My First Stupid Question

[winter]

I know, I know, you all will say there's no such thing as a stupid question....because you are all soooo nice. So can someone answer this question for me:  Last year about this time, after seeing my family doctor for a regular annual check up, she sent me to the lab about 4 or 5 times for more urine samples.  She said a bunch of stuff about protein, creatine (sp) and levels were not quite right.  My blood pressure was a little elevated at that first visit but was normal on my 2nd visit (haven't had it checked since but in my entire life I have always had low/normal blood pressure.  She checked me for diabetes.  I am not over weight but I am a bit sedentary probably out of laziness and a general lack of interest. Don't smoke, but like my wine every night!  She ruled out cancer (thank God) and sent my file to the neph who ordered an ultra sound.  That was last March. Got a phone call in June/10 to take a sample of my urine to the lab every 3 months 3 times.  Took my last sample beginning of Jan and got a call from the neph's office that he wanted to see me "asap" (wish she hadn't used that term).  Of course asap with a specialist is over a month so I am seeing him on the 14th of this month.  Now the question:  do you think there is any possibility that I do NOT have some form of kidney disease?  Do some people just go through life with too much protein in their pee?  As far as symptoms go, my urine is foamy and pale (no odor) I do have stiff joints more often lately but as I said I don't do much exercise (this is going to change) and I am 61 years old so...not getting any younger. I've been a salt-a-holic most of my life, I have arthritis in my hand so I've been taking Tylenol every day pretty much for the last few years (I'm not taking hardly at all anymore).  Sorry to go on and on.... I know you probably can't give me a "for sure" type of an answer and I won't take your answers to the bank, so to speak.  Just looking for a little feed back.  This waiting to see the neph is killing me.  One more thing, I have heard from many sources that the neph I am scheduled to see is a real head hunter, quite mean actually.  I live in Kelowna BC and there is apparently only one other neph here.  How do you guys handle a specialist with attitude.  Not that I'm making any assumptions.  I haven't even met the guy yet! So glad I found this site and so grateful for any and all comments, good or bad.  Thanks in advance

[paul.karen]

The good news No Cancer 

I dont want to say one way or the other.  But if you are possably at risk of being CKD/ESRD i can say that the one pain drug you are allowed to take is tylenol.  Well at least thats what my Neph tells me.  So dont go around in pain take your tylenol if it helps.

Im sure you will get other answers.  Nice to meet you

[winter]

Really!?  I read somewhere that Tylenol is bad for your kidneys.  That would be good news as it also helps the stiff joints.  Thank you so much for your quick response and nice to meet you too.

[jbeany]

Well, no, we can't diagnose much, but the fact that you are seeing a nephrologist means they have test results showing something kidney related.  Foamy urine is a common sign of protein in the urine, which is a sign that there is probably some kind of an issue with your kidneys.  It doesn't mean it's related to a lack of exercise or diabetes - it could be something genetic as well.  There's also no way to tell from blood and urine testing if it's one or both kidneys.  My neighbor had cysts in one kidney, had that one removed and had no further issues.  Also, having kidney problems isn't a direct trip to a dialysis unit either.  You might go years with lower than normal function without ever dropping to a point where you need serious medical intervention.  My gram was diagnosed with kidney disease caused by poorly controlled diabetes when she was in her 70's.  By the time she was bad enough to need dialysis, she was 92, and refused to bother with it.   So, don't get to wound up until you actually get some results from the doc.

As for doctors who think they are gods......they're replaceable!  But, if you get stuck with one and can't get out for some reason, do everything you can to educate yourself about what he tells you so you can ask the right questions.  If possible, bring a wingman to the appointments.  You need someone to tag-team the doc with you and be clearheaded enough to ask the right questions when you are still stuck dealing with the emotions from whatever they just rudely dumped in your lap.  Plus, lots of the ones who like to be mean and rude are wary of doing it with witnesses. 

And for the good/bad news - Tylenol isn't necessarily bad for kidneys - but it's murder on the liver.   

[winter]

Such great advice! I feel better already!  Thank you so much!

[RichardMEL]

I'm not a doctor - I always preferred the (female) nurses anyway but... my two cents...

If you're spilling protein into the urine this is a classic indication of some kind of kidney problem. Now it may not be serious, or it could be. From what you've posted it sounds like they wanted to keep an eye on your creatanine and protein levels (and there's also this funky thing called the Creatanine/Protein ratio in the urine that I've just started learning about post transplant that they also like to look at). Creanaine is a waste product and basically an indication of how many toxins are running around your system. I'm not quite sure how that applies to creatanine in the urine since if it's being expelled that seems to be a good thing, but perhaps they meant levels of creatanine in the blood. Anyhoo it sounds like you've been trending up (or down as the case may be) with your lab samples (I've noticed nephs often like to go on trends rather than jump at one lab result) and the obvious initial thought is that something's going on and they want to follow it up.

Try to not be alarmed. I mean at the end of the day there's not a heck of a lot you can do to control it. It may well indeed be something else totally - you won't know until the specialist sits down with you and goes through whatever the labs have shown.

What I would do is sit down now and think of questions YOU want answrered and try to not get oyt of that appointment until you feel satisfied that the doc has explained their concerns and the potential issues with you to a level that you understand.

Good luck!

BTW yes there are no silly questions, only silly answers - this one isn't a silly one though (except for the part about the nurses )

[rsudock]

I watch the Tylenol like someone else mentioned it does cause liver failure. Speaking from personal experience...Good luck with your doc appt!

[Idodialysis]

           I also heard that Tylenol was bad and I have End Stage Renal failure and my kidney Dr. has me taking Percocet for pain. I have been taking it for 3 yrs now and I'm on dialysis as well and have been for 3 yrs as well. I guess everyone is different and what works for you and keeps you alive is the right answer. huh?

[winter]

I agree with you Richard about the part "try not to be alarmed"...at least in my head I do...it's that pit in my stomach that's not listening to my head that's got me worried.  I really shouldn't focus on negative what ifs especially because I have had such a healthy life. Smile, be happy right!?! Thanks for the pep talk and the point of view. 

It says right on the bottle of tylenol, people with severe kidney disease should consult their doctor.  I'm cutting down on it until I talk to the doc.  I'm opting for pain rubs instead...seems to help.

I'm taking my husband to the first appointment armed with a list of questions.  I'll report back, hopefully with some good news on Valentine's Day (the day of my 1st neph appt)

Thank you, thank you everyone!

[winter]

Any suggestions for questions I should ask the neph?

[okarol]

I would ask if blood panel had been done showing my creatinine level. Maybe you mentioned this... but it's much more definitive than urine results. You can request copies of your lab slips and go to http://www.labtestsonline.org/ if you'd like to know what the tests mean.

[jbeany]

Questions I'd want to know -
Cause - genetic, other medical problem like a cyst or lifestyle related?
 
Whatever the cause, what is the cure?  If it's something like a cyst, will surgery repair it?  Is it in one or both kidneys?  Is dialysis a likely treatment? 

Level of kidney function.  They rank it by percents.  15% is where most docs want you to start dialysis.  Some people need to start sooner than that - while still in the low 20's, some later - as low as 9 or 10 percent. You can live your whole life at 50% and never notice a thing.

Do the previous tests show a pattern of decline and what is the rate?  (I stayed in mid 20's for a decade before sliding down to a level where I needed D.)

If it is declining, what can be done to slow it?  Meds?  Exercise?  Weight loss?  Diet restrictions, like salt, protein, etc?

If D is the treatment, then you can come back here for more info - but there's no point in getting that far ahead of yourself!  We can help you find out options for the different types of D and everything you need to know about transplants if that becomes necessary.
 

[winter]

Okay, I've got my questions ready, I've already changed some of my lifestyle baddies (because this whole thing has scared the @%*"# out of me), my husband is coming along to ride shot-gun...I think I'm ready for my first ever neph appt. tomorrow.  Now if I can just get a bit of sleep tonight. Wish me luck

[jbeany]

Good luck!  Let us know how it goes.   

[winter]

Well things went really well at the nephs office yesterday and now I feel bad and a little foolish too.  When I first introduced myself here at IHD I said I wasn't sure I should even post, considering I didn't know what was wrong with me (if anything).  Considering all the heartache and worry a lot of you folks go through I really do feel like a whiner now.  The neph told me not to worry about things, he said he's not worried but he is doing more lab work and sending me for an xray.  My lab results were better in Jan. than they were last Jan. (2010) and he asked me if I had been sick or anything a year ago. Well, yes I had the worst flu of my life a year ago, then before the flu cleared up I had a tooth infection, cleared that up with antibiotics and had a root canal.  He said the levels are not alarming in the least and I shouldn't worry. My blood pressure was up a bit but he said probably because I had myself all worked up.  So more tests, an xray, supposed to check in to the family doc for blood pressure and unless something comes up in these lab tests he doesn't want to see me until June!  I was worried about the nephs reputation for being mean and I was wrong on that account too.  Great guy, very understanding and took a lot of time to explain things and asked a lot of questions.  Thank you everyone for your help and comments.  I think I focused a little (well...maybe a lot) on what could happen and basically lost this last month worrying.  Today I am refocusing on all the good things in life and like Richard said, "at the end of the day there's not a heck of a lot you can do to control things"....or something like that...Anyways things are good today and that's what's important. 

I just wanted to say how amazing I think each and every one of you are.  This is a good place to come for compassion, understanding, knowledge, encouragement and even fun! My thoughts are with so many of you, as I have read many of your posts.  Your strength and love for one another is truly inspiring.

[paris]

This is a great post to read         I am so happy for you.   We all get ahead of ourselves at times. It is hard not to when you are talking about such a life altering disease.   

I'm glad you are not going to let any of this take away more of your time.  The sentence "Things are good today and that's what's important"  is so true.   You said it perfectly.  Enjoy each day and don't let what might be take away the joy of today.    Don't leave us -- keep posting.  You're family now!     

[AguynamedKim]

Great to hear things are going well, Winter!  I know what you mean about worrying - I've been right there with you.  A friend of mine once said "Worrying is like paying taxes on troubles not yet received."  Yeah, he was an accountant type, but I know what he means.  I hope everything continues going well for you!
 

[jbeany]

We always like to hear good news on here!   

[RichardMEL]

Agree this is wonderful. Please winter don't feel silly for posting or that you can't fit in here, or have a voice. It doesn't matter that you're not near dialysis or ESRD yet. With a kidney function in the 20% range you're still probably going to wind up there at some point - probably far down the line - and it's important to keep these considerations in mind - but as your doc says - don't stress about it or worry at this point. Sounds like you're pretty stable for now, and that's awesome - a real worry off your mind and that's fantastic to read

I'm so glad your team is so supportive and making you feel more at ease with where you are at. Please don't feel foolish though - because you're not. The fact you came here to find more information and support is a very positive and proactive thing to do I feel and I definitely support that!