I have mentioned the fact that I have a kidney disease several times in posts here on the blog and on Facebook. I decided that it would be good to let my readers know a little more about the disease. I have Polycystic Kidney Disease, which is also known as PKD. The form that runs in my family is autosomal dominant PKD (ADPKD) which means just one parent had to have the gene to pass it to children. In our family it was Daddy who had PKD. A parent with ADPKD has a fifty percent chance of passing on the mutant gene to each child. I am the youngest of four children. One of my sisters also know that she has PKD. That sister passed the gene onto both of her children. Each of us in the family who currently know they have PKD, found out about the disease at a younger age than Daddy did. Three of us already have a significant reduction in our kidney function and are progressing toward needing dialysis and hopefully successful transplants.
There is currently no treatment or cure for PKD. The best we can do is attempt to do things that will delay kidney failure. This includes:
- Controlling blood pressure: Kidney disease causes your body to have issues controlling blood pressure. When I first had to go on blood pressure medication I was devastated. To make matters worse, I was placed on the medication to help with protein spilling into my urine and not because my blood pressure was to a point that I required medication. Over the years I have experienced more problems with my blood pressure and now take two medications to help control it.
- Control cardiovascular risk factors: Those with a renal disease should not smoke. This was never an issue for me since my mother smoked and I thought it was a disgusting habit. Her smoking habit was also what resulted in her death due to lung cancer. I’m working on the other habits that will reduce cardiovascular risk factors including losing weight, exercising regularly, and eating a healthy diet.
- Avoid medications which can damage kidneys: I hate it when people tell me to go take some advil when I have an injury or general soreness. It isn’t that simple for someone like me. People with a kidney disease must avoid all SDAID (Non Steroidal Anti Inflammatory Agents) except in rare circumstances when their doctor says it is absolutely necessary. When they were trying to figure out what was going on with my gallbladder last year, I had to undergo a very long (and expensive) nuclear scan instead of just drinking the contrast to have a CT scan. My kidneys have a hard time processing the contrast dye so I can’t have it except in cases that are life threatening and require the speed of CT scan rather than taking the time to do a nuclear scan.
You are probably still wondering what PKD really is. The following picture, while gross, is a good way to illustrate what PKD is. The kidney on the left is a PKD kidney and the one on the right is a typical kidney. Thank you to the PKD Foundation for having such learning tools available for use.
Yup, that is what my kidneys look like. Gross isn’t it? Now imagine having two of those giant kidneys in your body pushing against your other internal organs. Doesn’t sound like much fun does it? Nope, didn’t think so.
Having PKD means fluid filled cysts take over your kidneys. A cyst in the kidney begins as an out-pouching of the nephron. Cysts can occur anywhere along the length of the nephron. Although polycystic means “many cysts”, only 2% of nephrons form cysts. The cysts can also form on other organs. The most common organ where cysts form, other than kidneys, is the liver.
Want to learn more about PKD? Visit the PKD Foundation website for more details.