My Kidney Story, Part 2

For previous post, click HERE

(A quicker synopsis is - got sick, doctor #2 diagnosed, and referred me to Dr K)

Upon diagnosis by Dr Lee, he immediately prescribed a diuretic medicine, to alleviate the massive amount of water that my body had been collecting in my legs, face and hands. The diuretic made me need to … umm… pee a LOT more than any normal person should during a day. At the place I worked, it was really inconvenient, too!

My first impression when entering Dr. David Kessler's office (I only use his real name once, and only really use it because he is no longer practicing.) was how home-like feeling it was. Two older women at the desk were the nicest doctors’ office employees I had ever met! Didn't have a checkbook to pay my co-pay, no big deal, just mailed it when I got home. In looking around the office, it was obvious that Dr K was a WWII veteran. Pictures all over the office of aircraft or medical units during war time. Several signed by government big-wigs.

I found out later that he was a pilot, but not able to fly the F-16's in the pictures. :o) He was pushing retirement age, which he confirmed at my second visit when he told me that he was hiring on a partner to take over the practice when it was time for him to move on.

So - the Dr K era began. He explained to me that is very strange for someone of my age (22 at the time) to get the nephritis that was be presenting itself. At first glance (severe edema), urine sample and one blood draw, the diagnosis was acute adolescent nephritis. The next test that I got to do was a 24 hour urine sample. NOT fun. For starters, it’s extremely embarrassing. I learned that I needed to take the day off of work if I was going to be doing a sample of this nature. The good news is that I only need to do this once or twice a year.

When the sample results came back, we then proceeded with the process of having a kidney biopsy done. I don't recommend this to anyone. A kidney biopsy is so invasive that most nephrologists don't even do it, they refere to specialists to do it. I did so poorly at it, that I had to go three seperate times:

My first biopsy was done "traditionally." You have to stay awake during the process, so that you can tell them what you're feeling, and to minimize any damage to the kidney. I was laid down into an MRI machine, where they used imaging to locate my kidney. I then had to hold my breath and then inserted a 9 inch needle type instrument into my back. They had apparently not used enough anestesia, becuase I felt it very painfully. They did this three times, and sent off the biopsy to the Mayo Clinic. Not enough of a good sample, I would have to have another one.

My second biopsy was a bit more progressive, an ultrasound. They lubed up my back and used imaging again to locate my kidney. At this point all I could think about was the pain that the other process brought. I freaked out again, and almost passed out. The doctor stopped the procedure and sent what he could get to the Mayo Clinic. Again, not enough of a sample to make a good diagnosis.

My third biopsy was done by putting me completely under with general anesthesia and make a cut in the side of my stomach. When this method is used, they can physically stop motion of your kidney to do a biopsy. The major downside, though, is that it really is major surgery. I had an incision of about 9 inches, which is now a pretty cool scar with staple marks across the whole thing! Chicks dig scars, but not this one!

With the final sample, they were able to diagnose me with FSGS, focal segmental glomerulonephritis. HERE is what Nephcure has to say about it.

I was put onto prednisone, a steroid. This is the first step in almost every nephrotic treatment. This post is already too long, so I will pick up at this point again when I am ready to venture farther. I am finding it theraputic to write about this experience, and I pray that someone just finding out that they have this disease is able to find some comfort in knowing that other people have gone through the same issues.