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Author Topic: Rejection at Cell Level but High GFR?  (Read 423 times)
UkrainianTracksuit
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« on: May 09, 2019, 05:09:04 PM »

Okay, so, I hope someone can better educate me or share a similar experience.

A biopsy revealed that I have inflammation, which was explained as minor rejection, at the cell level of my new kidney. The tx team must have used the term rejection in the letter to my neph clinic because the nurse used the word. Since this is all at the cell level, I have no symptoms or signs whatsoever. My last creatinine was 0.58 mg/dL so it's obviously not showing up in blood work either. If the biopsy didn't pick it up, I'd never know.

I don't get my biopsy results to know the exact term used to see exactly where I sit on the Banff Classification, if this sort of thing even is listed on it.

Sooooo... I guess... what's going on? Will they just stick me back on oral prednisone? If it is left alone, would it, in time show a shift in blood work? Will this be treated or left alone because the numbers are so good? Is this really rejection or just a misuse of term? I really don't know what I'm asking. Can someone just give me a clearer picture?
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Charlie B53
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« Reply #1 on: May 10, 2019, 01:58:27 AM »


This sounds potentially scary, however until your labs begin to show any difference I would agree that the steroid treatment may show promise.

I will keep you in my Prayeres until I hear you are doing better.

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gilders
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« Reply #2 on: May 11, 2019, 09:17:05 AM »

From what I understand after my rejection scare, if it's cellular rather than antibody rejection, steroids are used VERY successfully at stopping rejection. It sounds like if you are indeed suffering from rejection, it has been caught at an extremely early stage.

I'm not sure whether they will start you back on oral pred or IV pred. After my suspected rejection, I had 3 days of IV pred, but my blood tests were showing a rapid decline in function.

My latest bloods showed a 2% decline in kidney function. This shouldn't really worry me as such a small change can be due to what I've ate the day before, or how hydrated I was when blood was taken. But as I'm now on weekly bloods and as they still don't know for sure if I was suffering rejection or not, I am a little concerned. When rejection was suspected, over a 5 day period my function dropped 11%, so I am anxious about next weeks blood tests.
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UkrainianTracksuit
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« Reply #3 on: May 13, 2019, 03:49:19 PM »

Thanks guys for the info and the prayers.

Gilders, how are your numbers now? Are you feeling fine with that 2% change?

As for my case, I havenít heard back yet on wth anyone is planning to do. Itís been phone tag to say the least. Anyway, at this point, there doesnít seem to be a fire up anyoneís backside.

Iím just so confused and I like to have a game plan. I know tx centres are busy but sometimes I think it is ridiculous how I get left in the dark.
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gilders
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« Reply #4 on: May 14, 2019, 05:23:18 AM »

Hi UT,
I feel good, thanks. This last week has definitely been one of my better ones since transplant.

I'm back at hospital tomorrow for my weekly blood tests. Fingers crossed the function is stable, or improved since last week.

I felt totally in the dark over the Easter period, but the rest of the time I've felt like I'm in safe hands.

How often do you go to clinic and see transplant team, or a nephrologist? I've only recently changed from 3 times per week to once per week. I really wouldn't want to leave it longer than once per week at the moment as I don't think my numbers are stable enough yet. I also like to have a plan set in place and also like to be involved with that plan. For example the prednisone, I prefer to taper off pred as soon as safe to do so as I suffer bad side effects and discuss this with the Dr. If I didn't suffer the side effects then I would ask to stay on pred as it does seem to offer some protection.

I hope you get some better feedback from your transplant centre soon. Often it is not the whole centre/hospital department that is poor, but certain individuals. If you come across a nurse/doctor who seems better than the rest, note their name and always try to contact them.
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justagirl2325
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« Reply #5 on: May 14, 2019, 10:17:27 AM »

Hi UT

This is what my husband had - this is the name from his biopsy "TUBULOINTERSTITIAL INFLAMMATION CONSISTENT WITH ACUTE CELLULAR REJECTION (Banff Grade 1A)"  His last known GFR right before the biopsy was 78.  They said it was lower the month before but they didn't tell us the number.

The biopsy was followed by intravenous steroids over a period of 3-4 days.  high dose - 1000mg

his prednisone was increased from 5mg a day to 20mg then it tappered back to 5mg over three months.  His GFR has been good ever since and it does bounce (59-101).
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UkrainianTracksuit
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« Reply #6 on: May 15, 2019, 12:02:40 PM »

Hey gilders,

I hope that your recent blood work looks good and everything remains stable on the positive side. Fingers crossed!

I see a regular nephrologist every 3 months. As for transplant clinic, I'm not so sure now. They wanted to drop me down to one visit per year but then this "cell level" rejection happened. Other patients see a tx nephrologist regularly but I don't because I had an SPK tx, and they don't want to step on another doctor's toes. As a result, I kind of feel like I'm always in limbo. My nephrology clinic doesn't have contact with my tx clinic. Well, I mean, besides, shuttling people through the process to get listed. There is contact between the tx nephrology department at the tx clinic....but not me, because I'm followed by urology.

If I could convince my husband to move closer to a larger hospital, I would.... but alas, hard sell.

Just a Girl,

Thank you for that info! When the tx team picked it up, did they get on the steroid treatment right away or was there some time in between to decide? Was there a follow-up biopsy or test to show that the treatment worked?
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iolaire
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« Reply #7 on: May 15, 2019, 07:45:17 PM »

You should be seeing your nephrology frequently if there are worries about rejection. Do you have the ability to make an appointment because of the bad test results?
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
UkrainianTracksuit
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« Reply #8 on: May 16, 2019, 06:36:30 AM »

Hi iolaire,

My local nephrologist isnít really concerned at all because my numbers/function are so good. Heís even gone as far to say that perhaps pathology at the larger hospital made a mistake.

Theyíve told me itís up to the tx hospital to follow it because itís out of their hands as well as league. As well, it is up to me to follow up with the transplant team.

While I definitely could have more regular local appointments with the neph, since nothing is showing up in blood tests yet, they donít see the point, because there is nothing that they can do.
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iolaire
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« Reply #9 on: May 16, 2019, 07:03:14 AM »

Thanks for the details.  I guess my concern is that they do the biopsy to get an early alert if things go bad before it shows up in the lab work.  I hope your able to talk it over with your clinic at some point.
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Transplant July 2017 from out of state deceased donor, waited three weeks the creatine to fall into expected range, dialysis December 2013 - July 2017.

Well on dialysis I traveled a lot and posted about international trips in the Dialysis: Traveling Tips and Stories section.
justagirl2325
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« Reply #10 on: May 16, 2019, 07:14:43 AM »

Just a Girl,

Thank you for that info! When the tx team picked it up, did they get on the steroid treatment right away or was there some time in between to decide? Was there a follow-up biopsy or test to show that the treatment worked?

I remember that he got the results of the biopsy on a Sunday and he was on the IV steroids by Wednesday or Thursday of the same week. He went to the hospital for an hour a day for 3 to 5 days in a row (I can't remember how many for sure).  I too had assumed there would be a follow up biopsy but no, and we asked and they said there was no need.   
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UkrainianTracksuit
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« Reply #11 on: May 17, 2019, 03:18:48 PM »

I remember that he got the results of the biopsy on a Sunday and he was on the IV steroids by Wednesday or Thursday of the same week. He went to the hospital for an hour a day for 3 to 5 days in a row (I can't remember how many for sure).  I too had assumed there would be a follow up biopsy but no, and we asked and they said there was no need.
Thanks so much for this! That was a quick turnaround with care. Now I'm just really frustrated.....  :waiting;
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