The courage to rise above it all!

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deanne65
Posts: 20
Joined: Mon Nov 21, 2011 7:01 pm

The courage to rise above it all!

Post by deanne65 »

I have been reading from many members who share my own concerns, many of whom are very ill. What amazes me is the outright courage and incredibly strong character shown! I have yet to be medically diagnosed with CKD (I am holding out hope that it is an endocrine issue, and not my kidneys, but I surely am deceiving myself :( )
My full blood workup is on the Dec 1, at the Veterans Administration hospital. As I understand, the doctor-bureaucrat that works at the clinic has consistently said that my kidney function is "within" normal, but my symptoms say something much different.
My last EGFR was at 84, up some thirteen points from a blood test done a month earlier! I don't know what I did differently, other than change my fitness routine, but my creatinine level dropped from 1.1 to .96 . The difference did not make me feel any better. For the past few days, I have not been as nauseous, although I am often feeling light headed and foggy in the head. Should I mention this to the doctor? Of course, as many members on this site might suffer, I have trouble maintaining sleep. I have become overly dependent on medication to help me sleep, albeit just atavan (1mg) and melatonin.
As it stands, the Veterans Administration system is populated by plenty of mediocre doctors, on federal salary; and there are no specialists to be had, even though the VA designates interns as such, so as to fill in the gaps!
My only recourse, if I want to live, is to go through private practice, which I have already done for my asthma! The downside to this is the costs, not being insured! This is why the brunt of my tests and exams are at the VA!

If and when I am given a referral to a private practice nephrologist, whether my numbers show dysfunction or not, what might I expect on my first visit? I am wanting answers to this ongoing kidney issue, and all this time my EGFR has dropped rather preciptously since March of this year (3-18-2011: EGFR 103; Nov 5, 2011 84). How long might I wait before I am given a diagnosis of my particular ailment, if what ails me is directly from my kidneys? Might I have to wait until my numbers reach a certain level, or, are there other tests that might be run?
I have Ctscan next week, for my thoraxic area (unrelated to kidneys). I have tried, in vain, to have the Ctscan done of pelvic area, so as to capture my renal area, as well as the lower left lung lobe in question. I think I failed to impress upon the VA my request!
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