I learned something new today

[MooseMom]

I learned something new today, and I'd like to post about it in the hope that it might help ease the mind of anyone who experiences the same thing.  Maybe this will be nothing new to most of you, so apologies in advance if this is irrelevant.

I'm four years post tx.  I've been fine and stable for all of that time.  I keep a record of all of my lab results as I am sure the rest of you do, too, so I can easily look back for patterns or spikes.

My egfr tends to run anywhere in the 50s.  My creatinine tends to run anywhere between 1 and 2.

I got a shock today when I saw my latest labs.  They were taken last Thursday.  My egfr had dropped to 44, and my creatinine had spiked at 1.33.  My other values are fine with K, wbc, hematocrit, and glucose unchanged and still normal.  Despite that and despite knowing that these numbers represent only a snapshot, I felt really panicked and did what I usually do which is to call my husband at work and cry into the phone.

Then he did what he usually does and called my coordinator on my behalf because I'm basically a weenie and didn't want to talk to her myself because I was afraid I wouldn't make sense.  (Well, not really, because I don't think that anyone who is dealing with CKD and can form a coherent sentence is a weenie.  It just sometimes gets to be a bit too much, you know what I mean?  All of the cumulative anxiety...)

Anyway, what she said was interesting.  First, she explained that for every patient, they give a "slot".  When it come to creatinine, the "slot" they've assigned to me is 1.6.  Anything below that they barely pay attention to.  Anything above that they will start to watch.  Do you all know what your "slot" is?

My husband and I had noticed that my creatinine and egfr tend to go spikey in August.  I thought that was only a coincidence and didn't think it explained anything.  Well, I was wrong.  My coordinator explained that it is very common for these values to spike in the summer, especially in a hot summer.  She gets more calls from anxious patients during the summer than at any other time of the year.

I am well aware that dehydration can cause these values to spike, so I was careful to drink extra water.  Apparently that is not always enough for us kidney people, she explained.

Then she told my husband to tell me, and I quote, "You have nothing to worry about."

So, I feel more confident, and I reckoned that some of you might get a little solace from this story.

[coravh]

You have been very lucky in that your values seem to stay stable. Mine have never been. My baseline creatinine has typically been between 140 and 180 (1.59 to 2.05 in US numbers). It's all over the place. All the time. And as for eGFR? It's notoriously unreliable especially if you are a smaller female (like me) and a tiny bit dehydrated. Usually in the 30s, but sometimes lower and sometimes higher.

I'm now almost 14 years post kidney tx (8 years post panc) and unless I get at least 3 consecutive labs that steadily increase, I just shrug it off to the vagaries of my results. Try not to panic unless you see a definite trend or do not feel well.

All the best to you.

[DialysisGoneFOREVER]

Interesting Moose Mom. You said your creatinine rose to 1.33 so what was it before that?

My creatinine was the same 1.35 in August as it was in July. I don't buy that creatinine rises in the summer. If we lived like the Pilgrims without air conditioning and always exposed to the sweltering heat I can understand. But most of us have A/C all the time and have plenty to drink whenever we want.

[kickingandscreaming]

most of us have A/C all the time and have plenty to drink whenever we want.

First of all, not most or all of us do have AC.  I only have it in my bedroom and don't use it all the time.  But besides that, AC is itself very drying.

[MooseMom]

Thank you for that, corahv.  We here at IHD have followed your story for quite some time now, and we know you're a pro when it comes to things like this.  The logic part of my brain usually has control, but sometimes the panicky bit comes to the fore.  Yesterday was one of those times.  I posted this for all of the other people who might want a bit of reassurance, so I thank you for your own contribution!

DialysisGoneFOREVER, see, I didn't buy the whole "summertime" explanation, either.  It was my husband who pointed out the correlation, but he's never had a kidney transplant, so I pooh-poohed that theory.  I believed like you do, that with a/c and access to plenty of water, it didn't make a lot of sense.  But once my coordinator said that a lot of patients experience the same thing, I had a think about it.  Ever since my tx and the subsequent meds, my goodness do I run hot!  Summer is a real trial for me.  I can't bear the heat.  I have a/c AND a dehumidifier, but my house faces due south and in the summer, the room in which we spend most of our time gets downright hot.  I close the blinds, of course, but it helps only so much.  I can retreat to the basement, but that's no way to live!  I can't make dinner from the basement!  I still have to do the shopping and the cooking and the gardening, etc, so it's not like I can escape the heat entirely.

Now, winter is another thing altogether.  I'm from Texas, so I never thought I'd say this, but I come alive in the winter.  When it is time to shovel the drive, my neighbors are in parkas and arctic gear, but not me.  No, I'm shoveling away dressed in sweatpants, a sweatshirt and then a lightweight winter jacket.  If I wear a hat, I get too hot! 

So, maybe it really is just me.  As I type this, it is 73F in my house.  I'm still in my lightweight nightgown.  It is dark and rainy outside.  But I'm still hot.  But in the winter, I set the heat at only 68, and I leave the bedroom window slightly open even in February.

Oh, and my creatinine last month was 1.19, so for it to spike suddenly to 1.33 was a bit of a shock.  The last time it was that high was, yep, August 2015.

[DialysisGoneFOREVER]

most of us have A/C all the time and have plenty to drink whenever we want.

First of all, not most or all of us do have AC.  I only have it in my bedroom and don't use it all the time.  But besides that, AC is itself very drying.

 NOT having A/C is a LOT more drying! Before my kidneys failed I went overseas to places where there was no A/C and when it's hot you sweat like crazy and lose a TON of fluid! So you clearly retain a LOT more fluid with A/C than without!

[SooMK]

Thanks for this MM. It is interesting. My July creatinine was up somewhat but when I looked at the graph offered by Quest, which is where I have my labs done near home, I saw that it had been that high before. Now I want to go back and check to see if that was last summer. The heat has been bad this year and we have only a couple of room air conditioners. I have accepted that I won't get much done when it gets too hot. Happy nearly fall.

[cattlekid]

I am definitely a summer spiker when it comes to my creatinine.  August and September are my high months.  It's been like this since long before my transplant and has continued for the last three years post-transplant.