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Guest
Hi;
I had/have the same disease. I'm 38 now. Diagnosed in 1994, started dialysis in 1999 and transplanted in 2002.
Unfortunately, IGA is back. I'm on Prednisone and Cyclophosphomide (as well as tons of other stuff).
It's been a very long haul, but I could talk with you if you'd like.
I'm a fighter and managed to succeed despite alot of heartache and trouble.
The system is not that great and I often went different routes than everyone else.
Take care,
Mark
face=Verdana mkgauth@sympatico.ca
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Replied on Tuesday, June 24, 2008 1:09 PM
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Guest
I'm a 33 year old male, diagnosed with IgA Nephritis about 5 weeks ago. I've lost 70% funcioning of my kidneys. I'm writing this from the hospital, where my daughter was born about one week ago. We just found out she has Down Syndrom.
I can't seem to stop worrying about the future, as it's killing me inside to think i may not be around to care for her.
Perhaps someone can answer some of my questions to help alleviate some of my anxieties. How do i get a transplant before dyalisis? Can I get medical coverage in Canada for acupuncture, physio, and/or a chiropractor? What else can I eat, especially to snack on, besides fruit/veggies?
And to the previous writer with kidney transplant, I am deeply saddened by your reoccurence and inspired by your message. Please tell me more if you can?
face=Verdana pcasey79@sympatico.ca
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Replied on Tuesday, June 24, 2008 1:10 PM
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My son was diagnosed with IGA 7 years ago at the age of 10. He went through a lengthy battle which included biopsy and heavy prednisone dosages. I found a Japanese study which states that the excess protein in the body was produced by multiple sources with the tonsils being one of the highest producers. With this information in hand I presented the option to our nephrologist of having our sons tonsils removed. He discussed this with an ENT specialist and he agreed to do the surgery. While we can not be sure if it was (1)the removal of his tonsils, (2) the high doses of Prednisone, or (3) the 2 week cycle of Cytoxin, his symptoms began to change and his health is now extremely good with only a daily dose of Altace (5mg). Best Wishes and Good Luck in his treatments.
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Replied on Sunday, July 13, 2008 12:07 AM
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My husband was diagnosised with IGA nephritis when he was 8. He is now 40 working at 19-23 percent function. You can be on the transplant list and NOT be on dialysis. He was. We finally opted to be "put on hold" on the transplant list because we were able to come up with a way to stabilize his condition. This seems to work for him, and has taken a lot of research and basic common sense. What we did: He drinks only distilled water (no minerals, minerals are hard to break down in the kidneys), Very limited Potassium food (hardly any potatoe chips, potatoes: ONLY if dialized (cut and soaked in water overnight, chg the water a couple of times), no kiwi, coconut, oranges or orange juice, LIMITED TOMATOES/SAUCE!. no grapefruit, cantelope, ect.... Next, limit phosphorus...heavy hitters: chocolate, beer, dairy products. Protein: moderate. My husband went a very low protein diet, and got extremely sick. He looked awful and was weak. He eats moderate portions of meat, just don't eat to much! If he drinks...hard liquor is best ...in moderation. Gin used to be a considered a kidney cleanser (research available on web)....Cranberry juice is good as well. We also purchased a sauna. When my husband feels bloated (happens at the holidays because of the food), he goes to "bake". Our thought is that the SKIN is the largest organ and filters out impurities. He has been doing this for at least 4 years now. Once he takes a sauna, he feels 100 percent better. NOTE: this does not work for everyone. He has his blood pressure under control with medication so he can do this. He also takes cholesterol meds, and folic acid tablets. He has been on hold for 3 years now, and his results fluctuate slightly....we just note what he has been eating lately, and make changes appropriately. Many times we thought he was extremely tired due to his disease....well...with this new "carb revolation" going on...he cut out some of the breads he was eating, and he is no longer so tired and his cholesterol has dropped. As you can see, a lot of what we have done is diet related. For him it has worked. He has been very patient and receptive to trying things that I have found on the web, and now we seem to have somthing figured out. When he splurges on his normal eating routines, he does pay for it: extremely tired, bloated, lethargic...just plain ill. He will take a sauna, and get back on the routine again. When he wants potatoe chips (what he misses most), he puts a handful in a cup, closes the bag, and just eats out of the container. Again...moderation is key. I hope this helps. There never has been written anything about this....I would like to write a paper on him, because this seems to work, at least for him.....BUT, he is very good with eating properly. He will have a burger, but order a side salad, and take a couple of fries from us, but that is all. Well....that is all I have to say.....good luck all!!! Glad to have found this forum!
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Replied on Tuesday, August 19, 2008 10:32 AM
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I just found this discussion forum. It should be a good place for us to talk about our problem and share some valuable experiences and maybe successes. I am a Chinese, those traditional type, not much westernized.
I found the proteinuria in May this year. Then was diagnosed as IGA nephritis after the biopsy two months later. My urine protein content increased very fast since it was found, from 1g to 10g in three months. The protein increase was also combined with serious swelling around my lower body. The diuretics (I tried three different types and finally took these three different diuretics at the same time) did not seem to work for me. I started steroid two weeks back. One week before I took steroid, I started to take Chinese medicine and acupuncture together. Working with these three major steps, my condition obviously improved in last two weeks. I lost nearly 30 lbs of my weight (actually water). And the most important thing is I can feel some changes of the spilled protein. Everybody knows that we can figure this out from the frothy urine. I am waiting for next 24 hours urine check. Hope things really changed.
One thing everybody mentioned is the careful selection of the food we eat. I was also having a quite difficult time in selecting the low protein low sodium food. It is a real pain. My food at this time mainly contains the followings: vegetables, fruits, rice and noodles, a little chicken and pork meat, very little milk and tofu, low protein low sodium snacks. I eat a lot of this things everyday for enough energy.
One more thing with the doctor. My experience with the doctor is that you never rely on your doctor to solve the problem. You need their advices since they are trained for this. But using your own judgment is more important than the doctor’s prescription. I visited several kidney doctors already and was trying to get more advices and ideas from them. I agree that my current kidney doctor is a nice guy. But he just cannot do much. We know they cannot cure IGA. Instead of listening their useless words like “you protein is how high and your kidney is how much damaged this time”, I fight myself. DO NOT LET YOU BELIEVE THE IGA IS NOT CURABLE. BELIEVE THAT IF YOU TRY, THERE IS A CHANCE THERE. Be happy each day. I know it is not easy. I was very frustrated and depressed when I first faced this situation. But after a period struggling, I feel much better now. If things come, you cannot stop it. Take it and work your way out.
I will continue to share with you of my experience here. If I confirmed some good stuff, I will let everybody know.
Take care.
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Replied on Monday, September 1, 2008 11:40 AM
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