Dazed and confused

[MooseMom]

Hi, everyone! 

Update alert. 

My vacation was dreadful for all sorts of annoying reasons, the biggest one  being that my PCP's office screwed up my referral to UW-Madison for the biopsy.  "Screwed up" meaning "apparently just sat on it".   Whoever gives approval for these things couldn't understand why the biopsy was going to be in Madison and not done locally.  Duh.  One would think that after five years, some bright spark would pick up my file and would figure it out.  So a good chunk of holiday time was spent on the phone trying to get this sorted out and NOT resting my anxious brain.

We got home on a Tuesday night and turned right around on Wednesday morning to drive up to Madison where we spent the night so that I could be at the lab by 7:30 the next morning.  I awoke at 2AM and couldn't get back to sleep, I was so nervous.  I stopped trying and settled down to read.  I kept getting so thirsty...it was just nerves.  So I drank and peed, drank and peed, drank and peed until it was time to get up for real and head to the lab.

I had blood drawn and then toddled over to the transplant clinic, still not knowing if the referral came through on time.  I guess it did, because I was ushered to my little room for the day.  My husband had caught a nasty cold in CA and was spluttering his way through; I made him put on a mask!  So a nurse comes in and briefly explains what it going to happen. 

Then Jen (my tx neph's assistant; I see her at my annual appts) comes in and says that she has good news that serves to muddy the water.

My creatinine was back down where it usually is (1.17), and all of my other numbers (and there were a lot of them) were perfect.

So, I had the choice of whether to do the biopsy or not.  Since I had had gone though so much red tape, and since I was already there, I said to go ahead and do it.

Another nurse comes in and explains exactly what the risks might be.  I started thinking of KarenInWA (well, I had been thinking of her story for months), and I started thinking, too, that I wasn't sure that my labs warranted the risks.

She was just about to site the IV when the doctor who would perform the procedure came in.  I pulled my hand away and talked to the doctor.

This is the important bit and why I wanted to post this...

The doctor told me that creatinine alone is a "very poor" indicator of renal function.

CREATININE ALONE IS A VERY POOR INDICATOR OF RENAL FUNCTION.

That's what I had been thinking all along.  My creatinine had been elevated, BUT ALL OF MY OTHER NUMBERS WERE JUST ABOUT PERFECT.

He went on to say that he'd do the procedure if I wanted it, but it IS invasive.  I asked him for his honest opinion, and he told me straight up that if it was his family member, he'd say "no".

So, I said, "Thank you very much.  Good bye!", and that was the end of that.

I personally think that the constant drinking and peeing I did in the hours leading up to the biopsy tipped my creatinine downwards.  I wasn't thinking, "Oh, I have to drink lots of water so that my numbers might improve.", rather, I was just very anxious and that seemed to give me a dry mouth/throat, hence the several bottles of water I went through.

I have my next set of labs later this month, and I won't be surprised if my creatinine is up again.  If it is (I don't usually drink as much water as I did in Madison!  That was a bit of an anomaly), I don't think anyone will be bothered by it. 

So, the lesson is, once again, that creatinine alone and without context doesn't tell any one enough to warrant a biopsy.  We all tend to look at creatinine first and creatinine primarily, but I've learned that this just does not tell the whole story, not by a long shot. 

I hope this story helps someone out there and that it has made sense.  If anyone has any questions or comments, please let me know.  It was a very odd experience and didn't go as I thought it would, and I'm not complaining about that!  I got a real break!  Whew!

[kickingandscreaming]

Congratulations, MM.  Good to have you back.

[cassandra]

Well done MM

      



Now have a drink, and than drink some more.

Love, Cas

[tigtink]

That's wonderful news MooseMom! I was getting concerned when you did not post for a while. It sounds like you made the right decision about the biopsy. I will try to keep in mind what they told you about creatinine. Mine jumps around sometimes but I try not to freak out about it. Latest labs still show 18% so it makes it easier to be patient about the transplant. Here's hoping your creatinine stays down and you continue to be the poster child for successful transplants. You are my inspiration!

[MooseMom]

Tigtink, I'm pleased to hear that your creatinine is still holding steady.  In the grand scheme of things, 18% isn't bad at all, as long as you are feeling OK!  I know how hard it is to wait; having patience is not easy, so I'm particularly glad to hear that you are still doing alright.  Keep up the good work!

[KarenInWA]

Oh MooseMom, I want to hug your tx neph! What an awesome man for saying what he did and with such timing, too! And, that is good to know about creatinine. My creatinine has creeped back up to the low 3's after teasing me with a nice 2.4 back when I was sick with pneumonia early this year. I saw my tx neph a month ago when it showed up like that on my labs. We repeated them 2 weeks later only to have the same result. I will be repeating them again tomorrow. My BP is normal (no meds!) but I do have a case of what I like to call "Handsome Dr" hypertension.... (both my tx neph and my endocrinologist are close to my age, attractive and smart. I'm not blind OR dead!). My lipids are good (no meds for that, either!) and my K and phos are always in the normal range. I do take calcitriol 0.5mcg to manage PTH, but that and a twice yearly Prolia shot for osteoporosis are the only Rx meds I am on besides my anti-rejection ones.

So good to hear from you again!

KarenInWA

[Charlie B53]

I've suspected that for those of us that still have residual function, how important that is in helping keep are labs within bounds.

Water IS Good!  Long before I began this adventure I had switched from soda's to water.  I didn't like the 'bubbles' of soda, and as big as I was getting I really didn't need the sugar either.

Water makes a lot of sense.

I severely limit my fluids, being afraid of the gains and am amazed some days at weight-in as I knew I had given in and drank far more than I intended, yet I hadn't gained anywhere near as much as I had thought.  Residual function had to have made a lot of the difference.

[PrimeTimer]

MM: Glad everything is alright. Might not be the vacation you wanted but now you can take a vacation from the anxiety of a biopsy and I hope it's a mighty good long one too!

[SooMK]

Good news MM! I think you did the right thing and give you credit for being ok with saying "nevermind". And kudos to such a supportive doctor. This is probably not accurate, but I think of creatinine as being like BP. It's about the pattern or trend of the numbers over time.

[kristina]

Dear MooseMom, thanks for the update and I am so happy for you that this doctor gave such an honest opinion for you to have the choice and even avoid an invasive kidney-biopsy! That is such a wonderful moment in life when a doctor acts like a friend!
Best wishes and further good luck from Kristina.

[MooseMom]

Thanks everyone for your support!  This is why I love IHD.

KarenInWA, I know, right?  I was really surprised that the doc didn't try to persuade me to do it!  I could have hugged him, too, but I was in such a hurry to get out of there ASAP!

PrimeTimer and Kristina, thanks for your kind words.  I really appreciate it.   

SooMK, but that's the thing.  My creatinine suddenly spiked and remained elevated for 8 months.  It didn't slowly creep up.  It was more of a "spike" than a "trend", if that makes sense.  But the mystery was in the fact that all of the rest of my numbers remained just fine.  It was just all odd, but I've just got to let it go, now.

[SooMK]

Ah right. A mystery. I'm sure you explained that. Find myself forgetting things all the time these days. If only they were the things I want to forget instead of the things I want to remember. Hope this is last of the mysteries for you for a long time.

[Athena]

Hi, everyone! 

The doctor told me that creatinine alone is a "very poor" indicator of renal function.

CREATININE ALONE IS A VERY POOR INDICATOR OF RENAL FUNCTION.

That's what I had been thinking all along.  My creatinine had been elevated, BUT ALL OF MY OTHER NUMBERS WERE JUST ABOUT PERFECT.

He went on to say that he'd do the procedure if I wanted it, but it IS invasive.  I asked him for his honest opinion, and he told me straight up that if it was his family member, he'd say "no".

So, I said, "Thank you very much.  Good bye!", and that was the end of that.

I personally think that the constant drinking and peeing I did in the hours leading up to the biopsy tipped my creatinine downwards.  I wasn't thinking, "Oh, I have to drink lots of water so that my numbers might improve.", rather, I was just very anxious and that seemed to give me a dry mouth/throat, hence the several bottles of water I went through.

I have my next set of labs later this month, and I won't be surprised if my creatinine is up again.  If it is (I don't usually drink as much water as I did in Madison!  That was a bit of an anomaly), I don't think anyone will be bothered by it. 

So, the lesson is, once again, that creatinine alone and without context doesn't tell any one enough to warrant a biopsy.  We all tend to look at creatinine first and creatinine primarily, but I've learned that this just does not tell the whole story, not by a long shot. 

I hope this story helps someone out there and that it has made sense.  If anyone has any questions or comments, please let me know.  It was a very odd experience and didn't go as I thought it would, and I'm not complaining about that!  I got a real break!  Whew!

Wow Moosemum, that was a fantastic update. I'm so glad you didn't end up having that biopsy because I have always been told that they are very invasive and can lead to further kidney damage.

Regarding your point about not relying on creatinine and Cr alone, that is a very important point that really needs to be considered further by any kidney patient. Hydration, along with eating animal protein (& who knows what else) can really impact our serum creatinine levels. Personally, I have also seen different creatinine results depending on which lab had conducted the analysis. I always seem to get lower creatinine results when I get tested at a hospital compared to the leading private pathology company where I normally get tested.

I do also know that different meds will affect creatinine levels artifically that has nothing to do with underlying kidney function, eg fenofibrates that treat high triglycerides. If fenofibrates will elevate serum Cr levels, I wonder what other drugs may also do as well?

Anyway, glad to hear the update. Keep up the good fight!

[MooseMom]

It has been almost two years since my creatinine spiked (as outlined in my original post), and it has been just over a year since I was referred for a biopsy that ended up never taking place.

I wanted to share something that I learned that may help someone else somewhere down the road.

Renal transplant patients are always told to keep well hydrated and that even very mild dehydration can be a factor in elevated creatinine.

I had always been careful to drink more than I really felt the need to simply because I am a tx patient.  There were times when I thought, "Uh oh.  I am not sure that this month I really drank enough."  But, even then my creatinine remained below 1.2.

Since last year, my creatinine remained anywhere between 1.25 and 1.3 which was fine but still was not good enough for my liking.  (My other numbers have remained just fine throughout all of this.)

So, in the past few months, I decided to experiment a little bit and made a concerted effort to drink A LOT!  Starting 2 days before labs, I'd drink at least 8 12oz glasses of water a day.

And sure enough, my creatinine dropped back down to below 1.2.

I take away a few things from this.  One, at least I now have a strategy which is just to keep drinking drinking drinking drinking.  Two, I am not sure why drinking this much more is necessary NOW but was not 2 years ago.

Anyway, that's it for now.  I guess the bottom line is if you experience sudden elevated creatinine that remains above YOUR norm for an extended period of time, and IF your other numbers are OK, and IF there are no signs of rejection, try doubling (at least) the amount of water you are drinking.

I know that sounds obvious now after two years, but I really thought I was drinking enough.  It seems that now I need more hydration for whatever reason.

I hope all of this helps someone out there.

Thanks to everyone who has read and/or responded to all of this.  I am grateful for this very supportive community. 

[Michelle2016]

Thanks for sharing it with us.

Take care.

[cattlekid]

MM, I am right there with you.  In April and May, my creatnine was above my normal baseline and my tac level was a little wonky too.  So I buckled down, hydrated like heck and was super diligent to make sure that I got my labs done at the exact 12 hour trough level (not 11 hours and not 13 hours). 

Lo and behold, everything was back on an even keel.  And I thought I was hydrating...like you said, I guess things can change over time. 

[MooseMom]

MM, I am right there with you.  In April and May, my creatnine was above my normal baseline and my tac level was a little wonky too.  So I buckled down, hydrated like heck and was super diligent to make sure that I got my labs done at the exact 12 hour trough level (not 11 hours and not 13 hours). 

Lo and behold, everything was back on an even keel.  And I thought I was hydrating...like you said, I guess things can change over time.

Oh, that's really interesting!  Thanks so much for posting this!

Do you measure how much you drink in a day (not counting for fluid intake like soup or water in fruit, etc)?  I've starting doing just that as a bit of an experiment, using the color of my urine as a guide of sorts.  Do you have a fluid intake goal?  SHOULD you/we have a goal?  What do you think?