Kidney biopsy

[Sparker88]

My doctor thinks I have IGA Nephropathy and has scheduled a kidney biopsy for me. I’m a little nervous about it. Can others share their experience getting a kidney biopsy? Anything I should know?

[Mgt8]

Hi there,

I had one a while ago after my transplant and it went ok. I remember having to lay very still when it was done and afterwards, laying on my back for a long time It was kind of cool watching the screen and seeing my new kidney. I don't remember it hurting at all.

Wishing you well...

Mgt

[Sparker88 in reply to Mgt8]

Thank you!!

[miraclelady]

You will feel a little stick, but not bad at all. You do have to lay with pressure on the biopsied side for about three hours, then you are free to go. The hard part is waiting close to a week for results. Hope everything turns out great for you!

[Sparker88 in reply to miraclelady]

Thank you!!

[Okiksaints1955]

Is your doctor a Nephrologist?

I live in Singpaore and had a kidney transplant here - I have been with a very good Nephrologist for the last 14 years. I watch him grow to be a very consciencetious and progressive doctor. Before that (I was diagnosed +30 years ago), I've move from GP to Urologist to Nephrologist who weren't very good. They were masquerading as experts and have given me bad advices. After my transplant, I see the same chatter at local forms of mis-diagnosis. I beame an advocate - one was asked by his Nephrologist to be ready for a tranplant but when I asked more questions, he ended up changing Nephrologist. He is now undergoing more extensive tests for proper disposition.

When I moved to this Nephrologist (14 years ago), he tested me for 1 year before he did a biopsy. The purpose is to establish a baseline. I had another one 2 years ago to confirm progresssion/deterioration - to prepare for the next step/stage.

Biopsy is done outpatient - my Nephrologist did it. He extracted a very small tissue sample (for scarring and few test). I had to lie down still and not move to approximately 4 hours. And 1 day rest at home. I did not feel that much pain bit had to watch out for blood in the urine and for onset of fever. He discusses and explains extensively with me, making sure I understand. Of course, I also ask a lot of questions (I research a lot)

It is a necessary process but make sure it is done by a competent Nephrologist that you have properly vetted and trust.

It is an early stage of assessment. So good luck, take care and be well.

[Sparker88 in reply to Okiksaints1955]

Yes it’s my nephrologist who is recommending the biopsy. This is great information. I I really appreciate you taking the time to share your experience!! Thank you!

[Bet117 NKF Ambassador]

Hi Sparker,

Every hospital and set of doctors works differently.

In a nutshell, I was given an IV with saline as well as medication to relax me upon arrival.

Once wheeled in to the procedure room, I was given oxygen and attended to by a radiologist and a surgical nurse who followed me through the procedure.

I was given an ultra sound, then my surgeon gave me medication which numbed the kidney. I felt a pinch and a tad of momentary pressure.

I had no discomfort during the procedure, with and ultra sound, which was maybe 15 minutes if that.

Once the procedure was completed, my BP and other vitals were carefully monitored in recovery and I had to lay on my back for about two hours, being given a muffin, water and ginger ale as they wanted a urine sample before discharging me.

My husband was allowed to stay with me prior to and post procedure.

I did take a pillow with me in the car to cushion the ride home .

No dietary restrictions but I had to be flat on my back, rest and avoid heavy lifting for 24-48 hours. No discomfort after the anesthesia wore off.

My nephrologist called 3 days later with preliminary results and 7 working days with the final result.

I am a Membraneous Nephropathy patient which like IGAN, is an autoimmune kidney disorder, so I understand what you are facing.

No procedure is pleasant, but important as a clear diagnosis allows for the best health action plan going forward.

There are several IGAN patients in this community as well as myself with a similar diagnosis.

Stay positive and reach back to let us know how things went and the outcome.

I promise you lots of support.

Bet

[Sparker88 in reply to Bet117]

This is such great information. Thank you! I love the pillow tip. I was going to ask if my husband could be with me before and after the biopsy so I’d good to know that’s not an unreasonable question!

[Bet117 NKF Ambassador in reply to Bet117]

Sparker, No thanks ever needed.

It will all be good and over before you know it.

Focus your husband waiting for you and your team here cheering!

Bet

[Aaashiii in reply to Bet117]

Hi Bet, is it true that there i s no cure for IGA nephropathy?I am also diagnosis 2 years back - i been on steroids', see improvement but as soon as i stop or reduce the quantity it Blood creatinine goes back to higher level.

[Bet117 NKF Ambassador in reply to Aaashiii]

Hi Aaashiii,

In response to your question, unfortunately there is no cure for kidney disease but with diet, exercise, monitoring and medication the goal is to keep it in check and prevent progression.

Having an autoimmune kidney disease such as IGA is a bit trickier than just CKD.

Like Membraneous Nephropathy, IGA neuropathy is caused when an antibody called immunoglobulin A builds up in the glomeruli or filtration system of your kidneys and yields an inflammation that causes your kidneys to leak blood and protein into your urine.

Because this is autoimmune, it is important that you try to stay as healthy as possible as well as avoid foods like sugar, which causes inflammation.

Have you spoken to your nephrologist about the protein spilling and what medications other than steroids may be given to you to help control the symptoms that you are experiencing?

Keep an eye on your creatinine levels, GFR, BUN, albumin, ACR, protein , creatinine albumin levels, sodium, phosphorous, potassium, calcium, and CBC levels.

My thoughts: print out a copy of your labs prior to each appointment and check off any area that may flag high or low based on the range next to your results and discuss them with your doctor.

Ask questions and jot down responses.

How is your diet? This is so important.

Are you on a low sodium; 1500- 2000mg per day, low protein diet, which avoids red meats and uses eggs, egg whites, fish, skinless chicken or beans as better choices?

Do you eat lots of fresh and fresh frozen vegetables?

Steam, roast or grill cabbage, onions, peppers, cauliflower, zucchini and yellow squash with non sodium spices.

Are you avoiding all processed meats and canned soups?

Potassium and Phosphorous are also vital to watch; no dark colas, minimal dairy and light wheat breads.

Are you adding in cereal such as Cream of Wheat which is high in iron as well as fruits such as blueberries, strawberries and apples?

If you haven't already, ask your doctor for suggestions and a referral to a renal dietician who will look at your labs and make food suggestions which are healthy and appetizing as you also may want a list of suggestions that do not cause inflammation.

These are all key points to controlling the disorder.

Each person is different, so first line of discussion should be with your doctor

as to what you can do to address this. Give him/ her a call and see them.

A lot to take it but it all comes together as it is a process.

I hope that I have been of some help.

Please reach out again and let me know how you are doing. I care.

Bet

[Aaashiii in reply to Bet117]

Thank you so much Bet for your kind information and guidance. INDEED A GREAT HELP!!Its been 1 year and 9 month i am taking deltacortril 5mg.

My B creatinine is 1.6. it comes down to 1.2 as long as i take full doze ( 4 tablet of 5 mg), as soon as it is reduced it starts going back to same level.

I am also loosing protein in Urine, 1540 mg is todays' for 24 hr urine.

4 months back my doctor replace 2 tablet of steroid with Myfortic 360. I have been taken 2 myfortic (phenolic) and 2 deltacortril - my blood creatinine was 1.3 as doctor reduced to 1 tablet of myfortic and 1 deltacortrail it is back again to 1.6 after 4 months.

I am also taking Eazyday 50 mg and calcium blocker 60 mg along with tablet to control cholesterols.

Apart from Creatinine and protein all tests are okey. However, i would like to mention that 3 years back i was diagnosed celiac dieses.

Thanks for the idea about diet - i am totally blank on this matter even my doctor do not emphasis on diet only stopped the red meat.

Thanks for the idea about sugar - normally i take too much suger.

low sodium; 1500- 2000mg per day - would appreciate how to make the idea of sodium quantity in my food in terms of spoon.

egg whites, fish, skinless chicken or beans as better choices?

yes I take a lot of vegetables.

Thank you so much for your time to response.

👍

[Bet117 NKF Ambassador in reply to Aaashiii]

Hi Aaashi,

Gosh no thanks ever needed. Having an autoimmune kidney disease is challenging as so many things can influence it and cause a flare up.

I will look up the medications that you are taking as they are unfamiliar to me.

I use Drugs.com which is excellent. I have the APP on my phone so all I do is plug in the information. It explains it and identifies possible side effects as well as mild, moderate and severe drug interactions.

They also have a place where you can enter your medications and it will advise you of. interactions.

Your nephrologist is on target for requesting a 24 hour urine sample. Mine does the same. They consider it a gold star marker among nephrologists as it is an average of 24 hours rather than 1 spot test.

The protein spilling is frustrating. I know.

I would ask for a referral to a renal dietician who will be able to give you food choices and quantities which are nutritious, appetizing and helpful to kidney patients and specific to you.

Bring your labs with you as they will use them as a guide. If your potassium is good, they may recommend more plant based sources of protein and help you with the sodium.

I don't add any salt to food or cooking and am very mindful about reading labels. If that's a help.

As far as the celiac disease, it doesn't surprise me as it is also an autoimmune disorder, so great idea to meet with a dietician for ideas and guidance.

I would also send a message to my friend, Zazzel, who is also an IGA patient and responded to you below.

Touch her icon and it should bring you to private message. She's the IGA house expert on food allergies and can possibly give you some ideas as to keep them both in check.

Remember that it is all a process and every day you are adding to it.

Please reach out again as I am happy to speak to you and support you. We are all in this together.

Bet 😊

[Zazzel in reply to Aaashiii]

Hi Aaashiii,

Bet has given you some great info. below. In addition, If you are on Facebook, there are several really active and great groups to join that are strictly IGAN. You can also visit igan.org a website dedicated to research and the latest findings regarding IGAN. You might also check out the website plantpoweredkidneys.com/ for some great tips on plant based diets for kidney disease. There is also a Facebook group run by this website called Plant-powered kidneys. Let me know if you have further questions. Feel free to private message me. I was diagnosed with IGAN in 2016.

[Aaashiii in reply to Zazzel]

Thank you so much dear Zazzel - for sharing a great helpful groups, websites

[Jayhawker]

I had a biopsy in late Aug of 2013. My experience was fine. I have no memory of any pain at all. I stayed in the hospital for four hours after and was monitored closely (BP etc) to assure I was experiencing no internal bleeding.

I rested laying on my back in the hospital and after I got home. Absolutely no problems. And, I’m a single person who lives alone. I went home and stayed alone without any problems after. That was approved by my nephrologist.

Jayhawker

[Sparker88 in reply to Jayhawker]

Thank you so much!

[AndrewT]

Dear Sparker88,

I have had two Kidney Biopsies, one Many years ago, after I first had Blood In my urine.... and the Second about a week after my Transplant- way back in July 2013.

The procedure is relatively Simple.... you are lain on your back and a long Needle is pushed into your Kidney, to remove a few 'Bites' of Kidney. It doesn't hurt significantly, maybe a little Spasming, as your Kidney 'Reacts'. Thereafter you have to remain, COMPLETELY STILL, for a few hours.

The Biopsy, on my Transplanted Kidney, was a 'little' different since I was already an 'In Patient'. I still had to remain 'Flat; for some time, which was Harder- in some ways- as ha been able to Walk for some days......

So 'Fairly Quick And Not Too Painful' sums, this procedure' up well. Either arrange to use The Hospitals 'own' Entertainment Package(s) or take in, your own.... you Will Need It afterwards. (There is only 'so long', you can Amuse Yourself, counting the Vents in the ceiling, the Oxygen Pipes Across he Way, How many 'spots' on your Hospital Pyjamas?)

You will be Fine Sparker but, if you do have any Further Questions, please feel free to contact 'Any Of Us Again'.

AndrewT

[Sparker88 in reply to AndrewT]

Thank you! I didn’t realize how long I had to lie on my back for so I’ll inquire about the entertainment!

[Ziggydoodah]

Hi Sparker

The worse part of the biopsy for me was the before and after!! Worried sick about it, then having to lie flat on my back for 12hrs (as per my hospitals protocol, think its only 6hrs, everywhere else!) The actual biopsy was fine and I felt no pain. I hope everything goes OK. My advice if you do have kidney issues, start adopting a healthy lifestyle NOW. Wishing you all the best xx

[Sparker88 in reply to Ziggydoodah]

Thank you! Since I’m so new to this, how do you define a “healthy lifestyle”? I know what that means for someone without kidney disease but what does that mean for someone with it?

[Ziggydoodah in reply to Sparker88]

With kidneys you need to be careful with potassium levels etc. There is a lot of information regarding diets on here and other websites. Im not sure where you live but if its the UK, I would also sign up to Patientview if its available. It keeps a record of all your results, so you can check data at your own leisure. My biggest tip however is use this website. There are many knowledgeable people here (im definitely not one!!!). For many people it has been a lifeline, when they have needed information or just reassurance. Anyhooo I hope your biopsy goes OK and your kidneys are fine! X

[Sparker88 in reply to Ziggydoodah]

Great to know. Thank you again!!

[Bet117 NKF Ambassador in reply to Sparker88]

A healthier lifestyle means making food choices which are not only nutritious, helpful to folks with kidney issues but also appetizing. It means drinking more water, not smoking, adding in a bit of exercise and being grateful for family, friends and the break of each day.

To start! 😊

[JaimieL]

It was very easy. You’re not asleep but you may as well be. The only thing I felt was a quick pinch and could hear the doctors talking in the background. Takes about 15 minutes. Then you have to wait in the recovery room for 3 hours while they wait to make sure you are not bleeding. I was fine afterwards. The only pain I. The butt was that it was sore for a few days after but I was stupid and went right back to work the next day. Take at least one or two days to just relax at home afterwards.

[Hawaiilover]

I had a kidney biopsy 1 1/2years ago as my Nephrologist was puzzled as to why I was having decreased kidney function and was diagnosed with IGA Nephropathy, I was very nervous about the procedure as it was done in the hospital setting. My blood pressure spiked so they had to give me multiple things to lower it before proceeding and then they took me into the room, got me on my side and told me to lay still. Next thing I remember they said I was all done. I slept through it. Some pain afterwards and was to take it easy for a day, but you can't even notice the site where they entered to do the biopsy. I had to wait almost 1 month to get my results as they sent it to a lab in another state for most accurate diagnosis and then my doctor was out (that was even more nerve racking waiting for the results)Since then my GFR has continued to drop gradually despite me being active and watching what I eat. It is good to finally know the reason though after so many years of not knowing and I can prep myself mentally & physically for whatever is next. I wish you all the best!