The "lack of kidney" doctor

[PaulBC]

I made this comment in another thread, but I think it fits under this subject line. I'm also curious if anyone agrees or disagrees:

Nephrologists are experts in keeping you alive and as well as possible in the face of kidney failure, and you should depend on them for that. But when it comes to what caused your kidneys to fail and what's going to happen later, their guess is often about as good as yours or mine.

The point is that you might think that a kidney doctor is a doctor that knows how to fix your kidneys. Sadly, this view can only lead to disappointment. Nobody knows how to fix a kidney.

Nephrologists are actually lack-of-kidney doctors. They know what your kidney was supposed to be doing, and their expertise lies in replacing as much of this function as available medical technology permits. That's why it's called "renal replacement" not "renal restoration." The latter field of medicine would be a great. Let's hope we get it soon.

There are exceptions. Some forms of kidney failure respond to steroids. Of course, that is only if permanent damage has not occurred. There are also changes to diet and lifestyle that can make your kidneys last longer. But consider the extent to which your kidney doctor is really a lack-of-kidney doctor. Surely, this is a huge part of nephrology as currently practiced.

Note that renal replacement is a life-saving field of medicine that did not exist even 70 years ago. So I don't mean to knock it, just to present a certain way of thinking about it.

[mysticnight]

I love you way you see this!  So true - they are experts in kidney failure.

[MooseMom]

I don't know if we should be looking to nephrologists for "cures".  Instead, perhaps we should be looking to bio-engineers who work with stem cell technology in concert with tech whizzes who work on 3D printing technology.  Keeping a renal patient alive and healthy is a full time endeavor and should be left in the hands of nephrologists.  I'd imagine they don't have time for much else.

As for what causes kidney failure, well, the causes are many.  I know exactly why my kidneys failed, but I don't know why I have this particular condition.  No one does, but they do keep looking. 

Do you ever read any "kidney blogs"?  One I find to be interesting is Renal Fellow Network.  http://renalfellow.blogspot.com/  It is for fellows in the field of nephrology, but as a kidney patient, I find it interesting.  I've learned a lot about various topics in NephWorld.  Check it out!

[PaulBC]

Instead, perhaps we should be looking to bio-engineers who work with stem cell technology in concert with tech whizzes who work on 3D printing technology.

I agree. One of the projects that has caught my interest is the artificial kidney project at UCSF. I believe nephrologists also have a big role to play, but it's not their primary job. Another important specialty is immunology, when it comes to keeping any solid organ from rejecting. Frankly, I will look to anyone who can get enthusiastic about providing new alternatives to those suffering from ESRD. I often worry that it is viewed as a bit of a backwater in regenerative medicine. I.e., the heart gets so much attention, and there is a misconception that dialysis is an effective replacement for kidney function or even that transplant organs are available from live donors and actually solve the problem.

Actually, my post was inspired by the nephrologist as undertaker thread and I was originally going to post it there. I was thinking about why it is that somebody you might think of as a kidney doctor is not as interested as you are in saving your kidneys. So it hit me that unlike a heart doctor (who might really do some surgery to fix heart problems) the nephrologist is a doctor to you but maybe not a doctor to your kidneys. Once ESRD looks likely, they are in the business of helping you do without your kidneys.

Do you ever read any "kidney blogs"?  One I find to be interesting is Renal Fellow Network.  http://renalfellow.blogspot.com/  It is for fellows in the field of nephrology, but as a kidney patient, I find it interesting.  I've learned a lot about various topics in NephWorld.  Check it out!

It sounds interesting. I will definitely take a look.

[Riki]

the nephrologist is a doctor to you but maybe not a doctor to your kidneys. Once ESRD looks likely, they are in the business of helping you do without your kidneys.

I'm not sure if that's always the case... when I was a child, the first biopsy I ever had was performed by the nephrologist, and my first PD catheter was placed by the same nephrologist.. so he did do more than just keep me going... he and his partner are/were huge researchers... I know he has retired, but I think his partner is still treating patients..

[PaulBC]

I'm not sure if that's always the case...

Yeah, I overstated things. Besides that, the choice between saving a patient's life and saving some part of them is not unique to nephrologists. But coming to kidney disease with no prior experience, it can be a shock to know how permanent this seemingly invisible damage can be.

In fact, I still can't wrap my head around how my daughter could seem to have no problem with her kidneys until less than five days before she required dialysis and a biopsy showed extensive irreparable damage. I believe our doctors, but I never would have imagined this possible before it happened.

when I was a child, the first biopsy I ever had was performed by the nephrologist, and my first PD catheter was placed by the same nephrologist.. so he did do more than just keep me going... he and his partner are/were huge researchers... I know he has retired, but I think his partner is still treating patients..

It's good you had such caring doctors. I'm also sure most nephrologists would rather save your kidneys if they could.

[edited to fix a typo and change phrasing slightly]

[Athena]

Paul

I'd say Amen to practically everything you've raised in this thread. I totally agree with your observations. I've found out the long hard way that Nephs are essentially in the business of renal replacement and they only really understand ESRD. That's what they've been trained for. So when I described my Neph as really like an Undertaker, I wasn't exactly exaggerating with my metaphor. That is why EVERYTHING to do with renal problems involves discussion about dialysis or transplantation - there is nothing else! If people are walking around still healthy with renal insufficiency like I am, then there s NOTHING in place to save their kidneys from ultimate ruin. The ACEi/ARBs are the only meds we really have but they only slow progression, they are certainly will not prevent end stage. So in the pathetic absence of frenetic medical research to save people from a life in ESRD, I can only reassert that Nephrologists have no other role than to be kidney undertakers.

My primary Neph I do know seems extremely concerned about this pathetic state of affairs. He is always on the lookout for any promising research that can save his patients and has been involved in a few clinical trials in the time I've known him. However, he literally does not have time to be too involved in this field because his primary job description is to save lives through end-stage renal replacement treatment. If he devotes too much time to research, his critically ill patients will then suffer. It's a tough tightrope to walk.

Moosemum is right when she states that there are research bio-engineers and stem cell scientists who we should be better aligned with. They are the guys who can deliver us the sort of treatments we have our hearts set on. Their goals are the same as ours. They truly are looking for viable alternatives to D/Tx.

I can only imagine how it must be like in your case with your daughter. One day, someone's fine and the next, complete & irreversible failure. It's incomprehensible. Was a biopsy ever done on her kidney to determine the cause? What explanation was ever given? It sounds to me like she had an Acute Kidney Injury but which she didn't recover from, rather than CKD as such. I would imagine if it was CKD, it would have been picked up in the past through medical lab tests that are periodically done on children?

Kidney regeneration doctors are who we need urgently! Whenever I think of this subject, I honestly imagine giving the Nephrology profession a big kick up the arse for not being better advocates for us & for having the effect of brainwashing the general community into believing that D & Tx is the true salvation for us. They also brainwash their patients into somehow believing that all that can be done is being done and that it is just a calm patient waiting game towards end-stage for those of us who are in CKD. I've wasted a lot of time hanging on to what my Neph says and have not spent enough time searching for researcher scientists. There isn't enough research being conducted but the research there is is truly exciting and worth supporting further in whatever way we can.

[Athena]

One other word of advice I've been given on medical researchers is that they're not necessarily guys we can wholeheartedly trust either. It's not always a pretty picture in terms of what scientists can end up doing to us in their experiments either.

 

[PaulBC]

One day, someone's fine and the next, complete & irreversible failure. It's incomprehensible. Was a biopsy ever done on her kidney to determine the cause? What explanation was ever given? It sounds to me like she had an Acute Kidney Injury but which she didn't recover from, rather than CKD as such. I would imagine if it was CKD, it would have been picked up in the past through medical lab tests that are periodically done on children?

The biopsy showed C3 glomerulopathy, which is catch-all for kidney damage caused by the C3 alternative pathway. I think the main evidence for C3 was a fluorescence test. We were also told (pretty early) that electron microscopy ruled out dense deposit disease, which is good news (DDD is almost certain to recur in a transplant). After that, the condition was renamed C3 glomerulonephritis. They did a bunch of genetic tests, but didn't turn up anything. In a way, that's good news. It could still recur in a transplant, but the doctors seem more optimistic that it will not.

It's frustrating not to have a better explanation than the above, but we were told very early that we might never know the reason. Looking back, I'm guessing that my daughter had some kidney issues but just never complained much. She's tough.

[MooseMom]

This is a pretty good website that aims to collect information about the newest research and thinking in the renal profession:

http://www.renalweb.com/

Try to keep in mind that "CKD" is merely an umbrella term for any and any maladies/conditions that can lead to ESRD, just as "cancer" is actually many diseases.  Some are incurable.  Others are chronic yet still manageable.  Most are easily identifiable while others defy explanation.

[PrimeTimer]

[quote author=PaulBC
It's frustrating not to have a better explanation than the above, but we were told very early that we might never know the reason. Looking back, I'm guessing that my daughter had some kidney issues but just never complained much. She's tough.
[/quote]

That's very possible. I had a medical condition that the doctor thought I may have been battling for 1-2 years before (forced) doing anything about it. Because my symptoms would come and go and were so vague, I kept thinking I had the flu or was just tired from work, etc, etc...but then the symptoms came and stayed and by then, I was in real trouble. I think as humans, especially when we're young, active and generally healthy, tend to think "oh, that will never happen to me, maybe to the other guy but not me". I'm not sure where that attitude comes from but it's not a good one.

[Riki]

I was 12 when my kidneys failed.  We knew something was wrong, but we didn't know what.  I had been sick for about 3 months.  I got tired easy, I had no appetite, I had nausea and vomiting, and the weird one, I always felt dirty.  I could smell something on my hands, so I was forever washing them, and my skin always felt like there was a film on it, so I took a lot of baths and showers, trying to get it off.  Looking back, these are all signs of what was to come, but when my body actually began to shut down that day back in February of 1991, nobody knew what was happening, not even the doctors.  It was scary.  Paul, I'll bet that if your daughter looked back, she'd see all the symptoms, the same way that I do, but when you're young, you don't think much off it.  You think it'll go away, or you're just tired.  You don't see the big picture until the bomb drops.

[angroid]

90% drones and parrots, as I see it.

angroid