Autosomal Dominant Polycystic Kidney Disease (ADPKD) is a disease I inherited from my father. Forty years ago, during exploratory surgery for diagnosis of “multiple lumps” in my lower abdomen, I learned that my right kidney was located in my abdomen, along with two uteri. I also learned that my left kidney is a “kidney-and-a-half,” which means that two kidneys fused together to form an “S” shape. My doctor told me that I “tried to be a twin,” but my body absorbed my twin’s body. That bit of information made me feel like a monster, but at any rate, that is a whole different story. During the surgery, the doctor removed one uterus and lanced a cyst on my abdominal kidney. However, I wasn’t officially diagnosed with ADPKD until several years later.
ADPKD is different in each individual in that it progresses slowly for some people, who may never have problems with kidney function in their lifetime. However, others may be on dialysis by the time they are in their 50s. I am 62 years old, and I am in third stage renal failure. However, I still work part-time as a nurse and enjoy life immensely!
ADPKD starts out with the development of thousands of small cysts on both kidneys. Over a period of years, the cysts can grow so large that each kidney becomes the size of a football and can weigh around 30 pounds each. My abdominal kidney is 27 centimeters in length, and my left kidney is 27 centimeters in length. A football is 27 centimeters in length.
The kidneys aren’t the only organs that are victims of ADPDK. I have multiple cysts on my liver, one on my pancreas and one on the inner corner of my left eyeball. I am thankful though that I don’t have aneurysms on my brain, which also goes along with ADPKD.
One of the first symptoms of ADPKD is elevated blood pressure, which occurs early in the disease. It is very important that elevated blood pressure be controlled, whether or not you have ADPKD. High blood pressure can cause kidney damage all on its own, along with heart disease. I can attest to that, as I have six stents in various arteries in my heart.
My kidney function has declined over the past few years. My abdomen is so large I have been asked, more than once, if I am pregnant. It is quite uncomfortable and very painful at times. My abdomen feels like it is “full” and the only time it doesn’t ache is when I lay down on my right side. When I’ve been on my feet for a while, my back feels like it might break, and it feels like my insides might fall out at any time. The cure for the back pain is to sit down for a few minutes.
How do I handle my disease? With the help of my doctors I keep my blood pressure under control with medications. I drink lots of water and that seems to prevent recurrent urinary tract infections. My ability to exercise is limited, but I do enjoy walking. I live in a valley between two mountains, so walking is very enjoyable!
Aspirin, and other similar medications, can cause damage to already damaged kidneys. For pain, I use Norco very sparingly, only when I can’t ease the pain with rest, a warm bath, or a heating pad. Also, I avoid caffeine, which seems to make the cysts grow. Tobacco use is also a very bad idea for victims of ADPKD. In addition, the contrast dye used when getting a CT or MRI is very harmful to diseased kidneys. I always tell the radiologist that I have ADPKD before I allow a scan to be done. If a CT or MRI must be done, there is a medication that can be taken to protect your kidneys. I refer to this medication as “liquid poo-poo.” Enough said!
There is currently no cure for ADPKD, but there is a lot of research being done, and medications are being tested, which hopefully will slow the progression of the disease. I have many cousins, six siblings (two deceased), and a daughter who has ADPKD. I am too old and my disease is too far advanced to join in the research groups. However, although I don’t plan on going to meet my maker any time soon, I want to leave my body to medical science. Hopefully, I can help find a cure for my descendants, and the thousands of other victims of ADPKD.