Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Oh , I positively feel your frustration! I would have been very upset too. It is at the very least irresponsible to tell a patient it is OK to not take their meds, much less saying that to an adolescent! I do think you should share your concerns with your regular Neph. I am so sorry you had such a frustrating visit. I also hope things slow down for you at work. That sounds like a very rough schedule. The good news is that the protein and blood are under control, and lets pray they stay that way! In a message dated 12/30/2004 8:00:28 PM Pacific Standard Time, snooksmama@... writes: > I'm sorry I haven't been responding or posting very much. I do try to > read the posts, but have had trouble keeping up. I finally was able to > get a new computer, so that problem is solved. Unfortunately, the other > admissions nurse in my department was suspended, and then had a scheduled > vacation, so I have been working and on call for the last 10 out of 11 > days. It has been very hectic. > I did get Tuesday off to take Rob to his rheumatology and nephrology > appts. > Rob's regular nephrologist was out of town. I just love this doctor, Dr. > Devarajan. He is wonderful. Unfortunately, we had to go on and schedule > with another nephrologist in the group, because we have to travel 120 > miles to the appts for rheumy and neph, and I do not like to take Rob out > of school, so I wanted him to be seen during Christmas break. > This nephrologist, who had never seen Rob before, made me so mad I > thought I was going to blow a gasket! > We did have great news, the Cozaar is continuing to control the protein > and blood in his urine. We were so happy to hear about that! > The neph, on the other hand....started talking to Rob about how > proteinuria damages the kidneys. Then, he says, at some point, Rob could > go off the Cozaar just to see if the hematuria and proteinuria would > still occur. This led him into talking about how he knows that lots of > patients don't take their meds, and its ok if they do that, and he could > take a drug holiday during the summer, and just see what happens!! Rob, > of course, absolutely LOVED this idea. I was livid! I looked the neph > squarely in the eye, and said, I CANNOT BELIEVE that you just told an > ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and > then asked me if I was interested in having a definitive diagnosis. I > told him that Dr. D. was fairly sure of the Alport's diagnosis, and that > Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he > had not even gone completely through Robs chart and I had to fill him in > on many things. But, it was like he was out to undermine everything that > had taken place! Granted, it would be wonderful if Rob didn't have > Alports, but the biopsy clearly showed irregularities, and there is no > other explanation for what he has, other than diabetic nephropathy, and > we know he is not diabetic. So this guy was absolutely irritating and > maddening! I have been waiting to calm down (but I find that I just keep > getting madder!), I plan to email Dr. D and tell him just how disgusted I > was about what he told Rob. It is hard enough to get a teenager to take > his meds, and Rob also has an exercise regimen he must do to keep things > limber (because of the ankylosing spondylitis). He faces his spine fusing > in about 10 years. It is imperative that he diligently exercise in order > to prevent it fusing in a 'bad' position. Meds are the one thing Rob has > been compliant with, but the exercises, no. But at least he is compliant > with meds, that is until Dr. 'HELPFUL' told him no need! > The rheumy did read Rob the riot act about the exercises, so at least > SOMEONE cares if he is compliant!! > Ok, thanks for listening! > , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 I'm sorry I haven't been responding or posting very much. I do try to read the posts, but have had trouble keeping up. I finally was able to get a new computer, so that problem is solved. Unfortunately, the other admissions nurse in my department was suspended, and then had a scheduled vacation, so I have been working and on call for the last 10 out of 11 days. It has been very hectic. I did get Tuesday off to take Rob to his rheumatology and nephrology appts. Rob's regular nephrologist was out of town. I just love this doctor, Dr. Devarajan. He is wonderful. Unfortunately, we had to go on and schedule with another nephrologist in the group, because we have to travel 120 miles to the appts for rheumy and neph, and I do not like to take Rob out of school, so I wanted him to be seen during Christmas break. This nephrologist, who had never seen Rob before, made me so mad I thought I was going to blow a gasket! We did have great news, the Cozaar is continuing to control the protein and blood in his urine. We were so happy to hear about that! The neph, on the other hand....started talking to Rob about how proteinuria damages the kidneys. Then, he says, at some point, Rob could go off the Cozaar just to see if the hematuria and proteinuria would still occur. This led him into talking about how he knows that lots of patients don't take their meds, and its ok if they do that, and he could take a drug holiday during the summer, and just see what happens!! Rob, of course, absolutely LOVED this idea. I was livid! I looked the neph squarely in the eye, and said, I CANNOT BELIEVE that you just told an ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and then asked me if I was interested in having a definitive diagnosis. I told him that Dr. D. was fairly sure of the Alport's diagnosis, and that Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he had not even gone completely through Robs chart and I had to fill him in on many things. But, it was like he was out to undermine everything that had taken place! Granted, it would be wonderful if Rob didn't have Alports, but the biopsy clearly showed irregularities, and there is no other explanation for what he has, other than diabetic nephropathy, and we know he is not diabetic. So this guy was absolutely irritating and maddening! I have been waiting to calm down (but I find that I just keep getting madder!), I plan to email Dr. D and tell him just how disgusted I was about what he told Rob. It is hard enough to get a teenager to take his meds, and Rob also has an exercise regimen he must do to keep things limber (because of the ankylosing spondylitis). He faces his spine fusing in about 10 years. It is imperative that he diligently exercise in order to prevent it fusing in a 'bad' position. Meds are the one thing Rob has been compliant with, but the exercises, no. But at least he is compliant with meds, that is until Dr. 'HELPFUL' told him no need! The rheumy did read Rob the riot act about the exercises, so at least SOMEONE cares if he is compliant!! Ok, thanks for listening! , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Oh ! What an utter slimebag! How I HATE the " hadn't read the patient's chart " problem. This is simply just poor medicine. I ran into this frequently with my husband's docs before he died and a good friend of mine runs into with her son's docs. Assuming that you're not showing up in the ER with an emergency situation, the very least they could do is scan the recent letters and labs. I would definately write that email to Dr. D - who will hopefully read the guy the riot act. It is very hard being the parent of an adolescent - when the adults around you act like such buffoons. We ran into something similar once ( but nowheres in the same league as the bozo you encountered) when the docs at Packard sprung a resident on us. I began to ask a question about C3NF - and the guy kept giving me answers that were appropriate for C3 (apparently he never finished reading the chapter in his immunology textbook about complement). I refused to back down - and he refused to appreciate the distinction. After he trotted off to ask his boss (leaving me feeling very much like I was at the car dealers waiting to speak to the manager!), the attending came in. Fortunately, it's never happened to us again. I often think of Pierre's line a long time ago to the effect that you're paying for the guy's experience - not necessarily his time (I think Pierre said that once in response to patients complaining about very short appointments). At the very least, you should get the experience! Would it be appropriate for you to ask Dr. D to have a one-on-one conversation with Rob and steer him straight about the relative importance of meds? Do you think he'd be willing to give Rob a call at home? That might help. I think you're standing your ground in front of Rob will also make an important impression. has seen me politely (and OK, sometimes not so politely) question the docs and try to get an explanation (i.e. not blinding letting them put him on clonidine recently). I always try to do it with the sense that adults aren't always right (no surprise there) and asking educated questions instead of blindly following the doc allows you to take better care of yourself. Our guys are at that threshold of taking care of themselves - which is a scary thing to contemplate. As impossible as it sounds, I hope you guys have a peaceful weekend. Cy Re: Rob update > > I'm sorry I haven't been responding or posting very much. I do try to > read the posts, but have had trouble keeping up. I finally was able to > get a new computer, so that problem is solved. Unfortunately, the other > admissions nurse in my department was suspended, and then had a scheduled > vacation, so I have been working and on call for the last 10 out of 11 > days. It has been very hectic. > I did get Tuesday off to take Rob to his rheumatology and nephrology > appts. > Rob's regular nephrologist was out of town. I just love this doctor, Dr. > Devarajan. He is wonderful. Unfortunately, we had to go on and schedule > with another nephrologist in the group, because we have to travel 120 > miles to the appts for rheumy and neph, and I do not like to take Rob out > of school, so I wanted him to be seen during Christmas break. > This nephrologist, who had never seen Rob before, made me so mad I > thought I was going to blow a gasket! > We did have great news, the Cozaar is continuing to control the protein > and blood in his urine. We were so happy to hear about that! > The neph, on the other hand....started talking to Rob about how > proteinuria damages the kidneys. Then, he says, at some point, Rob could > go off the Cozaar just to see if the hematuria and proteinuria would > still occur. This led him into talking about how he knows that lots of > patients don't take their meds, and its ok if they do that, and he could > take a drug holiday during the summer, and just see what happens!! Rob, > of course, absolutely LOVED this idea. I was livid! I looked the neph > squarely in the eye, and said, I CANNOT BELIEVE that you just told an > ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and > then asked me if I was interested in having a definitive diagnosis. I > told him that Dr. D. was fairly sure of the Alport's diagnosis, and that > Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he > had not even gone completely through Robs chart and I had to fill him in > on many things. But, it was like he was out to undermine everything that > had taken place! Granted, it would be wonderful if Rob didn't have > Alports, but the biopsy clearly showed irregularities, and there is no > other explanation for what he has, other than diabetic nephropathy, and > we know he is not diabetic. So this guy was absolutely irritating and > maddening! I have been waiting to calm down (but I find that I just keep > getting madder!), I plan to email Dr. D and tell him just how disgusted I > was about what he told Rob. It is hard enough to get a teenager to take > his meds, and Rob also has an exercise regimen he must do to keep things > limber (because of the ankylosing spondylitis). He faces his spine fusing > in about 10 years. It is imperative that he diligently exercise in order > to prevent it fusing in a 'bad' position. Meds are the one thing Rob has > been compliant with, but the exercises, no. But at least he is compliant > with meds, that is until Dr. 'HELPFUL' told him no need! > The rheumy did read Rob the riot act about the exercises, so at least > SOMEONE cares if he is compliant!! > Ok, thanks for listening! > , mom to Rob, 15 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2004 Report Share Posted December 30, 2004 Oh ! What an utter slimebag! How I HATE the " hadn't read the patient's chart " problem. This is simply just poor medicine. I ran into this frequently with my husband's docs before he died and a good friend of mine runs into with her son's docs. Assuming that you're not showing up in the ER with an emergency situation, the very least they could do is scan the recent letters and labs. I would definately write that email to Dr. D - who will hopefully read the guy the riot act. It is very hard being the parent of an adolescent - when the adults around you act like such buffoons. We ran into something similar once ( but nowheres in the same league as the bozo you encountered) when the docs at Packard sprung a resident on us. I began to ask a question about C3NF - and the guy kept giving me answers that were appropriate for C3 (apparently he never finished reading the chapter in his immunology textbook about complement). I refused to back down - and he refused to appreciate the distinction. After he trotted off to ask his boss (leaving me feeling very much like I was at the car dealers waiting to speak to the manager!), the attending came in. Fortunately, it's never happened to us again. I often think of Pierre's line a long time ago to the effect that you're paying for the guy's experience - not necessarily his time (I think Pierre said that once in response to patients complaining about very short appointments). At the very least, you should get the experience! Would it be appropriate for you to ask Dr. D to have a one-on-one conversation with Rob and steer him straight about the relative importance of meds? Do you think he'd be willing to give Rob a call at home? That might help. I think you're standing your ground in front of Rob will also make an important impression. has seen me politely (and OK, sometimes not so politely) question the docs and try to get an explanation (i.e. not blinding letting them put him on clonidine recently). I always try to do it with the sense that adults aren't always right (no surprise there) and asking educated questions instead of blindly following the doc allows you to take better care of yourself. Our guys are at that threshold of taking care of themselves - which is a scary thing to contemplate. As impossible as it sounds, I hope you guys have a peaceful weekend. Cy Re: Rob update > > I'm sorry I haven't been responding or posting very much. I do try to > read the posts, but have had trouble keeping up. I finally was able to > get a new computer, so that problem is solved. Unfortunately, the other > admissions nurse in my department was suspended, and then had a scheduled > vacation, so I have been working and on call for the last 10 out of 11 > days. It has been very hectic. > I did get Tuesday off to take Rob to his rheumatology and nephrology > appts. > Rob's regular nephrologist was out of town. I just love this doctor, Dr. > Devarajan. He is wonderful. Unfortunately, we had to go on and schedule > with another nephrologist in the group, because we have to travel 120 > miles to the appts for rheumy and neph, and I do not like to take Rob out > of school, so I wanted him to be seen during Christmas break. > This nephrologist, who had never seen Rob before, made me so mad I > thought I was going to blow a gasket! > We did have great news, the Cozaar is continuing to control the protein > and blood in his urine. We were so happy to hear about that! > The neph, on the other hand....started talking to Rob about how > proteinuria damages the kidneys. Then, he says, at some point, Rob could > go off the Cozaar just to see if the hematuria and proteinuria would > still occur. This led him into talking about how he knows that lots of > patients don't take their meds, and its ok if they do that, and he could > take a drug holiday during the summer, and just see what happens!! Rob, > of course, absolutely LOVED this idea. I was livid! I looked the neph > squarely in the eye, and said, I CANNOT BELIEVE that you just told an > ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and > then asked me if I was interested in having a definitive diagnosis. I > told him that Dr. D. was fairly sure of the Alport's diagnosis, and that > Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he > had not even gone completely through Robs chart and I had to fill him in > on many things. But, it was like he was out to undermine everything that > had taken place! Granted, it would be wonderful if Rob didn't have > Alports, but the biopsy clearly showed irregularities, and there is no > other explanation for what he has, other than diabetic nephropathy, and > we know he is not diabetic. So this guy was absolutely irritating and > maddening! I have been waiting to calm down (but I find that I just keep > getting madder!), I plan to email Dr. D and tell him just how disgusted I > was about what he told Rob. It is hard enough to get a teenager to take > his meds, and Rob also has an exercise regimen he must do to keep things > limber (because of the ankylosing spondylitis). He faces his spine fusing > in about 10 years. It is imperative that he diligently exercise in order > to prevent it fusing in a 'bad' position. Meds are the one thing Rob has > been compliant with, but the exercises, no. But at least he is compliant > with meds, that is until Dr. 'HELPFUL' told him no need! > The rheumy did read Rob the riot act about the exercises, so at least > SOMEONE cares if he is compliant!! > Ok, thanks for listening! > , mom to Rob, 15 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 To play devil's advocate just for a minute... I've been on " drug holidays " myself a number of times in the past during the 1990's - doctor's orders. You know, while an ACE inhibitor does reduce proteinuria, it also worsens kidney function a bit as it does it. In some patients, hopefully a very small minority, it can worsen kidney function by more than 30%, to the point that some people actually have to stop taking it. Some people have actually had acute kidney failure from taking an ACE inhibitor. Sometimes, it might be appropriate to see how a patient does without the drug, if something like this might be suspected. Sometimes it needs to be stopped because it just raises potassium too much. When you stop taking an ACE inhibitor, it's not like stopping some other BP meds. The blood pressure just goes back up to where it normally sits without medication. There's no dramatic rebound or anything like that. So, if a person doesn't have severely-elevated BP to begin with, a drug holiday should be perfectly safe. Sometimes, a drug holiday is forced on the person for another reason: drug washout. There are times when it might be necessary to stop taking a BP med for 2 or 3 weeks, long enough for it to washout completely, before trying another one. I don't think patients on BP meds should take drug holidays on their own, but if the doc says to stop taking it for a couple of weeks, that's a different story. One thing to remember about proteinuria is that there is a lot of natural variability there. It can go up, and then, it just resolves itself, medication or no medication. So, it's not like stopping the ACE inhibitor for a while will automatically cause a big jump. I can understand you being upset, but could it be that the nephrologist just didn't explain his intentions well? Of course, encouraging someone to not take a med on their own whenever they want is a different story. Pierre Re: Rob update > > I'm sorry I haven't been responding or posting very much. I do try to > read the posts, but have had trouble keeping up. I finally was able to > get a new computer, so that problem is solved. Unfortunately, the other > admissions nurse in my department was suspended, and then had a scheduled > vacation, so I have been working and on call for the last 10 out of 11 > days. It has been very hectic. > I did get Tuesday off to take Rob to his rheumatology and nephrology > appts. > Rob's regular nephrologist was out of town. I just love this doctor, Dr. > Devarajan. He is wonderful. Unfortunately, we had to go on and schedule > with another nephrologist in the group, because we have to travel 120 > miles to the appts for rheumy and neph, and I do not like to take Rob out > of school, so I wanted him to be seen during Christmas break. > This nephrologist, who had never seen Rob before, made me so mad I > thought I was going to blow a gasket! > We did have great news, the Cozaar is continuing to control the protein > and blood in his urine. We were so happy to hear about that! > The neph, on the other hand....started talking to Rob about how > proteinuria damages the kidneys. Then, he says, at some point, Rob could > go off the Cozaar just to see if the hematuria and proteinuria would > still occur. This led him into talking about how he knows that lots of > patients don't take their meds, and its ok if they do that, and he could > take a drug holiday during the summer, and just see what happens!! Rob, > of course, absolutely LOVED this idea. I was livid! I looked the neph > squarely in the eye, and said, I CANNOT BELIEVE that you just told an > ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and > then asked me if I was interested in having a definitive diagnosis. I > told him that Dr. D. was fairly sure of the Alport's diagnosis, and that > Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he > had not even gone completely through Robs chart and I had to fill him in > on many things. But, it was like he was out to undermine everything that > had taken place! Granted, it would be wonderful if Rob didn't have > Alports, but the biopsy clearly showed irregularities, and there is no > other explanation for what he has, other than diabetic nephropathy, and > we know he is not diabetic. So this guy was absolutely irritating and > maddening! I have been waiting to calm down (but I find that I just keep > getting madder!), I plan to email Dr. D and tell him just how disgusted I > was about what he told Rob. It is hard enough to get a teenager to take > his meds, and Rob also has an exercise regimen he must do to keep things > limber (because of the ankylosing spondylitis). He faces his spine fusing > in about 10 years. It is imperative that he diligently exercise in order > to prevent it fusing in a 'bad' position. Meds are the one thing Rob has > been compliant with, but the exercises, no. But at least he is compliant > with meds, that is until Dr. 'HELPFUL' told him no need! > The rheumy did read Rob the riot act about the exercises, so at least > SOMEONE cares if he is compliant!! > Ok, thanks for listening! > , mom to Rob, 15 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 To play devil's advocate just for a minute... I've been on " drug holidays " myself a number of times in the past during the 1990's - doctor's orders. You know, while an ACE inhibitor does reduce proteinuria, it also worsens kidney function a bit as it does it. In some patients, hopefully a very small minority, it can worsen kidney function by more than 30%, to the point that some people actually have to stop taking it. Some people have actually had acute kidney failure from taking an ACE inhibitor. Sometimes, it might be appropriate to see how a patient does without the drug, if something like this might be suspected. Sometimes it needs to be stopped because it just raises potassium too much. When you stop taking an ACE inhibitor, it's not like stopping some other BP meds. The blood pressure just goes back up to where it normally sits without medication. There's no dramatic rebound or anything like that. So, if a person doesn't have severely-elevated BP to begin with, a drug holiday should be perfectly safe. Sometimes, a drug holiday is forced on the person for another reason: drug washout. There are times when it might be necessary to stop taking a BP med for 2 or 3 weeks, long enough for it to washout completely, before trying another one. I don't think patients on BP meds should take drug holidays on their own, but if the doc says to stop taking it for a couple of weeks, that's a different story. One thing to remember about proteinuria is that there is a lot of natural variability there. It can go up, and then, it just resolves itself, medication or no medication. So, it's not like stopping the ACE inhibitor for a while will automatically cause a big jump. I can understand you being upset, but could it be that the nephrologist just didn't explain his intentions well? Of course, encouraging someone to not take a med on their own whenever they want is a different story. Pierre Re: Rob update > > I'm sorry I haven't been responding or posting very much. I do try to > read the posts, but have had trouble keeping up. I finally was able to > get a new computer, so that problem is solved. Unfortunately, the other > admissions nurse in my department was suspended, and then had a scheduled > vacation, so I have been working and on call for the last 10 out of 11 > days. It has been very hectic. > I did get Tuesday off to take Rob to his rheumatology and nephrology > appts. > Rob's regular nephrologist was out of town. I just love this doctor, Dr. > Devarajan. He is wonderful. Unfortunately, we had to go on and schedule > with another nephrologist in the group, because we have to travel 120 > miles to the appts for rheumy and neph, and I do not like to take Rob out > of school, so I wanted him to be seen during Christmas break. > This nephrologist, who had never seen Rob before, made me so mad I > thought I was going to blow a gasket! > We did have great news, the Cozaar is continuing to control the protein > and blood in his urine. We were so happy to hear about that! > The neph, on the other hand....started talking to Rob about how > proteinuria damages the kidneys. Then, he says, at some point, Rob could > go off the Cozaar just to see if the hematuria and proteinuria would > still occur. This led him into talking about how he knows that lots of > patients don't take their meds, and its ok if they do that, and he could > take a drug holiday during the summer, and just see what happens!! Rob, > of course, absolutely LOVED this idea. I was livid! I looked the neph > squarely in the eye, and said, I CANNOT BELIEVE that you just told an > ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and > then asked me if I was interested in having a definitive diagnosis. I > told him that Dr. D. was fairly sure of the Alport's diagnosis, and that > Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he > had not even gone completely through Robs chart and I had to fill him in > on many things. But, it was like he was out to undermine everything that > had taken place! Granted, it would be wonderful if Rob didn't have > Alports, but the biopsy clearly showed irregularities, and there is no > other explanation for what he has, other than diabetic nephropathy, and > we know he is not diabetic. So this guy was absolutely irritating and > maddening! I have been waiting to calm down (but I find that I just keep > getting madder!), I plan to email Dr. D and tell him just how disgusted I > was about what he told Rob. It is hard enough to get a teenager to take > his meds, and Rob also has an exercise regimen he must do to keep things > limber (because of the ankylosing spondylitis). He faces his spine fusing > in about 10 years. It is imperative that he diligently exercise in order > to prevent it fusing in a 'bad' position. Meds are the one thing Rob has > been compliant with, but the exercises, no. But at least he is compliant > with meds, that is until Dr. 'HELPFUL' told him no need! > The rheumy did read Rob the riot act about the exercises, so at least > SOMEONE cares if he is compliant!! > Ok, thanks for listening! > , mom to Rob, 15 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Forwarding Rob's neph's response to my complaint. He is such a professional, that I am sure he did not want to comment on my displeasure with his colleague. However, I know beyond a doubt that he will speak to him about my concerns.He has always gone out of his way to make sure that we were happy with their services. For now, I'll have another talk with Rob and make sure we always can schedule with Dr. D!! Thanks for all your thoughts on this subject. , mom to Rob, 15 (who had a remarkably light day at work today and is already back home!!! YEAH!) Hi , Thanks for writing. For now, the kidney biopsy electron microscopy is typical for Alport, but we have no way of absolutely confirming the diagnosis. The genetic testing is quite expensive, not covered by insurance companies, and can be inconclusive (just like the immunofluorescence testing that we went through). In the meanwhile, I am glad that the protein and blood in the urine have resolved with the Cozaar. Whatever the underlying diagnosis, I think it is important to continue the Cozaar for now. Cozaar seems to have a remarkable protective effect on the kidney, irrespective of the specific kidney disease. After a year or so on the cozaar, we may try a supervised discontinuation and see what happens. This means stopping the cozaar about 1 week before a scheduled visit with nephrology. I think that is what Dr. Goebel meant. For now, I am very pleased with Rob's response, and agree with a follow up visit in 6 months. Keep up the great work! Please let me know if he develops gross hematuria in the interim. We wish you and your family a wonderful 2005. Prasad Devarajan, M.D. Louise M. Professor of Pediatrics and Developmental Biology Director of Nephrology and Hypertension Cincinnati Children's Hospital Medical Center 3333 Burnet Avenue, MLC 7022 Cincinnati, OH 45229-3039 Fax Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 I'm so glad Rob responded well to the Cozaar. It's always good to have a drug that works! Congrats on getting home early. Cy Re: Rob update > > > Forwarding Rob's neph's response to my complaint. He is such a > professional, that I am sure he did not want to comment on my displeasure > with his colleague. However, I know beyond a doubt that he will speak to > him about my concerns.He has always gone out of his way to make sure that > we were happy with their services. For now, I'll have another talk with > Rob and make sure we always can schedule with Dr. D!! > Thanks for all your thoughts on this subject. > , mom to Rob, 15 > (who had a remarkably light day at work today and is already back home!!! > YEAH!) > > > Hi , > > Thanks for writing. For now, the kidney biopsy electron microscopy is > typical for Alport, but we have no way of absolutely confirming the > diagnosis. The genetic testing is quite expensive, not covered by > insurance companies, and can be inconclusive (just like the > immunofluorescence testing that we went through). In the meanwhile, I > am glad that the protein and blood in the urine have resolved with the > Cozaar. Whatever the underlying diagnosis, I think it is important to > continue the Cozaar for now. Cozaar seems to have a remarkable > protective effect on the kidney, irrespective of the specific kidney > disease. After a year or so on the cozaar, we may try a supervised > discontinuation and see what happens. This means stopping the cozaar > about 1 week before a scheduled visit with nephrology. I think that is > what Dr. Goebel meant. For now, I am very pleased with Rob's response, > and agree with a follow up visit in 6 months. Keep up the great work! > Please let me know if he develops gross hematuria in the interim. We > wish you and your family a wonderful 2005. > > Prasad Devarajan, M.D. > Louise M. Professor of Pediatrics > and Developmental Biology > Director of Nephrology and Hypertension > Cincinnati Children's Hospital Medical Center > 3333 Burnet Avenue, MLC 7022 > Cincinnati, OH 45229-3039 > > Fax > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Hi , my daughter also sees the nephrologists at Children's. We're scheduled to see Dr. Davarajan on the 22nd. I'm sorry you had such a horrible experience. I also feel it is very important that children know how important it is to take their meds as directed. I was curious to know which Doctor you saw? Tara, mom to Allie Beth Re: Rob update I'm sorry I haven't been responding or posting very much. I do try to read the posts, but have had trouble keeping up. I finally was able to get a new computer, so that problem is solved. Unfortunately, the other admissions nurse in my department was suspended, and then had a scheduled vacation, so I have been working and on call for the last 10 out of 11 days. It has been very hectic. I did get Tuesday off to take Rob to his rheumatology and nephrology appts. Rob's regular nephrologist was out of town. I just love this doctor, Dr. Devarajan. He is wonderful. Unfortunately, we had to go on and schedule with another nephrologist in the group, because we have to travel 120 miles to the appts for rheumy and neph, and I do not like to take Rob out of school, so I wanted him to be seen during Christmas break. This nephrologist, who had never seen Rob before, made me so mad I thought I was going to blow a gasket! We did have great news, the Cozaar is continuing to control the protein and blood in his urine. We were so happy to hear about that! The neph, on the other hand....started talking to Rob about how proteinuria damages the kidneys. Then, he says, at some point, Rob could go off the Cozaar just to see if the hematuria and proteinuria would still occur. This led him into talking about how he knows that lots of patients don't take their meds, and its ok if they do that, and he could take a drug holiday during the summer, and just see what happens!! Rob, of course, absolutely LOVED this idea. I was livid! I looked the neph squarely in the eye, and said, I CANNOT BELIEVE that you just told an ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and then asked me if I was interested in having a definitive diagnosis. I told him that Dr. D. was fairly sure of the Alport's diagnosis, and that Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he had not even gone completely through Robs chart and I had to fill him in on many things. But, it was like he was out to undermine everything that had taken place! Granted, it would be wonderful if Rob didn't have Alports, but the biopsy clearly showed irregularities, and there is no other explanation for what he has, other than diabetic nephropathy, and we know he is not diabetic. So this guy was absolutely irritating and maddening! I have been waiting to calm down (but I find that I just keep getting madder!), I plan to email Dr. D and tell him just how disgusted I was about what he told Rob. It is hard enough to get a teenager to take his meds, and Rob also has an exercise regimen he must do to keep things limber (because of the ankylosing spondylitis). He faces his spine fusing in about 10 years. It is imperative that he diligently exercise in order to prevent it fusing in a 'bad' position. Meds are the one thing Rob has been compliant with, but the exercises, no. But at least he is compliant with meds, that is until Dr. 'HELPFUL' told him no need! The rheumy did read Rob the riot act about the exercises, so at least SOMEONE cares if he is compliant!! Ok, thanks for listening! , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Hi , my daughter also sees the nephrologists at Children's. We're scheduled to see Dr. Davarajan on the 22nd. I'm sorry you had such a horrible experience. I also feel it is very important that children know how important it is to take their meds as directed. I was curious to know which Doctor you saw? Tara, mom to Allie Beth Re: Rob update I'm sorry I haven't been responding or posting very much. I do try to read the posts, but have had trouble keeping up. I finally was able to get a new computer, so that problem is solved. Unfortunately, the other admissions nurse in my department was suspended, and then had a scheduled vacation, so I have been working and on call for the last 10 out of 11 days. It has been very hectic. I did get Tuesday off to take Rob to his rheumatology and nephrology appts. Rob's regular nephrologist was out of town. I just love this doctor, Dr. Devarajan. He is wonderful. Unfortunately, we had to go on and schedule with another nephrologist in the group, because we have to travel 120 miles to the appts for rheumy and neph, and I do not like to take Rob out of school, so I wanted him to be seen during Christmas break. This nephrologist, who had never seen Rob before, made me so mad I thought I was going to blow a gasket! We did have great news, the Cozaar is continuing to control the protein and blood in his urine. We were so happy to hear about that! The neph, on the other hand....started talking to Rob about how proteinuria damages the kidneys. Then, he says, at some point, Rob could go off the Cozaar just to see if the hematuria and proteinuria would still occur. This led him into talking about how he knows that lots of patients don't take their meds, and its ok if they do that, and he could take a drug holiday during the summer, and just see what happens!! Rob, of course, absolutely LOVED this idea. I was livid! I looked the neph squarely in the eye, and said, I CANNOT BELIEVE that you just told an ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and then asked me if I was interested in having a definitive diagnosis. I told him that Dr. D. was fairly sure of the Alport's diagnosis, and that Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he had not even gone completely through Robs chart and I had to fill him in on many things. But, it was like he was out to undermine everything that had taken place! Granted, it would be wonderful if Rob didn't have Alports, but the biopsy clearly showed irregularities, and there is no other explanation for what he has, other than diabetic nephropathy, and we know he is not diabetic. So this guy was absolutely irritating and maddening! I have been waiting to calm down (but I find that I just keep getting madder!), I plan to email Dr. D and tell him just how disgusted I was about what he told Rob. It is hard enough to get a teenager to take his meds, and Rob also has an exercise regimen he must do to keep things limber (because of the ankylosing spondylitis). He faces his spine fusing in about 10 years. It is imperative that he diligently exercise in order to prevent it fusing in a 'bad' position. Meds are the one thing Rob has been compliant with, but the exercises, no. But at least he is compliant with meds, that is until Dr. 'HELPFUL' told him no need! The rheumy did read Rob the riot act about the exercises, so at least SOMEONE cares if he is compliant!! Ok, thanks for listening! , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 14, 2005 Report Share Posted January 14, 2005 Hi , my daughter also sees the nephrologists at Children's. We're scheduled to see Dr. Davarajan on the 22nd. I'm sorry you had such a horrible experience. I also feel it is very important that children know how important it is to take their meds as directed. I was curious to know which Doctor you saw? Tara, mom to Allie Beth Re: Rob update I'm sorry I haven't been responding or posting very much. I do try to read the posts, but have had trouble keeping up. I finally was able to get a new computer, so that problem is solved. Unfortunately, the other admissions nurse in my department was suspended, and then had a scheduled vacation, so I have been working and on call for the last 10 out of 11 days. It has been very hectic. I did get Tuesday off to take Rob to his rheumatology and nephrology appts. Rob's regular nephrologist was out of town. I just love this doctor, Dr. Devarajan. He is wonderful. Unfortunately, we had to go on and schedule with another nephrologist in the group, because we have to travel 120 miles to the appts for rheumy and neph, and I do not like to take Rob out of school, so I wanted him to be seen during Christmas break. This nephrologist, who had never seen Rob before, made me so mad I thought I was going to blow a gasket! We did have great news, the Cozaar is continuing to control the protein and blood in his urine. We were so happy to hear about that! The neph, on the other hand....started talking to Rob about how proteinuria damages the kidneys. Then, he says, at some point, Rob could go off the Cozaar just to see if the hematuria and proteinuria would still occur. This led him into talking about how he knows that lots of patients don't take their meds, and its ok if they do that, and he could take a drug holiday during the summer, and just see what happens!! Rob, of course, absolutely LOVED this idea. I was livid! I looked the neph squarely in the eye, and said, I CANNOT BELIEVE that you just told an ADOLESCENT that its ok not to take meds! He hemmed and hawed around, and then asked me if I was interested in having a definitive diagnosis. I told him that Dr. D. was fairly sure of the Alport's diagnosis, and that Dr. Kashtan of U Minn agreed, and he poo pooed that too. Of course, he had not even gone completely through Robs chart and I had to fill him in on many things. But, it was like he was out to undermine everything that had taken place! Granted, it would be wonderful if Rob didn't have Alports, but the biopsy clearly showed irregularities, and there is no other explanation for what he has, other than diabetic nephropathy, and we know he is not diabetic. So this guy was absolutely irritating and maddening! I have been waiting to calm down (but I find that I just keep getting madder!), I plan to email Dr. D and tell him just how disgusted I was about what he told Rob. It is hard enough to get a teenager to take his meds, and Rob also has an exercise regimen he must do to keep things limber (because of the ankylosing spondylitis). He faces his spine fusing in about 10 years. It is imperative that he diligently exercise in order to prevent it fusing in a 'bad' position. Meds are the one thing Rob has been compliant with, but the exercises, no. But at least he is compliant with meds, that is until Dr. 'HELPFUL' told him no need! The rheumy did read Rob the riot act about the exercises, so at least SOMEONE cares if he is compliant!! Ok, thanks for listening! , mom to Rob, 15 Quote Link to comment Share on other sites More sharing options...
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