Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Pierre, Yes, having talked with the neph and my own research and from reading here and on the bulletin board, I know that there is nothing the neph or myself could do. I have not considered diet however (altho I did ask if there was anything I could do there, and of course the neph said no). I will request a renal dietician however. Thanks, Sophia > Unfortunately, that's usually how it is with kidney disease. You tend to > lose kidney function faster the less function you have. This is because the > remaining good nephrons have to do the work of the non-functional ones. This > combines with the kidney disease itself and the higher blood pressure to > wear them down even faster. I'm sure your nephrologist would love to be able > to say, " Look, do this and it will help prevent it " . But they know from > their experience with hundreds of patients that this is what happens. I > don't know anything that can prevent it either (if there was, I wouldn't be > on dialysis myself), but a proper pre-dialysis renal diet can certainly help > to make you feel better in the meantime. If you're at about 30%, that's the > right time to start (ask your neph to refer you to a renal dietician > though - don't do it on your own). > > Pierre > > > neph appt today > > > > I had an appt with my neph today....my creatinine level has > > increased again to 290. He's talking about putting me on high dose > > Prednisone....if I'm not pregnant. > > > > As with every neph appt, I'm always numb and in shock from the > > news. And angry and frustrated and discouraged and unhappy. Why > > does it take 10 years to for my kidney function to drop 30% but only > > 2 years to drop 40% more? And is there anything in my lifestyle > > that I could change to improve it? My neph shakes his head. > > Nothing. There's nothing I can do but wait for kidney failure it > > seems. I feel hopeless. > > > > I'm trying to think positive thoughts right now, but it's not really > > happening. Anyways, I hope this vent will make me feel better. > > Thanks for listening. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Martha, this is exactly my sentiment, it's hard to stay positive when the doctor can't give you any hope. It helped so much to vent some of that frustration and to hear from pple here, even get some good suggestions. I have been in a better mood now, having hung out with friends and volunteer at a dance competition on the weekend. Also, talking with my husband Kris and thinking and reflecting on things have put things into perspective for me and help me decide what I am going to do. And of course, reading and getting moral support here from pple who know what I am feeling helps so much. Thanks, Sophia > > I had an appt with my neph today....my creatinine level has > > increased again to 290. He's talking about putting me on high dose > > Prednisone....if I'm not pregnant. > > > > As with every neph appt, I'm always numb and in shock from the > > news. And angry and frustrated and discouraged and unhappy. Why > > does it take 10 years to for my kidney function to drop 30% but > only > > 2 years to drop 40% more? And is there anything in my lifestyle > > that I could change to improve it? My neph shakes his head. > > Nothing. There's nothing I can do but wait for kidney failure it > > seems. I feel hopeless. > > > > I'm trying to think positive thoughts right now, but it's not > really > > happening. Anyways, I hope this vent will make me feel better. > > Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Hi Amy, I need to wait until the end of this week before I can try the pregnancy test again. I tried three days after some " symptoms " started showing up...but it was negative. Of course...it would have helped to read the instructions first and realize I should maybe wait until a more appropriate time. Positive or negative, I need to tell my neph right away. If negative, he will need to confirm negative via blood test before I go on Prednisone. If positive...well, he says he needs to research the options. I guess what really worries me is this rapidly accelerating deteriorating trend. When I was first diagnosed with IgAN, I had practically full kidney function. Two years ago, it was at 70%, and now it's at 30%. And therefore, the only thing I see is ESRD for me. But you're right, maybe the continual deterioration could be stalled or stopped. Thanks, Sophia > I'm so sorry to hear that you didn't get good news. How soon will you be > able to determine if you are pregnant or not? > > That feeling of hopelessness is a hard one to shake. No there may be > nothing we can do to completely stop our bodies from failing to function > correctly BUT your wait may be years before you hit full failure....look at > the amount of living you can do in that time. And even with full failure > there is still a lot more living to do. Those who post here who are on > dialysis or have gone thru the rigors of transplant have shown me that this > is not a death sentence...just a new way of life. It takes some getting > used to, yes, but as long as you are breathing life continues. > > Hang in there...and remember we are all here for you. > Amy > > neph appt today > > > > I had an appt with my neph today....my creatinine level has > > increased again to 290. He's talking about putting me on high dose > > Prednisone....if I'm not pregnant. > > > > As with every neph appt, I'm always numb and in shock from the > > news. And angry and frustrated and discouraged and unhappy. Why > > does it take 10 years to for my kidney function to drop 30% but only > > 2 years to drop 40% more? And is there anything in my lifestyle > > that I could change to improve it? My neph shakes his head. > > Nothing. There's nothing I can do but wait for kidney failure it > > seems. I feel hopeless. > > > > I'm trying to think positive thoughts right now, but it's not really > > happening. Anyways, I hope this vent will make me feel better. > > Thanks for listening. > > > > > > > > To edit your settings for the group, go to our Yahoo Group > > home page: > > http://groups.yahoo.com/group/iga-nephropathy/ > > > > To unsubcribe via email, > > iga-nephropathy-unsubscribe > > Visit our companion website at www.igan.ca. The site is entirely supported > by donations. If you would like to help, go to: > > http://www.igan.ca/id62.htm > > > > Thank you > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 Thanks Lorrie, I will definitely take that advice! > > I had an appt with my neph today....my creatinine level has > > increased again to 290. He's talking about putting me on high dose > > Prednisone....if I'm not pregnant. > > > > As with every neph appt, I'm always numb and in shock from the > > news. And angry and frustrated and discouraged and unhappy. Why > > does it take 10 years to for my kidney function to drop 30% but > only > > 2 years to drop 40% more? And is there anything in my lifestyle > > that I could change to improve it? My neph shakes his head. > > Nothing. There's nothing I can do but wait for kidney failure it > > seems. I feel hopeless. > > > > I'm trying to think positive thoughts right now, but it's not > really > > happening. Anyways, I hope this vent will make me feel better. > > Thanks for listening. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 22, 2004 Report Share Posted February 22, 2004 > I guess what really worries me is this rapidly accelerating > deteriorating trend. When I was first diagnosed with IgAN, I had > practically full kidney function. Two years ago, it was at 70%, and > now it's at 30%. And therefore, the only thing I see is ESRD for > me. But you're right, maybe the continual deterioration could be > stalled or stopped. I know what you mean Sophia finding out you are rapidly moving on a downhill slope is quite hard to cope with. I went from living a normal life with normal lab values in Nov 2002. To feeling tired all the time in April 2003, to finding out my b/p was thru the roof in July, to finding out I only have 30-40% function in Sept 2003. Talk about a shock to ones system normal to " you got a BIG problem " in less than a year. Prednisone treatment has so far worked for me and my function has stabilized at about 35% or so...depends on what values you look at. I'm in the middle of another 24hr collection today so I'll see if my stability still stands next week when I go to the neph. If there is one thing I've learnt since my diagnosis is this disease requires a constant balancing act. Between medications, diet, supplements, and exercise there are at least a few things you can try to stay proactive in your own treatment. Sometimes just feeling like you can control one part of that balancing act can help, even if it's just getting out to walk daily so you are in the best health you can be if you do end up in ESRD. And remember you are never alone with this....there are days I have to remind myself that. Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2004 Report Share Posted February 23, 2004 Wow Amy, that's really rough! And only in one year. I guess Prednisone isn't so bad if it can stabilize kidney function...I just still hate the thought of having to deal with all the side effects. But deal I will. And yes, it's good to have a good group of pple like here. : ) I hope that all goes well for your neph appt! Sophia > > I guess what really worries me is this rapidly accelerating > > deteriorating trend. When I was first diagnosed with IgAN, I had > > practically full kidney function. Two years ago, it was at 70%, and > > now it's at 30%. And therefore, the only thing I see is ESRD for > > me. But you're right, maybe the continual deterioration could be > > stalled or stopped. > > I know what you mean Sophia finding out you are rapidly moving on a downhill > slope is quite hard to cope with. I went from living a normal life with > normal lab values in Nov 2002. To feeling tired all the time in April 2003, > to finding out my b/p was thru the roof in July, to finding out I only have > 30-40% function in Sept 2003. Talk about a shock to ones system normal to > " you got a BIG problem " in less than a year. Prednisone treatment has so > far worked for me and my function has stabilized at about 35% or > so...depends on what values you look at. I'm in the middle of another 24hr > collection today so I'll see if my stability still stands next week when I > go to the neph. > If there is one thing I've learnt since my diagnosis is this disease > requires a constant balancing act. Between medications, diet, supplements, > and exercise there are at least a few things you can try to stay proactive > in your own treatment. Sometimes just feeling like you can control one part > of that balancing act can help, even if it's just getting out to walk daily > so you are in the best health you can be if you do end up in ESRD. > > And remember you are never alone with this....there are days I have to > remind myself that. > Amy Quote Link to comment Share on other sites More sharing options...
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