Guest guest Posted September 26, 2000 Report Share Posted September 26, 2000 Well he said it again later....was proliferative diabetic retinopathy...dont now about MiniMed insulin infusion pump...Nel ----Original Message Follows---- To: nmtcegroups Subject: (unknown) Date: Wed, 27 Sep 2000 00:24:19 MST Guess you all are in bed....but hey I need some input here...Patient has diabetes.....s/l MiniMed insulin infusion pump???? another one...same patient.....status post...s/l aporfit of diabetic retinopathy??? any ideas...thanks Nel _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 Hi Nel, Yes, it's MiniMed insulin infusion pump. If you're ever in a hurry and can't wait for an answer on the list or just don't want to post, whatever, try google.com. That's where I found the MiniMed. It's a search engine that brings an unlimited amount of info. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 27, 2000 Report Share Posted September 27, 2000 thanks Patty ----Original Message Follows---- From: Moms78@... To: arizonanel@..., nmtcegroups Subject: Re: (unknown) Date: Wed, 27 Sep 2000 08:57:37 EDT Hi Nel, Yes, it's MiniMed insulin infusion pump. If you're ever in a hurry and can't wait for an answer on the list or just don't want to post, whatever, try google.com. That's where I found the MiniMed. It's a search engine that brings an unlimited amount of info. Patty _________________________________________________________________________ Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. Share information about yourself, create your own public profile at http://profiles.msn.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2001 Report Share Posted March 10, 2001 Hi Cheri. I've had my eyes lasered to correct vision and I use Renew Tears without preservative and it works great. It's what was suggested for dry eyes which everyone gets when they have their eyes lasered. Perhaps you could call a laser center in your area and ask what they suggest. I have one lid that is a little droopy but not a problem yet. I don't have any EDS related problems with my eyes though. Hope this helps. Gayle --- Gayle --- morganga@... --- EarthLink: It's your Internet. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 Is there a treatment for this or there's no escape from reaching ESRD and therefore transplant? Having "been there, done that, gotten the T-shirt," the ESRD part isn't the frightening part unless you haven't gotten to that stage yet. I've been transplanted for 22 years and I know that the transplant drugs have been used against many forms of autoimmune disorders (IgAN included) for many years. I was told by my transplant surgeon that they'd use the same drugs pre-transplant for any autoimmune disorder (IgAN included) at the time of my transplant, when all they had available for transplant patients was Imuran, prednisone and ALG shots. So your fiance's doctor was doing the right thing by putting him on CellCept, as it would be used post-transplant. Robin s http://www.themestream.com/authors/73826.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 Hi Nina, sorry to hear about your fiancé. I wish I could give you some good news, but we IgAN patients are all different. We are different ages, have different symptoms, are on different treatment plans and have different prospects. Some of us have had transplants, are waiting for transplants or are obsessing about the possibility of having a transplant, while others are more or less the same now as they were a decade or 2 ago. There probably isn't much that we are all the same about except that we hate our doctors! I have high protein and a little blood in my urine, my blood pressure is low, I have moderately high cholesterol and almost permanently have flu like symptoms. My nephrologist thought I would be on the transplant list in a decade but I have shown a small improvement in my condition. I try take each day as it comes and not stress too much as it doesn't help my condition. My suggestion would be to talk to your fiancé and share what you think and feel. He may not consider that there is anything to be concerned about (which will help you) or it might help him to know that you are there to support him. _________________________________________________________________________ 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 March 30, 2001 Report Share Posted March 30, 2001 Do they have him on fish oil and an Ace inhibitor? Try this website for information: www.igan.org It might also help with some of your questions. > (unknown) > > > Hello everyone, my name is Nina. I don't have IgA Nephropathy but my > fiancé does. He's 25 years old. It started about 5-6 years ago, > very > mild and then disappeared; so he stopped taking the medication > because his doctor didn't tell him that he shouldn't stop it. It has > been about 6 months IgAN is back again and this time very strong. The > doctor gave him Cellcept along with Zoccor and other medication, but > there's no improvement whatsoever in 4 months. > Now he's taking much stronger medication, I still don't know what > they are. I am very worried about him, I think he's getting close to > ESRD. He's not in bed or anything, just has high protein and > sometimes blood in his urine, high blood pressure, high cholesterol, > and gets throat infection very often which worsens the case. He has > to go back to USA to continue his treatment. I am so scared this > might go on forever. > Is there a treatment for this or there's no escape from reaching ESRD > and therefore transplant? If yes, what are the treatments for IgAN? > Is there a chance he will get better? > Any opinion is highly appreciated. > Thank you > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 - Have the Dr.'s told you why you have the constant flu like symptoms? Is it due to the fluid retention or is there something else involved. I frequently feel as tho I have a low grade fever and joint and body aches. I just blamed my trainer for exercising me to hard. -- In iga-nephropathy@y..., " andria Blaelock " <ablaelock@h...> wrote: > Hi Nina, sorry to hear about your fiancé. I wish I could give you some good > news, but we IgAN patients are all different. We are different ages, have > different symptoms, are on different treatment plans and have different > prospects. Some of us have had transplants, are waiting for transplants or > are obsessing about the possibility of having a transplant, while others are > more or less the same now as they were a decade or 2 ago. There probably > isn't much that we are all the same about except that we hate our doctors! > > I have high protein and a little blood in my urine, my blood pressure is > low, I have moderately high cholesterol and almost permanently have flu like > symptoms. My nephrologist thought I would be on the transplant list in a > decade but I have shown a small improvement in my condition. I try take > each day as it comes and not stress too much as it doesn't help my > condition. My suggestion would be to talk to your fiancé and share what you > think and feel. He may not consider that there is anything to be concerned > about (which will help you) or it might help him to know that you are there > to support him. > > ______________________________________________________________________ ___ > 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 March 30, 2001 Report Share Posted March 30, 2001 Hi Nina I like am very sorry to hear about your fiancé. As you now know there is no permanent cure for this condition. Each of us in this group has a different story to tell, and those that have been around the disease for many years, have helped us newer members. I have had my diagnosis for 2 years, and I have to say that there has been improvement within this time span, mainly due to my attitude, and the help of this group. My advice would be to read the back messages within this forum, not all of them, just the ones that may ring true with your circumstances. In particular look for information from Pierre, the founder of this group. It may not be want you want to hear at this precise moment, but it tells you in honest detail his experience, and he has some very useful links to varying sites in the bookmark suggestion. It is left to each individual at the end of the day what you want to take away with you. Try not to worry yourself too much, easier said than done I know, but be proactive rather than reactive in your approach to it. IGAN is a damn pain in the bum to have to deal with, but with the right information, good Nephrologist, and family support, your fiancé does have a future, although it may not seem like it at the moment. Good luck ok. (unknown) Hello everyone, my name is Nina. I don't have IgA Nephropathy but my fiancé does. He's 25 years old. It started about 5-6 years ago, very mild and then disappeared; so he stopped taking the medication because his doctor didn't tell him that he shouldn't stop it. It has been about 6 months IgAN is back again and this time very strong. The doctor gave him Cellcept along with Zoccor and other medication, but there's no improvement whatsoever in 4 months. Now he's taking much stronger medication, I still don't know what they are. I am very worried about him, I think he's getting close to ESRD. He's not in bed or anything, just has high protein and sometimes blood in his urine, high blood pressure, high cholesterol, and gets throat infection very often which worsens the case. He has to go back to USA to continue his treatment. I am so scared this might go on forever. Is there a treatment for this or there's no escape from reaching ESRD and therefore transplant? If yes, what are the treatments for IgAN? Is there a chance he will get better? Any opinion is highly appreciated. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2001 Report Share Posted March 30, 2001 Nope the doctors don't think it is important or related! I get sore throats, fevers, runny noses and those joint and back aches. Initially I put it down to giving up smoking, but 10 months later you'd think I would be finished. I keep thinking that when I catch up on my sleep and lose a bit of stress I'll get better, nd at least I haven't had any sever outbreaks for a couple of months. From: KJHUMMER@... Reply-To: iga-nephropathy To: iga-nephropathy Subject: Re: (unknown) Date: Fri, 30 Mar 2001 14:31:19 -0000 - Have the Dr.'s told you why you have the constant flu like symptoms? Is it due to the fluid retention or is there something else involved. I frequently feel as tho I have a low grade fever and joint and body aches. I just blamed my trainer for exercising me to hard. -- In iga-nephropathy@y..., " andria Blaelock " <ablaelock@h...> wrote: > Hi Nina, sorry to hear about your fiancé. I wish I could give you some good > news, but we IgAN patients are all different. We are different ages, have > different symptoms, are on different treatment plans and have different > prospects. Some of us have had transplants, are waiting for transplants or > are obsessing about the possibility of having a transplant, while others are > more or less the same now as they were a decade or 2 ago. There probably > isn't much that we are all the same about except that we hate our doctors! > > I have high protein and a little blood in my urine, my blood pressure is > low, I have moderately high cholesterol and almost permanently have flu like > symptoms. My nephrologist thought I would be on the transplant list in a > decade but I have shown a small improvement in my condition. I try take > each day as it comes and not stress too much as it doesn't help my > condition. My suggestion would be to talk to your fiancé and share what you > think and feel. He may not consider that there is anything to be concerned > about (which will help you) or it might help him to know that you are there > to support him. > > ______________________________________________________________________ ___ > Get Your Private, Free E-mail from MSN Hotmail at http://www.hotmail.com. _________________________________________________________________________ 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 March 30, 2001 Report Share Posted March 30, 2001 Hi Nina. Sorry to hear about your fiance, but glad to welcome you to the group. We have some great members here -- many of whom are far better at providing emotional support than I am. I can't add anymore than what and and Byron have already. There is a lot of good stuff in the back messages and in the Files, which you can browse through, and if you have any specific question, I or someone else will be more than happy to provide any answers we can. The only thing I know I cannot do is to tell you that there is a definitive cure. If someone has severe enough IgAN to progress to end-stage, it seems that the best they can do is delay it for a while. On the other hand, it might not progress. It's just too variable to predict. There are " treatments " , which vary on the severity or the rapidity of the disease, and there are remedies to treat some of the specific symptoms, like the hypertension -- and if you help the hypertension, you help the IgAN. One good file to read in the Files section of the group is the one on IgAN Recent Developments. You can also read the stories in the Personal Stories folder (Files area). Best wishes, Pierre (unknown) Hello everyone, my name is Nina. I don't have IgA Nephropathy but my fiancé does. He's 25 years old. It started about 5-6 years ago, very mild and then disappeared; so he stopped taking the medication because his doctor didn't tell him that he shouldn't stop it. It has been about 6 months IgAN is back again and this time very strong. The doctor gave him Cellcept along with Zoccor and other medication, but there's no improvement whatsoever in 4 months. Now he's taking much stronger medication, I still don't know what they are. I am very worried about him, I think he's getting close to ESRD. He's not in bed or anything, just has high protein and sometimes blood in his urine, high blood pressure, high cholesterol, and gets throat infection very often which worsens the case. He has to go back to USA to continue his treatment. I am so scared this might go on forever. Is there a treatment for this or there's no escape from reaching ESRD and therefore transplant? If yes, what are the treatments for IgAN? Is there a chance he will get better? Any opinion is highly appreciated. Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2001 Report Share Posted April 10, 2001 Thanks for the info and the kind words. I guess I can look forward to another 24 collection. > RE: (unknown) > > > > > > I think education good too. Sure it might wig you out (love that > > expression) but I think that not knowing is worse. Also when it > > comes to a > > treatment plan, you want to be up on how others are getting on > with their > > medications to help you make your decsions, and what other > > options you might > > have that your medical team might not know about yet. > > > > > _________________________________________________________________________ > > 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 11, 2001 Report Share Posted April 11, 2001 Byron, even though I have " moderate " IgAN I was only diagnosed a few months ago and am still puzzling through a lot of information. I would think that a sore throat would affect my protein levels because how I feel affects what I chose to eat and drink. (And then there's all that IgA being active). I made some fairly radical changes to my diet (and didn't take my medication) and my protein came down a bit, but I decided I'd rather take the pills than have a miserable existance! I am doing another 24 hour collection at the end of the month and seeing the neph in early May and I have decided to tell him that he completely freaked me out over the last couple of months but that I am now prepared to do what he thinks is best even the steroids if there is no improvement in the protein. Having said that I am going back to Australia in a few months and what this neph says won't really matter anyway! _________________________________________________________________________ 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 11, 2001 Report Share Posted April 11, 2001 Byron, I know, I hate 24 hour collections too! Not that I really mind taking a day off work to collect every little drop, but it seems such a bizarre thing to do! I look forward to stabilising! _________________________________________________________________________ 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 August 31, 2001 Report Share Posted August 31, 2001 Sorry if I offend anyone with this. At the most, you have 4 choices when you have kidney failure: 1) Living donor transplant (related, friend, good samaritan, kidney swap, kidney exchange), 2) Cadaver donor, 3) Dialysis, which is almost inevitably a death sentence sooner or later, or 4) refuse treatment and die a slow, pitiful death. Marty Re: About Me / PD<BR>> <BR>> <BR>> & gt;<BR>> & gt; One of the thoughts I've had reading all this is> that it's admirable to<BR>> try<BR>> & gt; to continue the plans one has in life, and I> wouldn't want to discourage<BR>> & gt; anyone from doing so, but on the other hand, I> think life rarely turns out<BR>> & gt; the way you plan it and sometimes that requires> making sacrifices. The way<BR>> & gt; I've coped with that is to recognize that the> sacrifices I've made in my<BR>> & gt; life are for the greater good of my family and> that elevates the meaning<BR>> of<BR>> & gt; the sacrifice somewhat.<BR>> & gt;<BR>> & gt; I don't live my life worrying about what might> happen, but I think I've<BR>> & gt; tried to prepare for various scenarios should> they arise. You can't cover<BR>> & gt; all the bases, but at least we've tried to plan> well enough that the<BR>> & gt; children will be taken care of.<BR>> & gt;<BR>> & gt; In so many ways we are fortunate to be living in> a time when mere survival<BR>> & gt; isn't an issue and we have so many choices about> where we can live and<BR>> what<BR>> & gt; we do and even how many children we have. I think> the main thing is to<BR>> & gt; focus on my gratitude for those things rather the> fact that I have given<BR>> up<BR>> & gt; (or just postponed) some of my dreams. You don't> always have a lot of<BR>> & gt; control over what life gives you, but you do have> control over how you<BR>> & gt; respond to it.<BR>> & gt;<BR>> & gt;<BR>> <BR>> <BR>> </tt>> > <br>> > <!-- |**|begin egp html banner|**| -->> > <table border=0 cellspacing=0 cellpadding=2>> <tr bgcolor=#FFFFCC>> <td align=center><font size="-1"> color=#003399><b> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 8, 2001 Report Share Posted September 8, 2001 Hi Kat Welcome to the group. First of all 5 years is a long time for your husband to go unchecked with a diagnosis of IGAN. Was he diagnosed via a biopsy? Not that makes any difference, I concur with a lot of changes can happen with this condition so my advice would be get him checked by someone as soon as possible. Having his BP checked is imperative in the control of this condition, so at the very least I would start with getting this checked out. The Neph that saw you 5 years ago, is right in some respects in that this disease is supposed to be slow in progression, but that is by no means written in stone. In some people it can advance more rapidly, hence my concern at your husband at least getting the basic checks for now. He may be very well and you find that his stats are the same as 5 yrs ago, and I hope that this is the case for you both. Good luck and keep us posted if you wish. Best wishes -----Original Message----- From: kathy connel Sent: 09 September 2001 02:49 To: iga-nephropathy Subject: (unknown) Hi. I am new to the group. My husband was diagnosed with IgaN 5 years ago. The neph. that diagnosed him told him to take fish oil, to stop dipping skoal and that is was a slow progressing disease. I have found most of what I know about the disease on the internet. I have desired to talk with others that have it also, there is still much that puzzles us about the disease. He does not have a neph. for the one that diagnosed him is about 5 hrs away and did not tell us to do any follow up with him or any other doctor. My husband was 26 years old at the time. I don't know his creatine level or anything else. What I do know is that both of his kidneys had been blocked from blood clots and needed stints before he was diagnosed. We even had a urologist try to tell us that nothing was wrong with him. At that time, my husband was in the hospital passing blood clots so big and many that he needed the stint and in so much pain that they had given him valium (sp?) mixed with another pain drug and it still did not relieve him. Of course I asked to be referred to another doctor. I look forward to getting to know you all and learning more from you all and maybe helping someone else. Kat __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Skoal dipping? Is that another way of saying "chewin' tobacci?" (unknown) -Dear Kat,I see that your husband was a Skoal dipper, so I am guessing you are from the USA? Where abouts are you? He probably needs to find a neph., and have a good check-up, as alot of things could happen in 5 years (alot happen to me in 2 years!) I think most all of the others folks here would agree....he needs to go for a check-up! I am learning so much about my disease, and enjoy reading all the stuff. I don't often respond to the messages, but do enjoy learning.-- In iga-nephropathy@y..., kathy connel <angel_1971_1999@y...> wrote:> Hi. I am new to the group. My husband was diagnosed> with IgaN 5 years ago. The neph. that diagnosed him> told him to take fish oil, to stop dipping skoal and> that is was a slow progressing disease. I have found> most of what I know about the disease on the internet.> I have desired to talk with others that have it also,> there is still much that puzzles us about the disease.> He does not have a neph. for the one that diagnosed> him is about 5 hrs away and did not tell us to do any> follow up with him or any other doctor. My husband> was 26 years old at the time. I don't know his> creatine level or anything else. What I do know is> that both of his kidneys had been blocked from blood> clots and needed stints before he was diagnosed. We > even had a urologist try to tell us that nothing was> wrong with him. At that time, my husband was in the> hospital passing blood clots so big and many that he> needed the stint and in so much pain that they had> given him valium (sp?) mixed with another pain drug> and it still did not relieve him. Of course I asked> to be referred to another doctor.> > I look forward to getting to know you all and learning> more from you all and maybe helping someone else.> > Kat> > __________________________________________________> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Welcome to the group Kat. It's hard to comment on your husband's condition without knowing any numbers though. Did he have a kidney biopsy? For many people, probably the most, IgAN is very mild, and very slowly-progressive in the first decade or so. Maybe in his case, it's so mild that the nephrologist didn't feel the need to follow him. That has happened to me in the past. Sometimes patients get referred back for the GP to monitor, and referred back again to a nephrologist if and when things get worse. The stents is another problem altogether though. Pierre (unknown) > Hi. I am new to the group. My husband was diagnosed > with IgaN 5 years ago. The neph. that diagnosed him > told him to take fish oil, to stop dipping skoal and > that is was a slow progressing disease. I have found > most of what I know about the disease on the internet. > I have desired to talk with others that have it also, > there is still much that puzzles us about the disease. > He does not have a neph. for the one that diagnosed > him is about 5 hrs away and did not tell us to do any > follow up with him or any other doctor. My husband > was 26 years old at the time. I don't know his > creatine level or anything else. What I do know is > that both of his kidneys had been blocked from blood > clots and needed stints before he was diagnosed. We > even had a urologist try to tell us that nothing was > wrong with him. At that time, my husband was in the > hospital passing blood clots so big and many that he > needed the stint and in so much pain that they had > given him valium (sp?) mixed with another pain drug > and it still did not relieve him. Of course I asked > to be referred to another doctor. > > I look forward to getting to know you all and learning > more from you all and maybe helping someone else. > > Kat > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 By the way, forgot to mention that it would be wise for your husband to make an appointment with his family doctor at this point. You never know about how things like proteinuria and especially blood pressure might have changed since he was last looked at. Pierre Re: (unknown) > Welcome to the group Kat. It's hard to comment on your husband's condition > without knowing any numbers though. Did he have a kidney biopsy? > > For many people, probably the most, IgAN is very mild, and very > slowly-progressive in the first decade or so. Maybe in his case, it's so > mild that the nephrologist didn't feel the need to follow him. That has > happened to me in the past. Sometimes patients get referred back for the GP > to monitor, and referred back again to a nephrologist if and when things get > worse. The stents is another problem altogether though. > > Pierre > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Hello and Welcome, I'm a spouse too, I can relate to your frustration. What is " dipping skoal " ? No matter what, sounds like your husband needs a nephrologist. (The first indication that J. had this disease was a big, dramatic incident as well. Nevertheless, it was almost 10 years before he reached end-stage renal failure. So they're right to tell you it's a slow progressing disease, even if your husband has a severe case that could still be true.) s. __________________________________________________<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 Kat, it's imperative that your husband keep his blood pressure as low as low as he can within the normal range. Even 140/90 for a kidney patient is high. > Welcome to the group Kat. It's hard to comment on your husband's condition > without knowing any numbers though. Did he have a kidney biopsy? > > For many people, probably the most, IgAN is very mild, and very > slowly-progressive in the first decade or so. Maybe in his case, it's so > mild that the nephrologist didn't feel the need to follow him. That has > happened to me in the past. Sometimes patients get referred back for the GP > to monitor, and referred back again to a nephrologist if and when things get > worse. The stents is another problem altogether though. > > Pierre > > > > (unknown) > > > > Hi. I am new to the group. My husband was diagnosed > > with IgaN 5 years ago. The neph. that diagnosed him > > told him to take fish oil, to stop dipping skoal and > > that is was a slow progressing disease. I have found > > most of what I know about the disease on the internet. > > I have desired to talk with others that have it also, > > there is still much that puzzles us about the disease. > > He does not have a neph. for the one that diagnosed > > him is about 5 hrs away and did not tell us to do any > > follow up with him or any other doctor. My husband > > was 26 years old at the time. I don't know his > > creatine level or anything else. What I do know is > > that both of his kidneys had been blocked from blood > > clots and needed stints before he was diagnosed. We > > even had a urologist try to tell us that nothing was > > wrong with him. At that time, my husband was in the > > hospital passing blood clots so big and many that he > > needed the stint and in so much pain that they had > > given him valium (sp?) mixed with another pain drug > > and it still did not relieve him. Of course I asked > > to be referred to another doctor. > > > > I look forward to getting to know you all and learning > > more from you all and maybe helping someone else. > > > > Kat > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 I don't think hematuria and proteinuria necessarily go together. That is, IgAN causes both to some degree in just about everyone, but what I mean is that a flare up of visible hematuria doesn't necessarily mean more proteinuria. Sometimes it can though. There really isn't a yes or no answer to that. The fact that he doesn't have high blood pressure is an encouraging sign. There is conflicting evidence about this, but generally-speaking, it's thought that people who actually do have periods of visible hematuria do better in the long run than those like me who don't. As for pain, this remains a puzzle for everyone. There is nothing in the kidneys themselves to feel pain even if something is wrong in there. Yet, people with IgAN and other kidney diseases do feel flank pain. The thinking is that it may come from the muscle tissue that surrounds the kidneys. Pierre (unknown) > Hi all. > > My husband was diagnosed via biopsy. " Dipping skoal " > is tobacco. He has quit almost 4 months now. He has > visible hematuria; I am guessing that when that is > visible that it is a given that there is protein also > in the urine. Usually with the blood comes flank pain > too. I think his blood pressure is okay though. We > check it ever so often. We notice his symptoms seem > worse in the summer. I assume because of dehydration. > We also notice that if he does alot of bending that > will cause flare ups. I am curious if that is true > with anyone else? > > Thanks all and have a good day. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 --- kathy connel wrote: <HR> <html><body> <tt> Hi all.<BR> <BR> My husband was diagnosed via biopsy. & nbsp; & quot;Dipping skoal & quot;<BR> is tobacco. & nbsp; so " dipping skoal " is smoking? I don't think I've ever heard that term before. He has quit almost 4 months now. & nbsp; He has<BR> visible hematuria; I am guessing that when that is<BR> visible that it is a given that there is protein also<BR> in the urine. & nbsp; Usually with the blood comes flank pain<BR> too. & nbsp; I think his blood pressure is okay though. & nbsp; We<BR> check it ever so often. & nbsp; We notice his symptoms seem<BR> worse in the summer. & nbsp; I assume because of dehydration.<BR> We also notice that if he does alot of bending that<BR> will cause flare ups. & nbsp; I am curious if that is true<BR> with anyone else?<BR> <BR> Thanks all and have a good day.<BR> <BR> __________________________________________________<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 --- kathy connel wrote: <HR> By the way, from what I've gathered, smoking is the worst thing your husband could be doing. I think it's possible that this doctor may look like he's responding in a less than appropriate manner but before we all jump on the guy maybe a second opinion is in order. He's right about tobacco and as I've already said, J. passed a lot of blood very early on. With this disease the more dramatic looking symptoms are not always the most serious. It is possible that the IgAN is still a secondary problem. In any event, it is always wise to stop smoking and keep the blood pressure low. <html><body> <tt> Hi all.<BR> <BR> My husband was diagnosed via biopsy. & nbsp; & quot;Dipping skoal & quot;<BR> is tobacco. & nbsp; He has quit almost 4 months now. & nbsp; He has<BR> visible hematuria; I am guessing that when that is<BR> visible that it is a given that there is protein also<BR> in the urine. & nbsp; Usually with the blood comes flank pain<BR> too. & nbsp; I think his blood pressure is okay though. & nbsp; We<BR> check it ever so often. & nbsp; We notice his symptoms seem<BR> worse in the summer. & nbsp; I assume because of dehydration.<BR> We also notice that if he does alot of bending that<BR> will cause flare ups. & nbsp; I am curious if that is true<BR> with anyone else?<BR> <BR> Thanks all and have a good day.<BR> <BR> __________________________________________________<BR> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 9, 2001 Report Share Posted September 9, 2001 No Marty, dipping is different than chewing. Chewing is just as it says, the tobacco is chewed on to get the juice and flavor out of it. " Dippin' " is tobacco that is ground into a fine substance, and is kept between the check and gum, or between the gum and lip. You suck on it to get the juice and flavor. Marty, I guess you arn't from the states? Or at least not from the South or West?! > > Hi. I am new to the group. My husband was diagnosed > > with IgaN 5 years ago. The neph. that diagnosed him > > told him to take fish oil, to stop dipping skoal and > > that is was a slow progressing disease. I have found > > most of what I know about the disease on the internet. > > I have desired to talk with others that have it also, > > there is still much that puzzles us about the disease. > > He does not have a neph. for the one that diagnosed > > him is about 5 hrs away and did not tell us to do any > > follow up with him or any other doctor. My husband > > was 26 years old at the time. I don't know his > > creatine level or anything else. What I do know is > > that both of his kidneys had been blocked from blood > > clots and needed stints before he was diagnosed. We > > even had a urologist try to tell us that nothing was > > wrong with him. At that time, my husband was in the > > hospital passing blood clots so big and many that he > > needed the stint and in so much pain that they had > > given him valium (sp?) mixed with another pain drug > > and it still did not relieve him. Of course I asked > > to be referred to another doctor. > > > > I look forward to getting to know you all and learning > > more from you all and maybe helping someone else. > > > > Kat > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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