Guest guest Posted March 31, 2003 Report Share Posted March 31, 2003 Hi Penny, Sorry to hear that you've been diagnosed with IgAN. In regards to the renal failure, with those who do reach end stage renal failure, the time that it takes them to reach that point varies. There are members in this group who have taken 20+ years to reach it, others who have reached it within a year or two of being diagnosed, and theres also people who fall somewhere in between. It isn't unusual to get depressed and to feel down about this sort of illness, as I'm sure that many of us in this group have felt down about it at some point or another. Anyway, try and hang in there. Jennie --- pennytn2000 wrote: > Hello. I had a biopsy in March. I was told that I > have IgAN. I was > also told that there are two groups with this. 70% > who have this will > never have renal failure. There are 30% that will. I > have been told I > am in the 30% group. Mine is very aggressive. I have > no kidney loss > yet. Im still at 100%. I have blood and protien in > my urin. I have > so many questions. How long has any one went with > this before kidney > failure? I feel as if I am going to down tomarrow. I > know better but > sometimes I get depressed. Penny > > > http://mobile.yahoo.com.au - Yahoo! Mobile - Check & compose your email via SMS on your Telstra or Vodafone mobile. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi Sua, I wanted to warmly welcome you to our group. I think you might be our first member from Thailand. I am sorry to hear about your diagnosis though. It sounds like you are on a good course of treatment, and it is good to hear you are feeling better. We look forward to getting to know you and all our new members! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Penny, Have you read the information on our website? It might help you get a perspective on this. www.igan.ca Pierre 30% > Hello. I had a biopsy in March. I was told that I have IgAN. I was > also told that there are two groups with this. 70% who have this will > never have renal failure. There are 30% that will. I have been told I > am in the 30% group. Mine is very aggressive. I have no kidney loss > yet. Im still at 100%. I have blood and protien in my urin. I have > so many questions. How long has any one went with this before kidney > failure? I feel as if I am going to down tomarrow. I know better but > sometimes I get depressed. Penny > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi Penny,my name ,I was diagnosed 3.5 years ago with progressive IGAN.I was in the I.C.U for a week,then on the renal unit for another week.After a year of prednisone and cyclophosphimide we have halted the progression.I'm on a daily maitenence of 300mg of Irbesarten(Avapro),20mg of Furosemide and 20 mg of Losec.I'm looking foward to many dialysis free years.If you are diagnosed with progressive IGAN,hopefully there is a treatment that you will respond to like I did!Wishing you all the best,take care, Grimsby,Ontario,Canada 30% > Hello. I had a biopsy in March. I was told that I have IgAN. I was > also told that there are two groups with this. 70% who have this will > never have renal failure. There are 30% that will. I have been told I > am in the 30% group. Mine is very aggressive. I have no kidney loss > yet. Im still at 100%. I have blood and protien in my urin. I have > so many questions. How long has any one went with this before kidney > failure? I feel as if I am going to down tomarrow. I know better but > sometimes I get depressed. Penny > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > 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 April 1, 2003 Report Share Posted April 1, 2003 Hi everybody, I am new for this group. I am from THAILAND,Bangkok. I have been in the first stage of IGAN since 3 years ago. At this time, I'm getting better from the new medical (Bendoxane, Enapril and Fish oil ( Omacore) ). I think it will be a useful information for everybody. take care Sua 30% > Hello. I had a biopsy in March. I was told that I have IgAN. I was > also told that there are two groups with this. 70% who have this will > never have renal failure. There are 30% that will. I have been told I > am in the 30% group. Mine is very aggressive. I have no kidney loss > yet. Im still at 100%. I have blood and protien in my urin. I have > so many questions. How long has any one went with this before kidney > failure? I feel as if I am going to down tomarrow. I know better but > sometimes I get depressed. Penny > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Tony, I just had to write to commend you on writing an outstanding email. You are exactly right that depression is a common step on the way to acceptance. Your positive attitude is certainly an inspiration for us all. Thank you so much for writing such an eloquent email. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 We will all look forward to the next installment then :-) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Hi Penny, I am sorry to read that you have been diagnosed with the more aggressive strain of IGAN as I had been 2 weeks ago. Let me assure you there is nothing wrong with being depressed. You have just received this devastating news regarding your health and feel helpless. It is a bit overwhelming at best. However in time you will realize being depressed takes up to much energy, and that doing so only makes you feel worse. The last thing you need is IGAN beating you down. You're scared, as many of us were when we first got our diagnoses. What scariest of all is this disease is so mysterious. What causes it, what is the best treatment to yield its assault on your kidneys, no one knows and if they do they aren't telling us yet. The best thing to do is concentrate on the positive. Don't let your fears consume you. Not to sound corny, but being a big Sci-fi fan and having just watched the Dune Saga on TV, here's a little mantra that may help. " Fear is the mind killer, I will face my fear and let it pass through me " That's how I am looking at IGAN. Instead of wasting time thinking about what IGAN is going to do to me, I try to consider what I can do to fight it. You stated you still have 100% of your kidney function, that's great; luckily you caught it early on. I have lost about 80% of my kidney function in a matter of months. I never knew I was sick. No blood in my urine or other indicators with the exception of uncontrolled weight loss and headaches. Take it slow; come to terms with your condition. It doesn't have to destroy you. Once you're comfortable with your situation fight back. In the mean time, we are all here for you. I have chosen to find every silver lining to this. When it comes time for dialysis, instead of feeling sorry for myself, I have decided it will be a great time to catch up on all that reading I have been putting off. Besides you feel sorry for the sick and dying. I don't feel sick, and I sure aint dying. Well I guess I went on longer than I planned to. This group has a lot of supportive people here to help you through this. Remember you're not alone. Tony ~of all the things I have lost in life, I miss my mind the most~ > Hello. I had a biopsy in March. I was told that I have IgAN. I was > also told that there are two groups with this. 70% who have this will > never have renal failure. There are 30% that will. I have been told I > am in the 30% group. Mine is very aggressive. I have no kidney loss > yet. Im still at 100%. I have blood and protien in my urin. I have > so many questions. How long has any one went with this before kidney > failure? I feel as if I am going to down tomarrow. I know better but > sometimes I get depressed. Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2003 Report Share Posted April 1, 2003 Your welcome. Just speaking from the heart and hope it can help the next person who comes along and faced with this disease and feeling alone. Isn't that what support groups are for? Besides you should have seen the original draft... Some of those additional thoughts will be saved for the next one. Best to all Tony ~of all the things I lost in life, I miss my mind the most~ > Tony, > > I just had to write to commend you on writing an outstanding email. You are > exactly right that depression is a common step on the way to acceptance. > > Your positive attitude is certainly an inspiration for us all. > > Thank you so much for writing such an eloquent email. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Dear Penny I am so very sorry to hear that you have been diagnosed with IGAN, and I can fully understand your shock. As with any chronic condition depression is fully understandable, so do not feel bad if you are suffering with depression. I have suffered depression on and off for years, so am well aware of how you will be feeling right now. There are members here who have been put into the 'more aggressive area' range for IGAN, and it can be difficult to say how long it will be before you reach end stage, if at all. Your medics will keep a very close and eye on you and as long as your BP is kept stable that will be key in managing your condition. I am sorry I cant give you any definitive answers but know that you are among friends here and you can ask us any question you like. Welcome to the group. Best wishes UK Moderator --- In iga-nephropathy , " tony713c " <lordgrym@e...> wrote: > Hi Penny, > I am sorry to read that you have been diagnosed with the more > aggressive strain of IGAN as I had been 2 weeks ago. Let me assure > you there is nothing wrong with being depressed. You have just > received this devastating news regarding your health and feel > helpless. It is a bit overwhelming at best. > However in time you will realize being depressed takes up to > much energy, and that doing so only makes you feel worse. The last > thing you need is IGAN beating you down. You're scared, as many of us > were when we first got our diagnoses. What scariest of all is this > disease is so mysterious. What causes it, what is the best treatment > to yield its assault on your kidneys, no one knows and if they do > they aren't telling us yet. The best thing to do is concentrate on > the positive. Don't let your fears consume you. > Not to sound corny, but being a big Sci-fi fan and having just > watched the Dune Saga on TV, here's a little mantra that may > help. " Fear is the mind killer, I will face my fear and let it pass > through me " That's how I am looking at IGAN. Instead of wasting time > thinking about what IGAN is going to do to me, I try to consider what > I can do to fight it. > You stated you still have 100% of your kidney function, that's > great; luckily you caught it early on. I have lost about 80% of my > kidney function in a matter of months. I never knew I was sick. No > blood in my urine or other indicators with the exception of > uncontrolled weight loss and headaches. > Take it slow; come to terms with your condition. It doesn't have > to destroy you. Once you're comfortable with your situation fight > back. In the mean time, we are all here for you. > I have chosen to find every silver lining to this. When it comes > time for dialysis, instead of feeling sorry for myself, I have > decided it will be a great time to catch up on all that reading I > have been putting off. Besides you feel sorry for the sick and dying. > I don't feel sick, and I sure aint dying. > Well I guess I went on longer than I planned to. This group has a > lot of supportive people here to help you through this. Remember > you're not alone. > > Tony > ~of all the things I have lost in life, I miss my mind the most~ > > > > > > Hello. I had a biopsy in March. I was told that I have IgAN. I was > > also told that there are two groups with this. 70% who have this > will > > never have renal failure. There are 30% that will. I have been told > I > > am in the 30% group. Mine is very aggressive. I have no kidney loss > > yet. Im still at 100%. I have blood and protien in my urin. I have > > so many questions. How long has any one went with this before > kidney > > failure? I feel as if I am going to down tomarrow. I know better > but > > sometimes I get depressed. Penny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2003 Report Share Posted April 2, 2003 Sua A huge welcome to the group, I believe our first Thai member. Thank you for sharing your information with us, all information is readily received. Once again welcome. Best wishes > Hi everybody, > I am new for this group. > I am from THAILAND,Bangkok. > I have been in the first stage of IGAN since 3 years ago. > At this time, I'm getting better from the new medical (Bendoxane, Enapril and Fish oil ( Omacore) ). > I think it will be a useful information for everybody. > > take care > Sua > 30% > > > > Hello. I had a biopsy in March. I was told that I have IgAN. I was > > also told that there are two groups with this. 70% who have this will > > never have renal failure. There are 30% that will. I have been told I > > am in the 30% group. Mine is very aggressive. I have no kidney loss > > yet. Im still at 100%. I have blood and protien in my urin. I have > > so many questions. How long has any one went with this before kidney > > failure? I feel as if I am going to down tomarrow. I know better but > > sometimes I get depressed. Penny > > > > > > > Quote Link to comment Share on other sites More sharing options...
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