Getting a diagnosis - biopsy?

[AguynamedKim]

As far as diagnosing the particular underlying disease CKD (FSGS, IgA, PKD, diabetes, etc.), is this only done through a biopsy?  It seems like this is a relatively straight forward procedure with fairly minimal risk. 

[murphy]

I think a biopsy is the only way to tell for sure which disease it is.  There are a few risks.  You have to stay afterwards to be monitered and it hurts as all they can give you is something to deaden the skin.

[Restorer]

My first two biopsies didn't hurt. They were able to numb it all the way down to the kidney. It was a CT-directed biopsy, so they pushed the needle in a little at a time, between scans, and it took a while.

My third biopsy only hurt because they missed the kidney and started biopsying my diaphragm, which wasn't numbed.

[MooseMom]

I know from personal experience that a biopsy is the only way to diagnose fsgs.  I was in hospital overnight and had to be as still as possible to prevent bleeding from the kidney.  It was awful because the neph kept missing the kidney.  It took him five tries.

[kristina]

I had a kidney-biopsy a year after my kidneys first failed in 1971,
when I was strong enough for it in 1972.
A diagnosis of chronic proliferative glomerulonephritis with hypertension was forthcoming.

As a result of this kidney-biopsy I had the complication of the kidney bleeding profusely.

After the diagnosis I was told that I should not have another kidney-biopsy,
that they had got a diagnosis and felt it would be too dangerous for me
to ever have another kidney-biopsy.

Several times over the subsequent years specialists/nephrologists
wanted me to have another kidney-biopsy,
but I always refused on the above mentioned grounds.
 
My question was, and still is, why did they want another kidney-biopsy?

They never said they doubted the original diagnosis, in fact they never said anything,
they just wanted another biopsy.

Sadly, by refusing to cooperate and give them another kidney-biopsy
I felt I no longer had the specialist/nephrologist on my side and soon after
I felt forced to look for and find another specialist.
All the specialists/nephrologists said was,
that to know what is happening in the kidneys they need a biopsy.
But, when I asked them if this would guarantee anything (state of kidney-disease etc)
they replied that it would only tell them the condition of the tiny piece of kidney taken,
and that if they got a different part of the kidney it might give them a different result.
Perhaps, with to-days up-to-date scanning they can more precisely aim the biopsy-needle?

What is your opinion?

[Jean]

Fortunately I did not have to have a biopsy. When they did the ultrasound, they could see that both of my kidneys were covered with cysts.

[monrein]

My position on biopsy is that I will agree to have one if the information obtained from it will be of value in changing or initiating treatment.  I love knowledge for the sake of knowledge but not in the case of biopsy.  I have only ever had two.  Fortunately, my neph seems to agree with this position.

[Scarlet]

A biopsy was never needed for mine either. I am third generation PKD and it was discovered when my family took part in a gentics research project at St. Joseph's Hospital in Hamilton, which consisted of imaging using IVP dye and blood tests.

As my maternal grandfather had EDRF with PKD and we had discovered that my mother also had advanced PKD we were asked if we would volunteer to be part of the study. I was 15.  My parents decided that I was old enough that if I wanted to know the results that the doctors could tell me.  And they did....unfortunately for the next 4 years my grandfather was very ill and it seemed to my 15yr old self that D was not really a good idea.  I have come to realize as I grew older that there where many other things wrong with my grandfather then just the PKD, but it left a very vivid impression on my and what I grew up thinking my future would be like.

[Deanne]

My biopsy hurt like H-E-double-hockey-sticks. I have a high tolerance for pain and I don't cry, but I spent a long time crying in my hospital bed afterward because of the pain. My neph was rather heartless. He pretty much told me to stop being such a big baby. I was in quite a bit of pain for a couple of weeks. Later, he said they must've gone through a muscle or something. I changed nephs after that. I think they also said that with FSGS (my diagnosis), the disease in the early stages can be somewhat scattered through the kidneys (the segmental part of the term), so there's a chance that the samples they get during a biopsy might not show anything. Looking back at your earlier posts, I don't know that I'd opt for a biopsy at this point.

[kitkatz]

I think the docs just like to see for themselves so you, the patient, undergo more tests.

[kristina]

From my experience and from what I have now read of others the only conclusion I can reach
is that to go ahead, or not, with a kidney-biopsy must be considered on an individual basis,
weighing-up the pros and cons and talking it over frankly and honestly with the doctors.
 
It must be a totally informed decision that the patient makes.

Of course, instinct comes into this as well,
but our instinct is more often that not based upon subtle facts
which in this case we really have to take note of.

In my case the specialists/nephrologists who were involved with my first kidney-biopsy
told me categorically that I should not have another biopsy.
 
I always took this as the best advice
because those doctors/nephrologists were there at my first (and only) kidney-biopsy.
Any subsequent doctors/nephrologists that suggested another biopsy
did not have this earlier knowledge,
so I always went with the suggestion of the first doctors.

Added to which none of the subsequent doctors/nephrologists convinced me
that another biopsy would be crucial to my survival and well-being.

[KICKSTART]

I ended up having 2 , one on each kidney. We had to lie flat on our backs for 24hours after it. The first one was awful , i wasnt numb enough and he must have missed the spot, because i ended up with a lot of pain and bleeding from it , they put me on 15 min obs. The second one i dreaded but it was a different doctor, he practically knocked me out ! just a bit of stomach ache after , but nothing like the first one !

[paris]

My first biopsy was for diagnostic purposes. (FSGS)  They may have to take more than one sample; the pathologist will determine if the sample is good as you are still on the table.   I had to lay flat for 24hours in the hospital. That was almost 8 years ago.    I had a second one a few weeks ago; 2 weeks post transplant.  The nephrologist sugeon told me things have advanced and now you lay flat for 6 hours.  Much better.  I didn't have pain with either biopsy.  Actually, I was watching the screen to see the process.They pointed out the kidney, bowels, fluid build up.   I deal with situations better if I can be a part of it. Tell me what you are doing, as you are doing it and use grown up words (don't dumb things down for me).   

I feel that you have to have great trust in your doctors.  When my doctors want to try something, I have them explain everything and tell me why I should or shouldn't do the procedure.

Good luck.  I have found everything to be better than I anticipated. Worrying is the worst part of all of this.

[kristina]

What you have reported, Paris,
with regards to your own experiences sounds wonderful.

But flip the coin over and there you have my experiences
and they are not at all like what you have experienced.

Unfortunately I have not yet met doctors who are willing
to take the time to tell me anything
and therefore I cannot trust them
as they have been non-committal
about why they want to do certain procedures.
 
I also always say I want to know the facts and
I am not frightened about being told anything,
however serious...

There are always two sides to every coin.

I can only wish you the very best and hope
that I might have similar experiences one day...

[paris]

Yes, we can all go through the same situation and have different experiences.  I did change nephrologist at the beginning since the first one and I didn't see eye to eye.    I post my experiences with the hope that it may show others that not all  doctors or procedures are horrific.  I may just be fortunate, but I have great relationships with all my doctors. They give me excellent care and even call me at home to check on things.   

I am very sorry you have had such bad experiences.  I can only state what has happened to me.  That doesn't diminish your "side of the coin".  But that also doesn't make "my side" not valid.    Now, back to AGuyNamedKim's original question.

Kim, let us know what is decided and how things go.    ( I love the name AGuyNamedKim---my very first kiss was from a boy named Kim!) That was a thousand years ago!!

[BASSMAN]

I was told the only way to know my kidney ailment was by biopsy.  I had my biopsy 20 years ago.  It as done under a local.  I felt a small pinch when they actually snipped the piece from the kidney.  I had to lay on my back motionless  for an overnight stay in the hospital with a pressure bandage on.  No real pain at all.  No complications.

[needlephobic]

What you have reported, Paris,
with regards to your own experiences sounds wonderful.

But flip the coin over and there you have my experiences
and they are not at all like what you have experienced.

Unfortunately I have not yet met doctors who are willing
to take the time to tell me anything
and therefore I cannot trust them
as they have been non-committal
about why they want to do certain procedures.
 
I also always say I want to know the facts and
I am not frightened about being told anything,
however serious...

There are always two sides to every coin.

I can only wish you the very best and hope
that I might have similar experiences one day...

I know the feeling of not trusting doctors. When I was told about my kidney failure my neph wanted to wait until i was really sick. Then I get a call from him he has made appointment for me to see a surgeon that was going to do my fistula. The surgeon explains it in medical terms which scared me to death. I go back to neph ask him about it  and he sends me in the d center to talk to this guy about it which confused me more. It would have been easier to give me info to read and answer my questions not my neph. I got on line and found the info i needed about fistulas and found this site too been very helpful. Well they put the fistula in and a chest cath  to start me on d asp. I thought I would wake up in recovery and the neph would walk me through the d procedure nope woke up in the d center in a dark corner with the curtains pulled around me with tubes coming out of my chest to a machine and freaked out. When they found that tumor on my left kidney he was gun ho to take the kidney it had cancer asked about a biopsy to find out no it would spread. It didn't spread had ct shown it is not there no sign of it and he is scratching his head. I can't get straight answers from him gives me and everybody that stupid look like he cares but he don't. So I am looking for another neph right now hope I find a good one this guy is five years out of school and is still wet behind the collar.