Preparing for the First Nephrologist’s Appointment.

There’s a theory that keeping the blood pressure under control can delay dialysis.  After all, the kidneys do release renin, the hormone that regulates blood pressure.  I’ve been on an ACE inhibitor for over 20 years, not knowing that this could also slow the progression of my CKD. I strive for 130/80 or lower.  Although, the medication apparently has done too good a job of this since I’m presently dealing with LOW blood pressure.  Through my research, I began to understand what hpb has to do with renal disease.

High blood pressure can damage small blood vessels in the kidneys so that they cannot filter the waste from the blood as effectively as they should. Nephrologists may prescribe hbp medication to prevent your CKD from getting worse too quickly since they reduce the amount of protein in your urine.  Not too surprisingly, most CKD related deaths are caused by cardiovascular problems.

What especially troubles me is that even a small amount of kidney dysfunction can double the risk for this sort of problem.  It’s been over two years for me, but I still have difficulty understanding that I am at risk for a heart attack or stroke. But what makes me angry is that now that I have CKD, my children have an increased risk of developing it.

I called and e-mailed family members, both closely and distantly related.  I found high blood pressure, high cholesterol, cancerous and benign tumors and Parkinson’s Disease, but nothing that affected the kidneys. This was becoming more and more puzzling, to say nothing of the panic I was starting to feel.

Didn’t people die from kidney disease? My younger daughter had just become engaged and my older one lived across the country from me.  Frankly, I just plain didn’t want to die.  I was frightened, so I started doing what I usually did when I was in a spot: research – something no one in a panic state should have to do. It colors your interpretation of what you read.

Meanwhile, my new family physician helped me find a specialist who was covered by my insurance.  I lived in Arizona but had a New York based insurance company, so I needed the help. I see the specialist twice a year.  It could have cost me hundreds of dollars each visit, but with the insurance I am responsible only for the minimal co-pay.  This is why it’s important to find a doctor on your medical insurance plan.

As it turned out, I hadn’t even known that this specialist was called a nephrologist, despite my English teacher knowledge of Greek (nephros) & Latin (renes) roots.  I began to wonder how my education could help me deal with this serious disease, IF it could at all. Maybe my computer skills were more important here.

Asking the doctor questions wouldn’t help me yet, because I didn’t know what to ask at this point.   Although, I did intend to comply with his office’s request that I bring either my prescription medication or a list of them with their specific names, dosages and frequency of taking them, as well as a list of all the natural or alternative medications I take.

I intended to also bring a list of questions with me. I knew that when you become nervous, all those pertinent questions fly right out of your head.  I would have offered my symptoms too, but I didn’t have any that I could recognize.  I’d already had my medical history faxed to the nephrologists and didn’t think x-rays of my previously broken bones would be of any help, so didn’t bring them.

If you do have some pertinent film such as an MRI or CAT Scan, it would be a good idea to bring it with you on that first visit. This is the place to mention that intravenous dye sometimes used with an MRI or a cat scan for contrast is not great with CKD, especially if you have stage 3 or higher. The ingested dye stays in your intestines, nowhere near your kidneys, so they are not a potential problem.

One thing I was absolutely sure I would be doing is taking notes so I could review them at home, maybe even ask for a sketch of where the kidneys were if it still wasn’t clear to me after it was explained.  As you’ll see, the best laid plans of mice and men (and with apologies to Mr. Shakespeare, women, too) often go astray.

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