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PKD - our experiences

PKD  Polycystic Kidney Disease Kidneys contain multiples cysts Polycystic Kidney Disease is inherited, passing through the genes. PKD polycystic kidney disease is among the most common life-threatening inherited kidney diseases worldwide. Children of parents with PKD have a 50% chance of getting this disease. Most individuals inherit PKD from one parent. Though it is rare, sometimes individuals have two parents with ADPKD. Approximately 10% of PKD'rs receive ADPKD spontaneously, that is neither parent has PKD, yet it appears suddenly in a family member. From this individual onward, the inheritance is the same. From this point onward it is ADPKD. Normal kidney tissue has a smooth firm consistency. See the above left photo. A PKD polycystic kidney more closely resembles the bumpy texture of a blackberry with non-uniform clusters. See the above photo on the right. For an in depth explanation of PKD, register first at the HDCN website, then click here for PKD Polycystic Kidney Disease: The Basics —a talk given by Lisa Guay-Woodford, MD. (a separate window will open for you to download this article) Before the discovery of MRI, ultrasound and CT, PKD was sometimes diagnosed at surgery or even at autopsy. Now with the clarity of images, PKD has been diagnosed before birth. Scientist can find and isolate the PKD developing ova. All of this has produced a growing group of more people who realize they have PKD. diagnosed at much younger with more livable years ahead. This has created a generation of individuals with PKD who wish to understand what they can do to maintain the health of their cystic kidneys.. Of the 1,000,000 microscopic kidney nephrons cells in each of us,, less than 5% become cysts. Contained within the cysts something causes blood pressure to become erratic. This is in part, from renin angiotensin aldosterone mechanism. Blood pressure consistently maintained at 110/70 to 120/80 has been reported to add 15 years to kidney health. ARPKD is another form of PKD. Both parents have the recessive gene, yet neither parent manifests any symptoms of PKD. EARLY WITH PKD, IS THERE ANYTHING TO TRY TO ASSURE KIDNEY HEALTH Click on the red arrows to link to more information. While kidney functioning is good, many have spoken with their nephrologists to begin the following: Diet Plant based diet geared toward kidney and liver health Alkalinity Blood pressure low & well controlled Proteinuria eliminate Correct Anemia Avoid kidney toxins Maintain kidney blood flow Water for more information click here. To read more on PKD Health WHAT HAVE SOME TRIED WHEN KIDNEY HEALTH BEGINS TO DECLINE Once kidney functioning has declined some individuals have tried speaking with their nephrologists and asking about the possibility of instituting the following changes. Proteinuria eliminate Alkalinity Blood pressure well controlled Anemia • Serum albumin • Phosphorus Additionally, a few have found success by adding the following: • Animal proteins 0.6 or - 0.3 grams/kg • Essential amino acids supplements from Gambro or Calwood. This newspaper article: Saving Failing Kidneys from Malaysian Times explains some of the above items. A few have followed the recommendations in the book Coping with Kidney Disease by the late Dr. Mackenzie Walser. WHAT HAS BEEN TRIED WHEN KIDNEY FUNCTIONING IS LESS THAN 20% See your nephrologist regularly and ask when to return. Once kidney functioning drops near to 20%, many are prepared for dialysis and/or transplant. Organ transplant some have tried the organ exchange program • Dialysis • Diet modifications consult with a renal dietician Anemia correct • Albumin keep it normal • Phosphorus keep it normal Additionally, a few have found some success by adding the following: • Animal proteins 0.6 or - 0.3 grams/kg • Essential amino acids supplements from Gambro or Calwood. choose a basic article on POLYCYSTIC KIDNEY DISEASE slides from a lecture on PKD basics of PKD listen to lecture bone disease in chronic kidney disease calciphylaxis in chronic renal failure cipro antibiotic extrarenal pkd part 1 extrarenal pkd part 2 extrarenal pkd part 3 Dr. Grantham PKD researcher polycystic kidney disease 2008 PKD the basics part 1 PKD the basics part 2 PKD1 and PKD2 mutations new therapeutic approaches in PKD slow progression of chronic kidney disease new diagnostic criteria proposed PKD new ultrasound screening criteria PKD unified ultrasonographic diagnosis PKD researchers propose new criteria for diagnosis PKD Increases in kidney volume PKD best marker predicting renal functioning decline Therapy for PKD is aimed at keeping cystic kidneys healthy with normal kidney functioning and keeping the heart and vascular system healthy. One can try to accomplish this by: • Tight blood pressure control • Diminishing proteinuria • Keeping cystic kidneys small and limiting growth of kidney cysts • Assuring an adequate blood flow to the kidneys • Eating near to a plant based low sodium alkaline diet that maintains alkalinity • Limiting exposure to things that increase cyclic AMP (this triggers cyst growth) • Avoiding kidney toxins • Limiting external trauma to cystic organs and cyst rupture • Taking antibiotics like cipro when necessary • Drinking adequate water (possibly twice the amount of ones daily urine output)