My condition in brief: 30 Y. Creatinine at 2.4 with and EGFR at 36. No symptoms. Proteinuria leak at 1g. Stage 1 hypertension. All other organ parameters are fine. As of now its CKD with unknown origin.
Nephrologist suggested biopsy. I have an idea of what it is but trying to get some feedback from all of you. Dr. says it will help pinpointing the root cause though I may or may not have new medications if they found out root clinical cause. Currently I am ARB's(40 mg) and Calcium channel blockers(antihypertensive drug 5 mg).
I dont know if its worth getting it done or not. Trying to avoid a procedure unless its needed.
Potential suspect: IGA nephropathy.(biopsy is the only thing that can confirm this)
My questions:
1. did biopsy help you? any complications? I read it may cause hematuria.
2. does addition of medication after finding root clinical cause help slow progress of your condition? anyone personally seen this.
3. anyone who got the procedure done for a small sized kidney(like 8 cm)?
4. anyone who didn't go through biopsy but managing the condition as it is?
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kanna089
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The words biopsy are as scary as a dark night. I know as I have been there.
Based on what you have written, your nephrologist has taken a pro- active approach to the proteinuria and your health by giving you the ARB which is the first line drug to eliminate proteinuria as it also takes pressure off the kidneys and controls BP.
A biopsy is intimidating but it will give you a definitive diagnosis as to what you are dealing with as its a tissue sample that is examined; therefore how to best treat it.
To my knowledge, and I'm not a medical professional, a biopsy doesn't cause hematuria. That would come from the tiny clusters of looping blood vessels; each is called a glomerulus, or glomeruli.
After a biopsy bleeding can occur but it is infrequent.
I was totally
A-Symptomatic with no diabetes, high BP and normal kidney function and electrolytes, calcium and CBC when protein was found in a routine urine test.
I was sent to a nephrologist after the test was repeated, and microscopic hematuria was found. Despite my being a vegetarian and on a base dose of BP medication, a CT, the proteinuria climbed and biopsy was the route.
I was well numbed as well as lightly sedated. I felt slight pressure, was monitored after and sent home to rest. No bleeding no pain.
I was diagnosed with Membraneous Nephropathy, an autoimmune kidney disease in the same family as IGA within a few days.
So no more debates and a medical action plan was set going forward.
Once your nephrologist knows exactly what he/ she is dealing with, it makes the situation easier to treat. It may involve monitoring, additional medications, diet/ lifestyle changes etc.
Every person is different with different heath issues, needs and responses to medication.
If in doubt, speak to family and don't hesitate to meet with your nephrologist again.
Kidney disease and getting it set to stop progression is a process that takes time.
Think positive. Please feel free to reach out at any time if I can be of any support.
Thank you so much for sharing Bet117. Appreciate your response. I am still thinking about it and glad to know it worked out well for you in terms of finding the root clinical cause.
No thanks ever needed. If I can be of support, I am happy to do so.
I know that this is a tough call. As you can see, many of our members have shared their thoughts and experiences with you as I have.
Actually, I tend to agree with citruskayer about getting another opinion
Now that I think about it, I did get a second opinion on the protein spilling at the time.
The irony is both the nephrologist that I was seeing and the second opinion called me a day apart and recommended biopsy as my protein spilling had risen to the level that a specific cause was needed. Remember that I had a negative CT and Cystoscopy prior.
I had the biopsy done at hospital that my nephrologist was affiliated with.
A thought would be to take your present labs as well as be prepared to leave a sample and get a second opinion and go from there.
It's not an easy decision but if identifies the problem and helps initiate the best treatment plan possible, it's worth it.
Give it some thought and feel free to reach out again.
Chances are very good that the neph wants to do a biopsy because of your relatively young age. I was diagnosed at 56 but with no protein leakage. He didn't feel that there was much to be gained by a biopsy, especially since I'm in good shape otherwise. Fyi, my kidneys are small-ish as well. The real question to ask is how would the course of treatment change as a result of a biopsy. My neph said it likely wouldn't change anything.
Thanks Ashok5085 and WYOanne. One doctor(1st neph ) mentioned that Biopsy is risky for a small size one but the other doctor(2nd Neph) feels it can still be done. I certainly like to know the WHY! but thinking a bit more carefully due to size. Its a size of 8 cm which the current neph (2nd neph) says they can still do it.
In my opinion, you should ask another specialist this question. This may or may not be helpful and you need someone to explain the risks vs the rewards for proceeding. No one can be certain, but it would help if they guessed what the odds are for it to be beneficial. Is it 50/50 or what?
thanks Citruskayaker. i am thinking to ask another neph. As of now, risks are like procedural risk in terms of infection during procedure or bleeding. They may find out root cause but not really change any treatment or anything. As in medications may remain the same.
Hi, When I first started to see a nephrologist, other than my declining GFR-51/ high creatine and taking BP meds I was physically fit, active and no other health issues. I asked him why this was happening , what caused this and what could I do to keep it from worsening. He couldn't give me an answer and said I could do some diet changes and keep active & hydrated to slow the decline. He talked about biopsy as an option but didn't think it would tell him anything different or change treatment, so I declined at that time and just watched diet, hydration and exercise. After 10 years, my kidneys declined to the point of GFR 25 and he suggested maybe we should do a biopsy( won't change treatment , but we'll know why the decline) so 3 yrs ago I had a biopsy.No complications and found out I had IGA Nephropathy. At least I had an answer to the cause( which helped me process what I was going through) and was told there is no way to stop the decline and that someday I'd need a transplant but continue to watch diet, hydrate and exercise to help slow it. Well, here we are today and I am 6 weeks post surgery Transplant. Doing well so far and I can't believe how much this has changed my overall health in this short time. My numbers are almost all normal( except white blood count is low) but they say that's normal because of immunosuppressive medications. The biopsy would be a decision between you and your doctor. Best of luck.
thanks hawaiilover. As I read through the answer, your case and bet117 strike a similar pattern to what i maybe going through. I too am physically active with no other health issues. The Doctors are unable to give me an answer as well. The suspect IGA Nephropathy as well but can only confirm with biopsy. I am still thinking about this and maybe get it done later or something.
Glad to know biopsy went well for you and you are doing good after transplant.
Kanna089, I’ll share my experience. At 44 years old I found out my eGFR was in the 40s. Because I was younger, my doctor offered me the kidney biopsy. I was diagnosed with a acute tubular injury, due to low blood pressures (from another medical condition I have). Because this was not caught early enough I now have scarring and have chronic kidney disease. If I had not done the biopsy, my doctors would not have been convinced my blood pressures were the cause of my kidney problems. Now I’m on medication I should have been on long ago.
I looked up your suspected diagnosis, and it seems you possibly could be helped by steroids, if you have it. Have your doctors suggested steroids if that is the cause? I say this because perhaps there is a treatment option, but I’d ask the doctor if that would be his plan for that condition, and if steroids even help. Assuming this is the case, the biopsy could be helpful. But this is all hypothetical.
The biopsy itself is not that horrible. They numb you with lidocaine, which does involve a needle. That was the part I was not a fan of. I believe I was offered some Valium before, but I declined. They use ultrasound to guide them to the kidney and they take a few samples. Afterwards you have to lie there for a while and I was given an IV medication to prevent bleeding. Then I went home. I was just sore for a week or two. I believe I just needed Tylenol. I had no complications. After about 2-3 weeks I got a result.
The other good thing to know is how much you are going to have to pay for the procedure. Its not cheap if your insurance will not pay.
Personally I don’t regret getting it done, because I wanted to know what was wrong and I did end up getting treatment. But I see what your saying, that it may or may not help you. And that would be really disappointing and expensive if it did not help you. I get your dilemma. I hope this was helpful, good luck on your decision.
thank you for sharing Sarah_402. Learnt a new term about scarring. Didn't think about that before. maybe a good question to ask the doctor on my followup. They have not suggested any steroids at all. I will ask them about it.
I am on a insurance with a high deductible. Seems like I will be paying to meet that number. I dont understand why one hospital is more expensive than the other. You are right, it is not cheap. The range i noted was from $600 - 2000 approximate. I am figuring out to understand if I can choose the place to get it done or is it the doctor guy. Not sure if the nephrologist will need to do a referral. Good points for me to add to my list to figure it out.
I do have the dilemma that it may or may not help with treatment but I certainly lean towards knowing what is happening or the root clinical cause.
Looking at your numbers, I personally agree with your doctor that you have an issue. I would jump at the chance to stop the downward slide. While getting the biopsy, I would ask for a genetic study too. Many things can be treated by targeted medications, an appropriate diet, or other approach. Treat the reason, not the symptoms or outcomes. Knowledge is power. I speak with regret about my hubby who kept himself in denial and lost his kidneys. Wish he had taken things more seriously. Now he does too.
Thank you Darlenia. that's an interesting point. Genetic study. I can add this to my question list and ask the doctor on my next visit. is there a test name you know off specifically under genetic study?
I am like learning all new terms as i keep reading and discovering things about kidney disease.
If an answer isn't found after getting the biopsy, that would be the time to look for a genetic study. There are a number of studies - some are simple and others are more complex. It's likely your doctor will pick one that he thinks is the best one for regarding genetic causes involving kidneys - most, I believe, start with the simpler tests and only move on to a more complex one if nothing is found with the simpler one. It would be really nice for you to have a reason for what you're going through - and maybe provide guidance and even a treatment plan. I truly hope the answers you find (hopefully) will light and smooth the path ahead. Blessings!
I have IgA nephropathy. I actually had 2 biopsies. I think the biopsy is worth while. The general protocol seems to be to aggressively manage BP and then there are some treatments specifically for IgA that they may not offer if it isn't biopsy proven. Many people with this disease never progress to ESRD, but I did. The transplant plant team really liked having historical pathology reports to look at.
I did not have any complications. The first time they kept me in the hospital overnight for observation, but I was fine. The second time was outpatient.
One biopsy I was awake and had a local anesthetic. It hurt a little, like a deep ache in my middle back. The other I was out for.
Both biopsies on my native kidneys had blood in my urine for a few hours. My post transplant biopsy on my new healthy kidney did not have any visible blood.
There are studies that show that some of the IgA therapies, like acthar, do have some level of success. They did seem to slow the progress. I found out I had kidney disease in 1996. Biopsy and diagnosis in about 2002. Kidney transplant in 2022. But I had a very aggressive form of IgA.
Thank you for sharing 6V53. Yes. The doctor did mention that they may tailor specific treatment to the IGA type that I may have. They don't know yet if its IGA but suspect it because of age, report and demographics. a Biopsy is needed to confirm it .I struggle to understand the progress aspect to ESRD. Feels like it is varies from people to people.
Glad to know there is a possibility of not progressing to ESRD. though, I still do not know the aggressiveness of the cause or if its IGA itself. Biopsy does seem to be worthwhile. Will think about it.
For me, I was 42 with no health issues. I started having high BP. Blood tests showed that I had a kidney problem. I was sent to the U of MO for more testing to see WHY. I had a renal arteriogram to see if there was a blockage in my kidneys. All was OK, so the next step was a kidney biopsy. I wanted to know what was going on and the cause of my kidney problem. My R kidney was smaller than my L, so they biopsied my healthier L kidney. When they do a biopsy they use an ultrasound to guide them. They put lidocaine on my skin. There was really no pain, just a little scary. I did have to stay laying flat for a couple of hours to prevent any bleeding afterwards. There was some microscopic blood in my urine for the next couple of days, and then went away. Dr. told me to stay hydrated. Dr. found that I had FSGS - focal segmental glomerulus sclerosis. Basically meant that my kidneys were getting all scarred up inside.
It all dated back to when I had strep when I was 9 and shortly after was in the hospital with nephritis - an inflammation in my kidneys. They told my parents then that I could have a reoccurrence later in life. And here it was some 30 years later. Today, I am 23+ year post transplant and doing great. My donor was 16 and was killed in a horrible auto accident. My creatinine today is 0.9-1.0
thank you for sharing WYOAnne. Wow. Strep from 9Y to a kidney situation later.
For me, my both kidneys are short. 8 cm when they did ultrasound. The called in normal in shape texture and nothing off with it. Some parenchymal changes. No hydronephrosis. The avg adult size is 9-11 cm is what i learnt. I do leak protein and have microscopic blood. I certainly like to know the WHY for sure. I am thinking about it more as i read responses.
Docs mentioned that it maybe the disease causing the high BP and not really Hypertension leading to Kidney issue.
Glad to know that you are doing well post transplant.
Hello, I am a 77 year old female in excellent health until a CT scan showed I had a 8.6cm tumor in my right kidney after having 5 years of extreme stress in my life. My surgeon said a biopsy could activate cancer if the tumor was cancerous. His experience said he was 90% sure my tumor was cancerous. I had the surgery to remove the kidney and the tumor. The tumor turned out to indeed be cancerous. So my surgeon made the right call. I would suggest a second opinion to see if you have other options. I wish you the best of luck.
Thanks NWrobin. Yes. I am thinking about another opinion as well. My doc said, they could run some blood test to rule out other potential causes but for now they suspect IGA Nephropathy.
I wish you the best of luck. This is a journey none of us wanted to be on, but here we are trying to make the best of what is happening to us. The margins of my cancerous tumor were clean, but I have fears of course when I have new internal feelings that I have no reason or answer for. Now that I've had cancer, that is where my mind goes.
Never had one, but Drs knew the cause of my kidney condition. Later when I started to decline they did an ulta sound, that's all. I did read a horror story on here from one patient that did have one. I would not consent to it after what happened to that patient.
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