Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 pgl-groups@... writes: << The bottom line is that if a nephrologist specifically " forbids " pregnancy, I would certainly take that very seriously. >> ------ It's hard to wait when you're young and eager to start a family. I was stuck waiting five years after getting lymphoma in my first year of marriage -- it was such a hard time. (I was treated 24 years ago, and have been cancer-free since). Eventually, I did have two children (the youngest is the one with IgaN). But every time either child has had a health problem, I've wondered if it had anything to do with my earlier illness, even though I was " cleared " to get pregnant after the five year waiting period. It's not only about bringing a live, healthy infant into the world, it's about watching that child grow and develop and face health questions of his own later in life. You wouldn't want the burden of guilt of wondering whether the fact that you got pregnant despite doctors' warnings was wise or not. Wait until you have the support of your doctor(s) before taking this step. There are no guarantees, of course, but all you can do is listen to the best advice you have available, based on whatever is " knowable " . Parenting is hard enough without such an added burden of guilt and worry. I wish you well, and I do truly sympathize with your dilemma. Katisha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 I would definitely agree with Pierre. Everything and anything that has to do with the disease and treatment must be discussed with the nephrologist. Although I don't think they are infallible (that's why second opinions help sometimes), they are the best equipped to advise and treat people like us. I have had heated debates with my nephs, and they have been very considerate and kind to me, and taken the time to teach and instruct me properly... At the same time they have admitted that they don't know everything, and have told me that my observations and questions were useful. The verdict is not yet out on raw vegan diets so my nephs and I are following my progress interestedly. If in doubt, always ask. Don't worry about them being busy and overworked, and not having the time to entertain your " silly " questions, just bug them as much as you need to hehe. No actually, I plan carefully for every followup, with questions listed and comments prepared that I want feedback on. It gives structure to the followup, and gets me taken seriously grace. ----Original Message Follows---- Reply-To: iga-nephropathy To: <iga-nephropathy > Subject: Pregnancy Date: Fri, 13 Sep 2002 08:06:54 -0400 We have to understand that there are people in this group whose symptoms differ greatly. IgA nephropathy generally doesn't cause heavy proteinuria, but it does in some, many of whom are in this group. The situation of someone who is diagnosed with mild IgAN is quite different than someone who also has mild IgAN but with heavy proteinuria. So, as the operator, more or less, of this group, I have to reinforce that nothing should ever be done or taken just because someone else says they did it or took it. It would be foolish in the extreme to assume a nephrologist is wrong and to go ahead with pregnancy despite being warned against it. This is a very serious matter. There is a little information on www.igan.ca , specifically on http://www.igan.ca/id42.htm about pregnancy and what can happen. Pierre _________________________________________________________________ Send and receive Hotmail on your mobile device: http://mobile.msn.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 I don't think nephrologists are infallible either, but the odds are in favour of them being right, especially when dealing with potentially life-threatening situations. With pregnancy and IgAN, there is a lot of grey area where it might or it might not be Ok. But there are some situations where a pregnancy might actually be life threatening, not just unlikely of a successful outcome, so, it isn't to be taken lightly. That doesn't mean there is no possibility of pregnancy at all in the future if the IgAN remains mild and stable for a reasonable period. However, once the chronic renal failure gets past a certain point, it may not be advisable no matter what. The bottom line is that if a nephrologist specifically " forbids " pregnancy, I would certainly take that very seriously. Certainly, get a second opinion if necessary. Pierre Pregnancy > Date: Fri, 13 Sep 2002 08:06:54 -0400 > > We have to understand that there are people in this group whose symptoms > differ greatly. IgA nephropathy generally doesn't cause heavy proteinuria, > but it does in some, many of whom are in this group. The situation of > someone who is diagnosed with mild IgAN is quite different than someone who > also has mild IgAN but with heavy proteinuria. > > So, as the operator, more or less, of this group, I have to reinforce that > nothing should ever be done or taken just because someone else says they did > it or took it. It would be foolish in the extreme to assume a nephrologist > is wrong and to go ahead with pregnancy despite being warned against it. > This is a very serious matter. > > There is a little information on www.igan.ca , specifically on > http://www.igan.ca/id42.htm about pregnancy and what can happen. > > Pierre > > > > > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Some very wise words Pierre, and I agree this had to be said. We must within this group reinforce from time to time, that going off and doing your own thing treatement/option wise with IGAN, can prove very dangerous. Like Pierre says this is a very serious matter, and with a condition such as IGAN, proper management and care is 100% recommended. Some of us have had choices given to us that we would rather not have heard, and indeed at times thought why should we adhere to this, I feel ok now...all I am saying people is please think carefully about what you may or may not be contemplating for your future, you may well find yourself in dire straits if you ignore the advice you have been given. Pregnancy We have to understand that there are people in this group whose symptoms differ greatly. IgA nephropathy generally doesn't cause heavy proteinuria, but it does in some, many of whom are in this group. The situation of someone who is diagnosed with mild IgAN is quite different than someone who also has mild IgAN but with heavy proteinuria. So, as the operator, more or less, of this group, I have to reinforce that nothing should ever be done or taken just because someone else says they did it or took it. It would be foolish in the extreme to assume a nephrologist is wrong and to go ahead with pregnancy despite being warned against it. This is a very serious matter. There is a little information on www.igan.ca , specifically on http://www.igan.ca/id42.htm about pregnancy and what can happen. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 Oh no they definitely are not. I speak from experience I am on my second Nephrologist and he is frankly brilliant as far as I am concerned. When he advised against pregnancy, of course we grilled him why not, and he told me why not, and we went away confident that he knew better than us what would happen if we ignored his advice. However that said, he did say if I maintained a stable status for more than 12 months this could be reconsidered, but I would have to be prepared for many hospital visits and maybe bed rest in hospital for most of the pregnancy. Sadly I did not maintain a sensible level of good health and results, and the option was given a huge NO NO by which time I had reached 40 anyway. Sad and I do feel cheated sometimes, but life is what you make it, and I am filling my life with animals instead ! Just my angle on this very sensitive and poignant matter. Re: Pregnancy I don't think nephrologists are infallible either, but the odds are in favour of them being right, especially when dealing with potentially life-threatening situations. With pregnancy and IgAN, there is a lot of grey area where it might or it might not be Ok. But there are some situations where a pregnancy might actually be life threatening, not just unlikely of a successful outcome, so, it isn't to be taken lightly. That doesn't mean there is no possibility of pregnancy at all in the future if the IgAN remains mild and stable for a reasonable period. However, once the chronic renal failure gets past a certain point, it may not be advisable no matter what. The bottom line is that if a nephrologist specifically " forbids " pregnancy, I would certainly take that very seriously. Certainly, get a second opinion if necessary. Pierre Pregnancy > Date: Fri, 13 Sep 2002 08:06:54 -0400 > > We have to understand that there are people in this group whose symptoms > differ greatly. IgA nephropathy generally doesn't cause heavy proteinuria, > but it does in some, many of whom are in this group. The situation of > someone who is diagnosed with mild IgAN is quite different than someone who > also has mild IgAN but with heavy proteinuria. > > So, as the operator, more or less, of this group, I have to reinforce that > nothing should ever be done or taken just because someone else says they did > it or took it. It would be foolish in the extreme to assume a nephrologist > is wrong and to go ahead with pregnancy despite being warned against it. > This is a very serious matter. > > There is a little information on www.igan.ca , specifically on > http://www.igan.ca/id42.htm about pregnancy and what can happen. > > Pierre > > > > > > _________________________________________________________________ > Send and receive Hotmail on your mobile device: http://mobile.msn.com > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 13, 2002 Report Share Posted September 13, 2002 can you enlarge on the statement " The situation of > someone who is diagnosed with mild IgAN is quite different than someone who > also has mild IgAN but with heavy proteinuria. " ? or was this only relevant to those who may be pregnant ( a situation I dont expect to find myself in although if I do I'll pay for all iganers to have 2 weeks in Disneyland!!lol) Pregnancy > We have to understand that there are people in this group whose symptoms > differ greatly. IgA nephropathy generally doesn't cause heavy proteinuria, > but it does in some, many of whom are in this group. The situation of > someone who is diagnosed with mild IgAN is quite different than someone who > also has mild IgAN but with heavy proteinuria. > > So, as the operator, more or less, of this group, I have to reinforce that > nothing should ever be done or taken just because someone else says they did > it or took it. It would be foolish in the extreme to assume a nephrologist > is wrong and to go ahead with pregnancy despite being warned against it. > This is a very serious matter. > > There is a little information on www.igan.ca , specifically on > http://www.igan.ca/id42.htm about pregnancy and what can happen. > > Pierre > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 Hi . I was speaking in terms of pregnancy, but, it applies to everyone to some extent. Most IgANers do not, and may never have nephrotic range proteinuria. Those that do have more problems simply because the really heavy proteinuria itself causes adverse symptoms beyond what the IgAN does, not to mention that it is an increased risk for end-stage renal failure. Pierre Pregnancy > > > > We have to understand that there are people in this group whose symptoms > > differ greatly. IgA nephropathy generally doesn't cause heavy proteinuria, > > but it does in some, many of whom are in this group. The situation of > > someone who is diagnosed with mild IgAN is quite different than someone > who > > also has mild IgAN but with heavy proteinuria. > > > > So, as the operator, more or less, of this group, I have to reinforce that > > nothing should ever be done or taken just because someone else says they > did > > it or took it. It would be foolish in the extreme to assume a nephrologist > > is wrong and to go ahead with pregnancy despite being warned against it. > > This is a very serious matter. > > > > There is a little information on www.igan.ca , specifically on > > http://www.igan.ca/id42.htm about pregnancy and what can happen. > > > > Pierre > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 14, 2002 Report Share Posted September 14, 2002 the reason I asked was that I'm mild/medium but my quacks seem to take little or no interest in protein loss and as I average 4g/24hrs (range 8g-2g) and I see the neph on weds I just wanted a " delphic " opinion!lol Pregnancy > > > > > > > We have to understand that there are people in this group whose symptoms > > > differ greatly. IgA nephropathy generally doesn't cause heavy > proteinuria, > > > but it does in some, many of whom are in this group. The situation of > > > someone who is diagnosed with mild IgAN is quite different than someone > > who > > > also has mild IgAN but with heavy proteinuria. > > > > > > So, as the operator, more or less, of this group, I have to reinforce > that > > > nothing should ever be done or taken just because someone else says they > > did > > > it or took it. It would be foolish in the extreme to assume a > nephrologist > > > is wrong and to go ahead with pregnancy despite being warned against it. > > > This is a very serious matter. > > > > > > There is a little information on www.igan.ca , specifically on > > > http://www.igan.ca/id42.htm about pregnancy and what can happen. > > > > > > Pierre > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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