Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 What a great email Pierre! I especially liked the analogy to learning to drive. It is so true that it all becomes second nature after a while! Pierre wrote: It's a bit like learning to drive. Everything looks complicated and insurmountable at first, but gradually, we take more and more control over our driving, and before we know it, we're casually speeding along on the expressway without giving it a second thought. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 , How are you feeling? You have been in my prayers along with and and all your donors. I hope you are feeling well enough to thoroughly enjoy the holidays with your family. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi Mike. Sorry about the diagnosis, but welcome to the group. I hope we will be able to provide the support you need. I would suggest reading over the info at www.igan.ca , particularly the IgA Nephropathy Notebook section of it. That pretty much covers it (it serves as our FAQ), but don't hesitate to ask if you have any questions. It's hard to say more at this point, not knowing what level of IgAN you have. For most of us, being diagnosed with a kidney disease is or was our first experience with any significant ill health, beyond the usual things like flu, colds, measles, etc. In all likelyhood, it's your first brush with chronic disease. It can be hard to accept at first, but luckily, it's not really something that is immediately life-threatening, and depending on where you are in terms of chronic renal impairment, it may never be. I was at a " live " support group meeting this past Friday. One lady there, who is looking at dialysis within the year and only found out about it a few months ago, broke down in tears as we were discussing some of the problems we encounter. But everyone else there was already on some form of dialysis, or has been and subsequently got a kidney transplant. None of those cried, because they have all grown to accept it, to take whatever control they can over it (proper diet, medication, exercise, etc.), and to go on with their lives, much like anyone else does who doesn't have kidney failure. In fact, we all tend to have been strengthened in some ways by having kidney disease. I'm not saying it will always be easy, and there will be ups and downs, but there certainly is plenty of room for optimism and good cheer. As for the lady who cried, I think she left realizing that we all went through it before - so she is not alone, and we're all still here, living life pretty much like most people do, except for perhaps the inconvenience of having to go to dialysis or of having to take some pills. It's a bit like learning to drive. Everything looks complicated and insurmountable at first, but gradually, we take more and more control over our driving, and before we know it, we're casually speeding along on the expressway without giving it a second thought. Pierre kidney disease > Hi, I am new, and just diagnosed with iga disease..a great start for > the holidays but i am coping ok. i think for at least now. My name > is Mike, i am 44, from il, usa. I have 2 great kids that i love and > i wish they didnt have to see their dad go through all of this, but > you know i take whatever life gives me and try not to mope about it. > > i am a contractor for a home corporation and work long hours, and the > disease sure does take it out on me by the end of the day. my wife > has to see me come in so tired and doesnt know how to handle it. > during the biopsy she stayed with me in the hospital, and my sister > said that my kids were going " where's daddy? " over and over, and it > was hard for her to explain. > > but thank you for this site. i dont know anything about the disease > but ill try to learn. > > Mike > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Pierre, That was a beautiful welcome and post. Thank you for such an incredible sight! > Hi Mike. > > Sorry about the diagnosis, but welcome to the group. > > I hope we will be able to provide the support you need. I would suggest > reading over the info at www.igan.ca , particularly the IgA Nephropathy > Notebook section of it. That pretty much covers it (it serves as our FAQ), > but don't hesitate to ask if you have any questions. It's hard to say more > at this point, not knowing what level of IgAN you have. > > For most of us, being diagnosed with a kidney disease is or was our first > experience with any significant ill health, beyond the usual things like > flu, colds, measles, etc. In all likelyhood, it's your first brush with > chronic disease. It can be hard to accept at first, but luckily, it's not > really something that is immediately life-threatening, and depending on > where you are in terms of chronic renal impairment, it may never be. > > I was at a " live " support group meeting this past Friday. One lady there, > who is looking at dialysis within the year and only found out about it a few > months ago, broke down in tears as we were discussing some of the problems > we encounter. But everyone else there was already on some form of dialysis, > or has been and subsequently got a kidney transplant. None of those cried, > because they have all grown to accept it, to take whatever control they can > over it (proper diet, medication, exercise, etc.), and to go on with their > lives, much like anyone else does who doesn't have kidney failure. In fact, > we all tend to have been strengthened in some ways by having kidney disease. > I'm not saying it will always be easy, and there will be ups and downs, but > there certainly is plenty of room for optimism and good cheer. > > As for the lady who cried, I think she left realizing that we all went > through it before - so she is not alone, and we're all still here, living > life pretty much like most people do, except for perhaps the inconvenience > of having to go to dialysis or of having to take some pills. > > It's a bit like learning to drive. Everything looks complicated and > insurmountable at first, but gradually, we take more and more control over > our driving, and before we know it, we're casually speeding along on the > expressway without giving it a second thought. > > Pierre > > > kidney disease > > > > Hi, I am new, and just diagnosed with iga disease..a great start for > > the holidays but i am coping ok. i think for at least now. My name > > is Mike, i am 44, from il, usa. I have 2 great kids that i love and > > i wish they didnt have to see their dad go through all of this, but > > you know i take whatever life gives me and try not to mope about it. > > > > i am a contractor for a home corporation and work long hours, and the > > disease sure does take it out on me by the end of the day. my wife > > has to see me come in so tired and doesnt know how to handle it. > > during the biopsy she stayed with me in the hospital, and my sister > > said that my kids were going " where's daddy? " over and over, and it > > was hard for her to explain. > > > > but thank you for this site. i dont know anything about the disease > > but ill try to learn. > > > > Mike > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 OR site > > Hi Mike. > > > > Sorry about the diagnosis, but welcome to the group. > > > > I hope we will be able to provide the support you need. I would > suggest > > reading over the info at www.igan.ca , particularly the IgA > Nephropathy > > Notebook section of it. That pretty much covers it (it serves as > our FAQ), > > but don't hesitate to ask if you have any questions. It's hard to > say more > > at this point, not knowing what level of IgAN you have. > > > > For most of us, being diagnosed with a kidney disease is or was our > first > > experience with any significant ill health, beyond the usual things > like > > flu, colds, measles, etc. In all likelyhood, it's your first brush > with > > chronic disease. It can be hard to accept at first, but luckily, > it's not > > really something that is immediately life-threatening, and > depending on > > where you are in terms of chronic renal impairment, it may never be. > > > > I was at a " live " support group meeting this past Friday. One lady > there, > > who is looking at dialysis within the year and only found out about > it a few > > months ago, broke down in tears as we were discussing some of the > problems > > we encounter. But everyone else there was already on some form of > dialysis, > > or has been and subsequently got a kidney transplant. None of those > cried, > > because they have all grown to accept it, to take whatever control > they can > > over it (proper diet, medication, exercise, etc.), and to go on > with their > > lives, much like anyone else does who doesn't have kidney failure. > In fact, > > we all tend to have been strengthened in some ways by having kidney > disease. > > I'm not saying it will always be easy, and there will be ups and > downs, but > > there certainly is plenty of room for optimism and good cheer. > > > > As for the lady who cried, I think she left realizing that we all > went > > through it before - so she is not alone, and we're all still here, > living > > life pretty much like most people do, except for perhaps the > inconvenience > > of having to go to dialysis or of having to take some pills. > > > > It's a bit like learning to drive. Everything looks complicated and > > insurmountable at first, but gradually, we take more and more > control over > > our driving, and before we know it, we're casually speeding along > on the > > expressway without giving it a second thought. > > > > Pierre > > > > > > kidney disease > > > > > > > Hi, I am new, and just diagnosed with iga disease..a great start > for > > > the holidays but i am coping ok. i think for at least now. My > name > > > is Mike, i am 44, from il, usa. I have 2 great kids that i love > and > > > i wish they didnt have to see their dad go through all of this, > but > > > you know i take whatever life gives me and try not to mope about > it. > > > > > > i am a contractor for a home corporation and work long hours, and > the > > > disease sure does take it out on me by the end of the day. my > wife > > > has to see me come in so tired and doesnt know how to handle it. > > > during the biopsy she stayed with me in the hospital, and my > sister > > > said that my kids were going " where's daddy? " over and over, and > it > > > was hard for her to explain. > > > > > > but thank you for this site. i dont know anything about the > disease > > > but ill try to learn. > > > > > > Mike > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Thanks for mentioning it, and . One of my few clear-thinking moments before I'm off to dialysis Normally, I go on Tuesdays, Thursdays and Saturdays, but, since the unit is closed on Christmas day and New Year's, the schedules get rearranged a bit for the next two weeks. Pierre Re: kidney disease > What a great email Pierre! I especially liked the analogy to learning to > drive. It is so true that it all becomes second nature after a while! > > Pierre wrote: > > It's a bit like learning to drive. Everything looks complicated and > insurmountable at first, but gradually, we take more and more control over > our driving, and before we know it, we're casually speeding along on the > expressway without giving it a second thought. > > Pierre > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2003 Report Share Posted December 22, 2003 Hi , A very warm welcome to you. I am just always sad when a young one is diagnosed. My youngest is a Sophomore in college, so that always makes me heart a little sad to think of someone her age dealing with all this. As I have recommended several times today, please do take a look at www.igan.ca for specific information on the IgAN. I don't think any of us here are experts on the Lupus, but we can sure answer your IgAN questions. I have not taken Cellcept, although other members in the group have, so I will have to defer to them for feedback on that front. However, on the fatigue factor, that seems to be pretty common with IgAN, and it is important to learn to pace yourself there. We look forward to getting to know you , and welcome again. Quote Link to comment Share on other sites More sharing options...
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