Anyone have flank pain from polycystic kidney disease (PKD)?

Thank you for your caring comments and your recommend websites.Your concerns and suggestions are very greatly appreciated.
Cathy

Hello,
I have PKD and have dealt with flank pain, that at times can be debilitating, for many years. I am so sorry your son is dealing with this.
I am a dance and yoga teacher, and found a few things to be helpful. Nothing stopped the pain, which was usually just big kidney cysts pressing against organs and muscles. Like the pain a piece of dirt causes when it is in your eye. Sometimes, it was a cyst rupturing. I never had a cyst drained, though I have heard this is possible. I had my left kidney removed during a kidney transplant a year ago, a few months prior to needing dialysis. So now, I only have flank pain on the right side. I am scheduling my second nephrology for the end of this year. I recommend doing the double nephrectomy, at time of transplant, if at all possible.

I was only allowed to take Tylenol, which had the pain-killing effect of a breath mint. I did not take opioids because I believe they are toxic and highly addictive. So here are some things that helped me:

1. For me, sitting was the worst, so I worked standing up whenever possible.

2. I would lay down several times a day for 10 minutes, which relieved the pain significantly.

3. I took hot epsom salt baths, which, for whatever reason, helped.

4. I did a yoga exercise called the "Cat Cow" which you could youtube for a demonstration. Basically, you get on all fours, round the back - lifting the navel toward the ceiling-like a cat when it hisses. And then drop the navel to the ground, lifting the tailbone and head toward the ceiling- like a cow. Inhale slowly (8counts) on the Cow and exhale slowly on the Cat (8counts).

5.Slow deep belly breathing, an old pain management technique that morphed into pregnancy labor breathing, can help too. Slowing the breath and breathing deeply through the nose, filling the lower part of the lungs, mid and then upper, for 8 cts; and then exhaling completely and slowly for 8 cts, is effective for two reasons. One, it gets the mind to concentrate on counting 8 counts rather than "Ouch!" It also fakes the body into a more relaxed mode, rather than the "flight or fight" mode that pain induces. "Fight or flight" tenses the muscles for battle, releases chemicals for strength to fight, and creates a hyper-vigilance, helpful when fighting bears, but not so helpful with ongoing pain.

Sending thoughts and prayers for healing,
Stephanie

Thank you Very Much. I will pass your thoughtful suggestion to my son. to my son...hearing from you means a lot to me.
Kindest regards,
Cathy

if I have not thanked you before , let me do so now. He is also applying for transplant list and been told to drib NEPRO every day, to cut protein and eliminate salt. Have you tried any type of diet that seems to help?

Prior to Stage 5, my diet was pretty normal. I had a great nephrologist, who encouraged me to eat healthy and not go crazy trying to eliminate protein and salt, because that can cause a whole new set of problems. That being said, I reduced my salt by not eating fast food, or salty snacks (crackers, potato chips, etc). I ate protein at one meal but not all three. That was about it.
My diet changed as I went into Stage 5 kidney failure. The thought of eating meat, of any sort, became nauseating. I could eat some tuna, but only every once in a while. The thought of a salty french fry, was disgusting. The quantity of food I could digest was greatly reduced. I tended to just want toast or oatmeal in the morning; a low protein, high vitamin c smoothie in the afternoon; and honestly, just easy to digest starch at night- like toast, pasta, mashed potatoes- but if I overate, I got nauseous. For me, my body told me what it could handle, and I listened.
I'm sure Mayo has much better dietary advice than I do. The NEPRO sounds like a good idea.

@kzeiss I am currently on the edge of Stage 4 and Stage 5 in my journey. Here is a link to some recipes from Mayo Clinic for renal diets: https://www.mayoclinic.org/healthy-lifestyle/recipes/kidney-renal-diet-recipes/rcs-20522796

In general, as @stephanierp mentioned, our diets change up as we progress through kidney disease. The goal is to not stress our kidneys any more than necessary, to try to preserve function as long as we can. Having PKD means your son has probably been dealing with his kidney issues for a while, right? Careful, useful protein, like found in shakes, can help, eating healthy is always good! If he has access to a renal dietician, take advantage of that, who will help him look at his labwork and determine what will be best for him individually.

Here is a link to the Mayo Clinic information about PKD, which you might find interesting to read. https://www.mayoclinic.org/healthy-lifestyle/recipes/kidney-renal-diet-recipes/rcs-20522796
And here is a link to National Institute for Health information on PKD and diet: https://www.niddk.nih.gov/health-information/kidney-disease/polycystic-kidney-disease/eating-diet-nutrition

Where will your son be listed for transplant, if you care to share?
Ginger

Stephanie, Thank you so much for sharing your journey. Know it will help my son to hear from a "Kindred spirit". Your thoughts and honesty are greatly appreciated.

Dear Mentor, Thank you so much for your thoughts and for the links to the information. He has applied but will not hear from CU Denver for 3-6 months as to whether he will be placed on the kidney transplant list. It is a long wait.Deepest appreciation, C

I am happy to be a kindred spirit to your son and offer any support I can to you, as a fellow mom. As mothers, we would much prefer to deal with pain and health challenges ourselves, rather than watch our children deal with it. With PKD, we often have to deal with it as both.

As with all difficult journeys, there are gifts along the way. The love and kindness that are revealed through the hearts of family and friends; the medical community- people, who have devoted their lives to help and often save others; and the incredible generosity of donors, who offer the gift of life for others, either during their lives or after. Serious health challenges seem to strip away all the silly things that often consume our time and attention, and get to the heart of what life is all about - love, connection, the beauty of nature(for me), and the miracle of it all.

I am two years post transplant, and have enjoyed healthy kidney function since surgery. I am now, trying to gather the nerve to have my second kidney removed. I highly recommend looking at Mayo or a medical facility well-versed in removing both PKD kidneys at the time of transplant, because thinking of a second large surgery is daunting. Blessings

Hi . Great news on your new kidney. What is your current creatnine level and your tacrolimus dose ??