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)
3 pounds at a time!! I can do it!!
Small Steps pave the way to big changes!!
No matter the obstacles, we can climb over them!
| Pounds lost: 30.0