A shaggy dog organ recital. My kidneys!  Tolvaptan, schlerotherapy 

The wonders of modern medicine!

I have a hereditary disease called polycystic kidney disease . Interesting! I inherited it from either my mother or father and my daughters have a 50% chance of acquiring it. No evidence they do. It results in the growth of cysts on the kidneys until the number and size of them shuts down the kidneys, necessitating dialysis and/or transplants.
Years ago I checked in with my family doctor and asked if I was fit enough to backpack across the Gobi Desert in Mongolia. He ordered blood tests and was alarmed by my creatinine reading. It was quite elevated He suspected that it may be the drugs I was taking and I quit them and was retested in a week and found it came down to an acceptable level though still high. He said when I came back we’ll do more testing.

When I returned I was scheduled for an abdominal ultra sound. While lying on the table the technician kept gasping in horror. And saying things like ,” Is this the first time you have been tested?”.
“Do you feel great pain?” And repeatedly uttered, “OMG, OMG”. When I asked her what she found she said, “ You will have to talk to your doctor after he gets the results”. “When will he get the results” I asked. “Three business days”. It was a Thursday morning so I counted off the business days and figured out I might get the results the following Tuesday, 5 days away. I went home and began to stew about what she might have discovered. After an hour of stewing I thought, “This is crazy”. And called my doctor. I described the technician's reaction and that now waiting 5 days for results was unacceptable. Within hours he called back to give me the full results. I had cysts, some the size of softballs, covering my kidneys, but that my kidney functioning was still not in the alarmist stage. He later told me the technician had been fired.

My nephrologist at the Toronto General Hospital had a DNA test conducted which proved that I was missing a hereditary gene whose sole purpose was to prevent cysts from growing on the kidneys. Imagine that!

I had MRI tests regularly to monitor the growth of cysts. My Doc, Dr Pei, head of nephrology, at U of T, is one of the worlds leading kidney researchers. I am a guinea pig on two studies. One a drug intervention, the other a semi surgical one. Twice now I have gone into day surgery and had a drill enter my back into a couple of large cysts. Drain them of the fluid inside. Then fill them back up with a toxic foam I call 'draino' which theoretically kills the lining of the cysts which is the source of generating new fluid to refill and grow the cyst. Presto, cyst dead!
The other intervention is a radical new FDA approved drug which has been proven, in short term research, to slow down and even stop the growth of cysts. It costs $30,000 a year. But fortunately, I am being given the drugs on compassionate grounds, phew! But I am not sure I am thankful. The major side effect is constant severe thirst. I drink up to six litres of liquid a day. I hate water so I find elicit substitutes. I am like a crack addict plotting my day from drink to drink. Guzzling fluids like it was my last sip. Craving ice cold bubbly fluids down my gullet. I am shocked what I will do for a cold drink. I am a danger to the public. I will steal wheat smoothies from strangers, I will grab a kids fresh slushie and race away while the kid screams. At whole foods I haul off cases of exotic drink novelties such as lemon grass/pomegranate sodas Or elderberry/ ginger versions.
The pathetic part of all this guzzling is that it all has to go somewhere. So I pee every 20 minutes or so 24 hours a day. Just think about that! I now get out of bed 10 to 15 times a night to pee. Fortunately I now do it in a completely comatose state. I do not think I even wake up or break a snore.
Fortunately I am able to stop the drug when I travel . When I went backpacking in Oman and on the recent visit to Mexico, the day I stopped the drug , I stopped craving liquids. . . . And stopped peeing constantly!

Oh my, getting old is the s****! What one must do to survive into the 80s!

Views: 46

Add a Comment

You need to be a member of Kidney Connect to add comments!

Join Kidney Connect

Comment by Sadia Baig on February 15, 2018 at 12:16

Hey Jerry,

I was also diagnoesed with PKD as a child and recently, many moons later, found out I was miss-diagnosed. I have gone to see Dr. Pie also to see what type of disease I actually have. Still waiting to get more genetic tests done but its honestly a never ending story when it comes to CKD. 

Interesting and kinda a nice thing that they have been able to control your cysts with the drugs and not having to start you on dialysis.

Good luck with everything! 


Prefer to connect with someone by telephone?

Call Toll-Free: 1 866 390-PEER (7337)
A Kidney Foundation Program Coordinator will talk with you and discuss your request to be matched with a Peer Support Volunteer.

© 2018   Created by Louise.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service