Appointments with the neph

[AguynamedKim]

I've got my first checkup next week since this whole thing started for me about 4 months ago so I'll start to see how much my kidney's are declining at this stage.  I've been getting my blood pressure down to the 110-125/70-80 range so I'm happy about my progress there.  I've been OK about the low protein and even better about low sodium in the diet.  I've also been working out stenuously pretty good.  Ever since RightSide posted about how much sodium I can lose like this I've been especially appreciative of how much I sweat during my workout each day (a whole lot). 

I hope everything goes well with your appointment, MooseMom.  You've been doing a great job taking care of yourself and you're feeling good so I think you'll be having that nice dinner out.

[MooseMom]

I'll be very interested to hear about your appt.  When next week will it be?

I have been doing the neph thing for over 6 years now, and I had never missed an appointment until this year.  I have missed THREE appts this year!  The first one, I couldn't drive to it because I had just had gallbladder surgery.  I could barely move.  The second one, my mother died that morning.  The third one I just rescheduled; it happened to fall on the day that they were having a ceremony at the city to commemorate my husband's 20th anniversary working there, so I had to go to that!  I rescheduled the appt for today, and last night I was feeling snotty; this morning I awoke with a full-blown cold complete with chills and low-grade fever, so my husband called and cancelled for me.  Thing is, though, that on each occasion, I'd already had my blood work done, so the neph can just send me a copy or call me if he thinks I'm dying.   Hopefully I can get through the day today without any phone calls, although my DH did leave a message asking what I could safely take for my sniffles, so maybe they'll call about that.

Achoooooo!

[Deanne]

I'm sorry you aren't feeling well. It's kind of funny in a way to cancel a Dr appointment due to illness! When is your new appointment? I've never canceled / rescheduled because sometimes it's hard to get a timely appointment in the first place. I have to schedule them at least a month out to be able to get in.

[MooseMom]

I've seen my neph on a regular basis...every 2-3 months for years now.  The other times I've had to cancel an appt, the nurse just sends me a copy of my labs (she knows I've kept them for all these years) and a new lab order for next time.  So far, these appts have been to just review my labs.  I know I'm not sick enough yet to have to start D, and that's all I care about, really.  Anyway, once I get these bits in the mail, I'll call to schedule my next regular appt for 2-3 months from now.

[woodsman]

good luck there MM i have my reprive so you shall have yours also.... I just know it.. Hang in there..  i posted my pic in the members picture thread, don't be scared 

[Deanne]

You've seen you neph a lot! I had appointments twice a year up until a couple of years ago, then three times a year, then four times a year, and now it looks like it'll be every two months. I keep forgetting to ask the lab if they can send a copy of the lab results directly to me at the same time as they send them to my neph.

[okarol]

You've seen you neph a lot! I had appointments twice a year up until a couple of years ago, then three times a year, then four times a year, and now it looks like it'll be every two months. I keep forgetting to ask the lab if they can send a copy of the lab results directly to me at the same time as they send them to my neph.

The lab sometimes won't send them directly, but the neph's office probably will. You can ask for your last 6 labs if you want to see how your numbers have changed.

[MooseMom]

I know that you can sign up online to get your results if you go through Quest Diagnostics, but you have to have your neph agree to this.  I've never seen my neph use a computer...every time he sees me he makes some remark about how many trees have given their lives so that they can live in my file.   But I've been to his office so many times that his nurse already has my copy of my labs there waiting for me when I check in.

I DID get my reprieve!  Yay!  GFR 18, up from 15 last time, and creatinine down to 2.71 from just above 3.  It doesn't mean that much...it's just a snapshot of what my kidneys were doing on that day, but it DOES mean that no one is talking dialysis for the next couple of months.  The nurse called me with my results, and she didn't mention any other numbers, so I'm going to allow myself to assume that nothing else is glaringly amiss.

[Deanne]

Congratulations on your reprieve! 

[AguynamedKim]

I DID get my reprieve!  Yay!  GFR 18, up from 15 last time, and creatinine down to 2.71 from just above 3.  It doesn't mean that much...it's just a snapshot of what my kidneys were doing on that day, but it DOES mean that no one is talking dialysis for the next couple of months.  The nurse called me with my results, and she didn't mention any other numbers, so I'm going to allow myself to assume that nothing else is glaringly amiss.

That is awesome, MooseMom!  Those numbers are fantastic and surely show you are doing a whole lot of things right.  Enjoy that dinner - I'm so happy for you!

As for my appointment, next Thursday, though I don't have an order for blood work yet so it'll be another couple of weeks until I really know anything.  We're just starting to settle into a check-up routine so I'll know better next time to ask for an order for lab work 2 weeks before I go in.  I would simply move my appointment right now to after my labs except I have some other things to talk to the doctor about - namely some sharp pains in my stomach I have occasionally.  I get the pain sometimes when I eat, and they tend to be very brief.  Everything else seems OK so just not sure what's up...

[MooseMom]

I wish I could take credit for doing things "right", but I'm not doing any thing any differently.  It's entirely possible that my next labs will show gfr 15 and creatinine back up to 3...it all seems so random.  I can take my meds and eat properly and so have a modicum of control over things like blood lipids, K and PO4, but there isn't really anything that can be done specifically to improve gfr and creatinine. 

[AguynamedKim]

I would say for us, stability or slowing the decline is darn good news!  I know that's what I'm hoping for.  I know any "improvement" isn't really improvement but I'll take that as a positive sign - especially over a large decline in GFR or increase in creatinine.  I don't think you give yourself nearly enough credit, MooseMom.  The fact that you do monitor and control your food intake I believe has and will continue to heavily impact your overall health and slow the decline of your kidney function.  If nothing else, it makes you healthy in spite of your kidneys, and makes sure that you aren't one of the many unfortunate that don't even make it to dialysis/transplant due to deadly complications arising from declining kidney function.  Face it, MooseMom, you rock.
 

[woodsman]

told you so!!! MM

[MooseMom]

told you so!!! MM

So you did..

Kim, don't get me wrong...I won't diss "stability" or "slow decline"!  Last year, I had to see my PCP (who is in the same practice as my neph) for non-renal related matter, and he told me that I was lucky that I still had any kidney function at all.  I got all over him for that...I told him that "luck" had absolutely nothing to do with it, that anything that appeared "lucky" was the result of vigilance and damned hard work.  I still can't claim to do anything that specifically slows the decline of my renal function, but I DO do a lot to keep the side effects of CKD at bay, ie my diet and my mountain of pills and a good amount of exercise.

[MooseMom]

I got my full lab results in the mail today, and I will happily yet humbly accept all congratulations for having phos and potassium levels WITHIN NORMAL RANGE.   I've worked really hard to make that happen.  I'm off to have celebratory sip of Coke! 

OK, who else around here has an appt coming up soon?  Anyone need some encouraging words or a bit of support or maybe a sedative or two?

[Gandalf]

Before I started dialysis, that time between the blood tests and the actual visit to the Nephrologist to hear the outcome was utter torture.  In some ways, the anxiety of not knowing and anticipating dialysis is so much worse than actually doing it!  Somehow, sometimes, the agony of what is one's mind is greater than the actual expereince.....!  or maybe I'm just a control freak!

[MooseMom]

Before I started dialysis, that time between the blood tests and the actual visit to the Nephrologist to hear the outcome was utter torture.  In some ways, the anxiety of not knowing and anticipating dialysis is so much worse than actually doing it!  Somehow, sometimes, the agony of what is one's mind is greater than the actual expereince.....!  or maybe I'm just a control freak!

Well, if that makes you a control freak, then I guess I am too because waiting to hear those results is soul-destroying.

[AguynamedKim]

So fantastic to hear your labs were great, MooseMom!  It's peanutbutter jelly time!   

[MooseMom]

Oh no...it's that time again.  Nephtime.  Got an appt coming up.  Can't find my Xanax...

[AguynamedKim]

Likewise it's time for me too.  I'll be home doing my 24HR urine test tomorrow and getting all my labs drawn on Friday.  I've been pretty good overall so I'm really going with "there's nothing more I can do now - I'll make any necessary adjustments when the labs come back and I meet with my doctor."  That still won't prevent me heart from practically leaping out of my chest when i get that e-mail that says, "You've got lab results.  Click here to see them."

I'm sorry you can't find the Xanax, Moosemom.  I hope you're able to give yourself credit for being vigilante and taking good care of yourself and it helps soothe you during this time.  Otherwise, I hope you find the dang Xanax!  I may have to "borrow" a couple of Xanax from my dog next week (yes, she has a prescription for them) if I work myself over my lab results or my hypochondria takes over again I end up thinking I have ebola or something like that.

[woodsman]

Good luck to you both.. 

[MooseMom]

I am pleased to report that I do not have ebola.

Other than that, my labs came back pretty much as they did last time...no significant change.  Creatinine 3.  Egfr 16.  Red blood cells ever so slightly below normal, but hemoglobin and hematocrit within normal range.  Potassium 5.4 which is the merest hint above normal.  Neph didn't have much to say other than he had a new granddaughter.  If that's the main topic of conversation with my neph, then I'm happy.

Did find the Xanax and did take one.  I got to the appt without going batsh*t crazy, so I guess it helped.  When I checked in, I asked to have my copy of my results as per usual.  They were not in my file.  At first I was just annoyed at the incompetence, but the more I thought about it, the more I thought, "Oh my God...my results are so bad they don't want me to SEE them!  Maybe I DO have ebola!!!"

I think I might have to have a little lie down; the relief (at least momentary relief) has made me just want to go to my bed.

[AguynamedKim]

I am pleased to report that I do not have ebola.

At first I was just annoyed at the incompetence, but the more I thought about it, the more I thought, "Oh my God...my results are so bad they don't want me to SEE them!  Maybe I DO have ebola!!!"

   That was awesome, Moosemom.  I'm so glad you got to talk about his granddaughter, that makes me happy too.  Great job with keeping the labs looking good.   

I'm home today doing my 24HR urine test doing some work and trying to figure out Facebook.  I go in tomorrow for the big blood draw (I think we're running 5 blood tests).  Is it silly that I ate a little extra protein today (an extra egg white) just to see if how much more protein I might pee out?  I think so... 

[boswife]

oh moosemom, i hope you got some rest and peace in your mind     Mine ( whats left of it    ) is really on the fritz right now so have even been staying off the boards as i cant form a complete thought too well..  We are loving home D i can say that, but for some reason, im just tuckered out, or goen like crazy..lol   Im glad your 'bloods' are holding and with your care of yourself, you just may be able to hold it down..  Sending hugs, and misses of chatting here.   

[MooseMom]

Aguynamedkim, you do make me laugh!  Good luck on your tests, and make sure you report back.

boswife, I know you have a lot on your plate right now, so thank you for taking the time to respond.  Trust all is well with you; you sound busy but happy!