Appointments with the neph

[rsudock]

Moosemama glad that your blood work is holding steady!!! phew!

Kim hope the urine collecting gives a good report...let us know how the appt. goes!!

xo,
R

[AguynamedKim]

Well, I turned in my urine sample this morning and the only issue was that I put in just slightly over the markings on the jug - basically a little over 3 liters.     I came awefully close to simply not having enough room.  I've been drinking more in an effort to lighten the load on my kidneys but I didn't realize it was 3+ liters.  The nurse was concerned that the lab results might be slightly skewed because they "max" out the input at 3L so my protein concentration in my urine will be reported as being higher than it really is.  I told her that we'll take a look at the results and if I feel I need to retest (and drink less water) than I'll do that.  I don't think it was enough over that it's going to skewer my results too much.  They took their 2 big tubes of blood for all the tests and now...the waiting.

[MooseMom]

Kim, when will you get your results? 

[AguynamedKim]

Results should be back this week - I'm guessing towards the end of the week.  In the meantime, I get to distract myself by doing taxes!    

[AguynamedKim]

I got my results and it looks like I'm holding relatively steady (a small increase in Creatinine of .04).  I'll just keep my data so I can track it over the long term.  All the other tests in the comprehensive metabolic panel were in normal ranges.  My urine test put my protein, creatinine clearance and creatinine within "normal" ranges (versus the 1+ protein I had when I first started this).  I attribute the tests coming back within "normal range" to a low protein diet (not improved kidney function).  It looks like the 30-40 grams of protein I'm taking in are keeping my serum protein high enough for now, though those numbers did decline slightly.  The only test the doctor expressed concerned about was my low HDL level.  I work out 40+ minutes a day, 6 days a week.  Not sure what else I can do to raise it.  At least total cholesteral was way down (to 154).  I'm thinking my diet has played a huge part in that along with the fish oil supplements I've been very good about taking.

All in all a good set of labs in light of my desire to keep the disease progression as slow as possible.  Thank you all for your support.   

[AguynamedKim]

A side note on HDL.  I've already got the no smoking, exercise 40+ minutes a day down.  I don't think I want to eat oily fish, salmon, cheese and nuts due to the high protein content.  It's possible that one of my problems may be my very low fat diet (many days it's ultra-low).  I haven't missed the fat, to be honest, I've just naturally removed it from what I cook for myself.  The other is that I stopped drinking alcohol in moderation.  I'm reading more and more how high HDL levels are far better for you and that they can overcome high LDL levels by returning more cholesterol to your liver than the LDL can deliver to the body.  So time to eat monosaturated fats and drink some wine.

[MooseMom]

I take it the results came back negative for Ebola...

Great news!!  I'll bet you're relieved!

[AguynamedKim]

I take it the results came back negative for Ebola...

Great news!!  I'll bet you're relieved!

 

Yes, I forgot to tell you about that!  Totally negative for Ebola!

 

I'm definitely relieved and happy with steady state thus far.  I saw the doctor and she said she's more concerned about my low HDL than my kidney function as this point - especially since my LDL is still high.  She agreed that my fat was too low in my diet and that moderate drinking could be good (though I have to be careful not to aggrevate my gastritis).  Also going to try to lose more weight (only 20 pounds to go after the 55 I've lost so far) as well as fit some more soluble fiber into my diet (oat bran).  She said I could look at high dose Niacin as well but that we could try these dietary changes first especially since last she recalled it was inconclusive if high dose niacin was risk factor for kidney disease.  Monthly cholesterol labs while I try these things out.

[MooseMom]

Well, yippee yay, yippee yay, it's that time again that we all love so much!  Lab time!  Yep, gotta give a blood/urine sample this week for my neph appt 7 July.  Gosh, this gets me into such a piss-poor mood.  I find I just get angry at the world, resentful of this horrible intrusion into my life.  My husband stuffs himself with ice cream, chocolate and bananas while I do the mental calculations on how quickly that particular combination of foodstuffs would kill me.

I hate this disease, I really do.  I don't care about the diet, and I am used to the pills.  It's the anxiety that I find to be so punishing.  I don't think I will ever really come to terms with it.  And I feel so alone in my battle.  My husband works hard, and when he gets home he usually sighs contendedly about how good it will be to have a nice, relaxing evening at home, which I, probably unfairly, read as code for, "I don't want to hear about your scary kidneys; it's not my problem."  So I tell him nothing.

[rsudock]

Hang in there Moosemama.
I hope you can stave off D for a bit longer...

xo,
R

[okarol]

I hope your labs are uneventful, but as Goofynina always used to say: Hope for the best but plan for the worst. You're as prepared as anyone I know. I hope you know you can lean on us. We want to know EVERY detail of your appointment! You're not alone, you're STUCK with us!
 

[boswife]

oh MM,    I wish  this was all easier, and mabie it will be once you are actually on D  i (of course i hope thats not for a LONG time of which i want for you to enjoy this time and not worry till ya got to worry    )  You'll see it's not so bad actually, and then, hopfully before you know it, you'll have a very successful transplant .  Or,,,,,,,,mabie you'll go in and they'll find you havent advanced at all, and your worrying for not. If only 'us' worryers/anxiety ridden people, could just do this all without  the danged anxiety, it would be a whole lot simpler.  I mean, we both learn all we can, are prepared and all, but it's the anxiety that  *hurts*.  When we were doing our nxStage classes, my chest hurt so badly i was quite sure i would end up in the hospital with a heart attack.  Not being dramatic either.  It hurt that bad!..  Then bringing it home, well, once again, even worse.  Mentally, i felt confident enough, but my anxious heart had a hold on me that i couldnt shake.  WEll, ya know what, it passed (WAY slower than anyone else in the universe) and it's easy peasie now and i wonder how in the heck i made such a big deal of it.  What im saying is, I wish you peace with it all Moosemom.  I wish you didnt go through this crap/anxiety part of it as i know THAT part all too well.  Your going to be ok how ever those tests go, and you have us   I wish the most wonderful outcome for you, and i wish you PEACE with what ever comes of it... 

[MooseMom]

Urp, well, it's just after midnight, and I have my appt today to get my latest results.  I don't feel any different, but I know that doesn't mean much.  I swam for an hour today, and more often than not, I walk between 2 and 3 miles a day or do something else by way of exercise, so I'm figuring that this means he won't stick me on D just yet.  But I am haunted by the memory of the day I was returning from my virtuous long daily walk and hearing the phone ringing indoors; it was the neph's nurse all a-flutter with the news that my K registered 6, which was rather alarming.

I know I'm not the only pre-D person around here.  How about you, Jean...when's your next neph's appt?  Anyone else looking forward to a similarly joyous day?

[looneytunes]

MM, I'm crossing all appendages for you today and hoping for the best outcome for you.   

[boswife]

Any news. For us?

[boswife]

i used to be real patient... but not so much anymore.. Sooooooooo, whats up MM??? dont need to keep us hangen now do ya???   

[rsudock]

any news Moosemama? thinking of you!

xo,
R

[MooseMom]

Well, it's not quite time for D yet, but the rest of the news wasn't all that great.  I'm not ready to talk about it just yet, but thanks anyway for asking.

[boswife]

Im sorry MM, here when your ready though.   

[AguynamedKim]

Thinking about you, Moosemom. I'm truly sorry the news wasn't all that great but I'm awfully grateful that you're hanging out here with us and helping us all along. Whatever may come, you've done a great job doing what you can when you can and that's going to make all the difference in you continuing to be relatively healthy along with dealing with any challenges that may arise. I'm so proud of you and honored that you are my friend.

[Chris]

Just saw this thread MooseMom. I hope you do not need to take any kayexelate (sp?) for high K
Sorry I had that milkshake in front of you too.It seems from reading that the slow progression of being put on D is harder than being told in the ER that you have renal failure and yu can't go home and that you (well I) need to have dialysis soon. Two ends of the spectrum and I realize you are having a tougher time than I did.
 
I have no uplifting, smart   remark to give to be uplifting at this time tho.

[MooseMom]

I have no uplifting, smart   remark to give to be uplifting at this time tho.

Well, that's just not good enough.

Don't worry about the milkshake.  The last time I had a milkshake, I was probably 8 years old.  I'm just not a fan, so that's one food group that I really don't miss in the least.

My K isn't high enough to take the med you mentioned.  I do, however, take 8 sodium bicarb tablets a day to combat acidosis which can elevate K, so I am being treated, but just not with the yucky stuff.

[rsudock]

 

xo,
R

[Chris]

I remember those pills, I had to take them briefly while on D. Still better than drinking kayexelate 

[MooseMom]

It seems from reading that the slow progression of being put on D is harder than being told in the ER that you have renal failure and yu can't go home and that you (well I) need to have dialysis soon. Two ends of the spectrum and I realize you are having a tougher time than I did.
 

You know, I really appreciate this sentiment, I really do.  It's not a contest; it's hard for anyone who has lost their renal function, whether it occurred quickly or slowly.  But I just wanted to respond to this because yes, it IS hard, and I appreciate it that someone recognizes that.  I was diagnosed 20 years ago, but it has been the past seven years that I was told how bad my kidneys were, so for seven very long years, I've been struggling with this.  It's a peculiar kind of hell.