Polycystic Kidney Disease (PKD) Support Group
Polycystic kidney disease (PKD) is a progressive, genetic disorder of the kidneys. It occurs in humans and other organisms. PKD is characterised by the presence of multiple cysts (polycystic) in both kidneys. The disease can also damage the liver, pancreas and rarely the heart and brain.
Hello. I just found this site. I have stage 3 PKD and very large kidneys. I also have severe PLD so I look like I am always ready to give birth to aliens! Luckily I still have organ function but I am dealing with mass effects. I have been able to manage but lately I am having problems with breathing - I can breathe OK while I am sedentary but I loose my breath very easily as soon as I get a little active. My Dr has checked - not my heart, no fluid in the chest cavity and no ascities in abdomen. She is planning to confer with another Dr. Not sure if this is kidneys pushing on liver, just liver or both. Anyone else with this experience? How do you deal with this? Is it beneficial to work with a pulmonary specialist to "learn" how to breathe with this condition? Looking for any advice, guidance or sympathy :)
Welcome to the group. I also have huge kidneys and a massive polycystic liver. I'm now asked when I'm due several times a week. The mass effects are certainly challenging at times. I do become breathless more and more quickly but I haven't pursued this with my doctor as it's always a case of nothing can be done - you just have to manage it by adapting. The problem is that the abdominal cavity is entirely filled with liver and kidney, leaving no space whatsoever. Everything is crushed and with the liver pushing upwards, there is no space for the lungs to expand when you breathe in (the diaphragm needs space to move downwards to allow the lungs to expand). With reduced lung capacity, only a small amount of air and so oxygen can be taken in and you quickly become breathless on exertion. I know how to breathe well but since my body does not allow me to follow the rules, I just have to do the best I can. There is nothing that can be done except removing the liver as I am not a candidate for ressection or fenestration. Is there a management plan for you? My kidney function is declining now and I am borderline stage 3/4. I have been told that ultimately I will be looking at a double kidney/liver transplant.
You certainly have my sympathy as I understand exactly what you're experiencing. Unfortunately, the only advice I've ever received is that my body will adapt and I have to manage the problems as they can't be fixed without a transplant.
It solved my problem for 2+ years.
I liked the outcome and my eGFR even increased some.
Larry