2006

For years NIH had monitored a kidney tumor on the remaining 2/3rd of my right kidney, my largest (the left one remaining after the '94 surgery was a little larger than 1/4th). I kept asking them to operate but they are conservative -- the game plan for VHL is to leave tumors alone until they cause a problem, and, in the kidneys, until they reach a certain circumference (between 3.2 to 3.5). Then they remove them before they metastasize. These guidelines are based on years of scientific and medical study. NIH heads this research so they know what they are doing and felt confident in this decision. It was just one of those times I wish they'd take the patient's feelings and intuition into consideration. In the spring of 2006 they finally deemed it necessary. My hopes were briefly raised about possibly doing it non-invasively by laser but then they decided that wouldn't work.

I went into the surgery with a bad feeling about the whole thing -- I hadn't felt so negative before with surgeries, it was more than the jitters. I just knew it wasn't going to be a positive outcome. The surgery went badly. It took 14 hours. Nine surgeons worked on the kidney and they even benched it (took it out) to work on it. I lost 2 pints of blood. When I woke up in CCC, they wouldn't allow me ice chips or water until they determined my small left kidney could handle it alone, thinking if they had to they could implant a bit of the right one in my abdomen -- which they didn't want to do because it would be a matter of time before it failed and they were thinking down the line that was where a transplanted kidney would be hooked up.

Finally mid-day the next day time had run out and they let the right kidney go. The edema from that surgery had me retaining so much fluid I gained 40 lbs. When I tried to open my eyes they were so scratched I couldn't see and it was very painful. I told the nurse and she said occasionally the eye flips open during surgery and the cornea gets scratched and it gets better soon. When it just grew more painful I insisted on a dr, to her disgust. An eye surgeon came in and went 'Ohhhhh' -- something you really want to hear... My corneas were scratched quite a bit and both anesthesiologists came in and apologized. It took a week before I could read and see without pain.

A nurse assistant who couldn't speak English well came over the weekend and was the one elected to take me to get an X-ray -- go figure. She was unfamiliar with the layout of the hospital and no one was working on the weekend to stop and ask directions and it took an hour before we got to the location. To add insult to injury, when I could finally climb back in my bed she tripped over the line of my catheter and urine spilled all over the floor. As soon as Excy left at 10 pm after that grueling day the lights flipped on and a voice merrily announced they were changing my room - like this was exciting news -- oh, I was more than ready to get out of that CCC....I was in such poor shape I required a pic line directly to the heart for meds.

The head of surgery and all the drs who had been involved came in my tiny room and apologized. Because of me, they now know not to wait until it reaches that size when it's so close to a major artery. Far worse, the tumor had already started to travel -- now we had to watch for spread. VHL tumors turn cancerous in the kidney. In other organs most tumors are benign -- but when they do turn cancerous -- game over. They don't respond to chemo or radiation and grow quickly. Being a guinea pig for science sucks sometimes.

Fortunately it's been a long enough time that we're confident the cancer did not spread, and my little left kidney is still working hard. I was warned it might give out or the flu or bad cold might shut it down, but so far so good.

All in all this surgery was traumatic. When they start taking organs, you know you're getting down to the wire. The next surgery the following spring went better but even more organs were removed, and as one dr told me, we are getting down to the end game.

Next up: 2007. Then 2009. After these two posts, I won't write about this anymore, I promise. Until I have a new surgery - we are in a holding pattern for removing the remaining kidney -- then dialysis -- then a kidney transplant....