Kidney biopsy?

[Irelandy]

Hi folks, I finally got to see a specialist this morning. My Gfr is down to 22, no protein in urine, creatinine at 255. Ct scan showed kidneys in good shape physically but to find out more they would need to do a biopsy. One in two thousand people die as a result of this procedure. My question is: Is a biopsy going to give me a meaningful result? Ie reveal something that something can be done about, or am I taking a chance just to put a label on my condition? Any thoughts on this will be greatly appreciated, thank you.

[Hidden]

Hi, I've looked into the possibility of the renal biopsy. There is always a risk to any medical procedure but you will be monitored for anywhere from 6 to 24 hours after the biopsy. If any bleeding should occur then you'll be in a place where they will provide immediate help.

[Irelandy in reply to Hidden]

Thanks Mr Kidney, I guess my main concern is: Is having this procedure necessary? What is the upside for me as a result of having it? I need to do some research to check these things out, or find someone who has benefited from it.

[Hidden in reply to Irelandy]

I was told that I might need to have one to find out what was causing my GFR (kidney function) to continually diminish. Urine and blood labs showed some indication but not enough to be definitive. He was going to run a more in-depth sample and when I return in mid-October we would have a clearer idea as to the root cause. If that is the next step I don't see that I have a real option to say, NO. Crossing the street is a risk and if the biopsy is going to help me then I need to endure the procedure and know that I'm in good hands at the hospital during recovery.

Learn as much as you can so that you can make an informed choice and one from knowledge not fear.

[Irelandy in reply to Hidden]

My situation is similar Mr Kidney, my dilemma is: what are they going to find that may be treatable? Is there anything that may be treatable? Or am I taking a risk just so doctors can put a name to my condition. I had a friend who died when they performed a similar operation on his liver.

[Hidden in reply to Irelandy]

In my case, they don't know exactly what the cause is and the biopsy may be the only way to find out. Putting a name on the condition and being able to treat it is the purpose of the biopsy.

Sorry to hear about your friend but everyone is different and there may have been extenuating circumstances that caused his death. Once you know the risks you are the only one who can make that decision. Have you thought about getting a second opinion?

[Zazzel]

I thought the biopsy was pretty painless, however, I did end up having fever, nausea, dizzy spells and had to go back in for a biopsy. Turns out it was a small blood clot from the procedure, but it was not an issue and cleared itself up and symptoms resolved in a day or so. So, all in all it was pretty simple and quick.

Is this something your doctor wants you to do or you are just considering? Sounds like a discussion you need to have with them. Personally, I had to have a biopsy because I had blood in my urine for several years. My nephrologist suspected IGA Nephropathy (a type of CKD), but couldn't verify it without a biopsy. She was in no rush to have me get one. Finally, I had a huge protein leak and she said it was time. That's when I had the biopsy.

I believe there may be more risk the lower you GFR goes, so there needs to be a sound reason as to why they would want the biopsy. If the treatment plan isn't any different as a result of the biopsy then it might be a reasonable option, but if the same treatment plan would take place regardless of if you have the biopsy, then why take any risk, however minimal.

[Irelandy in reply to Zazzel]

Thanks for getting back to me Zazzel, you have summarised my dilemma succinctly in your last paragraph.

Did you benefit as a result of your biopsy?

The nephrologist I saw earlier said they wanted me to take a biopsy to find out more about what was going wrong. He said that they had exhausted all non invasive methods and were still at a loss? I don't like the idea of taking a risk that isn't absolutely necessary.

The one good bit of news is that my blood pressure has stabilised and is now in the normal range. I have started drinking more water and will be eating more fruit and veg.

I go back in four weeks so I will have some questions to ask before committing to this. Once again thanks for taking the time to reply and good luck!

[Zazzel in reply to Irelandy]

I guess I would say yes. In my case, my gfr was at 51 initially with the hematuria. I made some changes in eating which was related to food intolerances rather than anything to do with kidney at the time although later I'm finding a correlation. My gfr had increased to about 70 by the time I did the biopsy. My nephrologist wanted to verify it because of the proteinuria. If they could verify it then that would be the reason for the hematuria and proteinuria. Prior to seeing the neph, I had been sent to a urologist and had gone through many tests. So, if the biopsy had not shown scarring to my kidneys and confirmed my condition, then I would have had to go through further testing to determine what was going on with me.

I'm assuming from what you are saying that you don't have diabetes and your high blood pressure was caused by the kidney disease and not visa versa. So, they must be trying to determine if there is another underlying cause to what is going on.

For me personally, the diagnosis that I had IGA nephpropathy along with the issues with food intolerances led my doctor to believe that the food intolerances were causing damage to my kidney, therefore it was more important than ever for me to control them in order to keep the inflamation down.

From a holistic standpoint, there were certain supplements and foods to avoid for this particular type of CKD that I don't believe would affect other such as avoidance of gluten (which I happen to be intolerant to anyway).

1.I guess I'd want to know what exactly they will find out. They determined I had IGA N, but can they determine different types of CKD through the biospy and what type are they suspecting you have. My neph already suspected I had IGA N and this confirmed it.

2.At what level or GFR does it become dangerous to have a biospy?

3. How will their treatment plan differ by having the biopsy?

Keep us posted. I am curious as to their response.

[Irelandy in reply to Zazzel]

Thanks Zazzel, you raise some very good questions....which I will be putting to the doctor when I see him in about four weeks time. I have never been tested for food allergies so again it is an avenue I should explore (your increase in Gfr was dramatic). Did you notice a rise in your energy levels? I am very grateful for your reply and I will keep you informed as to what mY kidney doctor says.

As for treatment...At the minute I'm just receiving Medes for my blood pressure and nothing else.

[Zazzel in reply to Irelandy]

The rise in my energy levels came when I got my food intolerances under control. In particular, gluten made me extremely fatigued.

I think the food intolerances is pretty rare in relationship to kidney disease in general. Although I have seen studies with gluten and dairy restrictions leading to reduced permaturia and an increase in GFR for IGAN patients. I would guess that since you have no hematuria or proteinuria you don't have IGAN as those are symptoms of that form of CKD, but I'm not a doctor so it's only from my research that I'm saying that.

Possibly an infection, or long term medicine treatment in the past could have caused the decrease. It's good you have doctors who are interested in finding out more information.

[Beanbag5]

I've had two biopsies at a GFR of around 28 and although uncomfortable and unpleasant, without it your doctor can not a provide specific treatment, their essentially in the dark when it comes to your kidneys. They wouldn't do it if they thought it was unnecessary.

[Irelandy in reply to Beanbag5]

Thanks for your reply Beanbag. In your situation did the doctors find out anything that improved your situation? What is your current egfr? As other people have pointed out I need some serious answers before making my decision.

CKD seems like an iceberg that is not talked about, particularly with doctors. It is not enough to allude to the argument that basically nothing can be done, and if that is the case, why do they want to do a biopsy at this very late stage.....does it all come down to the cost?

Once again thanks.

[Beanbag5 in reply to Irelandy]

My biopsy revealed IgA nephropathy and the extent of scaring to my kidneys. There are some treatments that can attempt to regain some of your function however in my case the biopsy revealed that my kidneys were too damaged. It also allowed the nephrologist to estimate my rate of decline. That was three years ago , my gfr is now 5, I've just started dialysis with a tunnel line even though I have a transplant in a couple of weeks.

In my opinion I think you should, it's a small risk for answers that may further benefit your care in the future.

[Peterpoomsrida]

Hi All, i did a kidney biopsy. It is to measure thr extent of damage and how much is still functional. In my case the neph told me it is still 70% functioning n that it is due to old age. Nothing much can be done except to refrain from food that are not good for kidney function to prolong its health. The ultimate is still dialysis

[Irelandy in reply to Peterpoomsrida]

Thanks for your response Peterpoomsrida, I think at 70% kidney function the chances of coming through a biopsy are much higher than at 22%, and in your case there was not a lot to do except diet. I am only finding out about diet, and much of what I had been eating was not good for the kidneys, salt, bananas, kiwi fruits, pizzas etc and not drinking enough water. I have another meeting in 4 weeks and hopefully my changes will reflect on my egfr....I'll keep everyone informed, once again thanks.

[Peterpoomsrida in reply to Irelandy]

Dear Irelandy, i am just as concerned. My egfr is about 28. However i was trying to response what is the purpose on undergoing biopsy.

[driffieldpaula in reply to Irelandy]

hi IRELANDY i had a biopsey and my kidney function is at 20% AND I WAS PERFECTLY ok afterwards

[rabbit01]

I was already at 18% eGFR stage 4 CKD when I was diagnosed in April 2015. Before then I had no idea, I had kidney problems. The doctors could not understand why I have CKD and after ruling out blood pressure, kinks in the pipe work and diabetes through blood tests, scans and MRI they arranged a biopsy procedure for me. My nephrologist told me that a biopsy would help them find the root cause of my failing kidneys but she also confirmed that whatever they found there was no cure and at 18% it was basically too late to halt the decline to dialysis. She also said that with the high damage already to my kidneys there was an increased risk of a big bleed. So, after thinking about it and reading about the risks and what it would achieve I weighed it all up and did not have it. I should say that I know plenty of people who have had it with no problems at all. I agree with Zassel, ask those questions and then you can make an informed decision.

[Irelandy in reply to rabbit01]

Hi Rabbit01, Thanks for getting back to me, your situation seems very similar to my own. I had been going to my doctor for years complaining of tiredness and high blood pressure and I was told nothing. Very reluctantly he put me on BP medication two years ago....all the time he was taking bloods, so obviously he knew I had CKD years ago. Yesterday the neph told me my gfr was 59 in August 2011 and that was more or less when the decline started.

In your situation you could have gone for a biopsy two years ago and died because of the low gfr. Has your gfr stabilised? I feel that I can still do about 80% of what I used to do, but I am 63. When I asked the neph about bleeds I was told 1 in 2000, but he did not relate that to the degree of kidney deterioration ie many of the people making that stat up may have been stage 3 or lower. The figure may change drastically for those of us with late stage 4 CKD.

I need to ask those questions but am feeling that the risk is not worth taking. Thanks again for your input and good luck.

[rabbit01 in reply to Irelandy]

Through diet changes I got mine up to the dizzy heights of 21% but that was about 2 years ago. It is steadily fallen ever since and I was 16% at last blood test in May. Next one is in a couple of weeks but I suspect it will be sub 15% as I have not been feeling too good recently. I am still work full time although I work with computers so my company is happy for me to work 4 days a week from home and just go in once a week. I have to say I am happy with the decision I took not to have the biopsy. And I consider myself to be inherently unlucky so if anything could go wrong it would go wrong to me

[Irelandy in reply to rabbit01]

Did you see Saifomar's response below? I agree with your reasoning in relation to the biopsy. Elsewhere on this forum I've read about someone who has been living with dialysis for over 20 years.

I hope your next tests show some improvement, but if they don't, living with dialysis is more preferable to dying as a result of a bleed whilst having a biopsy which may provide doctors with information that won't make a difference either way, and there's always the hope of a transplant.

Best wishes and good luck, please keep me informed about your progress.

[Keithtim10]

Hi irelandy i had a Kidney biopsy at St James Hospital Leeds about 18 months ago to help determine my Vasculitis and they took 2 biopsies which was fairly painless as i had an anesthetic prior.I then had to lay on my back for about 6 hours to ensure no bleeding and then took it steady for a couple of hours after that i was fine no lasting effects.Hope this helps good luck.

[Irelandy in reply to Keithtim10]

Thanks for the input keithtim 10, it is occurring to me that the chances of sailing through a biopsy exponentially decrease with falling egfr. What conclusions did your doctor come to as a result of your biopsy? Has your egfr gone up and your health improved as a consequence of your result? These are the questions I need answers to....thanks again, Andy

[Keithtim10 in reply to Irelandy]

Hi Irelandy in my case the biopsy along with blood results confirmed my Vasculitis ANCA but it left me with Stage 3/4 CKD {Kidney Disorder}.My gfr has been fairly stable around the 35 to 42 which is in my case the best i can hope for as long as i am in remission but i had a relapse Nov 2016 and my vasculitis came back and gfr dropped dramatically to around 25.My consultant who i see on a regular basis who is great acted very quickly and after discussion put me on Rituximab which brought me back into remission and been ok since.My gfr increased and has been stable around 38-40.I obviosly do things to help myself like diet and excercise but do ok.Hope this helps.Good luck.

[HealthStrength]

In order to put your own mind at rest, try to gather as much information from the doctors as possible. It is likely that age, general level of health and fitness etc will affect each individual case.

If it helps, I'll share my biopsy experience, which dates from about 15 years ago. I was extremely reluctant to undergo the procedure as I felt we could gather the information in other ways and thought I might relapse afterwards (which I did; tends to follow any sort of bodily stress). However, the procedure itself was pretty routine and only involved the insertion of a tissue-collecting biopsy needle. The anesthetic happened to affect me a little, so I stayed in the ward overnight. But all in all, it was less traumatic than the time I stood on a sewing pin (which is another story). I have subsequently requested biopsies, which the doctors have dismissed as unnecessary since we have the info. from 15 years ago. So, perhaps (and this is a non-professional take) it is a procedure recommended with caution as and when needed?

I'd suggest, keep the open communication with your consultant and pursue all the options that seem right for you. Hope it goes well.

[Irelandy in reply to HealthStrength]

Thank you for sharing your experience with me HealthStrength, I value everyone's experience and will draw up a list of questions I need answers to before my next appointment (4 weeks). So far I have not seen evidence that a biopsy is going to improve my prognosis. Diet seems very important and I have already made some changes in that respect.

How are you now? Has your egfr stabilised? What is your outlook? Thanks again and good luck, Andy

[saifomar]

Yes, I almost died when my biopsy was performed on my left kidney. The kidney got injured and I started to bleed internally. My pulse was slowly fading away. But as you can tell I made it through after undergoing two blood transfusion and 6 hour's of kidney repair procedure. I am one of those very lucky few who is still alive to tell you this - as most of the biopsy procedure that DOES go wrong the results are always FATAL.

[Irelandy]

Thank you so much for your reply Saifomar, my friend Fred bled out when they took a liver biopsy from him and I am increasingly coming to the conclusion that a biopsy is a form of Russian roulette, particularly with lower egfr. What is your situation now? I hope things are much better. My main symptoms are exhaustion, but it's a condition which has developed over about five years and I can live with it . I have cut down on my protein intake, and increased my water intake. Also I've started using a nutribullet to produce smoothies with fruit and vegetables.

Once again thanks for sharing your experience with me its puts a lot of weight on my decision, good luck, Andy

[cmumbles]

How old are you? I like to stay away from all envasive procedures

[Irelandy in reply to cmumbles]

Hello cmumbles, I am 63 and I agree with you about a biopsy see saifomar's response above. What is your situation?

Thanks for taking the time to reply, all the best,

Andy

[Irelandy]

Hi all, I would like to thank everyone who took the time to reply to my post. We are all part of a club we would rather not be in, but we can support one another. I really appreciate you taking the time and effort to tell me of your own situations and give me your candid opinions. I will keep everyone informed of my progress.

Best wishes to you all,

Andy.

[Becks26]

Hi Irelandy,

I've recently had a kidney biopsy to determine the deterioration of the filters in my kidneys and also to confirm a definite diagnosis of glomerulonephritis. I was told that without the biopsy there's no 100% certain way to confirm how bad the deterioration has got. It was actually really interesting when discussing the results, he confirmed the % of filters that had died off and how the others were damaged and the reasons why they couldn't filter correctly anymore etc so I could I understand the disease a lot more.

Obviously there's risks associated with any medical procedure but you'll be monitored after, your BP will be taken every 15 mins to begin with and they'll want to make sure there's not lots of blood passing in your urine and will keep checking the site the needle went in for bleeding too.

I'm going to be honest it wasn't the nicest procedure in the world, but personally I would say it's worth it so that the nephrologist knows exactly what he's dealing with for your treatment. I was sore for about 5 days afterwards, the first day I could barely get out of bed but you're soon back to yourself.

Good luck with everything

[Irelandy]

Thanks for taking time to reply Becks26 it is much appreciated. What was your egfr before the biopsy? I feel that, in my situation, with an egfr of 22 it is academic to see exactly how much deterioration has occurred, and to further traumatise a seriously debilated organ is taking a huge risk....see Saifomar's response above. My blood pressure has been a problem for years and it has finally been stabilised with the addition of 4mg Doxazosin to my regime.

More importantly what is your situation now? Did your nephrologist alter your treatment in such a way as to improve the egfr and your health or did the deterioration of your kidney function continue?

Whilst my doctor told me there was a one in two thousand possibility of death with the biopsy, he did not tell me the statistics for a late stage 4 CKD. I believe those odds may be much lower.

I hope you're situation has improved or at least stabilised in the meantime, good luck and best wishes for the future,

Andy

[swimchic]

Hi Irelandy! I actually don't know if this answer will help you, haha, but I'll share my thoughts. They seem to align with most of the others, you're in a tough spot, sorry!

I have had 3 kidney biopsies over the past 21 years, it's not really fair for me to say I would never do it again, because I do have answers now, and am not left wondering, but I do say I would never do it again. My first one was when I was 12, because the nephrologist told my parents we had to have to it to figure out what was going on, and to see really how bad the damage was inside my kidneys. It wasn't that bad, hurt for sure, was sore for a few days after, and then couldn't do sports for like 6 weeks, but nothing to note. We got an answer though, and I had to change to a nephrologist in the city. Then when I was 14, the new dr wanted another one, to see how much the disease had really progressed. They told my parents it was the only way to really tell. So we did it, and that one was awful. It hurt so much more for some reason, but same recovery. Same disease name obviously, but showed that there wasn't as much disease progress as they thought there would be, so it was a good result for me. The 3rd one was when I was 23, and that was for the same reasons, they needed to see how much the disease had truly progressed. That was the bad one, I ended up throwing clots into my lungs, and was hospitalized for about 10 days, and those took months to fully get through, they were horrible, and they definitely could have killed me. To help prevent the bleeding they make you lay flat on your back for like 12-24 hours, so that also creates a good condition for clots to form.

Anyway, long story short it's pretty obvious why I would never do one again, haha, but the point I wanted to make, was honestly, all that was for nothing. I guarantee I still do the same exact labs that I used to do, that you do, that we all do. I monitor the progress the best we can with urine and blood work, and travel down the same "ckd" path as everyone else. I have a name for my disease (even though they have renamed it twice on me! lol) and I know it also can effect my eyes, so I have my drusen watched, but other than that, everything else is pretty much the same as every other kidney disease. Monitor function and try to keep it up with medication, diet, lifestyle, etc...

Now, I think this is why you are in the tough spot, like I said, at the end of my "I'll never do it again" thought, I do have an answer. You do not. I think you just need to balance out in your own mind, are you ok not knowing exactly what it is causing it, and just saying you have ckd? If you are, then I would say stay away from the needle. If that would bother you, and you find yourself really needing a what exactly is this, then maybe it is for you. Like Becks26 mentioned, it did give her a lot more info than just a name, and it helped her, to know more about what was going on.

I completely agree with those questions that were brought up, I think those need to be taken to your dr, and then in the end I think you will know in your gut which is the right answer for you. Just because there are a few horror stories out there, doesn't mean you'll be one of those too. Everyone is truly different, every circumstance is truly different, so you just have to think it through thoroughly, and make the best choice for you. Definitely keep us posted on the answers you get from the dr, and if you have any more! And on what you decide. I'm sure everyone will be thinking about you! Wish you the best

[Irelandy in reply to swimchic]

Wow swimchic, I am incredibly grateful for your reply. Yours has not been an easy path but you have come through with good humour and positivity. Your experience has consolidated much of what I have been thinking:

1. Whilst the biopsy may give the doctor a more comprehensive picture of how damaged our kidneys are and how the disease is progressing....in practical terms there seems to be very little they can do, and surely, as you have said, this can be deduced through blood and urine tests.

2. The more debilated our kidneys are the more severe the effects of the biopsy will be.

It does not matter to me what caused the kidneys to fail or what the exact nature of the disease is, the point is I have it, and I would rather live with it as long as I can than risk bleeding out or causing further damage as a result of having a biopsy just to be able to put a label on it (and as you have already pointed out, they have changed the name on your label several times).

I think what I have to do at this stage, is accept my kidneys are seriously damaged and carefully watch my diet and lifestyle.

I was not told I had ckd until last June, though it seems my kidneys have been failing since 2011. Surely my doctor knew there was something wrong, yet he never told me......this seems to be a common thread and why should this be? I was aware that my blood pressure was high in 150/90-95 and the doctor was very reluctant to put me on meds for it....procrastinating for over a year. My blood pressure seems to be stable so I can keep a close eye on that. I have also been reading about the benefits of water fasting, which may allow me to reduce the meds.

Once again I am extremely grateful to you, and everyone who has taken the trouble to reply. This is the stuff the doctors don't tell you and it's important. I hope, in your case that your condition has stabilised and that you are well. Stay positive, keep us posted and don't lose that sense of humour 😊😊

[swimchic in reply to Irelandy]

Thank you so much! Hope you are doing ok now too! So crazy but I actually had a rough week with the kidney stuff and my dr had me come in for an extra appt and said he was thinking about doing a kidney biopsy!! Ha! I told him no way ... next option! He did say after chatting about it, that the risks outweighed the benefits for me, and we'd just do what we could through labs and other testing. Don't be afraid to speak your mind with your Doc and get the best outcome for you

[Irelandy]

Good for you! I got my next appointment for 11 October, and I have decided that I am not having a biopsy. I wonder what the nephrologist would say if you asked h to waive signing the waiver before the operation? I'll bet none of them would...and they're only talking about a claim on their insurance, we could be talking about our lives.

Another thing occurred to me, why when my doctor knew my kidneys were failing did he not request a biopsy earlier when the kidneys were in better shape?

[swimchic in reply to Irelandy]

Yaaaaaa. They definitely should have told you much earlier and requested a biopsy then. Sorry! But definitely just move forward with it is what it is. No reason to hold anger And sick to your guns with that no! Good luck!! Wish you the best

[CKD3B]

Biopsy to see if you habe kidney cancer ? You SHOULD NOT get a biopsy if you have a mass on your kidney. REMOVE the mass or the ENTIRE KIDNEY. Getting a biopsy can spread the cancer and it is almost ALWAYS cancer when you have a mass on the kidney. No reason to take the chance

[Irelandy in reply to CKD3B]

Thanks CKD3B, fortunately I do not have a growth on my kidney nor a suspicion of cancer. The nephrologist simply wants to get more information on the progress of my illness. I have already decided that I will not be having a biopsy and am building up a series of questions I need answers to.

[Irelandy]

I got some good news last week, my egfr increased from 22 to 26 tested early September. I have a neph appointment on October 11, hopefully we can find an alternative to a biopsy. My blood pressure has stabilised to about 120/80 and this may have helped. Still it may be a blip?

I would like to reiterate my gratitude to everyone who took the trouble to reply.....together we are stronger!!!

[Irelandy]

Hi there, well I went to see the Neph today and told him I did not want to have a biopsy. My latest blood results showed an improvement. He basically agreed with my reasoning, which was based on your replies, and said it was fine. Told me to keep on doing whatever I was doing and didn't need to see me for another 4 months.

A big thank you for all your advice 😁

[newbie1956]

So happy for you, Irelandy. I'm following you.

[Teshie27]

All the best Irelandy

I'm at 60 GFR, just had my 1st series of lab tests done. my 2nd neph suggested for a biopsy to be done - she said it would change the course of treatment once the cause gets determined. My 1st one was not very informative. I'm still getting opinions from other specialists from another hospitals

I know my condition is a lot better than most of ckd patients but I'm still hesitant