Kidney Biopsy

[Chadwyck]

Has anyone had a kidney biopsy without freaking out?? I need to know what to do to calm myself down. I found out today from the nephrologist that it may be necessary.

The steps are:

1) Do urine tests every week for a month to establish kidney function patterns for protein only or both blood & protein
2) Blood work to make sure everything remains the same
3) MRI results proved Wegener's didn't invade my brain (THANK GOD!)
4) No activity in the sinuses or lungs (good sign Wegener's is behaving there)

So far over the last 7 months, protein showed up in urine tests at least 5 times but blood showed up only once...this past February.

[Rose]

I know what you mean "not freaking out". Being told I had to have a kidney biopsy was the only time I cried during those few weeks in hospital. Just the thought of needles being poked into my kidney. Anyway, as it happened it was a walk in the park. I actually had 2 within the space of about 10 days...the first one they took the biopsy from the wrong part of the kidney. And i cried again when I found out I had to go through it again even though I knew it would not hurt. It is just the idea of it.

To calm yourself? Maybe an anti anxiety pill for a few days before. Honestly, it was nothing. The nasal biopsy was much worse as far as pain goes.

Rose

[JeanMarie]

Same here - a walk in the park - they gave me meds that put me in the twinkie zone!

[Dirty Don]

Same here - a walk in the park - they gave me meds that put me in the twinkie zone!

What the heck is a 'twinkie' zone! I think I've been there, but there were no twinkies!!! I had a lung biopsy; I was in some kind of zone and never knew what was being done...it's not as bad as it sounds...best to you!

[NikkiNicole]

During the course of my diagnosis, I had to have a bone marrow biopsy. Holy Mother of God that was the worst pain I've felt in my life and that was with a shot o' drugs at the incision site and two Valium. So ... when they said I had to have a lung biopsy as well, I panicked. Literally was shaking like a leaf on the day of the biopsy.
Let me tell you ... that was a breeeeeeze. I was given IV meds to relax me and felt a little twinge at the beginning. When I told him I felt a little twinge, they gave me more meds and then I had NO idea what they did back there but I didn't feel it. I was awake but there was nothing.
I have not had a kidney biopsy but I can promise you, the interventional radiologist who did my lung biopsy promised me that the bone marrow one is the most painful. So ... hopefully that means good things to you.
*
On a side note, I have protein in my urine in every test I've ever taken. Yet, they always say it's just because of traces of a urinary tract infection. I have no idea how to read those tests I guess.

[RudiK]

They did a kidney biopsy on me three years ago and it was non-event. The nurse spend about 15 minutes preparing, taking an ultrasound and explaining what would happen. After the doc arrived they positioned the monitor so that I could see what went on and the doc explained what he was doing and warned me about possible pain. The only discomfort I felt was when the needle entered my skin on the way to the kidney. They took two samples, it lasted less than 5 minutes and that was that. Afterwards I was told to lay on my side and call if I experienced any pain. That was it.

[Jaha]

I wish you all the best.

[mishb]

Hi Chadwyck,

I have no idea what a kidney biopsy is like but from what the others have said, you should be fine.
Hopefully you don't have to have one and then it will be even better than fine :tongue1:

Sinus biopsy wasn't too bad and breast biopsy just felt like a needle prick, so I presume they are all basically the same.

Thank goodness there is no brain involvement - for WG I mean, and I'm glad that WG seems to be behaving elsewhere.

[Alysia]

On a side note, I have protein in my urine in every test I've ever taken. Yet, they always say it's just because of traces of a urinary tract infection. I have no idea how to read those tests I guess.

Nikki, if you have protein in your urine when you DON'T have uti, then you should do the urine collection of 24 hours to find out about it.

Chadwyck, good luck and please tell us, after it's over, how was it.

[drz]

I slept through my kidney biopsy. The surgeon said he didn't need me awake for anything so I just zoned out and told him to wake me if he needed me for anything. I asked him how it was going when I woke up a while later and he said he was just finishing up. I think it was much like giving blood for lab work which most of us have done many times. There is a slight risk of complications from a biopsy or root canal or colonoscopy or any other invasive procedure but the risk is generally very small and most happen without any problems and little discomfort. having a PIC line inserted the second time was a lot more uncomfortable for me than the biopsy to confirm the diagnosis.

[ingemlb]

Thanks to all for sharing the info in this thread. I have filed it away in my memory bank just in case down the track someone mentions a kidney biopsy :) I am such a chicken when it comes to these things. But I did survive a sinus and tongue ulcer biopsy and some kind of biopsy during a bronchoscope where i was sort of half awake. So I guess I would survive a kidney biopsy should it be warranted :)

By the way chadwyck make sure you don't neglect treating UTI's as they can get rather nasty and turn chronic. if you do have recurring UTI's they should be able to grow the culture and find out which bug then target it with antibiotics. :)

[Chadwyck]

Thanks everybody for all your support and advice! I won't know until the end of this month. Every Tuesday starting last week is a urine test to see if blood appears in it. I was told by the nephrologist that the odd protein is ok but blood... IS A NO NO! As for the freaking out part, I think it's because I know the procedure. Even though I'd be lying face down, I can't see what they're doing. I'm more calm when I can see what's going on, even if I don't know why they do what they do. I honestly think because this is my last week of prednisone nothing will show up to warrant the biopsy. I'm jealous of the patients who are off treatment...good for you but I'm jealous! :thumbdn: LOL

What was confusing me was that I already know I have Wegener's since March 2010, so why get re-diagnosed 4 years later with another biopsy?? I didn't know some people need multiple biopsies in their lifetime just to determine future treatment(s). Now I understand that it's the first biopsy that gets you diagnosed...future ones tell you how much damage is done to the affected area, how to treat it with what and by how much. I thought I was a pro at this by now and I'm still learning just like my first month.

[Chadwyck]

Same here - a walk in the park - they gave me meds that put me in the twinkie zone!

I was in a bad "twinkie zone" from the meds during my hip replacement. LOL I convinced myself that all bills were paid and I didn't bother paying them. It was when I owed twice as much money the following month I scratched my head and said to myself, thank goodness I'm not a drug addict! LOL

[Alysia]

Thanks everybody for all your support and advice! I won't know until the end of this month. Every Tuesday starting last week is a urine test to see if blood appears in it. I was told by the nephrologist that the odd protein is ok but blood... IS A NO NO! As for the freaking out part, I think it's because I know the procedure. Even though I'd be lying face down, I can't see what they're doing. I'm more calm when I can see what's going on, even if I don't know why they do what they do. I honestly think because this is my last week of prednisone nothing will show up to warrant the biopsy. I'm jealous of the patients who are off treatment...good for you but I'm jealous! :thumbdn: LOL

What was confusing me was that I already know I have Wegener's since March 2010, so why get re-diagnosed 4 years later with another biopsy?? I didn't know some people need multiple biopsies in their lifetime just to determine future treatment(s). Now I understand that it's the first biopsy that gets you diagnosed...future ones tell you how much damage is done to the affected area, how to treat it with what and by how much. I thought I was a pro at this by now and I'm still learning just like my first month.

maybe I am wrong, but I must ask WHY should you do biopsy at all ?
you already have the diagnosis. some get dx without biopsy (I did, with 2 false negative nose biopsies).
the amout of damage can be evaluated in other ways like CT, blood tests, etc.
the treatment is not necessarily according to the state of the kidneys... some of us don't even have kidneys involvement and still get the "big guns" like RTX (me)....
you are the "owner" of your body, and you are the one who should decide what to do to it and what NOT.
I wonder what others think and suggest....

[Chadwyck]

maybe I am wrong, but I must ask WHY should you do biopsy at all ?
you already have the diagnosis. some get dx without biopsy (I did, with 2 false negative nose biopsies).
the amout of damage can be evaluated in other ways like CT, blood tests, etc.
the treatment is not necessarily according to the state of the kidneys... some of us don't even have kidneys involvement and still get the "big guns" like RTX (me)....
you are the "owner" of your body, and you are the one who should decide what to do to it and what NOT.
I wonder what others think and suggest....

I was actually supposed to do a kidney biopsy in 2010 but because of the time to wait for a rheumatologist it could have led me to kidney failure. This is why they went into the sinus for it because there was a massive granuloma party going on. This time around, the sinuses and lungs are behaving. It's the kidneys that are playing games with me. The weekly urine test is definitely for the UTI suspicion but because they were involved 4 years ago, they're not ruling out Wegener's. Just like how I get a notification for E-Mail, I wish I could get something like that for sinus, lung & kidney involvement...but we're not that advanced in technology yet. LOL

[windchime]

I had one of my docs that wanted another lung biopsy to confirm the diagnosis. Of course I've had only lung involvement, but I would think that they could do a kidney scan to see if there are any granulomas present. They must have a site in mind to do the the kidney biopsy. What is sending them there. I have to agree with Alysia on this one. One biopsy is enough. We have the disease why does it have to be one biopsy per body part, or every so many years. Sheesh. The disease doesn't go away. Sorry sore subject for me. Went round and round with docs as they wanted to do another open lung biopsy on me. To date I've won. That may change you never know.

[greenjeep]

I had a kidney bx last year. I was not sedated at all. The radiologist did a local over the bx site and told me it would burn like a bee sting - didn't feel it. Then he proceeded to do the bx. Took 7 samples - didn't feel anything but his hand on my back. One IV the easier things I endured while in the hospital. Good luck!


Sent from my iPhone while driving on the freeway.

[acker]

Hi Chadwyck,
Just like the rest have said kidney biopsy, a walk in the park. my Doc & Nurse put some of my fav music on at the time and had me singing along, then they said, "hold it" so I stopped for a couple minutes and they said ok all done. The only thing I didn't like was having to lie on my back for 4hrs afterwards, as it was dinner time and I didn't want to miss it. So the Dinner lady liquidised my dinner for me so I could have it on my back. ( what a team they were in my hospital )
When it's done you'll wonder why you were freaking out. All the best Acker :thumbsup:

[Chadwyck]

Well, the time has come...no urinary tract infection!!! This was all Wegener's working behind the scenes... I found out today I have to do the kidney biopsy. But a month ago, was terrified about doing it. Now, I'm ok with doing it...I'm terrified of NOT doing it! I've seen what Wegener's have done to some people and it's a shame they're not alive to tell their own story. At least I am...so I'm not taking any chances.

On a good note, I told the doctor at nephrology, "Most of my friends stab me in the back when I least expect it...that's why we're no longer friends. You are the most respectable back stabber I've ever known... not only you warn me you're going to backstab me, you make me sign a consent form or you won't do it! We'll still be friends after this, I just know it!" He laughed so hard, he'll never forget my face no matter how many patients he has.

[ingemlb]

all the best with the biopsy chadwyck :)