> (neurogenic bladders typically have thicker walls), the bigger chance the

> urine will reflux to kidneys. He has a urodynamic study scheduled for late

> December and we'll see where the pressures are.

>

> re: rhe question posed by stvtm--He was diagnosed with stage 3 kidney

> disease a year ago, but the high bladder pressures were first noted in

> June 08.

>

> It's a whole new frontier for us, and the immediate concern. Never mind

> that we learned at the same time he'd been retethered for almost ten years

> (no one told us, apparently). Tethered cord for now is not the priority,

> believe it or not.

> Yleana in Boston

>

>

[Guest guest]

Hello all-- this is gonna be long...

, I am sure you are in shock to discover this, on top of tethered cord.

It's all too much to take on at once but you'll get through it. Best of luck

with it.

How we learned about the kidney thing: After at least a decade of 'everything's

fine,' my son's urologist noticed an upward creep in bladder pressures three

years ago. In June 08 he recommended overnight catheterization via foley, but my

son fought it tooth and nail. Needless to say, the bladder pressures did not

improve. At first he said do overnight cathing for three months, that went on

for a year, then for another year. Nobody ever ever told us outright, this is an

indication of reduced kidney function. And we were so obsessed with the bladder

that we never suggested to the doctors that they test for kidney problems. And

the test? A simple blood draw that tells you levels of creatinine and other

factors.

Believe it or not, it was the technicians conducting the urodynamic studies who

noticed his blood pressure readings were high, and they suggested we see a

nephrologist who specialized in hypertension. In the meantime, he had botox

injections to help with bladder pressures in Oct. 09. We were told that bladder

augmentation was a certainty, but didn't want to take him out of school. He had

bladder augmentation less than week after high school graduation. The entire

summer was devoted to his recovery, and he indeed left to college this August.

Since the blad aug surgery he has had only ultrasounds which showed there was no

leaking of the bladder. He has a Urodynamic study schedule before Christmas and

we will learn then if the bladder pressures have indeed lowered.

We took him to see the hypertension specialist who had blood drawn. We learned

on the spot that his creatinine levels were already up in the 3-point range: a

sure sign of kidney disease, and that he had hypertension. The nephrologist

reminded us hypertension is 'the silent killer:' it damages the kidneys, and

damaged kidneys contribute to hypertension. You don't feel a thing as it's

happening.

But despite this, my son is currently only on medication for hypertension, but

also takes iron, Vitamin C and D, and sodium bicarbonate. This is going to be a

helluva ride. It hurts me to think of it; I can't imagine what he feels, but

being a teenaged male he doesn't share his feelings with me.

If you think tethered cord is complex, kidney disease is incredibly complicated

and a real mind-whacker. I think if your creatinine reads above

1-point-something, you are considered to have CKD (chronic kidney disease), as

kidneys never heal. A damaged kidney is damaged for good. The creatinine points

correspond to the level of disease, such as stage one, two, three, etc., and

stage five is considered renal failure.

I feel deep down inside that the damage to the kidneys was happening at the same

time his blood and bladder pressures were high. But no one ever suggested

looking into it for two years. Aaargh! Then again, when he was born with

tethered cord and neurogenic bladder, we were told that kidney disease was a

possibility. And now he will need a transplant.

If you have no hydronephresis, consider yourself extremely lucky! That (and mild

reflux) was picked up on ultrasounds, but no one ever said, better go see a

kidney doctor. Perhaps on some level it is not related.

Pamela, neurogenic bladder is pretty common with TC, and there are other options

for reflux (such a ureter re-implantation). But people live forever with just

one kidney.

I have no idea at what point one is diagnosed with " kidney disease. "

Thanksgiving is over and I'm driving him back to school today. Good luck

everybody and thanks for letting me go on and on about all this.

[Guest guest]

Doctors actually telling you what is going on when you have medical problem?

Very rarely happens like it should.

Sent via BlackBerry by AT & T

Re: high bladder pressure/kidneys

Hello all-- this is gonna be long...

, I am sure you are in shock to discover this, on top of tethered cord.

It's all too much to take on at once but you'll get through it. Best of luck

with it.

How we learned about the kidney thing: After at least a decade of 'everything's

fine,' my son's urologist noticed an upward creep in bladder pressures three

years ago. In June 08 he recommended overnight catheterization via foley, but my

son fought it tooth and nail. Needless to say, the bladder pressures did not

improve. At first he said do overnight cathing for three months, that went on

for a year, then for another year. Nobody ever ever told us outright, this is an

indication of reduced kidney function. And we were so obsessed with the bladder

that we never suggested to the doctors that they test for kidney problems. And

the test? A simple blood draw that tells you levels of creatinine and other

factors.

Believe it or not, it was the technicians conducting the urodynamic studies who

noticed his blood pressure readings were high, and they suggested we see a

nephrologist who specialized in hypertension. In the meantime, he had botox

injections to help with bladder pressures in Oct. 09. We were told that bladder

augmentation was a certainty, but didn't want to take him out of school. He had

bladder augmentation less than week after high school graduation. The entire

summer was devoted to his recovery, and he indeed left to college this August.

Since the blad aug surgery he has had only ultrasounds which showed there was no

leaking of the bladder. He has a Urodynamic study schedule before Christmas and

we will learn then if the bladder pressures have indeed lowered.

We took him to see the hypertension specialist who had blood drawn. We learned

on the spot that his creatinine levels were already up in the 3-point range: a

sure sign of kidney disease, and that he had hypertension. The nephrologist

reminded us hypertension is 'the silent killer:' it damages the kidneys, and

damaged kidneys contribute to hypertension. You don't feel a thing as it's

happening.

But despite this, my son is currently only on medication for hypertension, but

also takes iron, Vitamin C and D, and sodium bicarbonate. This is going to be a

helluva ride. It hurts me to think of it; I can't imagine what he feels, but

being a teenaged male he doesn't share his feelings with me.

If you think tethered cord is complex, kidney disease is incredibly complicated

and a real mind-whacker. I think if your creatinine reads above

1-point-something, you are considered to have CKD (chronic kidney disease), as

kidneys never heal. A damaged kidney is damaged for good. The creatinine points

correspond to the level of disease, such as stage one, two, three, etc., and

stage five is considered renal failure.

I feel deep down inside that the damage to the kidneys was happening at the same

time his blood and bladder pressures were high. But no one ever suggested

looking into it for two years. Aaargh! Then again, when he was born with

tethered cord and neurogenic bladder, we were told that kidney disease was a

possibility. And now he will need a transplant.

If you have no hydronephresis, consider yourself extremely lucky! That (and mild

reflux) was picked up on ultrasounds, but no one ever said, better go see a

kidney doctor. Perhaps on some level it is not related.

Pamela, neurogenic bladder is pretty common with TC, and there are other options

for reflux (such a ureter re-implantation). But people live forever with just

one kidney.

I have no idea at what point one is diagnosed with " kidney disease. "

Thanksgiving is over and I'm driving him back to school today. Good luck

everybody and thanks for letting me go on and on about all this.

[Guest guest]

, it's a whole other hospital department and medical specialty, but it's

all part of the " constellation " of TC conditions. (Somebody used that word a

while back and it sure fit.) It certainly can't hurt to get an opinion, good

luck, Y