Post-transplant biopsies

[iolaire]

Today I received good feedback from my new nephrologist (who was my transplant nephrologist) about post-transplant biopsies.  I’m summarizing here and probably am getting some terms and ideas slightly wrong.  My center does biopsies but he could argue both days pro or against biopsies.

There is about a 2% risk of something happening with the kidney biopsy.  That’s not to say 2% of the kidneys are lost but more likely 2% require some sort of additional care or intervention.

He feels the biggest decider of doing a biopsy is pure logistics, programs doing 200+ biopsy’s per year cannot logistically do 2 biopsies in the first year on all those kidney recipients.  He said at John Hopkins some doctors do them and some don’t.  University of Maryland which I believe he implied was a large transplant center doesn’t do them.  GW where I’m at does them.

He mentioned that this is not a highly studied area, that there are something like three studies, one showing they are unneeded, one ambiguous and one showing that they are helpful.

The big benefit of the biopsies is that if you are having some sort of clinical rejection is they can address it long before it shows up in the creatinine. When you do see problems in creatinine its almost too late to do anything about it.  For example if they see scaring they might decrease the amount of immunosuppressants to decrease the toxicity or change immunosuppressants drug types. Of course a majority of people will get back results that show no problems.

He said two programs are doing (I think I have the wrong words here) DNA or Genetic testing rather than biopsies that should be able to see exactly how the graft is impacting the host.  He felt things will go more in that direction as the clinical trials are completed.

Again this was a summary and I was not able to take notes as he talked.  He would be ok skipping the biopsies if someone asked to do that.  Obviously reading here about members who lost transplants after a biopsy and others whose programs don’t offer them it was good to hear his view.

[kristina]

Hello iolaire,
many thanks for the useful information, it is very much appreciated, because I have been thinking about this for a while...
I have always wondered, what a kidney-biopsy after a kidney-transplant is all about and what is it actually there for?
I had one biopsy done one year after my kidneys first failed in the early 1970's and the biopsy diagnosed me with a rare kidney-disease called chronic proliferative glomerulonephritis. I appreciate, that without the biopsy the diagnosis of chronic proliferative glomerulonephritis could not have been made...  Fortunately my kidneys regained some of their function again until about three years ago, when I finally had to "give in" and needed dialysis-treatments ever since.
After my kidney-biopsy had established the rare kidney disease I suffer from, every nephrologist I came across from then on, urged me, to have another kidney-biopsy done, but I refused each and every time and never consulted with them again, as their whole aim seemed to be geared to have another kidney-biopsy done on my "two little fighters" and I felt too protective of them and their little function to endanger them with another biopsy. I also saw no point in undergoing another kidney-biopsy, because I already had the diagnosis of chron. proliferative glomerulonephritis and I felt that another biopsy would unnecessarily endanger my fragile kidney-function.
I am still convinced, these nephrologist were trying "to pick on me", because of the rarity of chron. proliferative glomerulonephritis and I suspected, they may have been interested to do some medical research without much thought about me or the welfare of my "two little fighters".
But I could never understand, why transplanted kidneys need a biopsy, except perhaps for medical research? After all, a transplanted kidney is healthy, otherwise it would not have been transplanted in the first place and I can well imagine that a biopsy could upset the transplanted kidney? After all, a biopsy takes tissue away from the transplanted kidney and that could upset it or cause it to be fragile from then on?
What do you think?
Thanks for your answer from Kristina.

[MooseMom]

Thank you, iolaire, for posting this.  This discussion might be a good place for all of us to recount our experiences so that we can make better informed decisions in the future.

My center, UW Madison, never mentioned doing a "routine" biopsy at any time post transplant, and thank goodness for that.  After hearing of KarenInWA's experience with her 1 year post tx "routine" biopsy (she suffered a massive hematoma; I'm sure she will see this post and will comment herself), I was much relieved that my center didn't do that.

That said, 5 years post tx, my creatinine suddenly increased and stayed at a level that , while normal for some patients, was not "normal" for me.  At my annual evaluation, all of my labs were fine, but my creatinine was still up.  So I was referred for a biopsy.

Keeping in mind Karen's experience, I was not best pleased.

Bizarrely, the night before the procedure, I could not stop drinking water.  I hardly slept at all, I was so nervous, and I guess that caused dry mouth because I was going through bottles of water like The Drought would start the next day.

As a result, my creatinine went down, but there was still the question of whether or not to go through with the biopsy.  I decided to go ahead and do it since I was already there.  I wanted to see if there was anything going on.

The nurse came in to prep me, and as part of that prep, she had to give me the whole speech of what could possibly go wrong.  I started to change my mind.  Then she had trouble locating a vein in my hand.  Just as she was about to poke me, the surgeon came in.  He told me that in his opinion, in the absence of any evidence other than elevated creatinine, such an invasive procedure was unnecessary.

As I've posted in other threads, creatinine ALONE should not be used as reason to do a biopsy, especially if creatinine is still within normal limits.  I was really gratified to hear that and will certainly keep it in mind.  I'd had every test...DSA, BKV, etc, and everything was fine.

As a result of this experience, it is my personal opinion that no biopsy of an allograft should ever be "routinely" performed.

[MooseMom]

Kristina, I suspect that different centers might have different answers to your question about why do a biopsy on a transplanted kidney if nothing appears to be wrong.

One reason might be just out of an abundance of caution.

Another might be to see if the meds dosages are causing any damage.  The use of immunosuppressants is a double edged sword!

[Xplantdad]

Iolaire, I believe that you are talking about Transplant Genomics. Mayo is working with them-and my daughter is part of the study using blood tests to correlate what they are seeing in kidney biopsies.

ROCHESTER, Minn., June 27, 2016 /PRNewswire/ -- Transplant Genomics Inc.® (TGI) is collaborating with the Mayo Clinic Center for Individualized Medicine to develop, validate and commercialize diagnostic tests enabling personalized immunosuppression for solid organ transplant recipients. This multiyear collaboration includes an assessment of TGI's TruGraf™ test for renal transplant monitoring, a Mayo Clinic investment in TGI, and the co-development of new tests and technologies for additional targets, including exploratory studies in heart and liver transplantation.
   
Physicians and researchers are participating at Mayo Clinic campuses in Arizona, Florida and Rochester, Minnesota. Principal investigators include: Mark Stegall, M.D., Raymond Heilman, M.D., and Martin Mai, M.D., Mayo Clinic Transplant Center. 

"At Mayo, our research in this area is focused on improving long-term kidney graft survival, so that patients would lead healthier lives. Genomic analysis of blood can reveal early signs of rejection in transplanted kidneys. The potential clinical utility is to be able to monitor for rejection more frequently than is possible with surveillance biopsies and to individualize immunosuppression in transplant recipients," says Dr. Stegall.

"TruGraf's ability to detect early transplant rejection in patients with stable kidney transplant function will provide physicians with a tool to help provide the appropriate levels of immunosuppressive therapy. Our first collaborative project together is a case study in individualized medicine in which TruGraf will be used to support decisions around personalized immunosuppression," says Roy First, M.D., chief medical officer, Transplant Genomics.

Keep in mind that other than some centers (Mayo included) that do surveillance biopsies a year out, kidney biopsies are normally done for the following reasons: Blood in the urine originating from the kidney. Protein in the urine  that is excessive, rising or accompanied by other signs of kidney disease... and/or problems with kidney function, leading to excessive waste products in the blood.

[KarenInWA]

Ah yes, a thread about a topic that is very near but not at all dear to me. I am the one who had the horrible biopsy experience. Well, actually, the biopsy and the few days afterward were fine. It's what happened the next day after those fine days that were horrible.

My center doesn't do routine biopsies either - unless there is a reason for one. In my case, it was due to my creatinine finally getting to a new low of 1.4, only to go back up to 1.7 and stay there for 3 lab draws. My dr at the time then ordered a biopsy to rule out the very small risk of rejection. No rejection or issues with tacrolimus was found. Great! Then, on the first Saturday after said biopsy, I woke up with no urge to pee. I also had stupid painful menstrual cramps, as I was having my first period in 3 months, after having one while in the hospital recovering from my transplant.

Fellow IHD member RichardMEL was visiting me, so I headed down to the airport with my trusty bottle of water, and found myself with still no urge to pee. I made a phone call and drove myself and Richard to the UWMC ER (Seattle). I didn't leave for 5 days after that. It was discovered I had an obstructing hematoma caused by the biopsy and emergency surgery was needed. So, instead of going to the Seattle Symphony that night with Richard, I instead went to the surgical suite with a surgical team. I remember my sister and brother-in-law was there when I woke up in Recovery. I lost a LOT of blood overnight (over 600mL) so in the morning I had dialysis with a side of 2 units of blood. My creatinine got as high as 9.9. It took several months to settle in the low 3's, which became my new normal. Mind you, this was all in my first year of being a transplant patient.

I was put back on the list in the Summer of 2013. The dr who did the biopsy left, and a new dr took her place. I still lived my life, worked FT, traveled, went to concerts and musicals, etc. My kidney Lynette and I were stubborn! The last trip I took with just Lynette was NYC in Sept 2017!

I was Inactive on the list for most of 2017 due to pneumonia in Feb, then I decided to stay inactive due to my pending trip to NYC. I went back to Active on 11/15/17, received a back-up call on 11/18/17, official call on 11/20 and surgery on 11/21! I am now over 3 months post-tx with my new kidney, and the B-word has not been mentioned. Yahoo!!!   

But yeah, post-transplant biopsies - for me, only if absolutely, completely, unquestionably necessary.

KarenInWA

[kristina]

Hello Karen and many thanks for your input, it is very much appreciated.
The question now is: was the kidney-biopsy on your transplanted kidney "Lynette" really necessary and justified, or was it (indirectly) really meant for medical research-purposes ?
I am glad, that you don't have to come across the biopsy-doctor any longer, I could well imagine that consulting with him after such an experience could be extremely difficult, to put it mildly...
I do hope you and "Lynette" continue to do well together and  ... do you still meet-up with Richard and hopefully he is doing well with his transplant? I am "only" asking because he hasn't been on IHD for a while ... and hopefully he is enjoying himself whilst continuing to travel the world ?
Best wishes from Kristina.

[iolaire]

Iolaire, I believe that you are talking about Transplant Genomics. Mayo is working with them-and my daughter is part of the study using blood tests to correlate what they are seeing in kidney biopsies.

Thanks I knew I was botching that reference.  My doctor also mentioned Mayo Rochester in the context of doing biopsies.

Everyone else thank you for your posts.  I think its good to get this discussion out in its own thread so people can read about the dangers and benefits.

[MooseMom]

Karen, you know, I don't think I ever knew for sure why you had that biopsy in the first place, and so I incorrectly assumed that it was just because you were one year post tx and that's just what they did at your center.  I had not realized that your creatinine had gone up and that was the rationale.  Thanks for clearing that up!

So, after the biopsy you were told that there was no signs of rejection or any other problem.  Did your doc ever tell you why your creatinine was elevated?

[Xplantdad]

Iolaire, I believe that you are talking about Transplant Genomics. Mayo is working with them-and my daughter is part of the study using blood tests to correlate what they are seeing in kidney biopsies.

Thanks I knew I was botching that reference.  My doctor also mentioned Mayo Rochester in the context of doing biopsies.

Everyone else thank you for your posts.  I think its good to get this discussion out in its own thread so people can read about the dangers and benefits.

Agreed, Iolaire. Thanks for bringing this up!

[KarenInWA]

Karen, you know, I don't think I ever knew for sure why you had that biopsy in the first place, and so I incorrectly assumed that it was just because you were one year post tx and that's just what they did at your center.  I had not realized that your creatinine had gone up and that was the rationale.  Thanks for clearing that up!

So, after the biopsy you were told that there was no signs of rejection or any other problem.  Did your doc ever tell you why your creatinine was elevated?

Moosemom, I wasn't even 6 months post when this all happened, I was only just over 3 months post! My living donor was older than me by 29 years, she was 67 to my 38 at the time. Even tho she was healthy as a horse, for some reason, that kidney took a long time to lower creatinine. The surgery was 11/21/11, and it took til March 2012 to get to 1.4. Then it crept back up to 1.7 and stayed there. I don't remember what the dr said other than there was no sign of rejection or tac toxicity, and things looked good. Then it all took a turn.

I think I called the biopsy a "routine" one because it is more or less routine to the dr - or at least it should be!

kristina - Hindsight is 20/20 and no, I don't think the biopsy was justified. I totally understood why the dr wanted it - to rule out possible rejection since the risk is high in the first 3-6 months. But slightly elevated creatinine is not reason enough, in my opinion. Especially not after what I went through. Yes, this was at a teaching/research hospital, but if my experience was used for anything, I bet it was used as a reason NOT to be quick to order biopsy after what happened.

Lynette the Kidney has a new teammate - Rockette the Kidney! I received Lynette on 11/21/2011 from my live donor Lynn, and Rockette joined Lynette on 11/21/2017. Creatinine is now around 1, no protien in the urine (yay!!!) BP is normal with no meds, and my appetite is bigger than it was - but NOT huge, thank goodness!

KarenInWA

[MooseMom]

Karen, I don't know what made me think that your biopsy was a "routine" one year post tx procedure.  My brain must have cramped.  I'm glad you've set me straight!

I agree 100000% with your comments to Kristina.

Does Lynette function at all now that you have Rockette?  I'm assuming that Rockette is on the opposite side of Lynette?  I don't know how that all works, having two txed kidneys!  Can you tell me?

[KarenInWA]

Does Lynette function at all now that you have Rockette?  I'm assuming that Rockette is on the opposite side of Lynette?  I don't know how that all works, having two txed kidneys!  Can you tell me?

Yes, Rockette is on the left, and Lynette is on the right! As for how well Lynette (the first kidney, for those of you who don't know) I don't know how well she is functioning. I do know my creatinine was 3.6 the night before surgery, and it's been 0.9-1.0x ever since it took a few days to get to that level (and by few I mean by the time I left the hospital!)

I also get to enjoy pee with no bubbles! Yay no protein spillage!!!

KarenInWA

[MooseMom]

Bubbleless pee is a mighty fine thing!   

[justagirl2325]

We were told before the transplant that his doc was the king of biopsys (sp?) so not to be worried when he ordered one.  His kidney function has always been beautiful but his antibodies were up with no real reason so off to the big city we went for the biopsy. 

All results are delivered to us electronically before the doctor even sees them, which is good when the news is good, but as we found out yesterday scary as hell when it's not.  It says "TUBULOINTERSTITIAL INFLAMMATION CONSISTENT WITH ACUTE CELLULAR REJECTION (Banff Grade 1A)"

Two hours of online reading yesterday and it appears that maybe all this means is that he will have to increase his prednisone to a ridiculously high level for one-two weeks then taper down again and have another biopsy to confirm he's better.   

Hoping to hear from the doc today or tomorrow to see if this is going to be alright.

But in retrospect this was a blessing to find early; the Banff scale of rejection has seven grades, this is only the second of seven; and a possible reason to have a routine biopsy just to be sure.

[iolaire]

Two hours of online reading yesterday and it appears that maybe all this means is that he will have to increase his prednisone to a ridiculously high level for one-two weeks then taper down again and have another biopsy to confirm he's better.   

Sorry to hear that.  I'm glad you were able to find a treatment plan online that makes it sound manageable.  We all will be hoping that the prednisone does it job quickly.  I wonder if they will order a follow-up biopsy to check after that treatment?

So far I've had two post transplant biopsies and no one has directly talked with me about the results!  The first time the transplant clinic nurse said it must be ok because no one talked about it.  The last time the nephrologist said he would call the next week, but he didn't.  I think that time things might have gotten confused because the biopsy orders go in under the surgeon not him.  I'll ask him to review both biopsy results at my appointment this week and tell him to let me know if there is anything to note.  But each time when I want to complain about not hearing the results I have to be happy that the results must be ok if they don't call me.

Regarding you getting your results before the doctor talks to you about it - LabCorp where I get my monthly labs adds about a two day delay on when I can see the results.  It will say your doctor has the results and you can see them at a specific day and time.  I think its all the doctor to communicate to the patient before they get worried - like you did.  I don't know if I like that, but I can see the point from the medical professional side.

[justagirl2325]

So a week of intravenous steroids, advagraph up to 5mg from 4mg, myfortic back up to 720 mg twice a day from 360 mg twice a day (it was reduced to help fight and clear the BK virus) and then prednisone up to 20mg a day from 5mg after intravenous steroids are done.  And another biopsy to check but not sure when yet.

[iolaire]

So a week of intravenous steroids

I hope that that doesn't mean a week in the hospital? Good luck

[justagirl2325]

No, he went to the hospital for three one hour sessions of IV steroids and was released each day.  They left the IV in so no showers.  His last one is today.  No word yet on when the retest will be scheduled and try as I might I can't find any indication of how long they will wait. 

[iolaire]

@justagirl2325, good I'm glad he was able to stop in for the IV treatments.

So my hope of no-one calling me with biopsy results was a good sign but it turned out that they see some scarring in my new kidney.  I guess I should have bothered them for the results in May.

Full details over here on my transplant story page (to keep things organized).
http://ihatedialysis.com/forum/index.php?topic=34003.msg524128#msg524128

[MooseMom]

So my hope of no-one calling me with biopsy results was a good sign but it turned out that they see some scarring in my new kidney.  I guess I should have bothered them for the results in May.

Wait, what?  What does this mean?  Is it something you all are concerned about?  Is anyone talking about treatment for this, or is treatment even necessary?