Would it help to try some relaxation techniques or yoga? Are there any he would recommend? Is there a physical therapy department that might recommend some exercises useful for your body? Can I have a referral to physical therapy?

FREQUENTLY ASKED QUESTIONS

I am going to the nephrologist for the first time tomorrow. What are some questions I might ask?

A few tests you might ask your nephrologist:
UA - urine analysis - ask that your urine specimen be checked microscopically to see if there is blood in your urine, any casts, any proteins. This is a special examination not always done. Ask what your urinary pH is. When you give the specimen, make it a clean catch specimen. Ask for this to be done. It is called a mid stream clean catch urine specimen.
GFR - glomerular filtration rate.
This can be done by a 24º urine sample and calculated as a creatinine clearance or an
iopthalmic test can be done which takes 2º hours and is said to be more accurate as it directly measures glomerular filtration. Another test which is only done at centers for ADPKD is a specialized MRI examination which calculates the blood flow to the kidneys. This is what the medical researchers will be using to verify that OPC 31260 is indeed working with individuals who have polycystic kidney disease.
MRI - CAT scan. Ask if you can get an MRI or CAT scan to determine the extent of your PKD and which organs are involved. Ask if you have liver cysts, pancreatic cysts, and if you have kidney cysts how many and is it in both kidneys.
Electrolyte panel including calcium, phosphorus, potassium, sodium, base excess.
Kidney function tests to include serum creatinine, blood urea nitrogen, and electrolytes.
CBC - a complete blood count including a differential of your white blood cells and an ESR, a sedimentation rate. Ask for indices of your hemoglobin and hematocrit. To check if your anemic and the source of the anemia. Anemia in long run can cause the heart to overwork giving one left ventricular hypertrophy, LVH. Once found this can be easily corrected.
Lipid panel including cholesterol, HDL, LDL, homocysteine level (usually high in ADPKD and correctable by taking Vitamin B6 B12 and folic acid) and hsCRP (highly sensitive "C" reactive protein), thought to be a better indicator of heart disease risk.
Blood pressure. If your pressure is above 110/70, ask him what you can do to lower blood pressure to get it down to this range. Gone are the days when our blood pressure was measured at 140/90 and told we should come back in three months. Now it has been discovered by tight control of blood pressure at 110/70 or less we can maintain the health within our kidneys for perhaps 15 more years or more. What was said by the study out of the University of Colorado was that dialysis or transplant could be delayed by 15 years or more.
If your doctor would be interested in using the new experimental drug for clinical trials OPC 31260, I can email where he can obtain information for this.
Most of all good luck and enjoy your visit. Ask all your questions. Explain to him you are new to PKD and want to know all you possibly can about how to delay, perhaps forever, end stage renal disease, dialysis, and/or transplant. 40% of individuals with PKD never need dialysis or transplant. Let us hope more and more of us can be among this group.

Polycystic kidney disease - kidney transplant - kidney disease - liver transplant - enlarged liver - pkd ­ pld ­ polycystic liver disease - PKDiet