I too have PKD and so do a few members of my family, all females. Yes lifestyle goes a long way to preserve kidney function though the disease progresses at different rates for different people. I have cysts covering both left and right kidneys along with my liver as well. Despite this my kidney function is still at 40%. Besides eating well, watching my K, Ph, Na, taking Vit D, Ca, Mg, on BP meds and exercising thats about all one can do. I have annual ultrasounds and blood/urine rests. If I even suspect a UTI I go in right away because the worst thing that can happen is developing a kidney infection that causes further unneccessary damage and hard to treat in my case but by IV antibiotics.
My attitude is yes I need to be conscience of my choices but I'm living my life to the fullest as every day, especially a health day is a gift and I intend to enjoy
SW: 140lb CW: 133lb GW: 120lb
"You cannot control the winds of life, but you can adjust the sails"-unknown
Sorry I couldn't reply earlier - it was a long weekend here and I tried to avoid my computer as much as possible!
Thank you, Aria, for all this information!
Thankfully, my husband is not overweight, and both of his kidneys are functioning perfectly right now. His father and his uncle both have this disease, so when he wasn't feeling well, they knew what to look for - they did an ultrasound and found 1 cyst on each kidney. Its still early stages, and I'm hoping to be able to prolong this as long as possible.
I guess his main symptom is high blood pressure, which he has just gone onto medication for. (All this has happened within the last month.)
He says that this is what it is and there is nothing he can do about it, at least until his kidney functioning starts to diminish at which point special diets would be beneficial. My thinking is that if there is something he can do to slow down cyst growth or the progression of the disease, then that should be the focus. But I also know that in the end, its up to him. I just want to find out as much as I can so that I can help in any way that I can.
Thanks again, Aria. This is a lot of information and a great place for me to start.
And thanks to everyone else for the warm welcome.
If I choose to not do anything differently today, tomorrow is going to be exactly the same as yesterday.
"Shoot for the moon. Even if you miss, you’ll land among the stars!" ~ Les Brown
welcome to the Team! I am aria, and I also have poly-Cystic Kidney Disease. I was diagnosed at 21 with a left Nephrectomy. I have one Kidney left with a cyst on it.
The best possiblility to keep them healthy... UltraSounds as the Dr orders but in general it was recommended once a year to identify Cysts overtaking the Kidney(s) and Kidney Function Lab Tests.
For me, my vitamin d is extremely low so I take (from drs orders) 70,000 IUs a week. My Lab tests showed this.
The other issue I was made aware of is that High Protien Diets cause more cyst growth. This being said... it is a no win situation because weight loss is important (but it has to be His doing). I personally base my diet off the South Beach Diet - Modified for phosphate levels (can cause more damage.) Lots of fruits and veggies ~ but many you have to watch phosphate levels... and fish and chicken often as my protiens...
The Nephrologist told me drink a Gallon a day ~ Water, non-cafineted sodas, Tea...but most of all Water! Stay away from sports drinks as they add sodium and Phosphates.
My Blood Pressue needs to be controlled with meds... and an ACE Inhibitor is recommended for PCKD patients as it reduces somthing in the Kidney. (sorry i am not a scientest to remember what ACE stands for).. I also have to take other Meds for High Blood Pressure they recommend mine stay no higher than 125/85.. ask his nephrologist what they want it at... they should be the one rx'ing High Blood Presure meds if it needs more than just an ACE Inhibitor.
Stay away from Over the Counter Pain meds other than Tylonel and it's Generic. All NSAIDs (Non-Steroidal Anti Inflamitories... i.e. Ibprofen, alieve, asprin are excreted in our urine and can cause Issues.
Welcome to the tight rope... my PCKD took out my left Kidney first... as I said at 21. They have told me they will not do surgery until my right Kidney totally fails cuz they risk the Kidney shutting down fully when they remove cysts...
If your hubby is experiencing any back pain in the kidney region he should probably go to at least an urgent care and have tests run to verify kidney function and levels.... (i personally have back injuries but i can tell the difference in pain level most the time)...
If you and your husband have kids you will want to have them checked via ultrasound as there is a 1 in2 chance he can pass it on.. unless he has PCKD recessive then it is 1 in 4. the key ages are at Birth, 7 yrs old, 20/21 yrs old, and 40 yrs old- this is when they most often see it manifest as a congenital birth defects.
If You need more info the Kidney Foundation has a section just for us :) plus it had been a bit since i been to pkdcure it is helpful. www.pkdcure.org/
Edited by: MALKS_ARIA at: 8/3/2012 (01:54)
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