Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karissa, I just wanted to say Hi and welcome to the group. I'm sorry to hear your function dropped so quickly and that you are having difficulty with the dialysis. I'm not at the dialysis point yet so I'm unable to answer any of your questions. I am happy you found this group and I'm sure others here will be able to provide you with some ideas to help cope. Welcome again, Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karissa, I just wanted to say Hi and welcome to the group. I'm sorry to hear your function dropped so quickly and that you are having difficulty with the dialysis. I'm not at the dialysis point yet so I'm unable to answer any of your questions. I am happy you found this group and I'm sure others here will be able to provide you with some ideas to help cope. Welcome again, Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karissa, I just wanted to say Hi and welcome to the group. I'm sorry to hear your function dropped so quickly and that you are having difficulty with the dialysis. I'm not at the dialysis point yet so I'm unable to answer any of your questions. I am happy you found this group and I'm sure others here will be able to provide you with some ideas to help cope. Welcome again, Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karissa. I'm not an expert on dialysis, as I said, just a patient... But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry weight, depending on how much salt I ate (it's the sodium that makes you drink and retain more water). My BP is sometimes as high as 155/90 when I get there, but often it's more in the 140/80-something range. During dialysis, it flirts with 110/70, sometimes dipping a little below that, but it seems to be most happy at around 120/70-ish. At the end, after I'm off but still sitting, it's usually in the area of 120/80, and when I stand up, it often goes up to around 140/90, sometimes a bit more (after I'm disconnected, the nurse takes a sitting and then a standing BP, every time). Now, if I had numbers like the ones you just gave, down only to 150-160/80-85 during treatment, I'm pretty sure my doctor would be thinking my dry weight should be lower (ie. they should be taking off more fluid during the treatment). Most blood pressure problems on hemodialysis are related to dry weight. When you start dialysis the first time, the target dry weight is part of the prescription a nephrologist has written for the nurses and/or techs to follow. This " dry weight " is not arrived at as scientifically as it seems. It's really just a best guess based on body weight and a few other factors, and it can be wrong. It almost invariably needs to be adjusted up or down afterwards, and also if you happen to gain or lose real weight (as opposed to just fluid weight). You really shouldn't be getting things like headaches or cramps all the time. Occasionally, sure, but not all the time. If you do, there is either something about your dialysis prescription that isn't optimal for you, or there's something wrong with your diet. Sometimes, it seems to take a bit of constant complaining to get the nephrologist to look at changing something. It shouldn't be that way, but that's how it is sometimes. When I first started last year, I had a persistent problem with tingling with about an hour left in the treatment and afterwards. At first, they didn't know what that was, and they didn't seem to care very much. It was a month and a half before a rotation of nephrologists happened, and the new one figured it out right away. The normal amount of bicarbonate in the dialysate was too much for me, even though it's fine for 99.9% of patients. The next treatment, it was lowered from 36 to 32, and I haven't had the problem since. Another problem I had was with itching. It wasn't horrible itching, but it was kind of uncomfortable. I mentioned it a few times, and they said that if I was allergic to the actual dialyzer, I would have more than just itching. But eventually, another nephrologist said, " Oh, well, you might be allergic to the dialyzer " . For the next treatment, he changed my prescription to a special dialyzer that is not sterilised with a solvent. Problem solved. So it just goes to show that you have to be persistent sometimes, and patient too. I know what I said before, and it's still valid, but looking at those numbers, it sure seems like maybe they aren't taking enough fluid off you. Now, maybe there's a reason for that I don't know about. Pierre Re: New to the group > Hi Pierre and all, > > Thank you for your suggestions... > > I will try to talk to my doctors about the sympathetic nervous system and the meds that you mentioned. > > At this point, I am really worried about the other affects of bp (such as heart attack, stroke.etc). Even during the treatment, the lowest the bp goes down to is in the range of 150-160/80-85. And on the days when I dont have dialysis, it stays around this range or a little higher (sometimes around 170/110). But, it's really surprising how it shoots up that high after dialysis. > > I will keep you all posted. > > Thanks again, > Karrissa > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karissa. I'm not an expert on dialysis, as I said, just a patient... But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry weight, depending on how much salt I ate (it's the sodium that makes you drink and retain more water). My BP is sometimes as high as 155/90 when I get there, but often it's more in the 140/80-something range. During dialysis, it flirts with 110/70, sometimes dipping a little below that, but it seems to be most happy at around 120/70-ish. At the end, after I'm off but still sitting, it's usually in the area of 120/80, and when I stand up, it often goes up to around 140/90, sometimes a bit more (after I'm disconnected, the nurse takes a sitting and then a standing BP, every time). Now, if I had numbers like the ones you just gave, down only to 150-160/80-85 during treatment, I'm pretty sure my doctor would be thinking my dry weight should be lower (ie. they should be taking off more fluid during the treatment). Most blood pressure problems on hemodialysis are related to dry weight. When you start dialysis the first time, the target dry weight is part of the prescription a nephrologist has written for the nurses and/or techs to follow. This " dry weight " is not arrived at as scientifically as it seems. It's really just a best guess based on body weight and a few other factors, and it can be wrong. It almost invariably needs to be adjusted up or down afterwards, and also if you happen to gain or lose real weight (as opposed to just fluid weight). You really shouldn't be getting things like headaches or cramps all the time. Occasionally, sure, but not all the time. If you do, there is either something about your dialysis prescription that isn't optimal for you, or there's something wrong with your diet. Sometimes, it seems to take a bit of constant complaining to get the nephrologist to look at changing something. It shouldn't be that way, but that's how it is sometimes. When I first started last year, I had a persistent problem with tingling with about an hour left in the treatment and afterwards. At first, they didn't know what that was, and they didn't seem to care very much. It was a month and a half before a rotation of nephrologists happened, and the new one figured it out right away. The normal amount of bicarbonate in the dialysate was too much for me, even though it's fine for 99.9% of patients. The next treatment, it was lowered from 36 to 32, and I haven't had the problem since. Another problem I had was with itching. It wasn't horrible itching, but it was kind of uncomfortable. I mentioned it a few times, and they said that if I was allergic to the actual dialyzer, I would have more than just itching. But eventually, another nephrologist said, " Oh, well, you might be allergic to the dialyzer " . For the next treatment, he changed my prescription to a special dialyzer that is not sterilised with a solvent. Problem solved. So it just goes to show that you have to be persistent sometimes, and patient too. I know what I said before, and it's still valid, but looking at those numbers, it sure seems like maybe they aren't taking enough fluid off you. Now, maybe there's a reason for that I don't know about. Pierre Re: New to the group > Hi Pierre and all, > > Thank you for your suggestions... > > I will try to talk to my doctors about the sympathetic nervous system and the meds that you mentioned. > > At this point, I am really worried about the other affects of bp (such as heart attack, stroke.etc). Even during the treatment, the lowest the bp goes down to is in the range of 150-160/80-85. And on the days when I dont have dialysis, it stays around this range or a little higher (sometimes around 170/110). But, it's really surprising how it shoots up that high after dialysis. > > I will keep you all posted. > > Thanks again, > Karrissa > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2004 Report Share Posted April 28, 2004 Hi Karissa. I'm not an expert on dialysis, as I said, just a patient... But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry weight, depending on how much salt I ate (it's the sodium that makes you drink and retain more water). My BP is sometimes as high as 155/90 when I get there, but often it's more in the 140/80-something range. During dialysis, it flirts with 110/70, sometimes dipping a little below that, but it seems to be most happy at around 120/70-ish. At the end, after I'm off but still sitting, it's usually in the area of 120/80, and when I stand up, it often goes up to around 140/90, sometimes a bit more (after I'm disconnected, the nurse takes a sitting and then a standing BP, every time). Now, if I had numbers like the ones you just gave, down only to 150-160/80-85 during treatment, I'm pretty sure my doctor would be thinking my dry weight should be lower (ie. they should be taking off more fluid during the treatment). Most blood pressure problems on hemodialysis are related to dry weight. When you start dialysis the first time, the target dry weight is part of the prescription a nephrologist has written for the nurses and/or techs to follow. This " dry weight " is not arrived at as scientifically as it seems. It's really just a best guess based on body weight and a few other factors, and it can be wrong. It almost invariably needs to be adjusted up or down afterwards, and also if you happen to gain or lose real weight (as opposed to just fluid weight). You really shouldn't be getting things like headaches or cramps all the time. Occasionally, sure, but not all the time. If you do, there is either something about your dialysis prescription that isn't optimal for you, or there's something wrong with your diet. Sometimes, it seems to take a bit of constant complaining to get the nephrologist to look at changing something. It shouldn't be that way, but that's how it is sometimes. When I first started last year, I had a persistent problem with tingling with about an hour left in the treatment and afterwards. At first, they didn't know what that was, and they didn't seem to care very much. It was a month and a half before a rotation of nephrologists happened, and the new one figured it out right away. The normal amount of bicarbonate in the dialysate was too much for me, even though it's fine for 99.9% of patients. The next treatment, it was lowered from 36 to 32, and I haven't had the problem since. Another problem I had was with itching. It wasn't horrible itching, but it was kind of uncomfortable. I mentioned it a few times, and they said that if I was allergic to the actual dialyzer, I would have more than just itching. But eventually, another nephrologist said, " Oh, well, you might be allergic to the dialyzer " . For the next treatment, he changed my prescription to a special dialyzer that is not sterilised with a solvent. Problem solved. So it just goes to show that you have to be persistent sometimes, and patient too. I know what I said before, and it's still valid, but looking at those numbers, it sure seems like maybe they aren't taking enough fluid off you. Now, maybe there's a reason for that I don't know about. Pierre Re: New to the group > Hi Pierre and all, > > Thank you for your suggestions... > > I will try to talk to my doctors about the sympathetic nervous system and the meds that you mentioned. > > At this point, I am really worried about the other affects of bp (such as heart attack, stroke.etc). Even during the treatment, the lowest the bp goes down to is in the range of 150-160/80-85. And on the days when I dont have dialysis, it stays around this range or a little higher (sometimes around 170/110). But, it's really surprising how it shoots up that high after dialysis. > > I will keep you all posted. > > Thanks again, > Karrissa > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Pierre, that is such a keeper of a post. Thank you for taking the time to answer Karissa. I've squirreled this one away. Cy Re: New to the group > > > > Hi Pierre and all, > > > > Thank you for your suggestions... > > > > I will try to talk to my doctors about the sympathetic nervous system and > the meds that you mentioned. > > > > At this point, I am really worried about the other affects of bp (such as > heart attack, stroke.etc). Even during the treatment, the lowest the bp goes > down to is in the range of 150-160/80-85. And on the days when I dont have > dialysis, it stays around this range or a little higher (sometimes around > 170/110). But, it's really surprising how it shoots up that high after > dialysis. > > > > I will keep you all posted. > > > > Thanks again, > > Karrissa > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Pierre, that is such a keeper of a post. Thank you for taking the time to answer Karissa. I've squirreled this one away. Cy Re: New to the group > > > > Hi Pierre and all, > > > > Thank you for your suggestions... > > > > I will try to talk to my doctors about the sympathetic nervous system and > the meds that you mentioned. > > > > At this point, I am really worried about the other affects of bp (such as > heart attack, stroke.etc). Even during the treatment, the lowest the bp goes > down to is in the range of 150-160/80-85. And on the days when I dont have > dialysis, it stays around this range or a little higher (sometimes around > 170/110). But, it's really surprising how it shoots up that high after > dialysis. > > > > I will keep you all posted. > > > > Thanks again, > > Karrissa > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2004 Report Share Posted April 29, 2004 Pierre, that is such a keeper of a post. Thank you for taking the time to answer Karissa. I've squirreled this one away. Cy Re: New to the group > > > > Hi Pierre and all, > > > > Thank you for your suggestions... > > > > I will try to talk to my doctors about the sympathetic nervous system and > the meds that you mentioned. > > > > At this point, I am really worried about the other affects of bp (such as > heart attack, stroke.etc). Even during the treatment, the lowest the bp goes > down to is in the range of 150-160/80-85. And on the days when I dont have > dialysis, it stays around this range or a little higher (sometimes around > 170/110). But, it's really surprising how it shoots up that high after > dialysis. > > > > I will keep you all posted. > > > > Thanks again, > > Karrissa > > > > > > > > > To edit your settings for the group, go to our Yahoo Group > home page: > http://groups.yahoo.com/group/iga-nephropathy/ > > To unsubcribe via email, > iga-nephropathy-unsubscribe > Visit our companion website at www.igan.ca. The site is entirely supported by donations. If you would like to help, go to: > http://www.igan.ca/id62.htm > > Thank you > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Thanks Cy. I hope you never need to refer to it though. Pierre Re: New to the group > > > > Hi Karissa. > > > > I'm not an expert on dialysis, as I said, just a patient... > > > > But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry > > weight, depending on how much salt I ate (it's the sodium that makes you > > drink and retain more water). My BP is sometimes as high as 155/90 when I > > get there, but often it's more in the 140/80-something range. During > > dialysis, it flirts with 110/70, sometimes dipping a little below that, > but > > it seems to be most happy at around 120/70-ish. At the end, after I'm off > > but still sitting, it's usually in the area of 120/80, and when I stand > up, > > it often goes up to around 140/90, sometimes a bit more (after I'm > > disconnected, the nurse takes a sitting and then a standing BP, every > time). > > > > Now, if I had numbers like the ones you just gave, down only to > > 150-160/80-85 during treatment, I'm pretty sure my doctor would be > thinking > > my dry weight should be lower (ie. they should be taking off more fluid > > during the treatment). > > > > Most blood pressure problems on hemodialysis are related to dry weight. > When > > you start dialysis the first time, the target dry weight is part of the > > prescription a nephrologist has written for the nurses and/or techs to > > follow. This " dry weight " is not arrived at as scientifically as it seems. > > It's really just a best guess based on body weight and a few other > factors, > > and it can be wrong. It almost invariably needs to be adjusted up or down > > afterwards, and also if you happen to gain or lose real weight (as opposed > > to just fluid weight). > > > > You really shouldn't be getting things like headaches or cramps all the > > time. Occasionally, sure, but not all the time. If you do, there is either > > something about your dialysis prescription that isn't optimal for you, or > > there's something wrong with your diet. Sometimes, it seems to take a bit > of > > constant complaining to get the nephrologist to look at changing > something. > > It shouldn't be that way, but that's how it is sometimes. > > > > When I first started last year, I had a persistent problem with tingling > > with about an hour left in the treatment and afterwards. At first, they > > didn't know what that was, and they didn't seem to care very much. It was > a > > month and a half before a rotation of nephrologists happened, and the new > > one figured it out right away. The normal amount of bicarbonate in the > > dialysate was too much for me, even though it's fine for 99.9% of > patients. > > The next treatment, it was lowered from 36 to 32, and I haven't had the > > problem since. Another problem I had was with itching. It wasn't horrible > > itching, but it was kind of uncomfortable. I mentioned it a few times, and > > they said that if I was allergic to the actual dialyzer, I would have more > > than just itching. But eventually, another nephrologist said, " Oh, well, > you > > might be allergic to the dialyzer " . For the next treatment, he changed my > > prescription to a special dialyzer that is not sterilised with a solvent. > > Problem solved. So it just goes to show that you have to be persistent > > sometimes, and patient too. > > > > I know what I said before, and it's still valid, but looking at those > > numbers, it sure seems like maybe they aren't taking enough fluid off you. > > Now, maybe there's a reason for that I don't know about. > > > > Pierre > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2004 Report Share Posted April 30, 2004 Thanks Cy. I hope you never need to refer to it though. Pierre Re: New to the group > > > > Hi Karissa. > > > > I'm not an expert on dialysis, as I said, just a patient... > > > > But, when I get to dialysis, I'm usually about 1 to 1.5 kilos over my dry > > weight, depending on how much salt I ate (it's the sodium that makes you > > drink and retain more water). My BP is sometimes as high as 155/90 when I > > get there, but often it's more in the 140/80-something range. During > > dialysis, it flirts with 110/70, sometimes dipping a little below that, > but > > it seems to be most happy at around 120/70-ish. At the end, after I'm off > > but still sitting, it's usually in the area of 120/80, and when I stand > up, > > it often goes up to around 140/90, sometimes a bit more (after I'm > > disconnected, the nurse takes a sitting and then a standing BP, every > time). > > > > Now, if I had numbers like the ones you just gave, down only to > > 150-160/80-85 during treatment, I'm pretty sure my doctor would be > thinking > > my dry weight should be lower (ie. they should be taking off more fluid > > during the treatment). > > > > Most blood pressure problems on hemodialysis are related to dry weight. > When > > you start dialysis the first time, the target dry weight is part of the > > prescription a nephrologist has written for the nurses and/or techs to > > follow. This " dry weight " is not arrived at as scientifically as it seems. > > It's really just a best guess based on body weight and a few other > factors, > > and it can be wrong. It almost invariably needs to be adjusted up or down > > afterwards, and also if you happen to gain or lose real weight (as opposed > > to just fluid weight). > > > > You really shouldn't be getting things like headaches or cramps all the > > time. Occasionally, sure, but not all the time. If you do, there is either > > something about your dialysis prescription that isn't optimal for you, or > > there's something wrong with your diet. Sometimes, it seems to take a bit > of > > constant complaining to get the nephrologist to look at changing > something. > > It shouldn't be that way, but that's how it is sometimes. > > > > When I first started last year, I had a persistent problem with tingling > > with about an hour left in the treatment and afterwards. At first, they > > didn't know what that was, and they didn't seem to care very much. It was > a > > month and a half before a rotation of nephrologists happened, and the new > > one figured it out right away. The normal amount of bicarbonate in the > > dialysate was too much for me, even though it's fine for 99.9% of > patients. > > The next treatment, it was lowered from 36 to 32, and I haven't had the > > problem since. Another problem I had was with itching. It wasn't horrible > > itching, but it was kind of uncomfortable. I mentioned it a few times, and > > they said that if I was allergic to the actual dialyzer, I would have more > > than just itching. But eventually, another nephrologist said, " Oh, well, > you > > might be allergic to the dialyzer " . For the next treatment, he changed my > > prescription to a special dialyzer that is not sterilised with a solvent. > > Problem solved. So it just goes to show that you have to be persistent > > sometimes, and patient too. > > > > I know what I said before, and it's still valid, but looking at those > > numbers, it sure seems like maybe they aren't taking enough fluid off you. > > Now, maybe there's a reason for that I don't know about. > > > > Pierre > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi Ellen, I'm new too. My doctor just told me that he thinks I have IgA Nephropathy too. I have had microscopic hematuria for a year and a half and I've had macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a neph for the first time on May 18th. I felt complete despair and panic, but I'm beginning to calm down now. I've been reading a lot of the old e-mails and posts that are part of this online support group and they have been really helpful just to understand this disease and what to expect. I don't know what I would have done without them. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Hi Ellen, I'm new too. My doctor just told me that he thinks I have IgA Nephropathy too. I have had microscopic hematuria for a year and a half and I've had macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a neph for the first time on May 18th. I felt complete despair and panic, but I'm beginning to calm down now. I've been reading a lot of the old e-mails and posts that are part of this online support group and they have been really helpful just to understand this disease and what to expect. I don't know what I would have done without them. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Cheryl, Welcome. You've only skimmed the tip of the iceberg. The people here are excellent sounding boards. In no time you feel as if they are part of your extendedd family. I know I do. I am glad you found us and our posts have helped alleviate some of your dispair. I know I speak for the majority of us here when I say we will offer as much knowledge and support as we can. We can't offer any real medical advise, just our own personal experiences which can make discussing your condition and alternatives with your doctors a whole lot easier. Again Welcome, Tony C and Schmeagle > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e- mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Cheryl, Welcome. You've only skimmed the tip of the iceberg. The people here are excellent sounding boards. In no time you feel as if they are part of your extendedd family. I know I do. I am glad you found us and our posts have helped alleviate some of your dispair. I know I speak for the majority of us here when I say we will offer as much knowledge and support as we can. We can't offer any real medical advise, just our own personal experiences which can make discussing your condition and alternatives with your doctors a whole lot easier. Again Welcome, Tony C and Schmeagle > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e- mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2004 Report Share Posted May 11, 2004 Cheryl, Welcome. You've only skimmed the tip of the iceberg. The people here are excellent sounding boards. In no time you feel as if they are part of your extendedd family. I know I do. I am glad you found us and our posts have helped alleviate some of your dispair. I know I speak for the majority of us here when I say we will offer as much knowledge and support as we can. We can't offer any real medical advise, just our own personal experiences which can make discussing your condition and alternatives with your doctors a whole lot easier. Again Welcome, Tony C and Schmeagle > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e- mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Cheryl, I wanted to welcome you too! I won't repeat everything I just wrote to Ellen, but I hope some of that will be helpful to you as well. Your creatinine is only very slightly elevated. Please let us know what your Nephrologist says at your first visit next week. Don't be surprised if you are prescribed an Ace inhibitor regardless of whether your blood pressure is elevated or not. That is a fairly standard practice for IgAN because Ace inhibitors are known to have a renal protective nature, and also keeping your blood pressure in check is very important in preserving kidney function. Welcome again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Cheryl, I wanted to welcome you too! I won't repeat everything I just wrote to Ellen, but I hope some of that will be helpful to you as well. Your creatinine is only very slightly elevated. Please let us know what your Nephrologist says at your first visit next week. Don't be surprised if you are prescribed an Ace inhibitor regardless of whether your blood pressure is elevated or not. That is a fairly standard practice for IgAN because Ace inhibitors are known to have a renal protective nature, and also keeping your blood pressure in check is very important in preserving kidney function. Welcome again. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Cheryl, Welcome to the group. I'm happy to hear your fears are being calmed by our old postings. I know that feeling of despair and panic, I lived it for a few months after my diagnosis. This group was a wonderful source of calm in the midst of that storm, and they continue to be a source of strength for me on my down days. Let us know how your neph appointment goes. I hope they can get you some more concrete answers. Amy Re: New to the group > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e-mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Cheryl, Welcome to the group. I'm happy to hear your fears are being calmed by our old postings. I know that feeling of despair and panic, I lived it for a few months after my diagnosis. This group was a wonderful source of calm in the midst of that storm, and they continue to be a source of strength for me on my down days. Let us know how your neph appointment goes. I hope they can get you some more concrete answers. Amy Re: New to the group > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e-mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi Cheryl, Welcome to the group. I'm happy to hear your fears are being calmed by our old postings. I know that feeling of despair and panic, I lived it for a few months after my diagnosis. This group was a wonderful source of calm in the midst of that storm, and they continue to be a source of strength for me on my down days. Let us know how your neph appointment goes. I hope they can get you some more concrete answers. Amy Re: New to the group > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e-mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e- mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > Hi Ellen, so sorry to hear that you need to join our group. One question I have is how can they diagnoise you without a biospy. Sounds like it is a pure guess on thier part. Most neph. want a biospy done to get an exact name of the disease. I wish you the best. Yes it is a terrifying disease and it is alot to learn about. My suggestion is always ask questions and always get copies of your medical records. Depression has been a big part of my life since discovering but most days when I feel good I try to keep my heasd up and be cheerful and be happy for that day alone. What is so crazy about this disease everybody says is that you look like you are fine but are not. There has been alot of research the past few years on IGan so hopefully we will get good results. Good Luck Billie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e- mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > Hi Ellen, so sorry to hear that you need to join our group. One question I have is how can they diagnoise you without a biospy. Sounds like it is a pure guess on thier part. Most neph. want a biospy done to get an exact name of the disease. I wish you the best. Yes it is a terrifying disease and it is alot to learn about. My suggestion is always ask questions and always get copies of your medical records. Depression has been a big part of my life since discovering but most days when I feel good I try to keep my heasd up and be cheerful and be happy for that day alone. What is so crazy about this disease everybody says is that you look like you are fine but are not. There has been alot of research the past few years on IGan so hopefully we will get good results. Good Luck Billie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 > Hi Ellen, > I'm new too. My doctor just told me that he thinks I have IgA Nephropathy > too. I have had microscopic hematuria for a year and a half and I've had > macroscopic with a respiratory infection. My creatinine is 1.0 and I'm seeing a > neph for the first time on May 18th. I felt complete despair and panic, but I'm > beginning to calm down now. I've been reading a lot of the old e- mails and > posts that are part of this online support group and they have been really > helpful just to understand this disease and what to expect. I don't know what I > would have done without them. > Cheryl > > Hi Ellen, so sorry to hear that you need to join our group. One question I have is how can they diagnoise you without a biospy. Sounds like it is a pure guess on thier part. Most neph. want a biospy done to get an exact name of the disease. I wish you the best. Yes it is a terrifying disease and it is alot to learn about. My suggestion is always ask questions and always get copies of your medical records. Depression has been a big part of my life since discovering but most days when I feel good I try to keep my heasd up and be cheerful and be happy for that day alone. What is so crazy about this disease everybody says is that you look like you are fine but are not. There has been alot of research the past few years on IGan so hopefully we will get good results. Good Luck Billie > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2004 Report Share Posted May 12, 2004 Hi , Let me start with the most troublesome first. You have only been on injections a short while, and it does take time to get your levels up. If my memory serves me correctly (which it often doesn't I must admit) your hematocrit was extremely low. I can share with you that when mine drops, as it currently has down to 10, I have a much harder time with full-time work myself. I feel much much better when I am around 13. It may be that your levels are still just too low for you to feel the positive impact yet, but be patient because it does take a while to built up. Also, you have had a great deal of stress lately with the death of your grandmother, loss of your job, starting a new job, a house full of company, and weren't you the one painting and working on your house too? That could be compounded by the fact that it really has not been that long since you were diagnosed, and it does take time to grieve through all that. Stress has its way of further draining you. I would think you should start to begin feeling more energy, and therefore being able to concentrate more easily within a few more weeks when you are getting the full impact of your injections. On the bananas, I assume your Nephrologist has checked your potassium levels and you do not tend to run high as many of us do, but if not, be careful not to overdo it on the bananas. The lower back pain is commonly called flank pain, and some of us are constantly plagued with it while others rarely get it. For some, it is a constant and severe pain, and for others more comparable to a dull headache that is irritating and just won't go away, but is mainly in the background. Be careful with over the counter pain meds. Try to avoid them if you can, but if not, most Neph's recommend Tylenol, but definitely not Ibuprofen products which are known to be hard on the kidneys. I am not a doctor, and not qualified to give any medical advise as you know, but I hope some of this is somewhat encouraging to you. Try to allow yourself to get enough rest in the meantime . I hope you feel better soon. Quote Link to comment Share on other sites More sharing options...
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