Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 All I can say is that in my experience, the risks of a transplant were very well-explained by the transplant coordinator herself, and by the transplant nephrologist. They pretty much have to do this. They also told me all about what they call the " half-life " of the various kidneys based on donor type. Half-life means the time it takes on average for 50% of the transplanted kidneys to fail. They also pretty much have to explain this to you, because a transplant is NOT something you HAVE to sign up for. It's a choice, unlike dialysis (you can choose your method of dialysis, but you don't really " choose " dialysis if you need it). Since it's a choice, you do need to know all the pros and cons. Also, they certainly will explain the advantages of a live donor transplant as opposed to the disadvantages of a " cadaveric " transplant from the waiting list. But, it wasn't explained to me in the kind of pessimistic way you describe. All the nephrologists I know are very enthusiastic about a kidney transplant being the best treatment option for most patients, and particular IgAN patients who are usually pretty healthy otherwise. There's not much point in having the risks of dialysis explained when you're about to start dialysis, because, after all, what the heck can you do about it? Unless you happen to have a new kidney lined up, you don't have a choice, other than death. I think that if the doctor in charge or anyone there said " our patients generally don't do well on dialysis " , I might be inclined to find another dialysis centre where they take better care of their patients. There's no reason not to do well on dialysis, but any nephrologist you talk to will almost certainly advise you to get a transplant if you can. You're not doomed because you have kidney failure, but, I mean, you are closer to being doomed than if you didn't have kidney failure. That's just a fact of life. It doesn't mean that it has to be approached with doom and gloom in mind, no more than you climb aboard an airliner expecting to crash. Pierre Negative Data > I have some negative information imparted to me recently from a > Doctor who is the head of a nephrology dept. at a local Dallas > hospital, regarding my future placement on a dialysis program there. > The individual states that I " should have a transplant as soon as > possible " , and that " our patients don't generally do well on > dialysis " , and that " some have to be hospitalized soon after > dialysis " . This individual would not even discuss dialysis with me, > only transplant, even after being informed of my newly constructed > fistula. I do not understand this. I asked him about the data that > says that the average 'cadaver' transplant only lasts for about 8-10 > years, seeing as how I have nobody to do a 'live' donation with. He > then started being negative about even the transplant: saying that > the 'cadaver' transplants come with allot of complications also, > such as the trauma to the kidney caused by the reason for the > donor's death; and the kidney having to be kept on ice for a number > of hours, etc. I do not understand this either. Shouldn't a Doctor > have a positive 'bedside manner' and encourage his patients, instead > of making them feel as if they are basicly doomed? Don't mean to > scare anyone, but this info. really was just imparted to me by this > person. I am wondering if there is any truth to any of it? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I am glad you responded to this posting. I would think that many would be scared to. I am not scared of my Doctor, not yet anyways. I have no intention of identifying him either, as I do want to have any legal problems. I agree to everything you said. Maybe he was just trying to 'scare' me into getting a transplant. But if that is the only psychology he can think of using then he obviously knows very little about psycholgy! The problem I have is that I was under the impression that this hospital was my only option if I did not want to be charged a hefty sum of money for the first few months of dialysis treatments. I am not sure when medicare starts paying for them, but I believe it takes a while. As a result of being basicly 'indigent' I cannot pay for them myself. I would actually much rather have them done somewhere else. Any ideas about this? > All I can say is that in my experience, the risks of a transplant were very > well-explained by the transplant coordinator herself, and by the transplant > nephrologist. They pretty much have to do this. They also told me all about > what they call the " half-life " of the various kidneys based on donor type. > Half-life means the time it takes on average for 50% of the transplanted > kidneys to fail. They also pretty much have to explain this to you, because > a transplant is NOT something you HAVE to sign up for. It's a choice, unlike > dialysis (you can choose your method of dialysis, but you don't really > " choose " dialysis if you need it). Since it's a choice, you do need to know > all the pros and cons. Also, they certainly will explain the advantages of a > live donor transplant as opposed to the disadvantages of a " cadaveric " > transplant from the waiting list. > > But, it wasn't explained to me in the kind of pessimistic way you describe. > All the nephrologists I know are very enthusiastic about a kidney transplant > being the best treatment option for most patients, and particular IgAN > patients who are usually pretty healthy otherwise. > > There's not much point in having the risks of dialysis explained when you're > about to start dialysis, because, after all, what the heck can you do about > it? Unless you happen to have a new kidney lined up, you don't have a > choice, other than death. I think that if the doctor in charge or anyone > there said " our patients generally don't do well on dialysis " , I might be > inclined to find another dialysis centre where they take better care of > their patients. There's no reason not to do well on dialysis, but any > nephrologist you talk to will almost certainly advise you to get a > transplant if you can. > > You're not doomed because you have kidney failure, but, I mean, you are > closer to being doomed than if you didn't have kidney failure. That's just a > fact of life. It doesn't mean that it has to be approached with doom and > gloom in mind, no more than you climb aboard an airliner expecting to crash. > > Pierre > > Negative Data > > > > I have some negative information imparted to me recently from a > > Doctor who is the head of a nephrology dept. at a local Dallas > > hospital, regarding my future placement on a dialysis program there. > > The individual states that I " should have a transplant as soon as > > possible " , and that " our patients don't generally do well on > > dialysis " , and that " some have to be hospitalized soon after > > dialysis " . This individual would not even discuss dialysis with me, > > only transplant, even after being informed of my newly constructed > > fistula. I do not understand this. I asked him about the data that > > says that the average 'cadaver' transplant only lasts for about 8-10 > > years, seeing as how I have nobody to do a 'live' donation with. He > > then started being negative about even the transplant: saying that > > the 'cadaver' transplants come with allot of complications also, > > such as the trauma to the kidney caused by the reason for the > > donor's death; and the kidney having to be kept on ice for a number > > of hours, etc. I do not understand this either. Shouldn't a Doctor > > have a positive 'bedside manner' and encourage his patients, instead > > of making them feel as if they are basicly doomed? Don't mean to > > scare anyone, but this info. really was just imparted to me by this > > person. I am wondering if there is any truth to any of it? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I am glad you responded to this posting. I would think that many would be scared to. I am not scared of my Doctor, not yet anyways. I have no intention of identifying him either, as I do want to have any legal problems. I agree to everything you said. Maybe he was just trying to 'scare' me into getting a transplant. But if that is the only psychology he can think of using then he obviously knows very little about psycholgy! The problem I have is that I was under the impression that this hospital was my only option if I did not want to be charged a hefty sum of money for the first few months of dialysis treatments. I am not sure when medicare starts paying for them, but I believe it takes a while. As a result of being basicly 'indigent' I cannot pay for them myself. I would actually much rather have them done somewhere else. Any ideas about this? > All I can say is that in my experience, the risks of a transplant were very > well-explained by the transplant coordinator herself, and by the transplant > nephrologist. They pretty much have to do this. They also told me all about > what they call the " half-life " of the various kidneys based on donor type. > Half-life means the time it takes on average for 50% of the transplanted > kidneys to fail. They also pretty much have to explain this to you, because > a transplant is NOT something you HAVE to sign up for. It's a choice, unlike > dialysis (you can choose your method of dialysis, but you don't really > " choose " dialysis if you need it). Since it's a choice, you do need to know > all the pros and cons. Also, they certainly will explain the advantages of a > live donor transplant as opposed to the disadvantages of a " cadaveric " > transplant from the waiting list. > > But, it wasn't explained to me in the kind of pessimistic way you describe. > All the nephrologists I know are very enthusiastic about a kidney transplant > being the best treatment option for most patients, and particular IgAN > patients who are usually pretty healthy otherwise. > > There's not much point in having the risks of dialysis explained when you're > about to start dialysis, because, after all, what the heck can you do about > it? Unless you happen to have a new kidney lined up, you don't have a > choice, other than death. I think that if the doctor in charge or anyone > there said " our patients generally don't do well on dialysis " , I might be > inclined to find another dialysis centre where they take better care of > their patients. There's no reason not to do well on dialysis, but any > nephrologist you talk to will almost certainly advise you to get a > transplant if you can. > > You're not doomed because you have kidney failure, but, I mean, you are > closer to being doomed than if you didn't have kidney failure. That's just a > fact of life. It doesn't mean that it has to be approached with doom and > gloom in mind, no more than you climb aboard an airliner expecting to crash. > > Pierre > > Negative Data > > > > I have some negative information imparted to me recently from a > > Doctor who is the head of a nephrology dept. at a local Dallas > > hospital, regarding my future placement on a dialysis program there. > > The individual states that I " should have a transplant as soon as > > possible " , and that " our patients don't generally do well on > > dialysis " , and that " some have to be hospitalized soon after > > dialysis " . This individual would not even discuss dialysis with me, > > only transplant, even after being informed of my newly constructed > > fistula. I do not understand this. I asked him about the data that > > says that the average 'cadaver' transplant only lasts for about 8-10 > > years, seeing as how I have nobody to do a 'live' donation with. He > > then started being negative about even the transplant: saying that > > the 'cadaver' transplants come with allot of complications also, > > such as the trauma to the kidney caused by the reason for the > > donor's death; and the kidney having to be kept on ice for a number > > of hours, etc. I do not understand this either. Shouldn't a Doctor > > have a positive 'bedside manner' and encourage his patients, instead > > of making them feel as if they are basicly doomed? Don't mean to > > scare anyone, but this info. really was just imparted to me by this > > person. I am wondering if there is any truth to any of it? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I am glad you responded to this posting. I would think that many would be scared to. I am not scared of my Doctor, not yet anyways. I have no intention of identifying him either, as I do want to have any legal problems. I agree to everything you said. Maybe he was just trying to 'scare' me into getting a transplant. But if that is the only psychology he can think of using then he obviously knows very little about psycholgy! The problem I have is that I was under the impression that this hospital was my only option if I did not want to be charged a hefty sum of money for the first few months of dialysis treatments. I am not sure when medicare starts paying for them, but I believe it takes a while. As a result of being basicly 'indigent' I cannot pay for them myself. I would actually much rather have them done somewhere else. Any ideas about this? > All I can say is that in my experience, the risks of a transplant were very > well-explained by the transplant coordinator herself, and by the transplant > nephrologist. They pretty much have to do this. They also told me all about > what they call the " half-life " of the various kidneys based on donor type. > Half-life means the time it takes on average for 50% of the transplanted > kidneys to fail. They also pretty much have to explain this to you, because > a transplant is NOT something you HAVE to sign up for. It's a choice, unlike > dialysis (you can choose your method of dialysis, but you don't really > " choose " dialysis if you need it). Since it's a choice, you do need to know > all the pros and cons. Also, they certainly will explain the advantages of a > live donor transplant as opposed to the disadvantages of a " cadaveric " > transplant from the waiting list. > > But, it wasn't explained to me in the kind of pessimistic way you describe. > All the nephrologists I know are very enthusiastic about a kidney transplant > being the best treatment option for most patients, and particular IgAN > patients who are usually pretty healthy otherwise. > > There's not much point in having the risks of dialysis explained when you're > about to start dialysis, because, after all, what the heck can you do about > it? Unless you happen to have a new kidney lined up, you don't have a > choice, other than death. I think that if the doctor in charge or anyone > there said " our patients generally don't do well on dialysis " , I might be > inclined to find another dialysis centre where they take better care of > their patients. There's no reason not to do well on dialysis, but any > nephrologist you talk to will almost certainly advise you to get a > transplant if you can. > > You're not doomed because you have kidney failure, but, I mean, you are > closer to being doomed than if you didn't have kidney failure. That's just a > fact of life. It doesn't mean that it has to be approached with doom and > gloom in mind, no more than you climb aboard an airliner expecting to crash. > > Pierre > > Negative Data > > > > I have some negative information imparted to me recently from a > > Doctor who is the head of a nephrology dept. at a local Dallas > > hospital, regarding my future placement on a dialysis program there. > > The individual states that I " should have a transplant as soon as > > possible " , and that " our patients don't generally do well on > > dialysis " , and that " some have to be hospitalized soon after > > dialysis " . This individual would not even discuss dialysis with me, > > only transplant, even after being informed of my newly constructed > > fistula. I do not understand this. I asked him about the data that > > says that the average 'cadaver' transplant only lasts for about 8-10 > > years, seeing as how I have nobody to do a 'live' donation with. He > > then started being negative about even the transplant: saying that > > the 'cadaver' transplants come with allot of complications also, > > such as the trauma to the kidney caused by the reason for the > > donor's death; and the kidney having to be kept on ice for a number > > of hours, etc. I do not understand this either. Shouldn't a Doctor > > have a positive 'bedside manner' and encourage his patients, instead > > of making them feel as if they are basicly doomed? Don't mean to > > scare anyone, but this info. really was just imparted to me by this > > person. I am wondering if there is any truth to any of it? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2004 Report Share Posted July 3, 2004 I have to agree with Pierre on this. It strikes me as very odd that he would approach this in such a negative manner. I mean you are set for dialysis it's not like you have a major choice to have it done or not if you don't have a kidney waiting in the wings. I personally would be very uncomfortable with a doctor like that and would look into what I needed to do to switch. When you say that you thought you could only go to one hospital....does that mean you have insurance that is covering things until Medicare kicks in? If so call their customer service line, tell them your concerns and ask if there is another doctor and hospital/dialysis center you can go to. Most insurance have a " main " hospital they like to work with but normally they will cover for other hospitals in the area too. I know my insurance wants me to use one hospital I absolutely dislike so everytime I need to go I just call their customer service and let them know I'm using the other hospital they approve of but don't tell people about unless you call and ask. So if I were you I'd start with a call to your insurance company to find out if they really won't cover anywhere else. Good luck and I hope you can find a doctor who is interested in your health! Amy Negative Data > > > > > > > I have some negative information imparted to me recently from a > > > Doctor who is the head of a nephrology dept. at a local Dallas > > > hospital, regarding my future placement on a dialysis program > there. > > > The individual states that I " should have a transplant as soon as > > > possible " , and that " our patients don't generally do well on > > > dialysis " , and that " some have to be hospitalized soon after > > > dialysis " . This individual would not even discuss dialysis with > me, > > > only transplant, even after being informed of my newly > constructed > > > fistula. I do not understand this. I asked him about the data > that > > > says that the average 'cadaver' transplant only lasts for about > 8-10 > > > years, seeing as how I have nobody to do a 'live' donation with. > He > > > then started being negative about even the transplant: saying > that > > > the 'cadaver' transplants come with allot of complications also, > > > such as the trauma to the kidney caused by the reason for the > > > donor's death; and the kidney having to be kept on ice for a > number > > > of hours, etc. I do not understand this either. Shouldn't a > Doctor > > > have a positive 'bedside manner' and encourage his patients, > instead > > > of making them feel as if they are basicly doomed? Don't mean to > > > scare anyone, but this info. really was just imparted to me by > this > > > person. I am wondering if there is any truth to any of it? > > > > > > > > > > > > > > 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 July 3, 2004 Report Share Posted July 3, 2004 I have to agree with Pierre on this. It strikes me as very odd that he would approach this in such a negative manner. I mean you are set for dialysis it's not like you have a major choice to have it done or not if you don't have a kidney waiting in the wings. I personally would be very uncomfortable with a doctor like that and would look into what I needed to do to switch. When you say that you thought you could only go to one hospital....does that mean you have insurance that is covering things until Medicare kicks in? If so call their customer service line, tell them your concerns and ask if there is another doctor and hospital/dialysis center you can go to. Most insurance have a " main " hospital they like to work with but normally they will cover for other hospitals in the area too. I know my insurance wants me to use one hospital I absolutely dislike so everytime I need to go I just call their customer service and let them know I'm using the other hospital they approve of but don't tell people about unless you call and ask. So if I were you I'd start with a call to your insurance company to find out if they really won't cover anywhere else. Good luck and I hope you can find a doctor who is interested in your health! Amy Negative Data > > > > > > > I have some negative information imparted to me recently from a > > > Doctor who is the head of a nephrology dept. at a local Dallas > > > hospital, regarding my future placement on a dialysis program > there. > > > The individual states that I " should have a transplant as soon as > > > possible " , and that " our patients don't generally do well on > > > dialysis " , and that " some have to be hospitalized soon after > > > dialysis " . This individual would not even discuss dialysis with > me, > > > only transplant, even after being informed of my newly > constructed > > > fistula. I do not understand this. I asked him about the data > that > > > says that the average 'cadaver' transplant only lasts for about > 8-10 > > > years, seeing as how I have nobody to do a 'live' donation with. > He > > > then started being negative about even the transplant: saying > that > > > the 'cadaver' transplants come with allot of complications also, > > > such as the trauma to the kidney caused by the reason for the > > > donor's death; and the kidney having to be kept on ice for a > number > > > of hours, etc. I do not understand this either. Shouldn't a > Doctor > > > have a positive 'bedside manner' and encourage his patients, > instead > > > of making them feel as if they are basicly doomed? Don't mean to > > > scare anyone, but this info. really was just imparted to me by > this > > > person. I am wondering if there is any truth to any of it? > > > > > > > > > > > > > > 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 July 5, 2004 Report Share Posted July 5, 2004 , That is just terrible that your doctor is being so negative. I am a strong believer in being positive and my Nephrologist is too. Mine has a patient doing excellent who has been on dialysis for 30 years. I think that with IgAN, the statistics are different than for general kidney failure. People with IgAN are typically in fairly good health and in good condition otherwise as compared to those whose kidneys fail for other reasons such as diabetes, so the data for IgAN patients IS better than for general dialysis and general transplant patients. Please do not let this doctor get to you! In a message dated 7/3/2004 12:50:54 PM Eastern Daylight Time, " Aldrich " writes: >I have some negative information imparted to me recently from a >Doctor who is the head of a nephrology dept. at a local Dallas >hospital, regarding my future placement on a dialysis program there. >The individual states that I " should have a transplant as soon as >possible " , and that " our patients don't generally do well on >dialysis " , and that " some have to be hospitalized soon after >dialysis " . This individual would not even discuss dialysis with me, >only transplant, even after being informed of my newly constructed >fistula. I do not understand this. I asked him about the data that >says that the average 'cadaver' transplant only lasts for about 8-10 >years, seeing as how I have nobody to do a 'live' donation with. He >then started being negative about even the transplant: saying that >the 'cadaver' transplants come with allot of complications also, >such as the trauma to the kidney caused by the reason for the >donor's death; and the kidney having to be kept on ice for a number >of hours, etc. I do not understand this either. Shouldn't a Doctor >have a positive 'bedside manner' and encourage his patients, instead >of making them feel as if they are basicly doomed? Don't mean to >scare anyone, but this info. really was just imparted to me by this >person. I am wondering if there is any truth to any of it? > > > > >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 July 5, 2004 Report Share Posted July 5, 2004 , That is just terrible that your doctor is being so negative. I am a strong believer in being positive and my Nephrologist is too. Mine has a patient doing excellent who has been on dialysis for 30 years. I think that with IgAN, the statistics are different than for general kidney failure. People with IgAN are typically in fairly good health and in good condition otherwise as compared to those whose kidneys fail for other reasons such as diabetes, so the data for IgAN patients IS better than for general dialysis and general transplant patients. Please do not let this doctor get to you! In a message dated 7/3/2004 12:50:54 PM Eastern Daylight Time, " Aldrich " writes: >I have some negative information imparted to me recently from a >Doctor who is the head of a nephrology dept. at a local Dallas >hospital, regarding my future placement on a dialysis program there. >The individual states that I " should have a transplant as soon as >possible " , and that " our patients don't generally do well on >dialysis " , and that " some have to be hospitalized soon after >dialysis " . This individual would not even discuss dialysis with me, >only transplant, even after being informed of my newly constructed >fistula. I do not understand this. I asked him about the data that >says that the average 'cadaver' transplant only lasts for about 8-10 >years, seeing as how I have nobody to do a 'live' donation with. He >then started being negative about even the transplant: saying that >the 'cadaver' transplants come with allot of complications also, >such as the trauma to the kidney caused by the reason for the >donor's death; and the kidney having to be kept on ice for a number >of hours, etc. I do not understand this either. Shouldn't a Doctor >have a positive 'bedside manner' and encourage his patients, instead >of making them feel as if they are basicly doomed? Don't mean to >scare anyone, but this info. really was just imparted to me by this >person. I am wondering if there is any truth to any of it? > > > > >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 July 5, 2004 Report Share Posted July 5, 2004 , That is just terrible that your doctor is being so negative. I am a strong believer in being positive and my Nephrologist is too. Mine has a patient doing excellent who has been on dialysis for 30 years. I think that with IgAN, the statistics are different than for general kidney failure. People with IgAN are typically in fairly good health and in good condition otherwise as compared to those whose kidneys fail for other reasons such as diabetes, so the data for IgAN patients IS better than for general dialysis and general transplant patients. Please do not let this doctor get to you! In a message dated 7/3/2004 12:50:54 PM Eastern Daylight Time, " Aldrich " writes: >I have some negative information imparted to me recently from a >Doctor who is the head of a nephrology dept. at a local Dallas >hospital, regarding my future placement on a dialysis program there. >The individual states that I " should have a transplant as soon as >possible " , and that " our patients don't generally do well on >dialysis " , and that " some have to be hospitalized soon after >dialysis " . This individual would not even discuss dialysis with me, >only transplant, even after being informed of my newly constructed >fistula. I do not understand this. I asked him about the data that >says that the average 'cadaver' transplant only lasts for about 8-10 >years, seeing as how I have nobody to do a 'live' donation with. He >then started being negative about even the transplant: saying that >the 'cadaver' transplants come with allot of complications also, >such as the trauma to the kidney caused by the reason for the >donor's death; and the kidney having to be kept on ice for a number >of hours, etc. I do not understand this either. Shouldn't a Doctor >have a positive 'bedside manner' and encourage his patients, instead >of making them feel as if they are basicly doomed? Don't mean to >scare anyone, but this info. really was just imparted to me by this >person. I am wondering if there is any truth to any of it? > > > > >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...
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