Tuesday, January 26, 2010

Answers? You don't need no stinking answers!

That seems to be what everyone is telling me these days.
Since May 9, 2008 I have been dealing with this on a daily basis, and not one single answer.
Today, I saw the kidney doc, and got a whole bunch of nothing.
I mean, I was diagnosed with kidney disease, and now they can't even tell me what stage I am in? How screwy does that sound to anyone else, because it sounds really damn screwy to me.

Let's backtrack for a sec.
~On 5.9.08, I weighed 165lbs, possibly 170lbs, due to the broken toes on both feet.
~Later in the day on 5.9.08, I weighed 200lbs, was breathing funny, and had no ankles.
~Was told by the hospital it was in my head, given an Ativan and sent home.
~Went to 2nd hospital on 5.11.08 and was given oxygen and told that since I am "not dying right now, we can't help you" and sent home.
~Hospitalized on 1.20.09 with a hugh fever, vomiting, shaking, the works. Inpatient for a week, not allowed to eat or drink and losing all matter of fluids in all manner of ways, yet still swelled up 15 more lbs overnight and nobody cared.
~Echos have been normal
~Leg US have been normal
~Stress test was normal
~MRI revealed benign tumor on my liver, and was ordered off of birth control in 7/08.
~Random episodes of swelling do not seem to be in correlation with any specific event/food/drink and have gotten me to 263lbs max.
~Meds being switched constantly, including today.

Med list:
Lantus insulin
Humalog insulin
Metolazone 2.5mg
Bumex 2mg (starting tomorrow or whenever I can pick it up- this is replacing the 80mg/Lasix)
Levoxyl 100mcg
Diovan 80mg (my BP doesn't tend to be all that high, this is for kidney protection, but now they are talking about how I should be on a higher dose, but I STARTED on a higher does and almost fainted straight away)
Zyrtect 10mg
Vitamin D 800mg/daily & 50,000mg/weekly
Omega 3 Fish Oil which is for cholesterol, but it is not covered, so I don't know how long I will be able to take it if I can't afford it. I have been DEATHLY allergic to every "medicinal" cholesterol med I have tried, so the nurse wrote for this. Insurance will pay $300/month for something that will kill me, but they won't pay $10/month for something that could very well help me. Go figure.
As needed: Proventil, Ranitadine, Flonase
Unsure: Topamax- was on this for years, taken off of it for a medical study I was in. Am done with the study and unsure as to weather or not I should go back on it or not. Kidney doc refused to say, have left message with my PCP.

Recent test results (rec'd 1.8.10):
Na 139
K 4.9
Cl 101
co2 28.1
Ca 9.3
Mg 2.2
PO4 4.5

Kidney tests: "Your kidney function is stable. Creatinine has improved since last check."

Glucose: "Your blood sugar is stable."

Liver tests
Protein 6.7
Alb 3.9
AST 16
ALT 20
ALP 153
T Bili 0.2
D Bili 0.1

Cholesterol "Slightly better than last time, except triglycerides, but this is not a fasting and this affects the results."
Cholesterol total 245
Bad Cholesterol (LDL) 143
Good Cholesterol (HDL) 51
Triglycerides 256

Thyroid Tests: "Your thyroid tests are normal."
TSH 1.67

So yeah, that's about it. I don't know what all of the tests/results mean, but I don't get answers when I ask. I have been told by my kidney doc that she has no other ideas, no other tests, no suggestions of another sort of specialist to seek out answers from.

I asked about natural suggestions and was told only that they are dangerous. (Right, so like, I have low potassium and I eat a banana and it will kill me? Bananas are natural and contain potassium. Please explain to me how this will hurt me? All I wanted was maybe a list of food that might AIDE in the getting rid of fluids...)

I am so lost. Please make it stop. I am begging, if any random person who reads this happens to know someone, some way who can help, I would be eternally grateful.

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