Pre-Biopsy Appt Tomorrow

[KarenInWA]

I am finally going in to see my 2nd opinion neph tomorrow for a pre-biopsy appointment.  He will make the final decision on whether or not I should have one.  I am pretty sure he will say it's a go.  Anyone have any questiions I should ask him?  I currently have around 30% kidney function left. 

What concerns me is the last time I had a renal ultrasound, I was told my kidney cortex was thin, but still thick enough to sustain a biopsy.  Would this mean I have a good chance of complications?  I have had other surgeries/medical procedures before, and I have always managed to bounce back from them fine.  Could this be different?

I am hoping to get this done in the first half of May.  My goal is to not take high-dose prednisone therapy, because I refuse to put my body through such horrible side effects that might worsen my already fragile health.  For instance, I already have weak bones, and I'm not all that gung-ho about making t hem weaker.  I do, however, want to know why my kidneys are on the road to failing me.

Thank you in advance for any input!

KarenInWA

[paris]

I had a biopsy done when I was at 30%.  It told me what type of kidney disease I had, but other than that, it didn't give me much information.   In hindsight, I would probably ask more if it were really necessary.   The procedure was simple.  I felt a sharp pinch when they "shot" the needle in and then had to lay flat on my back for hours.    I guess I would ask why they want to do a biopsy, what information will they get from it and will the results change how you are being treated for kidney disease.   I have idiopathic FSGS---no known reason.  Let us know what the neph says.   Good luck

[RichardMEL]

Paris' and my experiences are almost exactly the same (right down to the FSGS!). Karen I still don't get why you should need to have steroids at all. I had no meds apart from a local when they did the biposy and yeah just felt the needle go in - but more as a pressure than pain and yeah had to lie still for a bit.. it was honestly no big deal. Clearly if you are concerned about complications you need to discuss this with the neph until YOU are comfortable wth the join decision reached.

I wish you well with the appt!!!

[paul.karen]

Hey karen.
I have no advice just want to wish you luck in whatever decision you decide to go with.
I can understand wanting to know why your kidneys are going out on ya.

P&K

[Deanne]

Steroids are used to treat some CKD, like FSGS in pre-ESRD. I was on high-dose steroid therapy about 10 years ago. It reduced my protein spillage from 10 grams/day to under 3 grams/day. It's a miserable treatment, but I know it prolonged my renal function.

My own biopsy was very painful. My neph later said he must've gone through a muscle or something. It was awful and I was in pain for a couple of weeks. From everything I've heard, this is very unusual. I hope yours goes well!

[monrein]

My question for the docs about biopsy is always the same.  Will the information you gain from doing a biopsy cause you to start a course of treatment or change an already existing form of treatment or will it simply be information for the sake of information?  If it could influence what is done then OK it's worth the risk to me.  If not then forget it.

[Stoday]

My biopsy, at around 30%, was so uneventful I can't remember anything of it. I did have to stay in hospital overnight, in case it bled, but I was OK.

Hopefully, poor Deanne's experience is rare, but it is something to ask about.

[kellyt]

The worst part of my biopsy (which was in 1994), was the overnight stay in the hospital.  I had to lie perfectly flat, no pillow or anything, to avoid possible bleeding.  I was bored out of my mind because there was really no "reason" for me to be there in my opinion.

I was on Prednisone for 1 year shortly after my biopsy diagnosis, but I wasn't on the steroids due to the biopsy.  What I understood to be the reason for my biopsy was to determine what type of disease I had and whether one or both kidneys were affected.

My nephrologist is awesome.  I trust him wholeheartedly!   

Good luck to you!  No worries!

[KICKSTART]

Steroids are used to treat some CKD, like FSGS in pre-ESRD. I was on high-dose steroid therapy about 10 years ago. It reduced my protein spillage from 10 grams/day to under 3 grams/day. It's a miserable treatment, but I know it prolonged my renal function.

My own biopsy was very painful. My neph later said he must've gone through a muscle or something. It was awful and I was in pain for a couple of weeks. From everything I've heard, this is very unusual. I hope yours goes well!

I hope it goes well too ! I had to have 2 done !  The first one was horrendous , mind you i hated the doctor that did it , when i was first diagnosed it was out of the blue , no illness , nothing , so of course i started to ask questions .. like why ? when? how? and his answer was .. you dont need to know, or if he was feeling clever he would start to quote me 'medical terms' Anyway he did my biopsy and i felt every step of it , i cant begin to describe it , then i had to lie flat on my back for 24 hrs ! I did have more bleeding than usual and it was obvious he knew he had done something wrong as he kept coming checking on me every half hour ! But ....just to show you the opposite , my second biopsy (which you can imagine i was dreading  was soooooooooo different ! A lovely doctor , very understanding and i slept all the way through it !!! (you are not supposed to , but i was so sedated  i didnt know a thing ! ) I still dont know why they do biopsies though because they all seem to follow then same treatment plan regardless of why/how you get kidney failure !

[RichardMEL]

Steroids are used to treat some CKD, like FSGS in pre-ESRD. I was on high-dose steroid therapy about 10 years ago. It reduced my protein spillage from 10 grams/day to under 3 grams/day. It's a miserable treatment, but I know it prolonged my renal function.

My own biopsy was very painful. My neph later said he must've gone through a muscle or something. It was awful and I was in pain for a couple of weeks. From everything I've heard, this is very unusual. I hope yours goes well!

That's very interesting - I never heard anything like that and I'm FSGS.. I lasted 13 years without any of that.. I wonder what would have happened if they did that with me too. Interesting to hear.

the thing is that Karen is suggesting the steroids would be done in conjunction with just the biopsy??? So don't think that ha sanything to do with her pre-dialysis condition??! That's what I don't get.

[MandaMe1986]

I was on a high steroid therapy for 8 years.  Subtract the pregnancy of course. But for the first year I took about 45 mg of Pred. twice a day and IV treatment once a week.  It was hell and ended up with a lot of really jacked up side effects. But as for my kidney function it helped tremendously.

Best of luck to  you.   I have had to say over night and I have been released same day.  My last biopsy they sent me home the same day though, and it was done about a year ago. Same with my father. You might not have to stay. 

[Deanne]

The biopsy is likely to determine whether treatment (like prednisone) might be advisable. Some diseases will respond to treatment, other's won't. The only way to find out for sure which disease it is is often a biopsy.

I think I read that about 30% of FSGS patients can be put into remission with prednisone, 30% might have some improvement (like me), and it doesn't help the other 30%.

[Wenchie58]

I've had three biopsies in the past 6 months....each about the same...not much pain, lay around for 4 hours...if no bleeding..go home....lame for a couple of days.

My doc says the only way she can be sure of the kidney's cellular reaction to rejection is to get some cells to look at......makes sense to me!  She has seen me through some serious ups and downs and this lil kidney keeps coming back for more...so I have faith in her to do the right thing.  I always ask the big questions though!

[KarenInWA]

That's very interesting - I never heard anything like that and I'm FSGS.. I lasted 13 years without any of that.. I wonder what would have happened if they did that with me too. Interesting to hear.

the thing is that Karen is suggesting the steroids would be done in conjunction with just the biopsy??? So don't think that ha sanything to do with her pre-dialysis condition??! That's what I don't get.

I'm sorry I didn't make myself clear, Richard!  What the others have been saying about prednisone therapy is what I meant.  My neph has always said that since I refuse to do prednisone therapy, then it's not crucial that I do a biopsy.  Reason being is because when a biopsy is done, they usually recommend a course of steroids.  I have also been quoted by another neph the whole 30/30/30 thing that Deanne mentioned.  He also told me that some of his patients have begged him to go back on prednisone because they were really happy while on it and had more energy.  I would love to have that best case scenario!  Put my disease in remission *and* make me deliriously happy?  Sign me up!  But, I'm too afraid of the "other side" of prednisone, the one that makes people angry, suicidal, prednisone-induced diabetes (which happened to a cousin of mine - and my mom and his dad are siblings who each have type 2 diabetes), and of course, what could happen to my bones.  I'm not too gung ho about weight gain and moon face, either, but those would be  the least of my worries.  As you know, I work in a call center and deal with angry/upset/confused people all day.  I can't risk anger and the potential of losing my job and my health benefits.  If there was any way that someone could guarantee that I'd get the "good" side effects and not the "bad" ones, then I'd have a change of mind.

I was, however, once told that there are alternatives to prednisone, that do what prednisone does without the side effects.  Yes, this would be naturopathic medication.  There is a naturopath here in the Seattle area that I could see if I wanted to go that route.  Yes, I would talk this over with both nephs before doing that.

KarenInWA

[Deanne]

I can understand what you're saying about your prednisone concerns. I think the only side effect I didn't have was prednisone-induced psychosis. I was stilll snappy and jittery, but mostly sane (or maybe I just couldn't tell the difference!) 

My neph had to wean me off it because of the side effects. I ended up in the hospital with steroid-induced diabetes. My blood sugar level was over 1500.

The muscle atrophy was bad enough that after two weeks, I had trouble walking up a flight of stairs & I was wondering if I'd need a wheelchair. Someone lightly bumped into me at work and I ended up flat on my back, whopped my head on the concrete floor and couldn't get myself back upright without help. It took months to recover and my knees will never be the same.

I have osteoporosis now (not sure if it's from prednisone or from progestin to treat endometriosis).

I don't know if I'd do it again. I'd probably have to take medical leave and find someone to help take care of me. 

My neph is starting to ask if I'll be interested in a transplant and prednisone is one of my deciding factors.

[Wenchie58]

Must be folks react totally different to prednisone.  I have had high doses and low doses and other than a lil extra facial hair don't seem to have a reaction to it.

Right now I am on 10 mg a day, but I have been as high as 1000 mg a day.

Given the choice of prednisone or dialysis....I'll take the pred.  Just my 

[KarenInWA]

Thank you everyone for your input!

For now, the biopsy is going to be put on hold.  Reason being is my hematocrit (sp?) is too low, it's 31.  My neph would rather do it at 35 or 36.  I see my primary doc in 2 weeks, so I'll have an anaemia work up then to see if it's caused by something other then my kidney disease.  If it is caused by my kidneys, then we'll look into epo injections.  I don't know how I feel about that.  But, the good news is, my function is holding steady and I have just a little bit of protein in my urine.  I'll take the good where ever I can get it!

KarenInWA

[paul.karen]

Hope your kidney keeps your funtion steady for a long time to come.