Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi Rajeev, Welcome to our group. I am very sorry you have been diagnosed with IgAN, but this is certainly the place to come for support. One thing I can suggest is going to our sister site, www.igan.ca which our founder, Pierre put up. This site has so much information, and he has presented it from a patient's perspective so you can learn lots there. Also, feel free to ask questions along the way. I think that will help to get you at least familiar with your disease, and that will help to take some of the fear out of it for you. I do understand how overwhelming it is at first. Pierre wrote earlier today in an email that it is like learning to drive a car. At first, it seems like there is so much to remember and keep track of, but soon, you are speeding down the expressway and it is all second nature. I love that analogy because it really is true. It takes some getting used to, but certainly you can live a very full long life. IgAN is not a fatal disease. By way of encouragement, only somewhere between 30-50% of people with IgAN progress to end stage renal disease, so the majority of the time it is a fairly benign condition, and even for those who do progress, there is dialysis and transplants. We have had several members who have had successful transplants just this month, and a number of members who are doing very well on dialysis too. Do you happen to know your creatinine clearance level or your serum creatinine level? Those are the two lab values we most use to track the progression of IgAN. As far as how fast it progresses, that differs for each of us. I have had symptoms over 25 years and I am not yet on dialysis, although I am edging closer the last couple of years. Still, I keep very active and run four days a week for three miles, work full-time, and manage my household. As far as lifestyle changes, it is important to consult with your doctor on dietary restrictions, if there are any. This must be highly customized according to your particular lab values. Ace inhibitors are known to have a renal protective measure, so it is good you are on the Lisinopril. Many think fish oil helps too. It is important to listen to your body, and slow down when you get tired, but other than that, live each day to the fullest extent possible. Welcome again, and let us know how we can support you! Quote Link to comment Share on other sites More sharing options...
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