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Heidi, you'll learn alot in this group. The fact that you're helping take
care of your mom and getting involved in research about PKD speaks volumes
about you. I have a granddaughter with PKD, and it seems even scarier when
it's someone you love and you don't know how to help them. I'll let someone
else respond re your medical questions.
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Heidi, I have had stones surgically removed from my left kidney. The procedure that I had is called a percutaneus nephrolithotomy.(which you can look up) When you know the composition of the stones, sometimes you can change your diet to prevent the recurrence of the stones. Mine were of uric acid. I also had some in my rt kidney but was placed on allopurinal and sodium bicarb which dissolved them. As to kidney damage--the only thing it did for me was that the left kidney is now a little smaller than the rt. (probably from breaking cysts when they did the surgery) My kidney function continues its decline as I age which is par for the course of PKD. I am 59yrs and will probably be on dialysis soon. I am also on the list for a transplant. Ginger |
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| | | From: JuJu2 | Sent: 5/24/2004 9:57 PM |
Welcome to our community! Heidi, I am glad your mother has you to help her through this difficult time. Educating yourself is one of the most important ways for you to be able to help her. A lot of family support is also very helpful when faced with these kinds of problems. I hope you get the answers you need. Take the time to search through the information you will find on this site and you will become a more informed individual. Best of luck to you and your family! |
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Ginger, you state your are soon to be on dialysis and that you're also on the transplant list. At what percentage are your kidneys functioning? My husband is the PKD Patient in our family; his kidneys are currently functioning at 51% so we think it will be a long time before he needs dialysis. I've often wished they'd go on and do transplants before the patient gets so sick and disabled! Alas, that is surely not the case! LOL Hugs, Colleen in Georgia |
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Colleen, My last GFR came back at 7. My creatinine is 6.5, Bun in the 50's and my phos is starting to rise so that I have to be much more careful with my diet now. I also still feel good but am getting concerned about the problems these high values may cause to the rest of my systems. I swim for exercise and have been pushing dialysis off as long as possible in the hopes that a transplant would become available before dialysis was needed. I plan to do peritoneal dialysis and have to give up swimming after the catheter is placed. Ginger |
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