Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Hi , Please let Rob know that his statement is well put. Thanks for a wonderful post. You let that young man know that we're rooting for him. Cy Re: Scared and Confused > > > Lori: > Although my son, age 15, does not have IgA nephropathy, he has a similar disorder called Alport syndrome. He began having symptoms about 18 months ago, but was just officially diagnosed in August after a renal biopsy. > I, too, was very scared and confused. In fact, for the first month after diagnosis I couldn't sleep at night, and when I did, would wake up in panic attacks. That has finally passed, thank God, with a lot of prayer and also due to my son's own very positive attitude. I am learning not to look at the long range outcome, but to just take one day and one thing at a time. This kind of thinking may be a kind of denial, but it is all I can deal with right now. We have our ups and downs, but as Rob puts it, we are not going to sit around and worry about his kidneys. We are marching on with life and he is taking his meds religiously, and taking care of himself. > If you ever want to talk, feel free to email me privately. > There are other moms on this site whose children do have IgA nephropathy, and they will also chime in and be ready to help you. This is a wonderful, caring list, which is why I have stuck around. > Best wishes, > , mom to Rob, 15 > > > > 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 December 15, 2004 Report Share Posted December 15, 2004 Hi Steve, I love your philosophy and the way you think. I too count my blessings each and every day. The way I look at it, each day is a gift from God, and what I do with it is my gift back. In a message dated 12/15/2004 2:36:07 PM Pacific Standard Time, smills99_2000@... writes: > I'm not so concerned about the trivial > things in life any more: getting ahead, acquiring possesions, etc. I > just try to enjoy each day and enjoy the blessings I've been given. I > would reiterate what Cy said about finding a counselor. Mine has > allowed me to realize that life is really quite ambiquous and that > tyring to plan it out is an exercise in futility. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 > Very few people write in to say they're doing > fine - and it's very easy to believe that the complaints are universal. I think this is a very good point. I've had IgaN since about 22 and probably into my teens, but just never knew it. I am now 37 and doing relatively well - knock on wood. Pierre has inspired me with a similar story as he has had the disease for 30+ years. I'm sure that if my children had this I would be worried senseless. However, having the disease gives one a little more perspective in that there's no reason to panic. In fact, it's been somewhat beneficial in the sense that I've slowed way down. I'm not so concerned about the trivial things in life any more: getting ahead, acquiring possesions, etc. I just try to enjoy each day and enjoy the blessings I've been given. I would reiterate what Cy said about finding a counselor. Mine has allowed me to realize that life is really quite ambiquous and that tyring to plan it out is an exercise in futility. -Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Lori, That is great that you are giving her an opportunity to talk with a counselor. She will find that very helpful. In a message dated 12/15/2004 7:15:30 PM Pacific Standard Time, littlell523@... writes: > had her first counseling appointment today. I was at work, > but the counslor did call me and tell me some of the things that > talked about. She is coming to the house to see us again on > Tuesday. I don't have to work until later so I will be there. I > have to say one thing about this, I loved my daughters with all my > heart and soul, but this has brought us so much closer. I really > cherish everything so much more and find myself not getting mad > about the little things like her room not being spotless. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Lori, That is great that you are giving her an opportunity to talk with a counselor. She will find that very helpful. In a message dated 12/15/2004 7:15:30 PM Pacific Standard Time, littlell523@... writes: > had her first counseling appointment today. I was at work, > but the counslor did call me and tell me some of the things that > talked about. She is coming to the house to see us again on > Tuesday. I don't have to work until later so I will be there. I > have to say one thing about this, I loved my daughters with all my > heart and soul, but this has brought us so much closer. I really > cherish everything so much more and find myself not getting mad > about the little things like her room not being spotless. > > Lori Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Very nice message Steve. You know, most of the 25 odd years, I would have had nothing to write about, even if there had been an internet back then. It was all pretty uneventful - and I'm not an unusual case. In the " putting it in perspective " department... I heard a touching story on the local news today, about a young girl, a striking blond 20 year old, who was born with cystic fibrosis. At this point, she had about 3 months to live, virtually unable to breathe (never been able to go to school or work), so her mother and her aunt both donated a lower lobe of one of their lungs. It's a very risky operation for both donors, as well as for the recipient. The operation was a success, but now, unlike those of us who could have a long life with a kidney transplant, or just a long life period with kidney disease, the life expectancy of people who get a successful lung transplant like this one is only 5 more years - and that's when it's successful. Nobody so far who has had this specific type of transplant has lived more than 5 years. Yet, this young woman is very happy to have the extra time she was given, and she hopes to break the record. I sure hope she will. Compare that to people who started dialysis in the 1960's and who are still living. Pierre Re: Scared and Confused > > > > Very few people write in to say they're doing > > fine - and it's very easy to believe that the complaints are universal. > > I think this is a very good point. I've had IgaN since about 22 and > probably into my teens, but just never knew it. I am now 37 and doing > relatively well - knock on wood. Pierre has inspired me with a > similar story as he has had the disease for 30+ years. I'm sure that > if my children had this I would be worried senseless. However, having > the disease gives one a little more perspective in that there's no > reason to panic. In fact, it's been somewhat beneficial in the sense > that I've slowed way down. I'm not so concerned about the trivial > things in life any more: getting ahead, acquiring possesions, etc. I > just try to enjoy each day and enjoy the blessings I've been given. I > would reiterate what Cy said about finding a counselor. Mine has > allowed me to realize that life is really quite ambiquous and that > tyring to plan it out is an exercise in futility. > > -Steve > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 Very nice message Steve. You know, most of the 25 odd years, I would have had nothing to write about, even if there had been an internet back then. It was all pretty uneventful - and I'm not an unusual case. In the " putting it in perspective " department... I heard a touching story on the local news today, about a young girl, a striking blond 20 year old, who was born with cystic fibrosis. At this point, she had about 3 months to live, virtually unable to breathe (never been able to go to school or work), so her mother and her aunt both donated a lower lobe of one of their lungs. It's a very risky operation for both donors, as well as for the recipient. The operation was a success, but now, unlike those of us who could have a long life with a kidney transplant, or just a long life period with kidney disease, the life expectancy of people who get a successful lung transplant like this one is only 5 more years - and that's when it's successful. Nobody so far who has had this specific type of transplant has lived more than 5 years. Yet, this young woman is very happy to have the extra time she was given, and she hopes to break the record. I sure hope she will. Compare that to people who started dialysis in the 1960's and who are still living. Pierre Re: Scared and Confused > > > > Very few people write in to say they're doing > > fine - and it's very easy to believe that the complaints are universal. > > I think this is a very good point. I've had IgaN since about 22 and > probably into my teens, but just never knew it. I am now 37 and doing > relatively well - knock on wood. Pierre has inspired me with a > similar story as he has had the disease for 30+ years. I'm sure that > if my children had this I would be worried senseless. However, having > the disease gives one a little more perspective in that there's no > reason to panic. In fact, it's been somewhat beneficial in the sense > that I've slowed way down. I'm not so concerned about the trivial > things in life any more: getting ahead, acquiring possesions, etc. I > just try to enjoy each day and enjoy the blessings I've been given. I > would reiterate what Cy said about finding a counselor. Mine has > allowed me to realize that life is really quite ambiquous and that > tyring to plan it out is an exercise in futility. > > -Steve > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2004 Report Share Posted December 15, 2004 had her first counseling appointment today. I was at work, but the counslor did call me and tell me some of the things that talked about. She is coming to the house to see us again on Tuesday. I don't have to work until later so I will be there. I have to say one thing about this, I loved my daughters with all my heart and soul, but this has brought us so much closer. I really cherish everything so much more and find myself not getting mad about the little things like her room not being spotless. Lori > > > Very few people write in to say they're doing > > fine - and it's very easy to believe that the complaints are universal. > > I think this is a very good point. I've had IgaN since about 22 and > probably into my teens, but just never knew it. I am now 37 and doing > relatively well - knock on wood. Pierre has inspired me with a > similar story as he has had the disease for 30+ years. I'm sure that > if my children had this I would be worried senseless. However, having > the disease gives one a little more perspective in that there's no > reason to panic. In fact, it's been somewhat beneficial in the sense > that I've slowed way down. I'm not so concerned about the trivial > things in life any more: getting ahead, acquiring possesions, etc. I > just try to enjoy each day and enjoy the blessings I've been given. I > would reiterate what Cy said about finding a counselor. Mine has > allowed me to realize that life is really quite ambiquous and that > tyring to plan it out is an exercise in futility. > > -Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 17, 2004 Report Share Posted December 17, 2004 Betsy: Thanks for sharing your son's success story with us. It is very heartening to hear that he has done so well! , mom to Rob, 15 My son was 21 at the time of the transplant, and he went back to school right after to finish his last year of college. He is now almost 25 (next month) and is a software engineer for a government contractor. He did have a recurrence of the IgAN in the new kidney about 1.5 years after the transplant, which was treated successfully with Cytoxan and things are stable now 3+ years after the transplant. He has not been involved in a support group and thinks it's rather silly that I am still active with this group, but as I point out to him, he still has IgAN, new kidney or not. Actually I forward pertinent items to him and he does read them. He's enjoying a good income and a steady girlfriend, who has stood loyally by his side through transplant and recurrence, and is doing well on his current mix of meds, so he feels life is very good. He also has a transplant nephrologist who is terrific and has been very supportive and accessible by phone or email, so things do seem under control, at least for now. thanks for your concern - Betsy Quote Link to comment Share on other sites More sharing options...
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