Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Pierre, That explains why my neph. on the last two visits has not asked for a urine collection. In answer to my question " How long before dialysis " he answers 3 to 6 months. That has happened now three times. Has anyone any clues on that? Judging as near as I can by what you have said in the past, I think I am at a similar stage to yourself, Pierre. I will have a better idea when I see my neph in two weeks. An interesting thing on blood pressure, mine has started to drop to 115/70 even though I am still taking the same medication. This produces a slight headache and makes me feel weak. I have reduced my Atacand (candesartan) from 16mg to 12mg and that has elevated it to 120/76 which might not appear a huge difference but it is enough to stop the headache. I have also lost weight (6kg) which may account for it. Has anyone else noticed a drop in BP as this disease has progressed towards ESRD? Derrick, Sydney, Australia % kidney function More on this subject which often comes up. Why are so many people told they have about 50% kidney function when they are first diagnosed with a kidney problem (IgAN or any other)? It's a simple rule of thumb, and no calculation is involved at all. The fact is that most people with IgAN are initially diagnosed when protein or blood is found in their urine, and most will have slightly elevated serum creatinine level. By the time serum creatinine is elevated, the person will usually have lost about 50% of kidney function. Simple as that. It's usually a guesstimate, until actual creatinine clearance can be measured. After that, while a nephrologist will periodically order a 24 hour urine collection for creatinine clearance and proteinuria, once the person's initial serum creatinine is known, then most of the tracking of renal function over the years can be done by serum creatinine alone. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 I must be one of the exceptions to the rule. I was initially diagnosed at age 17. Plenty of gross hematuria and proteinuria. Serum creatinine of 1.0. It was not until a couple years later when I came down with pneumonia that my SCr went up to 2.1 and my neph told me I was at 50%. Marty % kidney function More on this subject which often comes up. Why are so many people told they have about 50% kidney function when they are first diagnosed with a kidney problem (IgAN or any other)? It's a simple rule of thumb, and no calculation is involved at all. The fact is that most people with IgAN are initially diagnosed when protein or blood is found in their urine, and most will have slightly elevated serum creatinine level. By the time serum creatinine is elevated, the person will usually have lost about 50% of kidney function. Simple as that. It's usually a guesstimate, until actual creatinine clearance can be measured. After that, while a nephrologist will periodically order a 24 hour urine collection for creatinine clearance and proteinuria, once the person's initial serum creatinine is known, then most of the tracking of renal function over the years can be done by serum creatinine alone. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 If you have your serum creatinine numbers from the past year or two, what you can do is plot them on what they call an " inverse creatinine graph " . Then draw a line through the dots, and when the line reaches zero is approx. when dialysis will be required. If you're interested, there are inverse creatinine plotting tools available on some renal websites. I don't know why your BP would be better controlled with the same dose of medication as your kidney function gets worse, unless you've made changes in your diet, lost a lot of weight (not sure if 6 kilos would make much difference though). Most people's BP is very salt-sensitive at this stage, so, if you significantly reduced your sodium intake, that might account for it. If you take a loop diuretic, that can really help a drug like Atacand lower your BP. There might be other factors I'm not aware of in your case, like coming off of prednisone, for example. Pierre Re: % kidney function > Pierre, > That explains why my neph. on the last two visits has not asked for a urine collection. > > In answer to my question " How long before dialysis " he answers 3 to 6 months. That has happened now three times. > > Has anyone any clues on that? Judging as near as I can by what you have said in the past, I think I am at a similar stage to yourself, Pierre. I will have a better idea when I see my neph in two weeks. > > An interesting thing on blood pressure, mine has started to drop to 115/70 even though I am still taking the same medication. This produces a slight headache and makes me feel weak. I have reduced my Atacand (candesartan) from 16mg to 12mg and that has elevated it to 120/76 which might not appear a huge difference but it is enough to stop the headache. I have also lost weight (6kg) which may account for it. Has anyone else noticed a drop in BP as this disease has progressed towards ESRD? > > Derrick, > Sydney, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Re: % kidney function > Pierre, > That explains why my neph. on the last two visits has not asked for a urine collection. > I just did a 24 hour urine collection last week - the first in over a year. I don't think I've ever done more than one or two per year, if that. Pierre Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Actually, it was the same for me. They happen to have detected the blood and protein early on, but it wasn't until I had my biopsy in '93 that I was given the 50% number. But, my serum creatinine wasn't really elevated beyond the normal range until then anyway. Before that, nobody thought it was as serious as it would become many years later. At one point, they even thought I might be one of those people who just have small amounts of protein and blood in the urine without any real sign of kidney disease (like some athletes). Pierre % kidney function > > > More on this subject which often comes up. > > Why are so many people told they have about 50% kidney function when they > are first diagnosed with a kidney problem (IgAN or any other)? > > It's a simple rule of thumb, and no calculation is involved at all. The fact > is that most people with IgAN are initially diagnosed when protein or blood > is found in their urine, and most will have slightly elevated serum > creatinine level. By the time serum creatinine is elevated, the person will > usually have lost about 50% of kidney function. Simple as that. It's usually > a guesstimate, until actual creatinine clearance can be measured. > > After that, while a nephrologist will periodically order a 24 hour urine > collection for creatinine clearance and proteinuria, once the person's > initial serum creatinine is known, then most of the tracking of renal > function over the years can be done by serum creatinine alone. > > Pierre > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 For Ralph they found out in a routine physical that he had blood and protein in his urine in oct of 2000. In may 2001 they did the biopsy and said that the by the lab work that he had 80% kidney function in the one kidney that was functioning. His nov lab work they tell us says he now has 40% kidney function. He gets labwork done again on tues. We are hoping function has not gone down even more. Can the kidney function go back up? Connie --- Pierre wrote: > Actually, it was the same for me. They happen to > have detected the blood and > protein early on, but it wasn't until I had my > biopsy in '93 that I was > given the 50% number. But, my serum creatinine > wasn't really elevated beyond > the normal range until then anyway. Before that, > nobody thought it was as > serious as it would become many years later. At one > point, they even thought > I might be one of those people who just have small > amounts of protein and > blood in the urine without any real sign of kidney > disease (like some > athletes). > Pierre > > % kidney function > > > > > > More on this subject which often comes up. > > > > Why are so many people told they have about 50% > kidney function when > they > > are first diagnosed with a kidney problem (IgAN > or any other)? > > > > It's a simple rule of thumb, and no calculation > is involved at all. The > fact > > is that most people with IgAN are initially > diagnosed when protein or > blood > > is found in their urine, and most will have > slightly elevated serum > > creatinine level. By the time serum creatinine > is elevated, the person > will > > usually have lost about 50% of kidney function. > Simple as that. It's > usually > > a guesstimate, until actual creatinine clearance > can be measured. > > > > After that, while a nephrologist will > periodically order a 24 hour urine > > collection for creatinine clearance and > proteinuria, once the person's > > initial serum creatinine is known, then most of > the tracking of renal > > function over the years can be done by serum > creatinine alone. > > > > Pierre > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2002 Report Share Posted January 27, 2002 Pierre, Thanks for the info. I will plot a graph. As far as BP is concerned I am careful with my diet and salt although my neph. has not suggested a modified diet yet. I am not on any diuretics, just a calcium channel blocker, Plendil (felodipine) in conjunction with Atacand. I will see what my next lot of blood tests come up with in two weeks and I will discuss this further with you. Since I found this web site, I am more relaxed about my condition and look to make the best use of what I have left today in kidney function. Derrick Sydney, Australia Re: % kidney function > Pierre, > That explains why my neph. on the last two visits has not asked for a urine collection. > > In answer to my question " How long before dialysis " he answers 3 to 6 months. That has happened now three times. > > Has anyone any clues on that? Judging as near as I can by what you have said in the past, I think I am at a similar stage to yourself, Pierre. I will have a better idea when I see my neph in two weeks. > > An interesting thing on blood pressure, mine has started to drop to 115/70 even though I am still taking the same medication. This produces a slight headache and makes me feel weak. I have reduced my Atacand (candesartan) from 16mg to 12mg and that has elevated it to 120/76 which might not appear a huge difference but it is enough to stop the headache. I have also lost weight (6kg) which may account for it. Has anyone else noticed a drop in BP as this disease has progressed towards ESRD? > > Derrick, > Sydney, Australia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 When I was first diagnosed, I was at 95% and it has been the same for a few years. The only reason they know about mine is because I had the blood & protein in my urine. I guess my case is different, but hearing you guys talk, it does worry me that mine may go down in the next few years. Re: % kidney function Actually, it was the same for me. They happen to have detected the blood and protein early on, but it wasn't until I had my biopsy in '93 that I was given the 50% number. But, my serum creatinine wasn't really elevated beyond the normal range until then anyway. Before that, nobody thought it was as serious as it would become many years later. At one point, they even thought I might be one of those people who just have small amounts of protein and blood in the urine without any real sign of kidney disease (like some athletes). Pierre % kidney function > > > More on this subject which often comes up. > > Why are so many people told they have about 50% kidney function when they > are first diagnosed with a kidney problem (IgAN or any other)? > > It's a simple rule of thumb, and no calculation is involved at all. The fact > is that most people with IgAN are initially diagnosed when protein or blood > is found in their urine, and most will have slightly elevated serum > creatinine level. By the time serum creatinine is elevated, the person will > usually have lost about 50% of kidney function. Simple as that. It's usually > a guesstimate, until actual creatinine clearance can be measured. > > After that, while a nephrologist will periodically order a 24 hour urine > collection for creatinine clearance and proteinuria, once the person's > initial serum creatinine is known, then most of the tracking of renal > function over the years can be done by serum creatinine alone. > > Pierre > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 The numbers for serum creatinine can go up and down a bit, but for a chronic condition, these are often within the margin of error of the tests, or due to starting or stopping some blood pressure meds. In acute glomerulonephritis, kidney function can improve once the acute inflammation gets better, if there is no permanent damage to the glomeruli. Ralph doesn't sound like an acute case though. Pierre % kidney function > > > > > > > > > More on this subject which often comes up. > > > > > > Why are so many people told they have about 50% > > kidney function when > > they > > > are first diagnosed with a kidney problem (IgAN > > or any other)? > > > > > > It's a simple rule of thumb, and no calculation > > is involved at all. The > > fact > > > is that most people with IgAN are initially > > diagnosed when protein or > > blood > > > is found in their urine, and most will have > > slightly elevated serum > > > creatinine level. By the time serum creatinine > > is elevated, the person > > will > > > usually have lost about 50% of kidney function. > > Simple as that. It's > > usually > > > a guesstimate, until actual creatinine clearance > > can be measured. > > > > > > After that, while a nephrologist will > > periodically order a 24 hour urine > > > collection for creatinine clearance and > > proteinuria, once the person's > > > initial serum creatinine is known, then most of > > the tracking of renal > > > function over the years can be done by serum > > creatinine alone. > > > > > > Pierre > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Hi Derrick. Actually, felodipine and Atacand can be a fairly powerful combination for lowering BP. I'm on felodipine and Avapro (which is similar to Atacand). A lot of kidney patients take felodipine. I'm really happy to hear a group like this can help people feel more relaxed about their condition. Sometimes, too much knowledge can have the opposite effect, so my goal when starting the group was to provide a forum for sharing information about IgAN in as optimistic a setting as possible. I think the absence of information, or worse, misinformation, can be more troubling overall. Pierre Re: % kidney function > > > > Pierre, > > That explains why my neph. on the last two visits has not asked > for a urine collection. > > > > In answer to my question " How long before dialysis " he answers 3 to 6 > months. That has happened now three times. > > > > Has anyone any clues on that? Judging as near as I can by what you have > said in the past, I think I am at a similar stage to yourself, Pierre. I > will have a better idea when I see my neph in two weeks. > > > > An interesting thing on blood pressure, mine has started to drop to 115/70 > even though I am still taking the same medication. This produces a slight > headache and makes me feel weak. I have reduced my Atacand (candesartan) > from 16mg to 12mg and that has elevated it to 120/76 which might not appear > a huge difference but it is enough to stop the headache. I have also lost > weight (6kg) which may account for it. Has anyone else noticed a drop in BP > as this disease has progressed towards ESRD? > > > > Derrick, > > Sydney, Australia > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Marty is already there, and I'm headed towards dialysis, but don't let that worry you. For one thing, not everyone reaches that point, and for another, in my early days with IgAN, most of the blood pressure drugs that are now known to be renal protective either didn't exist or weren't widely used yet. So, those of you diagnosed from the mid-90's on have a much better chance, I think. Also, keep in mind that it took over 2 decades for me to get to this point. Lots of new developments can happen in that time frame. Pierre Re: % kidney function > > Actually, it was the same for me. They happen to have detected the > blood and > protein early on, but it wasn't until I had my biopsy in '93 that I > was > given the 50% number. But, my serum creatinine wasn't really > elevated beyond > the normal range until then anyway. Before that, nobody thought it > was as > serious as it would become many years later. At one point, they even > thought > I might be one of those people who just have small amounts of > protein and > blood in the urine without any real sign of kidney disease (like > some > athletes). > Pierre > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Pierre, Good afternoon or is it Good morning? I have recently been diagnosed with IgA (Nov '01). I have my next meeting with the consultant since my diagnosis on the 5th Feb '02 The only thing I know is the % I have left of my kidneys - currently @40% with BP@144/105 on Jan 17 to a recent BP@122/86 on Jan 25 (5mg Beaters Blockers) What questions should I ask my Doc? What foods can/not eat? How much alcohol can I consume? I would appreciate you help. Regards Ian, London Re: % kidney function > > > > > > > Pierre, > > > That explains why my neph. on the last two visits has not > asked > > for a urine collection. > > > > > > In answer to my question " How long before dialysis " he answers 3 to 6 > > months. That has happened now three times. > > > > > > Has anyone any clues on that? Judging as near as I can by what you > have > > said in the past, I think I am at a similar stage to yourself, Pierre. I > > will have a better idea when I see my neph in two weeks. > > > > > > An interesting thing on blood pressure, mine has started to drop to > 115/70 > > even though I am still taking the same medication. This produces a > slight > > headache and makes me feel weak. I have reduced my Atacand (candesartan) > > from 16mg to 12mg and that has elevated it to 120/76 which might not > appear > > a huge difference but it is enough to stop the headache. I have also > lost > > weight (6kg) which may account for it. Has anyone else noticed a drop in > BP > > as this disease has progressed towards ESRD? > > > > > > Derrick, > > > Sydney, Australia > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Hi Ian. Just barely afternoon now, thanks. Sorry you've had to join the club by being diagnosed with IgAN. Here are few thing you might want to ask about. First of all, if you want to be able to track the progression of your IgAN over the years, you need to know what your serum creatinine is (sometimes called plasma creatinine), and how much proteinuria you have. For creatinine, all you need is a blood test. For proteinuria, you need to have done a 24 hour urine collection (this will also give you your creatinine clearance). Those are the three basic pieces of info you should know about it. You don't state if you have had a kidney biopsy. If not, you might want to ask your consultant about it. If you have had one, what was the gist if the report? For example, mine was " mesangial proliferative glomerulonephritis with preponderance of IgA deposits and glomerulosclerosis... " . This leads into the prognosis. Is it the rarer rapidly-progressive type of IgAN (usually with crescents on the biopsy), or the usual chronic kind that may or may not progress to end-stage renal disease in 10 to 30 years? Other than that, you could ask if any dietary restrictions are necessary. They probably aren't. You might be told to avoid table salt (this is for the high blood pressure). You might or might not be advised to follow a lower protein diet. It depends on your condition. So, your consultant should advise on that. If they don't tell you to limit anything, then you can safely assume that you don't need to at this time. There is really nothing you can eat or not eat that affects the IgAN itself. Alcohol is fine in moderation. A drink or two per day shouldn't be a problem. Even people with more advanced renal failure who are on a renal diet can have wine, for example. You're BP is not too bad on just a beta blocker. Your diastolic is a little on the high side though. However, the drug of first choice to use for high BP in the case of IgAN is any one of the ACE inhibitor class. A beta blocker might be added later if needed (unless you need one for another condition). You could ask your doctor about that. Hope that helps. Pierre Ottawa, Canada Re: % kidney function > > > > > > > > > > Pierre, > > > > That explains why my neph. on the last two visits has not > > asked > > > for a urine collection. > > > > > > > > In answer to my question " How long before dialysis " he answers 3 to > 6 > > > months. That has happened now three times. > > > > > > > > Has anyone any clues on that? Judging as near as I can by what you > > have > > > said in the past, I think I am at a similar stage to yourself, Pierre. > I > > > will have a better idea when I see my neph in two weeks. > > > > > > > > An interesting thing on blood pressure, mine has started to drop to > > 115/70 > > > even though I am still taking the same medication. This produces a > > slight > > > headache and makes me feel weak. I have reduced my Atacand > (candesartan) > > > from 16mg to 12mg and that has elevated it to 120/76 which might not > > appear > > > a huge difference but it is enough to stop the headache. I have also > > lost > > > weight (6kg) which may account for it. Has anyone else noticed a drop > in > > BP > > > as this disease has progressed towards ESRD? > > > > > > > > Derrick, > > > > Sydney, Australia > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Sorry, forgot to add one more thing for Ian. Ask about exercise. Vigourous exercise is usually recommended, barring any other medical condition that might preclude it. Pierre Re: % kidney function > > > > > > > > > > > > > Pierre, > > > > > That explains why my neph. on the last two visits has not > > > asked > > > > for a urine collection. > > > > > > > > > > In answer to my question " How long before dialysis " he answers 3 > to > > 6 > > > > months. That has happened now three times. > > > > > > > > > > Has anyone any clues on that? Judging as near as I can by what > you > > > have > > > > said in the past, I think I am at a similar stage to yourself, > Pierre. > > I > > > > will have a better idea when I see my neph in two weeks. > > > > > > > > > > An interesting thing on blood pressure, mine has started to drop > to > > > 115/70 > > > > even though I am still taking the same medication. This produces a > > > slight > > > > headache and makes me feel weak. I have reduced my Atacand > > (candesartan) > > > > from 16mg to 12mg and that has elevated it to 120/76 which might not > > > appear > > > > a huge difference but it is enough to stop the headache. I have also > > > lost > > > > weight (6kg) which may account for it. Has anyone else noticed a > drop > > in > > > BP > > > > as this disease has progressed towards ESRD? > > > > > > > > > > Derrick, > > > > > Sydney, Australia > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2002 Report Share Posted January 28, 2002 Thank you for a speedy response. It's a shame you're not in charge of our train service considering the current situation (Train strike). Yes I have had a Biopsy.....several. One on the leg diagnosing Strep'l and obviously my Kidneys - when they finally managed to get through! I am 90% certain the Doc diagnosed me with chronic IgAN. I forgot to mention the Doc put me on 2.5mg which failed to reduce my BP. Exercise is great news. Walking is all I have managed to do....... no need to explain where! Doc told me to stop training because I was doing an excessive amount too soon after being released from hospital. I am sure you can understand. The pain isn't there all the time and when it is, I thought it was due to playing rugby? So I will take it gently and gradually increase my training hoping that my BP stays low. Keep up the good work Rgds Ian Re: % kidney function > > > > > > > > > > > > > > > > Pierre, > > > > > > That explains why my neph. on the last two visits has > not > > > > asked > > > > > for a urine collection. > > > > > > > > > > > > In answer to my question " How long before dialysis " he answers 3 > > to > > > 6 > > > > > months. That has happened now three times. > > > > > > > > > > > > Has anyone any clues on that? Judging as near as I can by what > > you > > > > have > > > > > said in the past, I think I am at a similar stage to yourself, > > Pierre. > > > I > > > > > will have a better idea when I see my neph in two weeks. > > > > > > > > > > > > An interesting thing on blood pressure, mine has started to drop > > to > > > > 115/70 > > > > > even though I am still taking the same medication. This produces a > > > > slight > > > > > headache and makes me feel weak. I have reduced my Atacand > > > (candesartan) > > > > > from 16mg to 12mg and that has elevated it to 120/76 which might > not > > > > appear > > > > > a huge difference but it is enough to stop the headache. I have > also > > > > lost > > > > > weight (6kg) which may account for it. Has anyone else noticed a > > drop > > > in > > > > BP > > > > > as this disease has progressed towards ESRD? > > > > > > > > > > > > Derrick, > > > > > > Sydney, Australia > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2002 Report Share Posted February 1, 2002 Same here - I doubt I've ever done more than two 24-hour collections per year, back in the days when I was seeing my neph twice per year anyway. Robin s Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.