Biopsy or not?

[tas1kubra]

Hello everyone

It has been a month since I learned about my CKD. I have stage 3b, my creatinine levels are around 1.6-1.7, and my eGFR is around 40.

Today I have had an ultrasound, and I have been told that biopsy has higher risks in my case. Honestly, doctors said to me that there are much higher risks and I might even lose my kidney. Also, they told me that a diagnosis may not be set due to corruption in my kidney tissue (because of the disease).

I wanted to get your opinion; what was your experience? Did you experience any bleeding on your kidneys, or faced with any kind of risk? Or did you have to go through with the biopsy a second time?

I am both scared, and out of options. Because I know that the doctors need this sample so that they can make a diagnosis. I am looking forward to hearing your comments!

Thank you sincerely

Update on my Biopsy:

Thank you all so much for your shares. I have had the biopsy, after discussing it with 3 different doctors.

During the operation, they did two biopsies. I hope they can make a diagnosis.

But I have had a risky situation indeed. My bleeding continued for almost 10 hours. They were on the edge of an operation (angiography or surgery in the kidney) but thank god after 10 hours I could get better.

The procedure was not that horrible but the part after that was hard. I am having pains and I visited ultrasound for 4 times, and a tomography one time. Traveling this much on a bed in the hospital was not the best part of my day. But I am so relieved that no operation is necessary right now.

From this point I am expecting my diagnosis. I am not sure what I do if doctors can not make a diagnosis based on the samples that they took.

Thank you again so much, feeling your support is remarkable on my motivation.

--Kubra

[Denise-80]

Hi - I’m so sorry you are going through this…and I pray they figure it out real soon. I had at least 3 biopsies on my native kidneys and one on my transplant within 2 days following surgery. I don’t recall any issues with the procedure, but it has been a while for me. I generally remember pain and issues, and I don’t recall any. Please keep us posted.

[tas1kubra in reply to Denise-80]

Hello Denise-80

I hope one time would be sufficient because I am in the hospital for 4 days now for the biopsy operation. I am so overwhelmed with my disease, risks, and so on. I hate it lying in a hospital bed when I am feeling completely fine.

Like that's not enough, they finally decided to make the biopsy, but let me know that it's risky and may not be sufficient for diagnosis.

God knows that I have really little patience left in me. I want everything to be over, but I am scared at the same time.

[Denise-80 in reply to tas1kubra]

Hi Tas - I just edited my response above. My “at least” 3 biopsies on my native kidneys was over a 20 year period.

[Sarah_402]

Hi tas1kubra, I had 1 kidney biopsy to diagnose but I didn't have a higher risk than anyone else as far as I know. It was an uncomfortable procedure and it took at least a week for me to feel normal. I didn't have bleeding and was given an IV medication right after the biopsy to help reduce bleeding risk. This is a hard position to be in. Did your doctors explain why you have a higher risk and if they think its worth the risk? Do you doctors have any idea what could the cause be without doing the biopsy? Any common risk factors for kidney disease like diabetes, family history, blood pressure issues?

[tas1kubra in reply to Sarah_402]

Hello Sarah

I have no common risk factors such as diabetes, or high blood pressure. In summary, they tell me that because of CKD, the parenchyma part of the kidneys is thinner than in normal people. As the result, the tissue may not be enough for diagnosis.

I have talked with three different experts, and they do not make any advice but tell me that without a biopsy, there would be no way to decide what to do next.

I will go through with the biopsy today. I let you know tomorrow what will happen.

[Sarah_402 in reply to tas1kubra]

Good luck today tas1kibra, I hope you get the answers you need and your doctors will be able to treat your condition. The biopsy was not as bad as I thought it would be. I hope all goes well today.

[Marvin8]

I would suggest getting a second opinion as to whether a biopsy is absolutely necessary.

[Ziggydoodah]

Hi tasI'm sorry this is happening to you. You are having a really rough time. I have had one biopsy at the beginning of my diagnosis. It was totally painless. The hard part was lying flat on my back for 12 hours, as part of hospital protocol 😳. That for me was the worst bit. My biopsy results were so unusual, my consultantant had to send them to colleagues in England for advice. Seven years later, they still can't make sense of my results. They wanted to do another one about 2 years ago but I refused. I don't know about other countries but they seem to just follow the same protocol no matter the type of kidney disease. BP medication and a course of high dose steroids . After you get your biopsy results, get a second opinion. Sending you big hugs xx

[tas1kubra in reply to Ziggydoodah]

Hello Ziggydoodah

Thank you for your share. Here, I think I will lay down for 6 hours in case of a bleeding.

The more I wait, the more anxious I get. I have been always terrified of biopsy. I am impatiently waiting for it to be over.

[Ziggydoodah]

The thought of the procedure is a lot worse than the procedure its self. There is no pain. You will feel an unusual sensation as the biopsy happens but it certainly isn't painful. Its over in seconds. Its just all the prepping of the area that takes up the time etc. You will be fine. We will be thinking of you xx

[Rmatthew]

Hi, really sorry you’re having to go through this, I got a biopsy last year, but it was on my transplanted kidney, so I’m not too sure if it’s different? I had an okay experience, apart from lying down for 6 hours on my back afterwards got uncomfortable, it only took around 15-20 mins, and everything was numb so I didn’t actually feel it, but seeing the replies on here, I think it must be a different situation for your own kidneys, I hope you get everything sorted and and are doing well soon, sending my love.

[Okiksaints1955]

Let me just summarize1. Your results are "normal" for stage 3b.

2. You do not have underlying conditions associated with CKD.

3. You were told you need a biopsy - but I am not clear on what is the reason for such conclusion or need

Biopsies are precipitated by other conditions (bad results of lab tests, blood in urine, etc.). It is exploratory, invasive and normally one that nephrologists take very seriously. So:

- you should ask your medical team why they require this. Get all the answers that will satisfy you that you need this.

- Otherwise, get a second opinion - from a reputable and the best (you can find) nephrologist.

I have done a couple of biopsies, the last one +5 years ago when my creatinine shot up about 100 basis points. The results only showed old scarring and did not help (aside from confirming what we already knew). Done day 1, out day 2. Did all the precautions (lie in bed with no movement for at least 12 hours, no exertion for at least 1 week, etc). It was non-eventful.

Hope this helps. Take care and I hope you find your answers.

[RoxanneKidney]

Don't do it. There are plenty of other non invasive tests. If you haven't changed your diet and all that too, better get on it.

[WYOAnne NKF Ambassador]

When I was first diagnosed with kidney issues I was sent to a major hospital in my area to have tests done. I had no other health issues. I had a renal arteriogram to see if I had a blockage in one of my kidneys. When all was fine with that, they did a kidney biopsy. An ultrasound showed that my R kidney was larger than my L. So the biopsy was done on the healthier looking R kidney. After the biopsy was done they had me lay flat, couldn't get up for 2-3 hours. The idea is that it would prevent bleeding. All went well.I think a lot of times it is helpful to your doctor to find the cause of your CKD. It helps to know how to treat your CKD. I have FSGS. They traced it back to a strep infection I had at age 9. 2-3 months later I was in the hospital with a nephritis. Doctors said it reoccur later in life. 30 years later my kidney function was at 50%. 7 years later I had a transplant. I am now almost 23 years post transplant.

I think doctors are required to give you all of the warnings of having a biopsy done. It is common to have some bleeding following the procedure. Most doctors will tell you that it is a safe procedure.

For me, I wanted to know the cause of my kidney failure.

Everyone on this site has their own opinion regarding the test. Only you can decide.

As someone else suggested, maybe you need to get a 2nd opinion from another nephrologist.

[Sophiebun11]

Hi,

Sorry you're scared and confused about what to do.

Typically, a biopsy is done when the Nephrologist isn't sure of the cause of your CKD.

If you have Type 2 Diabetes or hypertension or an autoimmune disease or are on medication that is lowering your eGFR then a biopsy is not needed.

My Neph told me that a biopsy wasn't worth it because it wouldn't show anything he didn't already know so there was no point in putting me through it.

If the cause of your CKD is a mystery, then you will need to have a biopsy to help diagnose the cause.

Best wishes.

[Hidden]

Wow! I am so sorry, you have been through so much, no disrespect but after reading all of your posts, if I were you I would seek a second opinion, your Dr has put you through SO much, (esp FEAR!!) maybe it's time to see what someone else has to say. FWIW, I would say the biopsy was not necessary.