Kidney Biopsy yes or no?

[dizzydi]

I have read so many posts here and there where some have rejected a kidney biopsy. Now with the kidney function dropping to early 20's is it advisable to get one or get one done if the function is at higher numbers? Can you be forced into getting one done? I know this can be a good thing to find out what is going on etc but I know there are risks as well, even though they say they are minimal. Any info please, thank you so much x

[Missyclare]

Hi there, I don't think anyone can force you to have a biopsy and understand your concern. Here is my experience, I was 18 with high kidney function but proteinuria when my dad advised me not to get the biopsy I was offered. I lived my life until my kidey function was 50gfr, 12 Years later, at which point I was offered a nuclear scan where you are injected with a radioactive dye that accumulated in the kidneys and then passes out in your wee. I had that scan even though I was worried. Finally I knew what was wrong with me. Have you had a nuclear test before? Maybe this would be an option for you. Have you researched what other tests may be out there? I wonder what your doctors reasoning is for offering biopsy over other tests. X

[dizzydi in reply to Missyclare]

Thank you. No I do not know of other tests apart from the scan which i assume is another ultrasound, i had one over 2 years ago and because my kidney function came down from 29 to 23 and Cr 200 there roundabouts she wants to find out what is going on. However that drop was over approx 6/7 months. She also wants me to wear 24 hr monitor cos of the blood pressure always sky high when i attend her clinic, mind its the same at any appointment at any medical setting, and yet they are better readings at home. The other test is for behind the eyes by having a dilation test because she said it all bp related. I will ask about other choices, thanks again for the info x x

[Nicolala]

A biopsy was the only way to officially diagnose my condition. They are uncomfortable, but bearable. The risk is bleeding afterwards, but you will be on flat bed rest and monitored carefully. If you are worried, speak to your consultant. What will it tell them. Is it just to confirm what they already know or do they consider it ito be necessary? I've never heard of anyone refusing a biopsy, but it's your body.

[phillen]

If it helps to find out whats causing the drop in function & they possibly could do something to stop it if theres that chance its worth having if offered, they don't do these tests for no reason my husband has never had or been offered one but had plenty of other tests possibly because they already knew what caused his! x

[SRN1969]

My brother in law was told that tests that involved injecting dye into the kidneys can be very dangerous for some kidney conditions. He has a CT scan without the dye to check his kidneys. Having the kidney biopsy if offered would be the safest bet with low kidney function.

[Keithtim10]

My Experience at St James Leeds Renal Unit some 18 months ago when diagnosed with Wegeners was that i had biopsy to confirm how much my kidneys were scarred with it iand i had simillar GFR but lower.Now i am on the long road as it were i have had one relapse 6 months ago but now on rituximab and having second batch next month but i am doing ok under the circumstances.I am glad i had Biopsy because it helped clear things up.

[dizzydi in reply to Keithtim10]

Thank you x I hope they put your mind to rest. The neph said as long as all goes well after 6 hrs and no bleeding then i can go home but before they actually do the biopsy they have to make sure my bp is fine, now that is my problem it rises as i suffer with medical setting whitecoat (whitecollar) syndrome, where mainly at home my readings are fine and medical settings they are awful x x

[Hidden in reply to dizzydi]

My partner has high blood pressureand had the biopsy he was up and about before the 6 hours. They just moniteredhis bp during the procedure and after.

[dizzydi in reply to Hidden]

Thank you so much. I suffer white coat syndrome UK and i think they call it White collar in the US, so my bp rises at any medical setting, my anxiety kicks in so badly. Even though my neph suggested the biopsy she also said they have to make sure my bp is stable before they do this, so i hope i dont get worked up when there. Hope the outcome was a good result for your partner x

[Hidden in reply to dizzydi]

Have you tried meditation get a guided meditation on your phone or player and listen it before and for as long as they let you. It can help a lot

[dizzydi in reply to Hidden]

Thank you x Funnily enough i started on the meditation the other day and been having a go since then and i feel its starting to help me x

[Crinkster]

Have you tried a sonogram yet? I do one of those before you try a biopsy. You didn't say Specifically why your doctor wants to do one. Is it that you don't know what caused the CKD in the first place? Sounds like your stress is a major contributor. I would try to get that under control before anything else. Any type of surgery has risks. I wouldn't undergo one unless it was absolutely, positively necessary. Too many doctors are eager to cut. I think a conservative approach is always better. There are so many other non-invasive ways to get proper diagnosis. I would explore every single one of those first.

As far as your other post regarding meditation, I would strongly urge you trying it. I use an app on my phone or iPad on which you can decide on a variety of guided meditation's. It also allows you to choose several different sounds in the background, whether music or nature sounds ( Ocean, stream, birds, etc.) this particular one is called iSleepEasy. It's free and I really like it. You can also design your own meditation with it by mixing and matching, making it as long or as short as you want. I use it every night when I get in bed to help me relax from the stress of the day. I'm sure it would help at different times of the day, too.

Good luck!

[dizzydi in reply to Crinkster]

Thank you Crinkster for your really helpful feedback, I am so grateful. I was diagnosed with CKD then stage 3 in 2012/13 and I had an ultrasound back then which shown scarring and because of many water and kidney infections when younger they put the diagnosis down to Famillial Reflux nephropathy (excuse the spelling), one kidney larger than the other.

However a recent drop from 29 to 23 my Dr neph said she was concerned of that drop over 6 months and wants to see what is going on and she is aware that I was asked about a biopsy back in 2013 and at the time i did refuse this, so that is when then i had the scan as stated above of the diagnosis.

The last time i was asked before this was with the actual Professor Neph and this time it was the Dr Neph, she said I SHOULD have one and i told her my concerns and then she tried to ease me by saying its a simple procedure etc, but reading more into it i can see it is risky especially with high blood pressure which i do tend to suffer at medical settings.

I do have another ultrasound scan coming up this coming Wednesday so hopefully that will come up with the answers we are looking for, so i assume depending on the scan results there will be a biopsy, such as if they cannot find issues then to have the biopsy but she did say that i should strongly have it done, but i am worried about it with the anxiety i suffer with.

I am also waiting for a letter to have an eye dilation test to check behind the eyes which can cause damage from high blood pressure, so that is another test, hoping to have some anwers.

My CRP levels were up a little from the blood test which as you know can mean an infection or inflammation going in the body somewhere, it was only borderline high so i feel if this is the case then maybe this was the cause of the function dropping quick, and I will be asking for a re-test on that one too.

Brill info about the mediation thank you so much. I been having a go over the last few days and feel like i am getting somewhere, i just need to keep up with that now.

Finally, I have read about the nuclear screening as well, that some have these tests and it does not sound as harsh as a biopsy, but this is also new to me also.

Thank you so much x

[Crinkster in reply to dizzydi]

Good luck with the sonogram. I recently found out that she KD patients should have one every three years. Often the nephrologist neglects to order these. I recently saw a sign in his office which led me to ask him for one. It showed that my kidneys were abnormally small. I only had one before this and was never told anything about the actual size of the kidneys.

There's a really good possibility that a slight infection could have caused the drop. There are other possibilities, too. I would take a close look at your last lab results. See what was out of range,checking especially for your potassium and phosphorus levels. Also take note of your sodium level. Those things can absolutely be improved through diet.

One other possibility is dehydration. At our levels, my nephrologist recommends 2 to 3 L of water a day. This is one of my problems since I live in and arid hot environment. I tend to not drink enough water in the winter because I'm not very hot. (The highs ave 60F/15C.) At this time of year, I already feel myself getting dehydrated, because the temperature is pleasant ( 90°F/32°C). But the humidity is only about 15%. If you're thirsty, you're already dehydrated. Dad can have a devastating effect on your GFR.

I was in the hospital for a non-related illness a couple of years ago. I wasn't on IV fluids and a nurse alerted me to the fact that my GFR had dropped 20 points in three days. It's not something any of the specialists who came into see me informed me of. I am mediately asked for a nephrology consult. She was furious that I hadn't been on fluids because they knew I had to CKD Within two days, my numbers bounced back.

[dizzydi in reply to Crinkster]

Sorry to hear what you went through, that was dreadful what they done at the hospital - not good at all bless you. So glad you were sorted and that your numbers bounced back up.

All my labs like sodium/potassium/calcium Phos etc are in range, just the CRP out a little touch, thankfully I receive my results online so i try to keep a good check on them.

I drink lots of water but maybe not enough, but i also drink non sweetened cranberry juice. But I do drink tea not much of it because I know it can cause a strain on the kidneys.

I stopped salt, mind never been a lover of salt and eat plenty of fruit and veg but i did go through a naughty day back some weeks ago at party buffet, it was a one off

My husband is baffled on why i should be made to have the biopsy, he was with me each time, even when the first neph the professor who asked me about it back in 2013 about one and didnt blame me for not wanting one back then and yet this Dr neph strongly suggests i have one. Hopefully i will be seeing the professor at my next appointment in few weeks time, as i feel he is more understanding. I am hoping for answers after my coming scan in hope not to go as far as the biopsy, and maybe ask about the nuclear testing which I assume they can also offer.

Hope your levels are at least stable for you Thanks again x

[Becks26]

Hi Dizzydi, just wondering if you ended up going for the biopsy in the end? I've been booked in for an urgent one on Tuesday after my first consultation with my nephrologist yesterday. I'm 26 and after having preeclampsia in pregnancy I was told I had severe kidney damage but that was that! 11 months later and I'm being told I have stage 3 CKD, glomerulonephritis and they're also testing for cancer because of some of the symptoms I have not adding up, and my GFR has dropped 20% in 2 weeks, all a bit mental but the biopsy will confirm all! The thought of the procedure makes me cringe but I personally think the benefits of it outweigh the risks hope you're doing well x

[dizzydi in reply to Becks26]

Hiya Becks26.

My professor put it off for now as the ultrasound scan confirmed the same issues as i had almost 3 years ago, scarring and reflux kidney, he said no need at this point and my function almost the same, the Creatinine however came down by 13 points so now at 207 (UK reading).

I am sorry to hear what your going through and i really hope they find a solution for you soon my lovely, your so young and I can imagine how scared you must be feeling.

Have they also offered any scans to you at all? Maybe this will be a start to give them an idea of what may be going on. Aww I do feel for you and hope they find there are no cancer issues, but seems like they are acting quick in order to treat you for ASAP.

If you wish and if you not done so yet, maybe start a new fresh post where others maybe in the same situation so they can offer some good advice to you my lovely.

I am wishing you well and hope it all works out and goes in the right direction for you and I'm sure it will. Are you in the UK or USA etc? Thinking of you sugar xx

[Becks26 in reply to dizzydi]

Hi Dizzydi,

That's a relief for you in a way at least you didn't have to endure the biopsy and the scan gave you the results you needed! Hope you're feeling ok and doing well considering the reflux kidney

I've had an ultrasound scan a few months ago but he was a trainee and kind of told me he wasn't sure why I was having it done so nothing came back on that haha but I am having a CT scan to see if that can shine any light on the situation!

Ahhhh thank you I really appreciate it, I've created a post but not had much feedback yet. I guess I'll see what the results say and take it from there

Thanks for your help and advice! I'm in the UK, are you UK or US? Xx

[dizzydi in reply to Becks26]

Hi Becks26. aww thank you my lovely, well lets hope you get the answers you need soon and I am wishing you all the best.

Yes I am in the UK too South Wales xx