I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: General Discussion => Topic started by: IrishGirl on April 06, 2008, 10:12:27 AM
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Well, I believe my turn is coming up and my sister said it was horrible. Terrible. Painful and she would never EVER do it again no matter what. My brother had his and said it was "no big deal" . I have decided that based on their information and what I have seen and read, the results told the Drs nothing at all they did not already know. They really gained nothing at all by the results as far as I can see. The labs speak for themselves and the ultrasounds showed the cysts. The GFR, BUN and creatinine are what they are. Is there any real reason for the kidney biopsy and what is your experience on that? I am pretty set on declining it. I see no reason for it at all. They told the Drs what they already knew about my sister and brother both. I am not going to have it done and am planning to decline that particular test. Any opinions on that ? Thanks.
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Hi right at the begining i had two done ! Ok im sure everyone will tell you a different story about having it done. My first one was horrendous , they inject around the area with a local to numb it , then do the biopsy, i didnt have enough local although the area felt numb to the touch , it didnt when the doctor actually used that instrument they use to do it. Im not going to pretend , the pain was awful ,although i have never been stabbed i should imagine this is what it feels like , for a couple of hours after i had less pain, more discomfort , no worse than a period pain i would say (sorry guys!)
Now the second one was totally different , when it came time i was shaking so much because of remembering the last one , they said they would give me a mild sedative first to calm me a bit ,next thing i knew it was wake up its all done , the sedative had made me fall asleep all together!
They do a biopsy because although they know you have kidney failure , the tissue they take tells them how bad your kidneys are , or if its progressed , thats why i had two done . The first to confirm it and the second about a year after to see if the disease had gotten worse.
Although its easy to say but hard to do the more you can relax , the better it is ..good luck !
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Oh I wont be needing any good luck. I am declining the test. I know that I dont have to have it
done and nobody can force me. I am still the one making the decisions about my body. They can
certainly offer to do it but that will not mean I must do it. And, I wont be doing it. They have
enough other tricks up their sleeves, blood tests, etc, that I will not consent to something that
invasive to tell them what they already know. The disease always progresses, and who cares at what rate? They can tell that by the GFR going down, and the BUN and Creatinine going up. Biopsy..Bah. Wont do it. The information it gives them is very limited as far as I can tell and from the books I have read and the stuff I have seen, unless you guys tell me otherwise, I am not doing it. My sister said hers was almost as bad as childbirth.
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Hi right at the begining i had two done ! Ok im sure everyone will tell you a different story about having it done. My first one was horrendous , they inject around the area with a local to numb it , then do the biopsy, i didnt have enough local although the area felt numb to the touch , it didnt when the doctor actually used that instrument they use to do it. Im not going to pretend , the pain was awful ,although i have never been stabbed i should imagine this is what it feels like , for a couple of hours after i had less pain, more discomfort , no worse than a period pain i would say (sorry guys!)
Now the second one was totally different , when it came time i was shaking so much because of remembering the last one , they said they would give me a mild sedative first to calm me a bit ,next thing i knew it was wake up its all done , the sedative had made me fall asleep all together!
They do a biopsy because although they know you have kidney failure , the tissue they take tells them how bad your kidneys are , or if its progressed , thats why i had two done . The first to confirm it and the second about a year after to see if the disease had gotten worse.
Although its easy to say but hard to do the more you can relax , the better it is ..good luck !
My biopsy story is very similar to Kickstart. I also had 2 biopsy; one to confirm the diagnosis IGA Nephropathy and the second to determine the progression of the disease.
1st biopsy was suppose to be 24hrs stay in the hospital which turned to 7 days. I had complications. The Dr that did the procedure ruptured some veins causing me to bleed out. I had to have blood transfusion to make up for the loss.
2nd biopsy even though it was painful. Felt like someone is jabbing a knife in my back. No complications. I went home the next day.
I didn't want to have either one done, but I was afraid if I didn't I could be saying no to something that would help slow the progression of the disease. I don't know if the treatment is what delayed dialysis for 7 years. Whose to know, coincidence?
It's really up to you. Just because I know what it felt like, I don't want to go through it again. By the way, I was awake the whole time because they needed me to hold my breath while they went in to do the biopsy.
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I had two renal biopsies and did not find either of them very painful, but human experience of pain varies greatly. In my case, the diagnosis and thus the treatment were both entirely unclear, so there was some evident benefit from the biopsy. But in the present case, it is unlikely though still possible that something else is causing the renal failure, and a good physician wants to make certain of the diagnosis before proceeding.
In my case, for example, I had type 1 diabetes, and since 40% of type 1 diabetics develop renal failure, that was the natural presumption when I began to go into endstage renal disease. However, as logical as it was to suspect that, two biopsies confirmed that after 30 years of type 1 diabetes I had experienced no diabetic renal disease, and that the problem was due to an extremely rare auto-immune disease, Wegener's Vasculitis, which has to be treated in a completely different way from diabetic renal failure. So keep that possiblity of something strange being operative in your case before you decide against a biopsy.
Weighing against a biopsy is the fact that biopsies are always damaging to the kidneys, and occasionally it can be very difficult to stop the renal bleeding consequent on the biopsy, which does even further damage.
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My experience was not bad at all. They gave me something for my anxiety, numbed the area and did the biopsy. The sound of the instrument was probably the worst part. I felt pressure, but no pain. I had to stay 24 hours with the first 12 on my back. The doctor talked to me during the procedure, telling me step by step what he was doing. Doing a biopsy was the only way to definately diagnose what type of kidney disease I had. I am not diabetic, do not have polysistic kidney disease so the biopsy determined I had idiopatic FSGS. Again, I really didn't have any pain --have had 4 kids, so I do know what pain is :rofl;
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I am not really a baby, I have had 3 kids without epidurals or anesthesia and thought it no real big deal. Not much pain. I am pretty tolerant. However, that being said. I guess they already know my pending diagnosis. It doesn't take a rocket scientist OR a renal biopsy to figure it out. My dad had polycystic kidneys and died at 38. My brother is starting dialysis for polycystic kidneys. My sister has polycystic kidneys.....waiting for a transplant.... They both had biopsy's. If my pending ultrasound shows cysts on my kidneys, and the urine shows protein, and the GFR is reduced and the BUN and Creatinine are up, then thats it. Diagnosis: Polycystic Kidney Disease. Why on earth would I have a renal biopsy at that point? I fail to see that it will affect the diagnosis or the treatment. No meat, no protein, keep the Blood pressure down and wait for the progression to lead to dialysis. In my case, no diabetes and clear cut diagnosis there should be no reason for such nonsense. IF you guys think I am being an idiot, feel free to tell me, I wont be offended. My brother's Dr actually told him they would not get much information from it. He still did it though. ???
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Irishgirl, I agree with you. What is this going to tell them? You need to ask them that. I think they just need to raise money for the hospital.
After 17 years when my kidney was failing they wanted to do a biopsy. I had never had one and they were not going to start this late in the game. I asked them "what will you do if you see that it is rejecting?" They said they would take me off Cyclosporine and put me on Prograf. I said well let's just do that then.
You don't have to do this if you don't want to. Make them convince you that it is necessary.
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My kidney biopsy wasn't painful. The only thing that hurt was my shoulders because you're lying on your stomach and you have to find a position that is comfortable to you and then you can't move at all! I put my arms above my head and my shoulders did start to ache. Also, the 24-hr stay in the hospital sucked, because I had to lie perfectly flat the entire 24-hrs - not even a pillow. The scare is internal bleeding, I believe. But I don't recall the actual biopsy hurting much. Just some pressure is all I remember.
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IrishGirl, I think that was what I was trying to say--if the whole family has a history of polycystic kidney disease, why do they want the biopsy? In my case, they had no idea, but yours seems to be very evident. Can you ask the doctor what would he do different with the biopsy results than without them? With the family history, it seems obvious. But, I just wanted you to know mine wasn't painful. Hopefully, this is one procedure you won't have to have. One thing this site has given me is power. I now question everything given or done to me. Sounds like you are already there! Let us know what the decision is. :thumbup;
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I am not really a baby, I have had 3 kids without epidurals or anesthesia and thought it no real big deal. Not much pain. I am pretty tolerant. However, that being said. I guess they already know my pending diagnosis. It doesn't take a rocket scientist OR a renal biopsy to figure it out. My dad had polycystic kidneys and died at 38. My brother is starting dialysis for polycystic kidneys. My sister has polycystic kidneys.....waiting for a transplant.... They both had biopsy's. If my pending ultrasound shows cysts on my kidneys, and the urine shows protein, and the GFR is reduced and the BUN and Creatinine are up, then thats it. Diagnosis: Polycystic Kidney Disease. Why on earth would I have a renal biopsy at that point? I fail to see that it will affect the diagnosis or the treatment. No meat, no protein, keep the Blood pressure down and wait for the progression to lead to dialysis. In my case, no diabetes and clear cut diagnosis there should be no reason for such nonsense. IF you guys think I am being an idiot, feel free to tell me, I wont be offended. My brother's Dr actually told him they would not get much information from it. He still did it though. ???
Don't completely cut protein out of your diet! you need protein for you muscles. You'll waste away if you don't get protein!
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I had a couple kidney biopsies when I was 9 years old, I don't remember it being to painful, the pressure and the idea of them putting this long, thick needle in you was a little frightening and you're not asleep. I'm going to have to get one soon on my new kidney and they told me I would be lying on my back since my new kidney is in the front, I don't know how that will be, but I don't want to see it being done! Just talk to your doctor about your concerns. I would think that different hospital do them differently. Goodluck!
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I had a bad experience. But most people seem to say it's not all that bad.
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I've had 3. The first one I was very young (5 I think) and was put under. The second time I was in 5th grade and it was hands down the worst experience in my long medical history. I still have flashbacks which send me into an absolute panic. Two years ago I had to have another one and insisted they put me under. Turns out they do that at that program anyways - in fact, they were horrified that my second one had been done when I was conscious.
They were able to determine quite a bit so I think it's worthwhile to get done, but just be demanding and ask for options.
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My nephrologist recommended against getting a biopsy, because it might hurt my kidney. And since they knew what caused my kidney failure, a biopsy wouldn't change my treatment. Sounds like similar reasoning to yours, IrishGirl.
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Thanks for all the advice. I will be skipping it for now. There are risks of injury and bleeding, etc and I think the risks outweigh the benefits for now. I am grateful for the input. Also, paddbear00 I wont totally give up protein. I have never been a huge meat eater anyhow, so now I am trying to limit it and watch my intake...we used to have 30 chickens and my eggs intake was enormous! I am really watching it now with the protein. I am not heavy and I dont smoke. I am only 5'3 and 125# and my BP has been very high since I was only 24. I have been on meds for it...So I suspect I probably have the disease as well. I am trying to keep my BP down for now and do whatever I can to preserve the function I have.
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I agree, they don't need to do it if you have a strong family history of it. I did have one when I was 5 and still have bad memories. Then, when I was older and had kidney failure they never asked to see the results, nor do a new one. I did have to get a liver biopsy, and that wasn't bad.
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My biopsy was very painful. They had to take four different samples during the same procedure to help determine why my kidneys were failing.
It was like being stabbed four times and they wanted me conscious and alert so I could move my body for their needs. My doctor said it might
have been because I was so skinny at the time (103 pounds). I always suspected it was because she was just lousy at her job.
After the biopsy I wasn't allowed to move one iota in my hospital bed so my kidneys could heal and not accidental start bleeding(which
can apparently happen after a biopsy). In may case, there was no other way to determine why my kidneys were failing so I had no choice.
If I had a choice, I would not do it again.
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my biopsy was pretty good,some local,small incision,took about a piece of rice , every few hours put a bag of peas on the sight and was good the following day. :thumbup;
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Well, they will have to put me out or give me some serious doses of Versid to do it again. They just gave me a little pain medicine and something else to dry every bit of saliva from my mouth and shipped me to the procedure room. The biopsy itself wasn't so bad, but the numbing of the kidney made me just about pass out. The numbed the underlying tissue first and that was no fun, but when they went to numb the kidney itself...OMG!!!! I know everyone down the hall heard me. It was the worst pain I have ever had.
I don't know about anyone else, but a major wave of nausea hit me like a brick wall after they took the first piece....they took 4 total. The doc was giving me all of thses instructions and due to the sever nausea, I couldn;t even hold my head up and couldn't respond to him. He said it was normal to feel this way, but they had stop until I could regain composure. He was like a boy in a toy store, he was so excited of his biopsy accomplishments and was just gushing and dying to show me the pieces. I told him to chill out and get that away from me...lol. I too had to lay completely flat for 24 hours and oooh how women just love to use bed pans!! NOT! It did do something to my kidney, because they said my creatinine went up to 2.6 during my stay, but I had no bleeding or other complications.
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Yet further proof that medicine knows a lot about biology and absolutely nothing about human beings. As I commented once before, medicine is all too willing to impose serious damage on patients for even the tiniest gain in diagnostic accuracy, as the flood of new patients to dialysis units whose kidneys were destroyed by contrast dye investigations shows. Absolutely no thought is given to how patients feel during these invasive tests, and I can testify that after my renal biopsies I felt as if I had been raped.
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Yet further proof that medicine knows a lot about biology and absolutely nothing about human beings. As I commented once before, medicine is all too willing to impose serious damage on patients for even the tiniest gain in diagnostic accuracy, as the flood of new patients to dialysis units whose kidneys were destroyed by contrast dye investigations shows. Absolutely no thought is given to how patients feel during these invasive tests, and I can testify that after my renal biopsies I felt as if I had been raped.
Stauff , regardless of how you feel about biopsies and their use , to compare it to being 'raped' is a bit strong !
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I had one donw 11 years ago in 1997 so it's fading a bit in the old grey matter but I recall they may have even just given me a local and it really was no big deal. I may have stayed in overnight but that was pretty much it. Nothing much to it.. a couple of needles really. no problems thank god...
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It's best to go in with an open mind and not thinking about what others say. I had one a couple of years ago. Lied on the table and joked around with the people as they stuck the needle in and went home 8 hours later. No big deal. The only thing I missed was seeing the needles when they pulled them out. They didn't know that I wanted to see them.
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I just had a kidney biopsy yesterday and was terrified. Because there was some residual bleeding, they did something to control that and the procedure took a bit longer. I was only in recovery for two hours and was able to go home to rest. I feel pretty good today. Do you think the procedure has gotten more streamlined? (I am pre-dialysis, stage IV. They haven't been able to figure out what brought on my kidney failure in just a year.)
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Hello,
I have been wondering what a kidney biopsy is there for? Does it establish anything helpful for the patient? Or is it just for medical research ?
I am wondering because after my (complete) kidney failure in 1971, my kidneys slowly recovered over the next 12 months (without dialysis)
to 40% function again and the doctors decided then that my body had recovered enough for a kidney biopsy one year later in 1972.
Unfortunately my kidney continued to bleed profusely after the biopsy had been done and because of that I was transferred to an Emergency Ward.
I was later told by the medical team that I should never ever have another kidney biopsy because it would be too dangerous.
I could not really work out what that meant, but I knew that they meant what they were saying
and because of that I "stuck to it" and did not allow another kidney-biopsy ever again...
What really "got me" was the fact that this kidney-biopsy "only" provided me with the diagnosis of "Chronic Proliferative Glomerulonephritis" and that was it.
There were no suggestions of what to do medically, no suggestions were made of a possible medical treatment, no suggestions were made of anything at all...
... and I began to wonder what it was all about and what the kidney-biopsy was there for?
It did not provide me with anything at all except a name for an untreatable disease... and I came to think that is was very little for what I went through...
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My diagnostic biopsy many years ago caused a lot of pain for about two weeks afterward. They neph I had at the time said they must have gone through muscle. In that regard, it was awful. The neph told me the reason for it was to get a confirmed diagnosis because the diagnosis would lead them to the best treatment plan. I don't know what the treatment plans are for other diseases and if there's really much of a difference, but for me at the time, they didn't change anything. Later they had me try high-dose prednisone based on the diagnosis of FSGS because *sometimes* it can put the disease in remission or partial remission. The diagnosis also set triggers because FSGS sometimes recurs after transplant.
Post-transplant, the two "routine" biopsies I had pointed out future potential problems with my transplant. Even though my labs are good and show no sign of problems, the markers for problems are there. I know I'll always have to be extra careful and will not be able to come off prednisone as I thought I would.
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i had a kidney biopsy because i was spilling so much protein in my urine and the neph needed
to find out exactly what was causing it. and yes it was very super painful and they did not give me
enough pain medication and they couldn't get the needle through my muscle in my back. i cried
the whole way through and vowed to never do that again. i think if i would have been given the right
pain meds it would not of been so painful. i was diagnosed with a rare autoimmune disease...antibodys
attacking my kidney filters. and so here i am now 20 years laters.... kidney filters dont work anymore!!!!
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Correctly done, it is not that bad (been there, done that). The capsule surrounding the needle is innervated, so you will feel it when the needle breeches that perimeter but, with adequate local anesthetic, you won't feel anything else other than the first jab when the local is stared.
There can be huge differences in comfort given the skill of the doc. I've had 2 bone marrow biopsies. Although both were worse than the renal core sample, there was a distinct difference in discomfort level with the doc who did the better job taking great care to make sure his fellow used enough lidocaine.
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I've had 6 biopsies all together, 2 on my native kidneys, and 2 each on my transplanted kidneys. The first biopsy I ever had done was by a pediatric nephrologist who was actually one of the top doctors in his field in North America (he retired last year). He accidentally hit one of my ribs. I was in pain for about a week after that. He refused to do another biopsy on me, and had his partner do the second one. These were to try to figure out what the cause of my kidney failure was, because nobody knew. They still don't really know. The others were done during rejection episodes, to determine the extent of the rejection. I believe that the last one was unnecessary, because once it was all finished, they told me, for the second time, that my kidney was failing and there was little they could do to stop it. Then they didn't understand why I wasn't upset.