Who's Had A Kidney Biopsy?

[Australis]

Very long story very short.

One of my kids was given drugs that initiated 'kidney failure' (an antibiotic) when he was one. He's now nearly 21. He's losing protein, but not retaining fluid like he did when it first happened.

Since then it's been a regular, debilitating battle to keep him on an even keel. Mostly he's been good. He gets tired. He has to eat right. No drinking. And so on. As his parents, it's not much fun. He's driving his poor mother up the wall. Doesn't mean to, it's tough being young and ill.

Aaaanyway, we've been to several specialists, and most of them are douches, and the one guy who wasn't died of a heart attack (that really wasn't fair). They all insist on a biopsy, which means sticking a very large needle into kidnys already in a fragile state. That doesn't seem like a good idea. It's not to find new treatment, it seems, more to find out what's going on because he is a statistical anomaly - he should have had a transplant years ago. But his kidneys continue to function well enough, if he's careful, to live a mostly normal life. But we have heard stories of biopsies causing kidneys to deteriorate, and that is the very last thing we want. We need to be more informed, but the specialists seem to have agendas. My wife had to ring the specialist's office today (while the specialist was out) and ask if we can be mailed blood test results that we are yet to hear from them.

What seems to be keeping his health up is a course of Chinese herbs, and for the sceptics, there's a big difference when he doesn't take them, you can tell.

Have you been through something like this? Any thoughts?

 

[Yeoman Randi]

Well, not exactly the same thing, but i did have kidney surgery/biopsy. Two years ago i had to go to the ER because i was in intense abdominal pain for 3 days. I thought it might be my appendix so i finally relented and had the husband take me to the hospital. They did all kinds of poking, prodding and then did a CAT scan. They came back and said they wanted to do it again, only with contrast. I sent my husband home (it was midnight) and at 3 in the morning went back in for another CAT scan, this time with contrast. At 5 am a doctor came in and said, "We can't find out what's causing your pain. And, oh yeah, you have a mass on your kidney. See your doctor about it."

Fast forward to a few months later i went into the hospital for a laparoscopic partial nephrectomy. They biopsied the mass and it turned out not to be cancer. I've since had no problems and my kidney is fine. I know my situation is very different than your son's and i am much older, so it's comparing apples to oranges. All i can say is that i had an excellent doctor that i trusted completely and i'm doing fine.

Sending your son and your family positive vibes and squishy hugs!

 

[Australis]

Thanks, Randi.

Anyone else?

 

[RJDiogenes]

I've had a few kidney stones, but that's completely different.

If your son is able to live a pretty normal life and there's nothing in the way of treatment guidance that a biopsy can provide, then it's an unnecessary test. Is there any other rationale for the biopsy? Is he getting worse? Do they anticipate the necessity of a transplant in the next couple of years?

If you don't like the specialists that he's seen in the past, you should do some research. Ask his primary care doc if he has any recommendations. Ask your own, for that matter. Check around with friends and co-workers. Somebody may know someone.

 

[starrchild]

^^ What the Grape said.

A kidney biopsy is a rather invasive procedure; I've only had one biopsy done, but it was on my first transplant kidney, to see if I was having a rejection episode.

Ask the docs if they are looking for something specific, and if they are, if there is another less or non-invasive test they can perform to see the same or similar results. If your son's kidneys are in that fragile a state, a large needle poking into one and taking a tissue sample may not be the best thing for them, or him.

 

[Australis]

As far as we can tell, the biopsy is to try and find out why he's a statistical anomaly - they all think he should have had a transplant by now, given the state he was in when he was one. Instead, he's just kept going, and we really, really don't want to risk that.

Is he getting worse?

He says he feels fine. They say he is, but the last set of blood tests were taken while he had a nasty, lingering flu. And they have said this before, that's the kicker. Yet he just keeps going, and it's been 20 years.

Do they anticipate the necessity of a transplant in the next couple of years?

They've been saying "in five years" since he was 5. The thought has crossed my mind that if I donated one of mine (assuming compatibility), it might relieve his own long enough for them to heal, but I don't have enough info on that option. The way medical technology is advancing, if he can hang on, they may well be able to clone a healthy one from his own cells and implant that. Another reason I'm keen on the Singularity happening sooner rather than later.

Is there a benefit? The only one I can see, whcih they've hinted at, but can't absolutely say, is that it may lead to an effective treatment. The key word there is 'may'. I'd like them to try a MRI first. If they can get the amazing images of the brain they do now, then a close examination of his kidneys may reveal aspects of his condition that they haven't previously seen.

starrchild, was any mention made of risks associated with biopsies? We've heard a few horror stories about them bringing total failure on.

And thanks for the replies.

 

[Captain Ice]

Australis, you might try asking your GP and your son's GP for recommendations. I'd go to them first and ask them who they would tell their own child to go see.

 

[ancientone51]

Australis I wish I could give you an answer. All hubby's kidney problems never necessitated a biopsy.

Is your son on any type of dialysis? Hubby was on Peritoneal for over 5 years.

Good thoughts and Zen hugs to you and yours.

 

[RJDiogenes]

As far as we can tell, the biopsy is to try and find out why he's a statistical anomaly

That's not a good reason for a potentially destabilizing test. What I would do is have your tissue compatibility checked now to be ready in case a transplant is needed (and to ease your mind a bit). Cloned organs are probably a few years away and, in addition, approved coverage by health insurance companies is going to be a few years beyond that. As for an MRI, I can't really comment; offhand, I don't know what benefits there would be to a kidney MRI in these circumstances.

 

[Ar-Pharazon]

If I may ask, how do they biopsy a kidney?

I know how they get a lung biopsy and I imagine that's a lot easier than with kidneys.

 

[Australis]

Captain Ice, the problem is that in our region there's only three specialists, one has died, and the other is being forced out by the third, who every one agrees is a complete arsehole that makes Greg House look like Florence Nightingale. Travelling further afield is an option, but:
there's so few they all talk to one another; and
the medical services don't like patients going outside their region. If you can afford it that's fine, but that's only for the wealthy, and I'm not there, yet.

RJ, cloning, yep, that's what I'm thinking., The family poo-poos the idea, but I've been keeping an eye on this, that's why I'm hoping he can hang on until then.

ancientone, was there ever a time when you or your husband were concerned about problems caused by having a biopsy? Was it ever mentiojned by your doctors?

He's not on dialysis, again, the statistical anomaly thing. I looked at some of his results this evening. His blood coutns are fine across the board, the red cell count is a little low but within the norm. Cholesterol is normal, nearly everything is normal, just much too low filtration rate much too high with the creatinine iirc. Also his liver is producing extra albumin with helps keep him on an even keel - he's fairly skinny and not retaining fluid at all.

And thanks for the hugs.

Ar-Pharazon, it's a loooong needle into the kidney, which basically pinches a bit of the organ, and has been known, if inserted incorrectly, to cause bleeding, and is usually quite painful. ancientone can tell you better, if she wants to.

 

[Ar-Pharazon]

Kinda similar I guess. With a lung biopsy they put a tube through the nose, down the throat and into the lung. The a camera or other device goes through the tube and they can remove a miniscule amount of tissue.

It also has the potential for bleeding and in extreme cases, a collapsed lung.

 

[ancientone51]

Biopsy was never discussed. He had a couple of angiograms for his heart problems, but not the same thing.

Wish I could remember what we did when creatinine (sp?)) was high, but it is surprising what you can forget in 6 months after living with it monthly or more for years.

I would tend to say, if he is doing okay, don't mess with it. Sorry I can't be of more support. Just sending vibes and hugs.

 

[Australis]

Thanks, guys.

Now he's had a bit of a scare, he's restarting his regime of drinking cranberry juice and a tea made from boiled astragalus, a Chinese vegetable that he's used before. Hopefully this will stabilise him.

 

[RJDiogenes]

Cranberry juice? I'd rather have a kidney transplant.

Just kidding. But in a more serious vein, I really think you shouldn't pin too much hope on the cloning option. Like I said above, it'll be a few years before it's available for use with Human patients it will be considered experimental for quite a while; and when it is available it will be hugely expensive, and probably not covered by insurance for a while after that. I'm guessing a bare minimum of twenty years.

But if he's stable and comfortable now, I wouldn't mess around with the situation too much. There's no need for a potentially disruptive procedure just to satisfy the doctor's curiosity, not if the results aren't even going to provide guidance for treatment.

 

[Ar-Pharazon]

Won't be expensive if one can get in on the test phase.

 

[RJDiogenes]

Very true; but that, of course, carries greater risk.

 

[Australis]

But if he's stable and comfortable now, I wouldn't mess around with the situation too much.

Very much our thinking too.

As for the cloning thing, it'll happen, and we just have to keep him going until then. If I need to donate one to cover him until then, well, that's just what I'll have to do. One in the testing phase? Not sure, see what kind of returns they get on initial tests.