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 am Jas495 and have pkd stage 4. It goes up and down a lot. Not sure why it does this. When it goes to stage 5 I don't think I will make it through it. My problem mostly is the pain. My doctors tell me it comes from when the cysts are growing. I also want to know does anyone have other cysts? I am starting to see them other places, just under the skin on my hands and one at the back of my neck just under the skin. Are they connected to the cysts in my Kidneys? I can't get any answers from my doctor. I haven't been to a Nephrologist since getting these. Are there any doctors on this site that might know why this is? thank you.
As for pain, please talk with your nephrologist and discuss the pain. It is caused by the renal capsule expanding as cysts continue to develop and enlarge. Cysts n the liver can also contribute to the pain as the liver capsule expands. The actual size of the individual cysts isn’t relevant as some of us have cysts of multiple size, ranging from and pinheaded to a grapefruit and others have clusters of cysts that are smaller and a standard size. Both types can be painful. There are treatment options, from fenestration of the cysts, sclerosing if there are a few very symptomatic cysts, as well as pain medications ranging from acetaminophen to opioids of varying strengths. Intense pain will contribute to any increased BP you Amy already have, not to mention significantly decrease your quality of life.
Stage 5 (aka end stage renal disease) occurs when your GFR is 15 or lower. But it’s just a number and everyone experiences the effects of decreasing kidney function in a different way, and the progression to that point also differs by individual. I was at 8% function and stayed there for 18 months, and felt fine (was on heavy duty pain medications for a 25 pound cystic liver and big kidneys, but other than one BP medication and potassium binders, I was doing fine, just waiting for a liver and kidney transplant (whiich I got in April 2017). Alas, that first kidney failed 11 months later due to torsion (it wasn’t anchored and left free floating in my abdomen and did a 360 degree turn cutting off its blood supply, thus killing the kidney. I the. Spent 19 months on dialysis nail I received a kidney from my husband, along with a native bilateral nephrectomy and appendectomy (my right kidney was fused to the appendix). I’ve had the new kidney for just over a year, feel fabulous and my creatinine is 0.9 mg/dl, and I have nearly 70% kidney function. Miracles do happen!
I wish you all the very best and please do talk with your doctors about the skin cysts and the pain.