Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Hi , sorry to hear that Alan won't be joining us just yet. After all he's been through I can't say I am surprised he doesn't want to talk about it just yet. We all have problems with our doctors not asking the right questions; I started out with a lymphatic " problem " but all up it was only 3 months later I had the biopsy. I imagine he's just sick of it all at the moment, and will at some point come back. Do keep in touch yourself as it will help you to understand him, particularly when he is tired and sore and cranky! (like me) _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 3, 2001 Report Share Posted April 3, 2001 Hi . I can understand your husband not wanting to talk about it. I pretty much ignored my kidney problems for over a decade myself, until the high blood pressure caught up with me. To answer your question about sinuses, I know of no established relation between IgAN and sinuses, only upper respiratory infections. Some meds can cause that though. Some BP meds, like any of the ACE inhibitors (and I would guess he is taking one of those), can actually cause a bit of a taste disturbance, where things sort of have a metallic taste. Colas are restricted, usually, in advanced chronic renal failure (CRF), for two reasons. First, such people often have to limit intake of phosphates, and some soft drinks, like colas, are on the list. Secondly, people in CRF sometimes can develop a condition called metabolic acidosis. This means that the blood plasma is too acidic. Soft drinks and caffeine can contribute to that (but they aren't the cause). This is pretty rare unless on dialysis or pretty close to needing it. However, I have to say that some people advocate limiting those much earlier. Assuming that he is has mild to moderate IgAN, the most important thing he can do is make sure his blood pressure is controlled, preferably down to about 125/75. For a person who already has hypertension secondary to the IgAN, this pretty much necessitates medication (often more than one), and it makes it advisable to cut back on anything that raises BP, such as caffeine. It also means cutting back on alcohol (but it's not really necessary to eliminate it completely), aiming for optimal weight (BMI), and exercising regularly. Pierre Support > Hi Pierre and Co. > I joined a few days ago, really excited to find this site. Thought it > was going to help my husband understand more of what is going on with his > body, etc...Well, he emailed me a note letting me know he tried to join and > he just isn't ready to share his story (It's his night out tonight so he > wasn't home when I got here...honest, we really do talk in person! ). I > think he feels that if he has to talk about it, then he is sick. If he > doesn't have to talk about it, then nothing is wrong. I know that I have > learned things from reading the archives and links that he probably knows, > but doesn't want to talk about. So, until he is ready, it'll be me doing the > talking here and more than likely, asking a lot of questions. > I had mentioned before that we had problems with doctors...for over a > year Alan was seeing different doctors and they were focusing on his > pancreas, thinking he might have cancer, but had major problems with the > doctors...his primary care doctor finally sent him to the kidney specialist > and here we are. I saw posts on people having problems with their tonsils. > Has anyone been having problems with sinus infections? Alan has had close to > 6 already this year. We were wondering how this relates to IgAN, if at all. > Also, I saw in a posting, someone mentioned that their son had to stay > away from dark colas and I was wondering why. I know that Alan can't stand > the taste of Pepsi anymore and he used to drink close to a 2liter a day. I > was wondering if it was related to the meds..... > Sorry to ramble....thanks for the help. R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 4, 2001 Report Share Posted April 4, 2001 R., Welcome to this site. Your husband will come to terms with his illness in time. I think it takes longer for men to admit they are sick. On the tonsils theory, I was sick all the time. Kidney infections, strep throat, sinus infections, bladder infections, yeast infections, you name something that could be infected, I had it. And several times a year. I found out in Oct. 96 at age 23 that I had IgAN, and around that time I was having a raging sinus infection and sore throat. I visited an ENT, who told me that I would feel so much better if I had my tonsils out. So in Dec. 96, I had that done, along with the sinus surgery to correct a deviated septum and remove a polyp. I tell ya, I have not had but ONE bladder infection in the 5 years since that surgery, and no other infections. I still have major sinus problems, but that is because of my allergies, and not really being able to take most prescription allergy medicines because they can raise your blood pressure, and mine is high enough. My ENT doc said my tonsils were so infected that when he pulled on them to take them out, pus just came out. I know, gross. But it's amazing how much infection your tonsils can hold and how sick they can make you. I would definitely visit an ENT about getting his tonsils out. I was out of work for about 2 weeks, but that was because I had two major surgeries at once. It is painful for an adult to have the surgery (afterwards), but it is so worth it. I also read back in 96 how some kidney specialists thought taking the tonsils out would help IgAN. I'm not real sure about that, but it doesn't hurt I don't guess. Good luck with you and your husband. Teri > Hi Pierre and Co. > I joined a few days ago, really excited to find this site. Thought it > was going to help my husband understand more of what is going on with his > body, etc...Well, he emailed me a note letting me know he tried to join and > he just isn't ready to share his story (It's his night out tonight so he > wasn't home when I got here...honest, we really do talk in person! ). I > think he feels that if he has to talk about it, then he is sick. If he > doesn't have to talk about it, then nothing is wrong. I know that I have > learned things from reading the archives and links that he probably knows, > but doesn't want to talk about. So, until he is ready, it'll be me doing the > talking here and more than likely, asking a lot of questions. > I had mentioned before that we had problems with doctors...for over a > year Alan was seeing different doctors and they were focusing on his > pancreas, thinking he might have cancer, but had major problems with the > doctors...his primary care doctor finally sent him to the kidney specialist > and here we are. I saw posts on people having problems with their tonsils. > Has anyone been having problems with sinus infections? Alan has had close to > 6 already this year. We were wondering how this relates to IgAN, if at all. > Also, I saw in a posting, someone mentioned that their son had to stay > away from dark colas and I was wondering why. I know that Alan can't stand > the taste of Pepsi anymore and he used to drink close to a 2liter a day. I > was wondering if it was related to the meds..... > Sorry to ramble....thanks for the help. R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Hi Sindy! My fiance is also not interested in his IGAN. But I am. So I sympathise with you. I read all the messages. He sometimes askes me if anything interesting is posted and I try to keep him informed. He calls it my hobby LOL! .. I wanted to ask something about the lab results. In some letters there is talk about "BUN" I have looked it up, but I can't find what it means. Can anyone explain? In May we have the next appointment with the internal specialist, I'm gathering information about labresults now. Last time we didn't get any numbers,but next time I'l ask. I want to know how his kidneyfunction is. By what the doctor told us last time, I guess he's just in the very early stage of kidney failure. Is it enough to have an appointment only ones a year then? Thanks. Groetjes, Mariëtte (the Netherlands) Support Hi Pierre and Co. I joined a few days ago, really excited to find this site. Thought it was going to help my husband understand more of what is going on with his body, etc...Well, he emailed me a note letting me know he tried to join and he just isn't ready to share his story (It's his night out tonight so he wasn't home when I got here...honest, we really do talk in person! ). I think he feels that if he has to talk about it, then he is sick. If he doesn't have to talk about it, then nothing is wrong. I know that I have learned things from reading the archives and links that he probably knows, but doesn't want to talk about. So, until he is ready, it'll be me doing the talking here and more than likely, asking a lot of questions. I had mentioned before that we had problems with doctors...for over a year Alan was seeing different doctors and they were focusing on his pancreas, thinking he might have cancer, but had major problems with the doctors...his primary care doctor finally sent him to the kidney specialist and here we are. I saw posts on people having problems with their tonsils. Has anyone been having problems with sinus infections? Alan has had close to 6 already this year. We were wondering how this relates to IgAN, if at all. Also, I saw in a posting, someone mentioned that their son had to stay away from dark colas and I was wondering why. I know that Alan can't stand the taste of Pepsi anymore and he used to drink close to a 2liter a day. I was wondering if it was related to the meds..... Sorry to ramble....thanks for the help. R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 We should form a group of women whose significant other is in denial about their IgAN. My husband doesn't read the messages and says 'all those people are worry warts'. His last doctor appointment he came home and said 'She's just so pessimistic' and that's it! Nothing else! So I'm going to the next appointment. I do worry, and I'm sure there's a happy medium between the two of us. At least he does everything they tell him to do. We all deal with things in the best way we know how. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 I'm not letting him go alone, if only for support. But also because he doesn't understand those medical terms as I do and two remember more than one. Also I know what is said and I have questions too. Mariëtte Re: Support > > We should form a group of women whose significant other is in denial about > their IgAN. My husband doesn't read the messages and says 'all those people > are worry warts'. > > His last doctor appointment he came home and said 'She's just so > pessimistic' and that's it! Nothing else! > > So I'm going to the next appointment. I do worry, and I'm sure there's a > happy medium between the two of us. > > At least he does everything they tell him to do. We all deal with things in > the best way we know how. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 It can be affected by dehydration, and by the amount of protein eaten the day before. Mine runs in the neighborhood of 24-29 mg/dl, which would be in the dehydrated range for healthy adults but are often considered acceptable levels in a transplant recipient. Robin s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Don't be too hard on them, ladies. In a way, your husbands or fiancees are lucky to be able to ignore it. If they are fortunate, the disease will never become severe enough to demand their attention. The best thing you can do for them is to just make sure they exercise, eat a healthy diet, and have their blood pressure checked regularly. Pierre Support Hi Pierre and Co. I joined a few days ago, really excited to find this site. Thought it was going to help my husband understand more of what is going on with his body, etc...Well, he emailed me a note letting me know he tried to join and he just isn't ready to share his story (It's his night out tonight so he wasn't home when I got here...honest, we really do talk in person! ). I think he feels that if he has to talk about it, then he is sick. If he doesn't have to talk about it, then nothing is wrong. I know that I have learned things from reading the archives and links that he probably knows, but doesn't want to talk about. So, until he is ready, it'll be me doing the talking here and more than likely, asking a lot of questions. I had mentioned before that we had problems with doctors...for over a year Alan was seeing different doctors and they were focusing on his pancreas, thinking he might have cancer, but had major problems with the doctors...his primary care doctor finally sent him to the kidney specialist and here we are. I saw posts on people having problems with their tonsils. Has anyone been having problems with sinus infections? Alan has had close to 6 already this year. We were wondering how this relates to IgAN, if at all. Also, I saw in a posting, someone mentioned that their son had to stay away from dark colas and I was wondering why. I know that Alan can't stand the taste of Pepsi anymore and he used to drink close to a 2liter a day. I was wondering if it was related to the meds..... Sorry to ramble....thanks for the help. R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 7, 2001 Report Share Posted April 7, 2001 Ladies, your guys are lucky to have you. My family could care less. They don't want to hear about it. It doesn't bother them that I can barely walk this weekend thanks to the Prednisone attacking my achilles tendon on my right leg. I'm not worried about the IGaN getting me, I'm worried about the Prednisone killing me before I can get off of it. So tell them how lucky they are to have someone take at least half the worry off of them. > Don't be too hard on them, ladies. In a way, your husbands or fiancees are > lucky to be able to ignore it. If they are fortunate, the disease will never > become severe enough to demand their attention. The best thing you can do > for them is to just make sure they exercise, eat a healthy diet, and have > their blood pressure checked regularly. > Pierre > > Support > > > Hi Pierre and Co. > I joined a few days ago, really excited to find this site. Thought > it > was going to help my husband understand more of what is going on with his > body, etc...Well, he emailed me a note letting me know he tried to join > and > he just isn't ready to share his story (It's his night out tonight so he > wasn't home when I got here...honest, we really do talk in person! ). > I > think he feels that if he has to talk about it, then he is sick. If he > doesn't have to talk about it, then nothing is wrong. I know that I have > learned things from reading the archives and links that he probably knows, > but doesn't want to talk about. So, until he is ready, it'll be me doing > the > talking here and more than likely, asking a lot of questions. > I had mentioned before that we had problems with doctors...for over > a > year Alan was seeing different doctors and they were focusing on his > pancreas, thinking he might have cancer, but had major problems with the > doctors...his primary care doctor finally sent him to the kidney > specialist > and here we are. I saw posts on people having problems with their > tonsils. > Has anyone been having problems with sinus infections? Alan has had close > to > 6 already this year. We were wondering how this relates to IgAN, if at > all. > Also, I saw in a posting, someone mentioned that their son had to > stay > away from dark colas and I was wondering why. I know that Alan can't > stand > the taste of Pepsi anymore and he used to drink close to a 2liter a day. > I > was wondering if it was related to the meds..... > Sorry to ramble....thanks for the help. R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2001 Report Share Posted April 8, 2001 Hi Mariëtte. BUN stands for Blood Urea Nitrogen. Normal BUN levels are 5-18 mg/dL for children; 7-18 mg/dL for adults; and 8-20 mg/dL in the elderly. If you do an internet search for " blood urea nitrogen " (in quotation marks), you should find a lot of information. BUN doesn't mean much on its own though. It has to be interpreted in context with the rest of the lab results. It can be affected by dehydration, and by the amount of protein eaten the day before. Re frequency of neph appointments: Yes, it's common for people with relatively mild and stable chronic IgAN to see a nephrologist only once per year. In this case, it may be a good idea to have a primary care physician who can check blood pressure and urine every once in a while (like once every 4 months or so). Pierre Re: Support Hi Sindy! My fiance is also not interested in his IGAN. But I am. So I sympathise with you. I read all the messages. He sometimes askes me if anything interesting is posted and I try to keep him informed. He calls it my hobby LOL! .. I wanted to ask something about the lab results. In some letters there is talk about " BUN " I have looked it up, but I can't find what it means. Can anyone explain? In May we have the next appointment with the internal specialist, I'm gathering information about labresults now. Last time we didn't get any numbers,but next time I'l ask. I want to know how his kidneyfunction is. By what the doctor told us last time, I guess he's just in the very early stage of kidney failure. Is it enough to have an appointment only ones a year then? Thanks. Groetjes, Mariëtte (the Netherlands) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2001 Report Share Posted April 8, 2001 You're right Pierre. Maybe it sounds quite hard, but I just try to give him all the support he can get from me. In the mean time I keep an eye on him and make sure our meals are healthy.( I'm the cook you know) Mariëtte Support > > > Hi Pierre and Co. > I joined a few days ago, really excited to find this site. Thought > it > was going to help my husband understand more of what is going on with his > body, etc...Well, he emailed me a note letting me know he tried to join > and > he just isn't ready to share his story (It's his night out tonight so he > wasn't home when I got here...honest, we really do talk in person! ). > I > think he feels that if he has to talk about it, then he is sick. If he > doesn't have to talk about it, then nothing is wrong. I know that I have > learned things from reading the archives and links that he probably knows, > but doesn't want to talk about. So, until he is ready, it'll be me doing > the > talking here and more than likely, asking a lot of questions. > I had mentioned before that we had problems with doctors...for over > a > year Alan was seeing different doctors and they were focusing on his > pancreas, thinking he might have cancer, but had major problems with the > doctors...his primary care doctor finally sent him to the kidney > specialist > and here we are. I saw posts on people having problems with their > tonsils. > Has anyone been having problems with sinus infections? Alan has had close > to > 6 already this year. We were wondering how this relates to IgAN, if at > all. > Also, I saw in a posting, someone mentioned that their son had to > stay > away from dark colas and I was wondering why. I know that Alan can't > stand > the taste of Pepsi anymore and he used to drink close to a 2liter a day. > I > was wondering if it was related to the meds..... > Sorry to ramble....thanks for the help. R. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2001 Report Share Posted April 8, 2001 " Hey , Maybe youre family isn't thinking of you, but we are!! So keep youre chin up, dear!! You're not alone.. Mariëtte Support > > > > > > Hi Pierre and Co. > > I joined a few days ago, really excited to find this site. > Thought > > it > > was going to help my husband understand more of what is going on > with his > > body, etc...Well, he emailed me a note letting me know he tried > to join > > and > > he just isn't ready to share his story (It's his night out > tonight so he > > wasn't home when I got here...honest, we really do talk in > person! ). > > I > > think he feels that if he has to talk about it, then he is sick. > If he > > doesn't have to talk about it, then nothing is wrong. I know > that I have > > learned things from reading the archives and links that he > probably knows, > > but doesn't want to talk about. So, until he is ready, it'll be > me doing > > the > > talking here and more than likely, asking a lot of questions. > > I had mentioned before that we had problems with > doctors...for over > > a > > year Alan was seeing different doctors and they were focusing on > his > > pancreas, thinking he might have cancer, but had major problems > with the > > doctors...his primary care doctor finally sent him to the kidney > > specialist > > and here we are. I saw posts on people having problems with their > > tonsils. > > Has anyone been having problems with sinus infections? Alan has > had close > > to > > 6 already this year. We were wondering how this relates to IgAN, > if at > > all. > > Also, I saw in a posting, someone mentioned that their son > had to > > stay > > away from dark colas and I was wondering why. I know that Alan > can't > > stand > > the taste of Pepsi anymore and he used to drink close to a 2liter > a day. > > I > > was wondering if it was related to the meds..... > > Sorry to ramble....thanks for the help. R. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2001 Report Share Posted April 8, 2001 Ditto Marriette!! But playing devil's advocate here, try not to be too hard on the family either.......from experience I too have thought that they couldn't care less, true in some family members, but not in others. It is simply that is too painful for them to address the problem, because they love you so much, and just don't know what to say to us. I think it is always worse for the outsiders looking in, in situations such as ours. At least we know how we feel and what to do about it. But for those whose family really don't give a damn, look no further for love and support than this group. Amen, Re: Re: Support " Hey , Maybe youre family isn't thinking of you, but we are!! So keep youre chin up, dear!! You're not alone.. Mariëtte Support > > > > > > Hi Pierre and Co. > > I joined a few days ago, really excited to find this site. > Thought > > it > > was going to help my husband understand more of what is going on > with his > > body, etc...Well, he emailed me a note letting me know he tried > to join > > and > > he just isn't ready to share his story (It's his night out > tonight so he > > wasn't home when I got here...honest, we really do talk in > person! ). > > I > > think he feels that if he has to talk about it, then he is sick. > If he > > doesn't have to talk about it, then nothing is wrong. I know > that I have > > learned things from reading the archives and links that he > probably knows, > > but doesn't want to talk about. So, until he is ready, it'll be > me doing > > the > > talking here and more than likely, asking a lot of questions. > > I had mentioned before that we had problems with > doctors...for over > > a > > year Alan was seeing different doctors and they were focusing on > his > > pancreas, thinking he might have cancer, but had major problems > with the > > doctors...his primary care doctor finally sent him to the kidney > > specialist > > and here we are. I saw posts on people having problems with their > > tonsils. > > Has anyone been having problems with sinus infections? Alan has > had close > > to > > 6 already this year. We were wondering how this relates to IgAN, > if at > > all. > > Also, I saw in a posting, someone mentioned that their son > had to > > stay > > away from dark colas and I was wondering why. I know that Alan > can't > > stand > > the taste of Pepsi anymore and he used to drink close to a 2liter > a day. > > I > > was wondering if it was related to the meds..... > > Sorry to ramble....thanks for the help. R. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 8, 2001 Report Share Posted April 8, 2001 Very true . Pierre Re: Support Ladies, your guys are lucky to have you. My family could care less. They don't want to hear about it. It doesn't bother them that I can barely walk this weekend thanks to the Prednisone attacking my achilles tendon on my right leg. I'm not worried about the IGaN getting me, I'm worried about the Prednisone killing me before I can get off of it. So tell them how lucky they are to have someone take at least half the worry off of them. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 I can understand him thinking his doctor is negative. The registrar I was seeing before the neph took over, kindly told me that I had a decade if I was lucky! _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 True enough - take heart . When we all found out about our disease we were probably all shocked. I thought I would have been better to have cancer because we know more about that. But we have to move on and we have to cope becasue we have no other option. Our families are not so lucky, all they can see is what they imagine our eventual end will be (alone and in pain) and this often gets in the way of our relationships. Like when someone we know has a death and it is hard to get the courage to speak to them again, and the longer you leave it the harder it gets - our own fear gets in the way. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Nice doctor. They forget they are talking about human lives sometimes I think. For me, putting the disease in context is what I have a hard time with. If 20-30% of the people have to be transplanted, what does that mean for us? We don't know. Planning a family, our lives has been difficult because one doesn't want to be foolish and assume nothing will ever happen and you also don't want to be overly cautious. I think when we heard 20-30% we thought for sure we were going to be in the majority because my husband has always been very health conscious. Now we are in our 30s, he's turning 39 this year and we have seen changes in him that make us realize he doesn't have total control over this thing. " andria Blaelock " 04/09/2001 08:44 AM GMTPlease respond to iga-nephropathy To: iga-nephropathy cc: bcc: Subject: Re: Support I can understand him thinking his doctor is negative. The registrar I wasseeing before the neph took over, kindly told me that I had a decade if Iwas lucky!_________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 I can appreciate that. I never thought about having children at all, but now that the clock's started ticking IgAN does add an extra dimension of difficulty. alex _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Nice doctor. They forget they are talking about human lives sometimes I think. For me, putting the disease in context is what I have a hard time with. If 20-30% of the people have to be transplanted, what does that mean for us? We don't know. Planning a family, our lives has been difficult because one doesn't want to be foolish and assume nothing will ever happen and you also don't want to be overly cautious. I think when we heard 20-30% we thought for sure we were going to be in the majority because my husband has always been very health conscious. Now we are in our 30s, he's turning 39 this year and we have seen changes in him that make us realize he doesn't have total control over this thing. " andria Blaelock " 04/09/2001 08:44 AM GMTPlease respond to iga-nephropathy To: iga-nephropathy cc: bcc: Subject: Re: Support I can understand him thinking his doctor is negative. The registrar I wasseeing before the neph took over, kindly told me that I had a decade if Iwas lucky!_________________________________________________________________________Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Gee thanks Pierre, think I might move to Canada, I like your doc better than mine! Still, I'll have a new set soon and we can see how we get on with those. Now that I have got over that shock I emulate Doris Day and say kay ser ah ser ah what ever will be will be (or however you spell it). Reply-To: iga-nephropathy To: <iga-nephropathy > Subject: Re: Support Date: Mon, 9 Apr 2001 21:00:15 -0400 I remember very well being told, after I was officially diagnosed with IgAN, that I might live to a ripe old age and die of something else before the kidneys failed, that it could take 25 years, or that they could fail in six months. For a few weeks afterwards, the 6 months is the figure that stuck in my mind. But then, after six months passed and nothing at all changed, I gradually relaxed about that and didn't really give much thought thereafter. Nobody knows for sure in these matters. The best and only thing we can do, as patients, is to put the odds in our favour, and the most controllable and known factor is blood pressure (this is the case even when there is no kidney disease). Pierre _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 That's it! I'm on the next plane out to Canada and Pierre you're my new Neph, Counsellor, Pastor, Life Strategist etc LOL!!! Seriously though very well put across, and wonderfully true. I echo the think positive, but hope we are allowed the occasional 'off-day' LOL. I had one of those last week, as you know, but now am just as different, and determined to keep well (second gym induction tomorrow!), so you see I am committed if nothing else. I had never thought about the gym before now, so there you go, I guess the IGAN has done me a favour, at least I am keeping fit LOL. For those mentioning Depro, I am assuming this is a contraceptive? Over here we have something called Norplant, which is inserted into the arm via minor surgery. I had this done (prior to knowing about IGAN), but had it removed 6 months later, because I kept having severe migraines. Now take no contraception at all, which seems to suit me and all my medics. My Neph when going through my diagnosis, did mention something about oral contraception and was I taking any? I said no, and he said good job!!! As to why is anyone's guess as I had switched off after learning about the IGA!!! But I have read something about it somewhere, and am almost sure it was if someone has a kidney condition, there is a higher risk of blood pressure problems arising, or something like that. I will endeavour to find out more. And to , sorry to hear you have fallen off the wagon. Words of wisdom you ask, well how about saving your money, fresher breath, sense of achievement, prolonging life.....do I need to go on!!! Don't be fooled that one ciggy in the morning will stay that way, I tried that and like says, it soon is back up to 20 a day. Never give up trying to give up , I am routing for ya!!!! Keep well everyone. Lots of love Re: Support One way of looking at it is, the odds are that any given IgAN patient won't reach end-stage renal failure in his or her lifetime. If they do, it is likely to be a few decades, and not even considering the fact that transplants and dialysis are getting better all the time, a person can easily live out another 25-30 years or more after that. Add all that up and it pretty much equals a normal lifespan. I mean, if someone asks me if I would rather not have had this stupid kidney disease, obviously, I would rather still be perfectly healthy. On the other hand, had I been healthy, I would have had to go on peacekeeping missions in various hot spots around the world during the past decade, and I might have had might legs blown off when my Jeep ran over a land mine, or I might have been shot dead by a sniper or something. Or, I could have dropped dead from a heart attack while playing squash or hockey back in the 80's and 90's. But I didn't. I have this IgAN thing, but I'm here, now, will probably be here for the foreseeable future, and this is what counts. Think positive! When you stop to think about it, there are probably a lot worse odds of surviving many of the every day aspects of life than there are with IgAN itself, and yet, we don't think twice about getting in the car and driving on a 2-lane highway to the cottage, for example. As I said in another post, it's not always easy to do, but the only thing we CAN do is to put in our favour those odds that we can control to some extent, like blood pressure, diet, exercise, etc. Pierre Re: Support > Nice doctor. They forget they are talking about human lives sometimes I think. > > For me, putting the disease in context is what I have a hard time with. If 20-30% of the people have to be transplanted, what does that mean for us? We don't know. Planning a family, our lives has been difficult because one doesn't want to be foolish and assume nothing will ever happen and you also don't want to be overly cautious. I think when we heard 20-30% we thought for sure we were going to be in the majority because my husband has always been very health conscious. Now we are in our 30s, he's turning 39 this year and we have seen changes in him that make us realize he doesn't have total control over this thing. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 I totally agree with Pierre's point of view. Although I don't have IgAN and you might say I don't exactly feel what IgAN patients feel, but I do realize and feel it to some extent. I live this everyday with my fiancé, I know it's difficult for me but I also know it's much more difficult for him. But I come to realize that there are much worse cases than this. My fiancé almost gave up hope on our relationship and future marriage and his future as a pilot, but he somehow changed his mind after I showed him some of the messages posted here (though he's the stubborn type who never changes his mind no matter what LOL). I don't believe in something called " impossible " . Always hope, always have faith, and you're living a normal life just like everybody else. I know it's easy said than done. My point is that this disease or any disease shouldn't stop anyone from achieving what he always dreamed of being or having. Nina > One way of looking at it is, the odds are that any given IgAN patient won't > reach end-stage renal failure in his or her lifetime. If they do, it is > likely to be a few decades, and not even considering the fact that > transplants and dialysis are getting better all the time, a person can > easily live out another 25-30 years or more after that. Add all that up and > it pretty much equals a normal lifespan. > > I mean, if someone asks me if I would rather not have had this stupid kidney > disease, obviously, I would rather still be perfectly healthy. On the other > hand, had I been healthy, I would have had to go on peacekeeping missions in > various hot spots around the world during the past decade, and I might have > had might legs blown off when my Jeep ran over a land mine, or I might have > been shot dead by a sniper or something. Or, I could have dropped dead from > a heart attack while playing squash or hockey back in the 80's and 90's. But > I didn't. I have this IgAN thing, but I'm here, now, will probably be here > for the foreseeable future, and this is what counts. Think positive! > > When you stop to think about it, there are probably a lot worse odds of > surviving many of the every day aspects of life than there are with IgAN > itself, and yet, we don't think twice about getting in the car and driving > on a 2-lane highway to the cottage, for example. > > As I said in another post, it's not always easy to do, but the only thing we > CAN do is to put in our favour those odds that we can control to some > extent, like blood pressure, diet, exercise, etc. > > Pierre > > Re: Support > > > > Nice doctor. They forget they are talking about human lives sometimes I > think. > > > > For me, putting the disease in context is what I have a hard time with. If > 20-30% of the people have to be transplanted, what does that mean for us? We > don't know. Planning a family, our lives has been difficult because one > doesn't want to be foolish and assume nothing will ever happen and you also > don't want to be overly cautious. I think when we heard 20-30% we thought > for sure we were going to be in the majority because my husband has always > been very health conscious. Now we are in our 30s, he's turning 39 this year > and we have seen changes in him that make us realize he doesn't have total > control over this thing. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 Good for you Nina. Giving up was never really an option for me because my husband is such a damn slave driver LOL. He has very much the same tact on this issue as Pierre, could have been worse!!! I have to confess to have gotten infuriated with his attitude at times, but now know he is exactly right, and is something I have known all along really, but c'mon us gals have to have protestations now and then, it's just cool now because I have a real good excuse to whine now, and invariably get away with it LOL!!!!! Tell your fiancé to keep his dreams, if anything drive for them even more, but always keep the goals or dreams realistic. I had always wanted to work with people with Mental Health issues and now do so, on a voluntary basis. This would never have happened had I not been forced to retire my old job through ill health, and always remember, one door closes and another opens, or several in my case. Yep things could have been far worse than this stupid IGAN. Here endeth my sermon LOL. Best wishes Re: Support I totally agree with Pierre's point of view. Although I don't have IgAN and you might say I don't exactly feel what IgAN patients feel, but I do realize and feel it to some extent. I live this everyday with my fiancé, I know it's difficult for me but I also know it's much more difficult for him. But I come to realize that there are much worse cases than this. My fiancé almost gave up hope on our relationship and future marriage and his future as a pilot, but he somehow changed his mind after I showed him some of the messages posted here (though he's the stubborn type who never changes his mind no matter what LOL). I don't believe in something called " impossible " . Always hope, always have faith, and you're living a normal life just like everybody else. I know it's easy said than done. My point is that this disease or any disease shouldn't stop anyone from achieving what he always dreamed of being or having. Nina > One way of looking at it is, the odds are that any given IgAN patient won't > reach end-stage renal failure in his or her lifetime. If they do, it is > likely to be a few decades, and not even considering the fact that > transplants and dialysis are getting better all the time, a person can > easily live out another 25-30 years or more after that. Add all that up and > it pretty much equals a normal lifespan. > > I mean, if someone asks me if I would rather not have had this stupid kidney > disease, obviously, I would rather still be perfectly healthy. On the other > hand, had I been healthy, I would have had to go on peacekeeping missions in > various hot spots around the world during the past decade, and I might have > had might legs blown off when my Jeep ran over a land mine, or I might have > been shot dead by a sniper or something. Or, I could have dropped dead from > a heart attack while playing squash or hockey back in the 80's and 90's. But > I didn't. I have this IgAN thing, but I'm here, now, will probably be here > for the foreseeable future, and this is what counts. Think positive! > > When you stop to think about it, there are probably a lot worse odds of > surviving many of the every day aspects of life than there are with IgAN > itself, and yet, we don't think twice about getting in the car and driving > on a 2-lane highway to the cottage, for example. > > As I said in another post, it's not always easy to do, but the only thing we > CAN do is to put in our favour those odds that we can control to some > extent, like blood pressure, diet, exercise, etc. > > Pierre > > Re: Support > > > > Nice doctor. They forget they are talking about human lives sometimes I > think. > > > > For me, putting the disease in context is what I have a hard time with. If > 20-30% of the people have to be transplanted, what does that mean for us? We > don't know. Planning a family, our lives has been difficult because one > doesn't want to be foolish and assume nothing will ever happen and you also > don't want to be overly cautious. I think when we heard 20-30% we thought > for sure we were going to be in the majority because my husband has always > been very health conscious. Now we are in our 30s, he's turning 39 this year > and we have seen changes in him that make us realize he doesn't have total > control over this thing. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 I remember very well being told, after I was officially diagnosed with IgAN, that I might live to a ripe old age and die of something else before the kidneys failed, that it could take 25 years, or that they could fail in six months. For a few weeks afterwards, the 6 months is the figure that stuck in my mind. But then, after six months passed and nothing at all changed, I gradually relaxed about that and didn't really give much thought thereafter. Nobody knows for sure in these matters. The best and only thing we can do, as patients, is to put the odds in our favour, and the most controllable and known factor is blood pressure (this is the case even when there is no kidney disease). Pierre Re: Support > I can understand him thinking his doctor is negative. The registrar I was > seeing before the neph took over, kindly told me that I had a decade if I > was lucky! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 One way of looking at it is, the odds are that any given IgAN patient won't reach end-stage renal failure in his or her lifetime. If they do, it is likely to be a few decades, and not even considering the fact that transplants and dialysis are getting better all the time, a person can easily live out another 25-30 years or more after that. Add all that up and it pretty much equals a normal lifespan. I mean, if someone asks me if I would rather not have had this stupid kidney disease, obviously, I would rather still be perfectly healthy. On the other hand, had I been healthy, I would have had to go on peacekeeping missions in various hot spots around the world during the past decade, and I might have had might legs blown off when my Jeep ran over a land mine, or I might have been shot dead by a sniper or something. Or, I could have dropped dead from a heart attack while playing squash or hockey back in the 80's and 90's. But I didn't. I have this IgAN thing, but I'm here, now, will probably be here for the foreseeable future, and this is what counts. Think positive! When you stop to think about it, there are probably a lot worse odds of surviving many of the every day aspects of life than there are with IgAN itself, and yet, we don't think twice about getting in the car and driving on a 2-lane highway to the cottage, for example. As I said in another post, it's not always easy to do, but the only thing we CAN do is to put in our favour those odds that we can control to some extent, like blood pressure, diet, exercise, etc. Pierre Re: Support > Nice doctor. They forget they are talking about human lives sometimes I think. > > For me, putting the disease in context is what I have a hard time with. If 20-30% of the people have to be transplanted, what does that mean for us? We don't know. Planning a family, our lives has been difficult because one doesn't want to be foolish and assume nothing will ever happen and you also don't want to be overly cautious. I think when we heard 20-30% we thought for sure we were going to be in the majority because my husband has always been very health conscious. Now we are in our 30s, he's turning 39 this year and we have seen changes in him that make us realize he doesn't have total control over this thing. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2001 Report Share Posted April 9, 2001 LOL! No. No days off. It's just like smoking, if you feel depressed one morning, then it will be two mornings, three mornings, and before you know it, you're hooked on it again ; ) Pierre RE: Support > That's it! I'm on the next plane out to Canada and Pierre you're my new > Neph, Counsellor, Pastor, Life Strategist etc LOL!!! > > Seriously though very well put across, and wonderfully true. I echo the > think positive, but hope we are allowed the occasional 'off-day' LOL. ((snipped))> > > Quote Link to comment Share on other sites More sharing options...
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