My biopsy adventure

[tigtink]

Hopefully my sharing this will help someone else in a similar situation. I had my transplant 2 years ago September at UW Hospital in Madison. For the first year and four months, my creatinine averaged 1.0 and was very consistent. If February of this year, it increased to 1.26 and over the months since has been stable between 1.3 and 1.35, The transplant center was content to watch it for a few months to see if it returned to baseline. In September I had labs done for my virtual appointment with the transplant center. My creatinine had risen to 1.5, but I tested positive for a UTI. After a 10-day course of antibiotics the creatinine level came down to 1.35, but they were hoping it would drop below 1.3. My coordinator called and said they recommended a biopsy.

I was hesitant at first because of the risks involved, but I had been concerned about the increase and decided it would be better to know than to continue to worry about it. They gave me the option of having it done locally here in Michigan (MooseMom had wondered about this a while back for insurance reasons), but the logistics of setting it up here and waiting for results would have delayed things and prolonged my anxiety. I hadn't been back to the transplant center in almost 2 years, and I had not met my new transplant coordinator in person, so I decided to travel to Madison.

Although I was concerned about traveling, I was excited to finally get out of my house for the first time in over a year and a half and get to visit with my sister. I flew First Class with my N95 mask and hand sanitizer, got a seat in the front of the plane, and requested a wheelchair escort at the airport to limit my exposure. It was amazing to be out and about again, and exciting to sit in a room at my sister's house and talk face to face with real human beings! My sister probably gave me 50 hugs over 5 days, the first human touch I have had in a long, long time. We had a great time catching up.

The biopsy itself was no big deal, just a lot of waiting around all day. My creatinine the morning of the biopsy was 1.29 and all other results were normal except for a small amount of protein in my urine, which didn't seem to concern them. The DSA test I had in September was negative. Interestingly, they drew blood for an Allosure test the morning of the biopsy. I guess they are still testing it out to see how accurate the results are. The preliminary biopsy results given to me before I was discharged showed no sign of rejection. I was told that 60% to 70% of the time the final report is consistent with the initial results. I flew home
two days later and awaited the final results.

A week after the biopsy (Monday of this week) the pathology report was posted to MyChart. No call from the coordinator that day, but since I had an appointment with my local nephrologist the next day (I figured I would need to touch base with him in case I needed his help if I required some kind of rejection treatment) I printed the report and had him review it. He didn't see anything concerning even though it showed some fibrosis and minor tubular atrophy. Today I talked with my transplant coordinator who said I was negative for rejection, but since there were some changes they decided to increase my dosage of Mycophenolate from 360 mg twice a day to 540 mg twice a day to reduce the chance of further decrease in function. Also, they raised my tac trough level from 5-7 to 7-9.  I go back in six months.

I am keeping my fingers crossed that my poor stomach can tolerate the increased Mycophenolate dosage. In the past it has caused diarrhea and dehydration. There is also the possibility my white blood cell count will drop. I am hoping it won't be as extreme as it was when I was taking Bactrim and Valcyte along with the Mycophenolate.

The Allosure test came back as .29. From what I can tell. at .2 or less there is a 95% chance of no rejection, at .5 the threshold is met for borderline T cell rejection, and 1.0 or above indicates active rejection. At least now they have a baseline for me.

I am including below the actual biopsy results. Some of the wording is scary, but bottom line is no rejection at present, but enough of an indicator to adjust the immune suppressants.

Final diagnosis: Patchy mild interstitial fibrosis and tubular atrophy with focal interstitial inflammation and mild tubulitis in mildly atrophic tubules.

Comment: The pathologic findings are nonspecific and can be due to borderline T cell-mediated rejection, urinary tract obstruction or urine reflux

Wish me luck with the new medication regime. I shall have to have a good talk with my stomach to prepare it. The coordinator thinks my creatinine will probably stabilize at the level it has been, which is fine with me.

So that is my big adventure. I am glad I went ahead with the biopsy. I had my big trip, now it is back to my quiet COVID era existence.

[MooseMom]

Oh tigtink, thank you SO much for posting this!!  I found it VERY helpful!

I am very glad you were given the option of having the biopsy done locally.  That's a real relief for those of us who live some distance away from their tx hospital.  I can certainly understand your reasons for finally deciding to go ahead and travel to Madison.  Seeing your sister after so long was definitely a silver lining!  Did you like your new coordinator?

I'm glad you found the biopsy to be "no big deal".  I don't know why, but I just panicked.  I am so glad that in the end, they decided there was no reason to proceed, but ever since then, my creatinine has remained in the 1.25-1.35 range, and it has been 4 or 5 years now.  All of my other lab values have remained normal, so that's probably why they've not asked for a biopsy, but that leads me to wonder if your other labs were OK?  Was there anything "off" other than your creatinine?

You have to be SURE to let us know how the increases in your meds affect your stomach, if at all.  Have you taken anything in the past for stomach problems because yeah, that mycophenolate can do a number on your GI tract. 

I'm wishing you the very best of luck, tigtink, and applaud you for your courage!  Ever since my little episode, I've had real anxiety when my labs are due (I have my big, annual labs done in about a month's time, and my stomach hurts just typing this), so I am so glad to hear you handled it so well.  I hope the new dosages work out and that 6 months from now, all will be well.

Again, I really appreciate you posting about your experience. 

[UkrainianTracksuit]

Thank you for sharing this, tigtink!

May your stomach heed your instructions on the new medication regime! Like MM asked, do you take anything for the gastro side effects currently?

It sure sounds like you planned your trip well and in a way that kept you safe. Great! I've had 3 biopsies on my transplanted kidney (outside of the time of COVID-19) and they were all treated like mini-vacations because of the distance to the tx center.

Take care, stay safe, and I hope your creatinine levels to a nice number!

[tigtink]

MooseMom, the biopsy was no big deal, but the anxiety beforehand certainly was. I was caught off guard when the call came and they recommended the biopsy. Not only was I dealing with a new coordinator, I was assigned a new nurse practitioner because my prior one wasn't licensed to do virtual appointments in Michigan. I adored my previous coordinator and N.P. and had developed a good working relationship with them. So when the new coordinator called and wanted to schedule a biopsy without realizing I lived 6 hours away, it was disconcerting. I was able to meet her the day of the biopsy, and since then she has been extremely responsive. Last week my pharmacy messed up the tac prescription and she was on the phone with them minutes after I sent her a MyChart message. I am feeling more comfortable with her now.

It took me a few days to decide to go ahead with the biopsy. I had been stable for months at a level that seemed pretty reasonable. All of my other labs were normal: they test me for BK virus monthly, my BUN has stayed around 20, potassium, hemoglobin, white blood cell levels, phosphorus, lipids, vitamin D, calcium, and magnesium levels all came back normal. There was minor levels of protein in my urine, but no more than usual. When I reviewed my records, I saw that my average creatinine during 2020 was 1.0 and for 2021 it had risen to an average of 1.35. That is a big increase from baseline. And it could not be explained by dehydration. The last level before the biopsy was 1.34 despite drinking enough water beforehand to wash me out to sea. Like you, these blood draws became increasingly full of dread, so I wanted to know.

The procedure itself was easier than I imagined it would be. I had my labs drawn at 7:15, then went to the transplant clinic. It was after 11:30 when they were ready to take me down the hall for the test. Then, believe it or not, the lights went out! My room was pitch dark and I heard a nurse wonder when the generator would kick in. It finally did after a couple of minutes but it was another 20 minutes until full power was restored. No storms or anything, so it was a shocker. I did not even have to change into a gown for the test. The whole procedure took no more than 15 minutes and was pretty painless. Much easier than the pre-transplant biopsy I had ten years ago when they went in through my back. After the biopsy, I had to stay flat in bed to an hour with a sandbag on my side, then I was able to sit up a bit and order lunch. I had my sister drop me off that morning instead of having to stay all day, but she came by after lunch to keep me company. At 3:00 they tested my hemoglobin to make sure it had not dropped too much. I was released shortly after 4 PM. There was a little bit of soreness and I had to take it easy for three days, but I had no issues. My sister's puppy Teddy helped my relax until it was time to come home.

We probably could have waited about the biopsy and just watched things for a while, but I manage my anxiety better when I have more information about what is going on. I feel much better now. I guess it is all part of living with a transplant.

[MooseMom]

I'm glad to hear that you and your tx coordinator get on well.  She sounds efficient!

I'm glad your sister was there for you.  My husband drove me to Madison, and we stayed in a hotel overnight, but he had a cold and wasn't feeling well.  I told him to go back to the room and get some sleep.  When I eventually decided to cancel the biopsy, I had to take a cab back (I didn't have my phone with me.)  I remember the cab driver was from Eastern Europe, and we had an in depth discussion about the English Premier League (soccer).  When he dropped me off, he said he was sorry to see me go.  lol  He probably doesn't get to talk about that topic very much.

I can't believe the power went down!  Thank goodness it wasn't some bad omen.  Gosh, you make the procedure sound so much more manageable than I imagined.  I'm glad to know that.

I'm relieved that you're relieved.  And, there is something to be said for a quiet Covid-era existence, particularly with winter on the way.

Again, thanks for posting, and do keep us updated.  I'm eager to hear if your new dosages result in reducing your creatinine level.  Why do you have to go back in six months?  That's quite a trip for you.  If your creatinine stabilizes, is there a need to go back, do you think?

[tigtink]

All I know is the last thing the transplant nephrologist said before I was discharged was to come back in six months, so I made the appointment. I'm sure if everything is stable I could make it a virtual appointment, but I had such a good time visiting my sister that I will probably make the trip.

From what I gather from my coordinator, I don't think they expect the creatinine level to drop. She said it will likely stabilize where it has been, so that will become my new baseline. If it stays between 1.25 and 1.35 I will be okay with that.

The pharmacy is taking forever to fill the 180 mg of the mycophenolate, so for now I am cutting the 360 mg ones in half and adding half in the morning and half at night. My new dosage is 540 mg twice a day, which is still less than the 720 mg twice a day I was on right after the transplant. When I had all the stomach issues back then, I was only three weeks post surgery and I was also taking full doses of Bactrim, Valcyte, and sodium bicarb, none of which I am taking now. Plus my tac level was a lot higher. So I am hopeful the original side effects were just from my body being in shock from the surgery and trying to adjust to all the new meds. So far no problems with the new dose.

I learned a lot from studying the biopsy report. I was not given a Banff score because there was no rejection, but there are about 15 subcategories of kidney injury that were reported according to the Banff scale. Each one is an indicator of inflammation or various kinds tubular atrophy and fibrosis. They give each one a number from 1-3 depending on the extent of the injury. Most of mine were zero, with a couple of 1's for fibrosis and tubular injury. The highest was i-IFTA3 for interstitial fibrosis. I still don't totally understand what it all means, but it was fascinating to learn about it. 

[MooseMom]

OK.  New baseline.  Got it.

I've never heard of the Banff scale, so I learned something today.  It IS interesting.

I'm glad your stomach is not rebelling.  You're almost certainly right in thinking that full cocktail of meds you were taking in the beginning made your GI track fuss at you.

[kristina]

Hello tigtink and many thanks for sharing your experiences with us, it is very much appreciated.
Many thanks again from Kristina.

[SooMK]

Thanks for this tigtink. I have not had a biopsy but I do worry about needing one at some point. This has reassured me. Lots of good info in this post.

[tigtink]

Update: The good news is that I have had no ill effects from the higher dosage of Mycophenolate. I was disappointed with my latest labs. Creatinine was 1.41, an increase from the 1.29 last month. Also, the urine culture shows another UTI even though I have had no symptoms. The coordinator called, and they are not concerned about the creatinine level. It is within what they have determined is my new baseline. She hadn't seen the urine culture yet, but she said they would not treat it unless I started having symptoms. I have learned over the years that the UTI's do affect my creatinine, but I guess they are more worried about resistance to antibiotics. So for now, I will try not to fret over it. If they are unconcerned, here is no point in my worrying. It does make these monthly labs more stressful, though.

[MooseMom]

Oh, thanks so much for the update, although it seems frustratingly inconclusive.  Like you, if I've voiced a concern and the transplant coordination remains unworried, then I figure, ok, fair enough.  Funnily enough, I heard a piece on the radio that examined the growing number of antibiotic resistant bugs out there, so I can see your doctors' point of view regarding not treating an asymptomatic UTI.

Isn't it an awful feeling to see your creatinine and be disappointed?  Even if your coordinator is unconcerned, it's still disappointing.

[kristina]

Hello tigtink, just to say that I am so glad that you had no ill-effects from the higher dosage of Mycophenolate. But, do you now get more medical check-ups from your centre or family doctor because of the higher dosage of Mycophenolate and your liver-function etc.? Hopefully your Creatinine-levels "settle" again soon and I am surprised and a bit shocked, that you have had not symptoms of the latest UTI? Does that indicate that we have to get checked-up about UTI's more regularly, even if we have no symptoms whatsoever?
I send you my warm regards and good luck-wishes from Kristina.

[tigtink]

Kristina, I don't think there is any increase in danger to my liver from the new Mycophenolate dosage. I was on half the normal dosage, now I am on 2/3 the normal dosage. They monitor my liver function regularly already. From my research, they have learned it is very common for women over 50 to have urinary infections with no symptoms. The current guidance is to only prescribe antibiotics when there are symptoms. I suppose if the bacteria levels keep increasing, at some point they may want to treat it. But at the level I am at now they do not want to prescribe antibiotics as long as I have no symptoms.

[kristina]

Kristina, I don't think there is any increase in danger to my liver from the new Mycophenolate dosage. I was on half the normal dosage, now I am on 2/3 the normal dosage. They monitor my liver function regularly already. From my research, they have learned it is very common for women over 50 to have urinary infections with no symptoms. The current guidance is to only prescribe antibiotics when there are symptoms. I suppose if the bacteria levels keep increasing, at some point they may want to treat it. But at the level I am at now they do not want to prescribe antibiotics as long as I have no symptoms.

Many thanks tiktink for taking the time to explain, it is very much appreciated. I am glad that you have no liver-concerns and I am very grateful about the information of UTI's not showing symptoms and therefore not needing any treatments. Mind you ... I am still wondering about UTI's, i.e. if some UTI's are not treated with antibiotics etc., whether they could possibly aggravate the transplanted kidney and by doing so could slowly reduce the kidney function?? What do you think?
Many thanks again from Kristina.

[tigtink]

I wonder that too, Kristina. But I have to defer to the transplant center's judgment on this. As I was told early on by a transplant surgeon, everything relating to kidney transplant involves balancing risks with benefits. Often, that means choosing the lesser of two evils and hoping you've made the right choice.

[kristina]

Many thanks tictink for your interesting thoughts! We seem to ponder about similar “things” and I am glad that you can rely on your transplant centre about these balancing acts of choosing the lesser of two evils and hoping for the right choice. Your transplant surgeon seems very experienced and I congratulate you on this, because being with an experienced surgeon makes transplant-life so much easier ...
That reminds me that I have not yet met “my” transplant surgeon since “my” transplant took place three years ago and so far I was only registered with I-don’t-know-whom, because the young doctors at this, for me, unfortunate transplant-centre are only young doctors who wander from one department to another in order to collect experiences. That is the bad news. The good news is that I have applied – for a long time now and still waiting - to be referred to another hospital, with a specialist who hopefully knows more about “my” rare genetically inherited diseases who have, in the past, damaged my own kidneys beyond repair and hopefully, with a real specialist’s help I can keep “my” transplanted kidney for longer…
I wish you further good luck and send you by best wishes from Kristina.

[iolaire]

Kristina, I don't think there is any increase in danger to my liver from the new Mycophenolate dosage.

Post transplant they told me to basically never have alcohol, maybe say a glass a major holidays, that might have been the dietitian.  Other medical practitioners have said its fine in non heavy drinking situations.  But at some point someone said that the Mycophenolate was already hard on the liver so they didn't want additional alcohol damage putting the liver at risk.  I still drink a bit socially a few times per month.

So in response to this tread I jumped over to google and do see some references to Mycophenolate and liver damage:
https://www.ncbi.nlm.nih.gov/books/NBK548945/
Mycophenolate therapy can be associated with mild serum enzyme elevations and it has been linked to rare instances of clinically apparent liver injury.
But on the flip side other links show they use it in liver transplant patients so it can not be all bad.

I'm taking (generic) Mycophenolate Sodium 360MG oral tablets two twice per day.

[UkrainianTracksuit]

I know that my liver enzymes get checked 2x per year at my tx clinic visits. So far, so good.

I drink moderately, I would say. Though once I was accused of being an alcoholic many years ago here for having 45 ml (3 tablespoons) of vodka at lunch with my (now deceased) grandpa each day.  Pre-transplant days though where I was adamant I didn't want a transplant. Ah well, liver still working like a champ regardless.

[kristina]

I know that my liver enzymes get checked 2x per year at my tx clinic visits. So far, so good.

I drink moderately, I would say. Though once I was accused of being an alcoholic many years ago here for having 45 ml (3 tablespoons) of vodka at lunch with my (now deceased) grandpa each day.  Pre-transplant days though where I was adamant I didn't want a transplant. Ah well, liver still working like a champ regardless.

Hello UkrainianTracksuit and many thanks for your kind input, because it proves to me that something is seriously going wrong my end because I am practically tea-total and so is my husband. So, why should my blood show any bad development with my liver-function?

I mentioned this apparently developing liver-function-problem to one of these "I-don't-know-whom" and he mentioned that "they" don't "look into it" because it seems to be very natural and from this I understood, that other patients ask them the very same question as well. Since I have asked and obviously other patients have asked about this as well, I can only conclude, that this particular anti-rejection-medication causes these liver-function-side-effects and maybe there is some "special research" going on with this particular medication? I would not be surprised, because I have felt very uneasy and suspected that some medical research with some unlucky "research-fodder" might be going on and that is the main reason why I try to get away from there a.s.a.p.
Many thanks again for your kind input, UkrainianTracksuit, it is very much appreciated and strengthens my determination even more to get away from this strange transplant-centre a.s.a.p.