I Hate Dialysis Message Board
Welcome, Guest. Please login or register.
November 26, 2020, 01:41:45 PM

Login with username, password and session length
Search:     Advanced search
530685 Posts in 33426 Topics by 12427 Members
Latest Member: Needakidney
* Home Help Search Login Register
+  I Hate Dialysis Message Board
|-+  Dialysis Discussion
| |-+  Dialysis: Transplant Discussion (Moderator: KarenInWA)
| | |-+  Biopsy at a hospital that is not your tx center
0 Members and 1 Guest are viewing this topic. « previous next »
Pages: [1] Go Down Print
Author Topic: Biopsy at a hospital that is not your tx center  (Read 563 times)
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« on: December 30, 2019, 08:19:43 AM »

My tx center is in another state, about a 2 hour drive away.

The center is also "out of network", which creates a shedload of paperwork (referrals, etc) for which I have to practically beg.

Several years ago, my creatinine spiked and stayed elevated for 4 or 5 months.  My neph's nurse practitioner  recommended a biopsy.

Long story short, I hiked all the way to Madison, not knowing if the insurance paperwork had been completed.  In the end, my creatinine suddenly dropped, and we decided a biopsy wasn't warranted since all of my other numbers were practically perfect in every way.

Fast forward to now, and my creatinine has been going upwards a bit, from 1.17 to 1.25 to 1.33 just last week, all of this over a period of 6 months.  I had my annual checkup in November, and at that time my creatinine was 1.25, my DSA showed no signs of rejection, I tested negative for all of the alphabet viruses, and all of my other vast amount of other results were normal.

While no one is talking about a biopsy, and while I feel fairly confident that things will return to normal (over the seven years of my tx, my creatinine has historically shown some periods of elevation), I seem to remember a few members here talked about having a biopsy locally instead of at their tx hospital.

My local hospital is close by and is now affiliated with Northwestern, whose main hospital is a renowned tx hospital.  My local hospital, however, has no tx program. 

So my question is , is it possible/recommended/prudent to have a renal biopsy of a transplanted kidney in a hospital that is not your tx hospital?  Have any of you ever done this, and if so, what was your experience?  Was communication between your local hospital and your tx hospital efficient?

(My tx hospital in Madison is terrific, but the whole experience of having to get up there was just awful.  We had rented a hotel room for the night before; my husband developed a terrible cold, so on the day of the biopsy, he drove me to the hospital early in the morning, but I told him to just go back to the hotel to get some sleep, so I was stuck at the clinic, facing this procedure, all alone.  Since the biopsy was ultimately deemed unnecessary, I had to take a cab back to the hotel.  It was just all such a jarring experience, and I want to make it easier for myself in the future should a biopsy ever become necessary again.  I had to fight with my PCP's financial department (I'm on an HMO) for almost a year to get the claims paid.  It was a nightmare, and I just wondered if they would more readily settle if I were to go to the local hospital.)

Sorry, reading back over this, I realize I'm not making a lot of sense.  My thoughts are disjointed as I am filled with anxiety when I really should not be.  It seems that as I get older, I feel more anxiety about a lot of things.  I think I have a visceral memory of the last time this happened; I truly believe that I had an anxiety attack back then over what turned out to be a big nothing burger, but we all know that we really don't KNOW when something is a nothing burger or not. 

Thank you for any information you can share with me.
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1848


« Reply #1 on: December 30, 2019, 08:54:53 AM »

So my question is , is it possible/recommended/prudent to have a renal biopsy of a transplanted kidney in a hospital that is not your tx hospital?  Have any of you ever done this, and if so, what was your experience?  Was communication between your local hospital and your tx hospital efficient?

All of my biopsy samples, two recently and one 26 years ago, were sent out to another hospital system that specialized in renal biopsy reviews and the results were returned in paper form back to my doctors who just read out the results.  From my experience the local doctor has virtually no role in the biopsy test result creation, they do the biopsy and take a quick look to make sure the sample is the right type of material, i.e. a kidney, and the quality is ok but that's it.  So in my experience it would be possible and that letter back from the biopsy lab will just need to be sent to the local hospital and the non local transplant center.

see:
https://www.kidney.org/atoz/content/kidney-biopsy
Test results
After the kidney sample is taken, it is sent to specially trained pathologists who will read and interpret your kidney biopsy. It often takes three to five days to get the full biopsy results. In some cases, you may have a partial or full report within 24 hours or less.


Has your center talked of the Allosure test or something similar?  Allosure (I've had two) and TruGraf are mentioned in this thread:
http://ihatedialysis.com/forum/index.php?topic=34947.0
never mind - I see you want it
http://ihatedialysis.com/forum/index.php?topic=35183.0
Logged

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.
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #2 on: December 30, 2019, 09:12:55 AM »

Thanks for that, iolaire.  That answers my question about which lab actually looks at the sample for evidence of specific problems.  I guess samples are sent from one hospital to another all of the time.

I think my main concern is the procedure itself.  Is it safe to assume that a specialist who does regular renal biopsies are also trained to do biopsies on a transplanted kidney?  I sounds like in your case, the answer was yes.  Did you have any qualms about who was actually sticking your allograft?
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1848


« Reply #3 on: December 30, 2019, 10:39:48 AM »

I don't think I have concerns about who pulls the biopsy sample.  As others have shared in other threads there are risks with the biopsy, but its a rather simple process that is highly supervised.  I only remember the post transplant biopsy's and in that case there were four people in the room, a tech who does the ultrasound that has the track for the needle, a nephrologist to look at the sample, another teach that unwraps the supplies and a final doctor that does the clicking of the needle to take the sample - assuming the third party hospital does something similar it seems ok. 

Afterwards basically they just need to make sure the internal wound closes up so you don't have internal bleeding.  Obviously if there are complications that's probably where having contact with the transplant center would be good.  Hopefully in that case you could leverage the NW connection?

But I hope some others chime in as well, as I'm much less worried about biopsy's than other members.
Logged

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.
kristina
Member for Life
******
Offline Offline

Posts: 5164


« Reply #4 on: December 30, 2019, 10:59:19 AM »

Dear MooseMom,

I am so sorry that you find yourself in this situation and unfortunately I cannot give you any advise or any idea what to do and I want you to know that I am thinking of you! I shall keep my fingers crossed and wish you the best of luck and please take great care.

Your friend Kristina. :grouphug;

Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Simon Dog
Administrator/Owner
Elite Member
*****
Offline Offline

Gender: Male
Posts: 3361


« Reply #5 on: December 30, 2019, 11:02:11 AM »

I don't think I have concerns about who pulls the biopsy sample.  As others have shared in other threads there are risks with the biopsy, but its a rather simple process that is highly supervised.  I only remember the post transplant biopsy's and in that case there were four people in the room, a tech who does the ultrasound that has the track for the needle, a nephrologist to look at the sample, another teach that unwraps the supplies and a final doctor that does the clicking of the needle to take the sample - assuming the third party hospital does something similar it seems ok. 
That "final doctor" is a trainee (generally a nephrology fellow) and the other nephrologist in the room is an attending whose primary role is to supervise the trainee, er, fellow.   If you have only one MD in the room it is good news - it means an attending nephrologist will be stabbing you instead of a very high level trainee gaining experience.

Here in Boston all renal biopsy pathology, as well as transplant tissue typing is done at Brigham & Womens Hospital, no matter what shop you use for the installation.

I always ask any MD I deal with as a patient - what are you - Resident, Fellow or Attending? - so I know where that doc is on the food chain.
« Last Edit: December 30, 2019, 11:47:18 AM by Simon Dog » Logged
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #6 on: December 30, 2019, 11:14:25 AM »

Kristina, I didn't mean to be alarmist.  I am sure everything will be fine and that I won't end up needing a biopsy.  I have looked at my creatinine level over the years, and this sort of roller coaster event is certainly not unusual for me.  But when I examine the real source of my worry, I see that it is the whole to-ing and fro-ing and the general mayhem a biopsy causes me, mainly because of the logistics and the insurance squabbles.  Please do not worry!

SD, exactly.  You've addressed my main question.  I've never had cause to visit my local hospital for any post-tx issues and am not sure that a biopsy of my tx would be the best time to start!  Thanks for your reply.  Last time, everything happened so quickly that I didn't have the chance to ask any questions of this sort!
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
iolaire
Elite Member
*****
Offline Offline

Gender: Male
Posts: 1848


« Reply #7 on: December 30, 2019, 11:45:05 AM »

I have looked at my creatinine level over the years, and this sort of roller coaster event is certainly not unusual for me.
Could your roller-coaster partly be affected by what you drink beforehand?

I've started to believe that your hydration has a big effect on creatinine.  My Nephrologist says the same thing. 

I've been able to force my creatinine down by drinking much more water in the mornings before my lab tests.  I pee multiple times overnight and end up fairly dry in the morning.  Usually I bath and go to work where I start eating and drinking.  Traditionally when I go for labs I've not drank much, but two recent lab visits I've drank over 16 oz before I headed into work - that pushed my creatinine down from its normal range of 1.4 - 1.5 to 1.26 and 1.33 with another 1.38 between them.  My average since 2018 - through July was 1.44.
Logged

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.
kristina
Member for Life
******
Offline Offline

Posts: 5164


« Reply #8 on: December 30, 2019, 01:42:23 PM »

Hello again, MooseMom,
... Could there be a possibility for you to talk this over with one of your regular nephrologists?
Of course, it is the wrong time of year right now, but perhaps you could find out when they are back to work and/or leave an urgent message for them with their secretary, informing them about your latest creatinine-lab-result-build-up and your concerns about it etc.?
... I am thinking of you and can well imagine how you feel right now and my thoughts are with you and I shall continue to keep my fingers crossed for you!
Best wishes from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #9 on: December 30, 2019, 02:47:34 PM »

iolaire, I think it is probably a hydration issue.  Past experience with my first biopsy-that-never-was leads me to that conclusion because the night before, I was so nervous that I couldn't sleep, and the anxiety led to a dry mouth, so I was constantly drinking water from the hotel tap, and voila, my creatinine went back down, leading to the cancellation of the biopsy.

It so happens that in the days leading up to my latest labs, the weather was unseasonably warm, so I did quite a lot of work outdoors.  I had on sunscreen (sunscreen in late December in Chicago!); sunscreen makes me perspire.  And to be honest, the only bothersome side effects I've had from the meds is, yep, sweating.  Ugh.  I thought I was hydrating enough, but perhaps I was not.  So, yeah, I think that's probably at the bottom of it all.

kristina, thanks for such nice words.  I appreciate that.  My tx coordinator would have messaged me if she was concerned.  Plus, she has 7 years' worth of my numbers she can look at for reference.  She can see that this is not the first time this has happened.  And she can see that my latest full work up showed everything else is normal.

My main question really had more to do with a hypothetical, i.e., can a tx patient have a biopsy in a hospital other than the tx hospital, and if so, how does that work, and what are the pros and cons?

Thank you all for your responses!
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
tigtink
Full Member
***
Offline Offline

Gender: Female
Posts: 157

« Reply #10 on: December 31, 2019, 07:48:21 AM »

Hi MooseMom,

I am hoping this is just one of those bumps in the road that will resolve itself. I agree that if your transplant center is not concerned it is probably not a big deal. There are so many things that affect creatinine. I've had to train myself to drink a lot since the transplant. It really makes a difference with the labs. Keep us up to date. You have been my inspiration for several years now!
Logged
MooseMom
Member for Life
******
Offline Offline

Gender: Female
Posts: 11038


« Reply #11 on: December 31, 2019, 12:59:07 PM »

Thanks, tigtink.  I actually posed this question with you in mind, too, because I know your tx center is the same as mine and that you, too, live some distance away. 

This particular sort of bump has certainly occurred before, and it has resolved itself.  I'm not unduly worried, but I sure don't want to have to hike up to UW if I don't have to!  So, I was just thinking ahead and wondered what other tx patients do. 
Logged

"Eggs are so inadequate, don't you think?  I mean, they ought to be able to become anything, but instead you always get a chicken.  Or a duck.  Or whatever they're programmed to be.  You never get anything interesting, like regret, or the middle of last week."
kristina
Member for Life
******
Offline Offline

Posts: 5164


« Reply #12 on: December 31, 2019, 01:17:39 PM »

Hello MooseMom,

I am still keeping my fingers crossed for you and I do hope it all sorts itself out. Take care !

I also wish you the very best of luck in 2020 from Kristina. :grouphug;
Logged

Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Pages: [1] Go Up Print 
« previous next »
 

Powered by MySQL Powered by PHP SMF 2.0.17 | SMF © 2019, Simple Machines | Terms and Policies Valid XHTML 1.0! Valid CSS!