Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 There are some risks in all intrusive medical procedures. ERCP is a save procedure, I had three in the last year. It is a somewhat uncomfortable procedure, your throat hurts afterwards, there are possibilities of infections (I never had a problem with that, but I read here that some people did). I would say that the risks are minimal compared to the possitive results an ERCP can have. The doctors can improve their understanding of the strictures in your husbands bile ducts, they can place stents if necessary, they can cut tissue, the can do a sphincterectomy if necessary, they can use a balloon to open the bile ducts and thus reduce symptoms. I am probably forgetting a few more options. Since my last ERCP I am totally symptom free and my blood test results are close to normal. This does not mean of course that this will happen to your husband as well, that depends entirely on his stage of PSC, but it is possible to improve your husbands condition with an ERCP and to improve the understanding of the strictures. My experience with ERCP is a possitive one. an -----Original Message-----From: [mailto: ]On Behalf Of prichsySent: Tuesday, October 17, 2006 8:17 AMTo: Subject: ERCP How dangerous is ERCP ?Hubby it is very sick and doc says we need an urgent ERCP... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 There are some risks in all intrusive medical procedures. ERCP is a save procedure, I had three in the last year. It is a somewhat uncomfortable procedure, your throat hurts afterwards, there are possibilities of infections (I never had a problem with that, but I read here that some people did). I would say that the risks are minimal compared to the possitive results an ERCP can have. The doctors can improve their understanding of the strictures in your husbands bile ducts, they can place stents if necessary, they can cut tissue, the can do a sphincterectomy if necessary, they can use a balloon to open the bile ducts and thus reduce symptoms. I am probably forgetting a few more options. Since my last ERCP I am totally symptom free and my blood test results are close to normal. This does not mean of course that this will happen to your husband as well, that depends entirely on his stage of PSC, but it is possible to improve your husbands condition with an ERCP and to improve the understanding of the strictures. My experience with ERCP is a possitive one. an -----Original Message-----From: [mailto: ]On Behalf Of prichsySent: Tuesday, October 17, 2006 8:17 AMTo: Subject: ERCP How dangerous is ERCP ?Hubby it is very sick and doc says we need an urgent ERCP... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 > > How dangerous is ERCP ? > Hubby it is very sick and doc says we need an urgent ERCP... > AS long as your doc is good I wd take his advice. I have had ERCP's both with sedation and without. The advantage without is that you can drive yourself home afterwards but its not pleasant. There are risks with it but if its urgent and you don't have it what are the risks then. I think the important thing is having a top doc you can trust at the end of the day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Same here (symptom-free since ERCP in 2001). Biggest risk is pancreatitis (I've gotten it 2 of 3 times), but it's almost always reversible, and the benefits outweigh the risks, for me. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Chaim Boermeester ....Since my last ERCP I am totally symptom free and my blood test results are close to normal. This does not mean of course that this will happen to your husband as well, that depends entirely on his stage of PSC, but it is possible to improve your husbands condition with an ERCP and to improve the understanding of the strictures. My experience with ERCP is a possitive one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Same here (symptom-free since ERCP in 2001). Biggest risk is pancreatitis (I've gotten it 2 of 3 times), but it's almost always reversible, and the benefits outweigh the risks, for me. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Chaim Boermeester ....Since my last ERCP I am totally symptom free and my blood test results are close to normal. This does not mean of course that this will happen to your husband as well, that depends entirely on his stage of PSC, but it is possible to improve your husbands condition with an ERCP and to improve the understanding of the strictures. My experience with ERCP is a possitive one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Same here (symptom-free since ERCP in 2001). Biggest risk is pancreatitis (I've gotten it 2 of 3 times), but it's almost always reversible, and the benefits outweigh the risks, for me. Arne 55 - UC 1977, PSC 2000 Alive and (mostly) well in Minnesota ________________________________ From: [mailto: ] On Behalf Of Chaim Boermeester ....Since my last ERCP I am totally symptom free and my blood test results are close to normal. This does not mean of course that this will happen to your husband as well, that depends entirely on his stage of PSC, but it is possible to improve your husbands condition with an ERCP and to improve the understanding of the strictures. My experience with ERCP is a possitive one. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Thanks for that.Helps tremendously. When the blood test results are close to normal, does it mean that the PSC is giving up ? Does normal tests mean we are in remission ? OR is it that the bile ducts/liver can keep acting up inspite of good blood tests ? Am asking because hubby has been diagnosed very recently. He was diagnosed with UC approx 5-6 yrs ago and his liver tests then weren't good.We were then told that it simply must be becoz of UC.Then the liver tests got much better and then worse again and so on and so forth.No tests were done as it kept getting better. This time he presented with severe jaundice, itching. fever, tiredness, drowsiness, etc and the blood tests are absolutely ROTTON. ALP is 1069 and so on and so forth. Ultrasound done, MRI done and PSC diagnosed. Noone knows but I keep wondering whether this means he has had PSC since the 1st bad blood test or the last... 's > > There are some risks in all intrusive medical procedures. ERCP is a save > procedure, I had three in the last year. It is a somewhat uncomfortable > procedure, your throat hurts afterwards, there are possibilities of > infections (I never had a problem with that, but I read here that some > people did). I would say that the risks are minimal compared to the > possitive results an ERCP can have. The doctors can improve their > understanding of the strictures in your husbands bile ducts, they can place > stents if necessary, they can cut tissue, the can do a sphincterectomy if > necessary, they can use a balloon to open the bile ducts and thus reduce > symptoms. I am probably forgetting a few more options. Since my last ERCP I > am totally symptom free and my blood test results are close to normal. This > does not mean of course that this will happen to your husband as well, that > depends entirely on his stage of PSC, but it is possible to improve your > husbands condition with an ERCP and to improve the understanding of the > strictures. My experience with ERCP is a possitive one. > > an ERCP > > > How dangerous is ERCP ? > Hubby it is very sick and doc says we need an urgent ERCP... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi, Prichsy. My husband has never had an ERCP but from what I gather from reading the posts there are two things you can do to make ERCP safer: 1) make sure your husband gets antibiotics before, during and after; and 2) make sure the person doing the ERCP has extensive experience with the procedure. Again, my husband has never had one but I've been keeping notes for when he does and that's what I've got. Anyone else? Thanks, Nina husband PSC 4/06 > How dangerous is ERCP ? > Hubby it is very sick and doc says we need an urgent ERCP... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi, Prichsy. My husband has never had an ERCP but from what I gather from reading the posts there are two things you can do to make ERCP safer: 1) make sure your husband gets antibiotics before, during and after; and 2) make sure the person doing the ERCP has extensive experience with the procedure. Again, my husband has never had one but I've been keeping notes for when he does and that's what I've got. Anyone else? Thanks, Nina husband PSC 4/06 > How dangerous is ERCP ? > Hubby it is very sick and doc says we need an urgent ERCP... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Hi, Prichsy. My husband has never had an ERCP but from what I gather from reading the posts there are two things you can do to make ERCP safer: 1) make sure your husband gets antibiotics before, during and after; and 2) make sure the person doing the ERCP has extensive experience with the procedure. Again, my husband has never had one but I've been keeping notes for when he does and that's what I've got. Anyone else? Thanks, Nina husband PSC 4/06 > How dangerous is ERCP ? > Hubby it is very sick and doc says we need an urgent ERCP... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 The rule of thumb is that PSC probably started 10 years before you start showing symptoms. Obviously, that's not true in all cases. Remission doesn't really apply, since the bile duct damage has already occurred once symptoms present. However, it does appear that PSC advances at a significantly slower rate in some people, sometimes so slow that transplant is never necessary (or even symptoms never present!). There are people on this forum that have had PSC for 30+ years. It is thought that PSC is much more prevalent than the numbers would indicate, primarily because of the self-healing properties of the liver, and the very slow progression in some people. If we only knew why. Arne ============================================================ ....When the blood test results are close to normal, does it mean that the PSC is giving up ? Does normal tests mean we are in remission ? OR is it that the bile ducts/liver can keep acting up inspite of good blood tests ?.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 In my humble opinion it means that the blockage is temporarily fixed. If the progress of the PSC is slow, this may mean that the next blockage will be only in a few years, if the progress is fast it can be a lot sooner. I haven't heard yet of PSC giving up or being in remission. Progress can be slow. My understanding is that good blood test are an indication that there is no blockage at the time of the blood test. There are a few indicators in blood tests that give an indication of liver damage (they are by-products of dying liver cells), but I am not sure which ones they are. I can't diagnose your husband from here of course, I am no doc either, but his symptoms sound like PSC to me. I also had the fluctuating bloodtests until my gall bladder was removed and the ERCPs were done. At this moment in time my bile ducts seem to be open, judging by the blood tests. My PSC was detected when my wife insisted in 2001 I take a routine bloodtest, you know how wifes are ;-). It took them a while to figure out what the problem was (2003) and it took me a while to develop symptoms (2005). I do not have UC as far as I know. Sorry, no uplifting news this time. ERCP> > > How dangerous is ERCP ?> Hubby it is very sick and doc says we need an urgent ERCP...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 In my humble opinion it means that the blockage is temporarily fixed. If the progress of the PSC is slow, this may mean that the next blockage will be only in a few years, if the progress is fast it can be a lot sooner. I haven't heard yet of PSC giving up or being in remission. Progress can be slow. My understanding is that good blood test are an indication that there is no blockage at the time of the blood test. There are a few indicators in blood tests that give an indication of liver damage (they are by-products of dying liver cells), but I am not sure which ones they are. I can't diagnose your husband from here of course, I am no doc either, but his symptoms sound like PSC to me. I also had the fluctuating bloodtests until my gall bladder was removed and the ERCPs were done. At this moment in time my bile ducts seem to be open, judging by the blood tests. My PSC was detected when my wife insisted in 2001 I take a routine bloodtest, you know how wifes are ;-). It took them a while to figure out what the problem was (2003) and it took me a while to develop symptoms (2005). I do not have UC as far as I know. Sorry, no uplifting news this time. ERCP> > > How dangerous is ERCP ?> Hubby it is very sick and doc says we need an urgent ERCP...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 In my humble opinion it means that the blockage is temporarily fixed. If the progress of the PSC is slow, this may mean that the next blockage will be only in a few years, if the progress is fast it can be a lot sooner. I haven't heard yet of PSC giving up or being in remission. Progress can be slow. My understanding is that good blood test are an indication that there is no blockage at the time of the blood test. There are a few indicators in blood tests that give an indication of liver damage (they are by-products of dying liver cells), but I am not sure which ones they are. I can't diagnose your husband from here of course, I am no doc either, but his symptoms sound like PSC to me. I also had the fluctuating bloodtests until my gall bladder was removed and the ERCPs were done. At this moment in time my bile ducts seem to be open, judging by the blood tests. My PSC was detected when my wife insisted in 2001 I take a routine bloodtest, you know how wifes are ;-). It took them a while to figure out what the problem was (2003) and it took me a while to develop symptoms (2005). I do not have UC as far as I know. Sorry, no uplifting news this time. ERCP> > > How dangerous is ERCP ?> Hubby it is very sick and doc says we need an urgent ERCP...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Arne, I hadn't heard that about PSC starting 10 years before symptoms. If so, my PSC dug in the year that I was 12. My grandmother and the cat we'd had all of my life died that year and my great-grandmother died the next year (at age 103). Very interesting that it would start at such a stressful time when I was full of pre-pubescent hormones. My PSC always flared when I was under stress or having female issues. Things that make you go hummmmmmmmm. Take care, Deb in VA > > The rule of thumb is that PSC probably started 10 years before you start showing symptoms. Obviously, that's not true in all cases. > > > > Arne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Arne, I hadn't heard that about PSC starting 10 years before symptoms. If so, my PSC dug in the year that I was 12. My grandmother and the cat we'd had all of my life died that year and my great-grandmother died the next year (at age 103). Very interesting that it would start at such a stressful time when I was full of pre-pubescent hormones. My PSC always flared when I was under stress or having female issues. Things that make you go hummmmmmmmm. Take care, Deb in VA > > The rule of thumb is that PSC probably started 10 years before you start showing symptoms. Obviously, that's not true in all cases. > > > > Arne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Arne, I hadn't heard that about PSC starting 10 years before symptoms. If so, my PSC dug in the year that I was 12. My grandmother and the cat we'd had all of my life died that year and my great-grandmother died the next year (at age 103). Very interesting that it would start at such a stressful time when I was full of pre-pubescent hormones. My PSC always flared when I was under stress or having female issues. Things that make you go hummmmmmmmm. Take care, Deb in VA > > The rule of thumb is that PSC probably started 10 years before you start showing symptoms. Obviously, that's not true in all cases. > > > > Arne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 The risks are (as explained to me by 's ERCP doc) poking a hole and causing bleeding, cholangitis (which you can get, anyway, if you don't remove biliary obstruction), and pancreatitis (he says is 1 in 1000 risk). My 8 1/2 year old son has had 14 in a year. He's never developed pancreatitis. He's developed cholangitis twice (the first time was after the first one, and then one other time). He's also developed cholangitis twice BEFORE an ERCP, making the ERCP's necessary at those times. The only other anything that I can think of in my experience with is liver tenderness and sometimes a sore throat. One time they bumped his uvula in the back of his throat and it swelled up. Pretty minor things compared to what could be faced by not doing it. I know the whole thing is scary. I was scared to death when had his first few. (Of course, we also had lung collapse on his list of risks, as he had end stage pulmonary fibrosis at the time and his lungs collapsed easily, anyway.) Amiprichsy wrote: How dangerous is ERCP ?Hubby it is very sick and doc says we need an urgent ERCP... Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Well, I only know that one of 's GI docs said had "10 years worth of scarring in his liver". I told him "Dr. Sharp, the kid's only eight!" Told me that was exactly his point. (I guess trying to tell me just how bad off 's liver is.) Makes a person wonder if maybe the prematurity, meds he was on in the NICU, something like that could have caused the PSC? Or triggered it. AmiDeb in VA wrote: Arne,I hadn't heard that about PSC starting 10 years before symptoms. If so, my PSC dug in the year that I was 12. My grandmother and the cat we'd had all of my life died that year and my great-grandmother died the next year (at age 103). Very interesting that it would start at such a stressful time when I was full of pre-pubescent hormones. My PSC always flared when I was under stress or having female issues. Things that make you go hummmmmmmmm.Take care,Deb in VA>> The rule of thumb is that PSC probably started 10 years before you start showing symptoms. Obviously, that's not true in all cases. > > > > Arne Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Well, I only know that one of 's GI docs said had "10 years worth of scarring in his liver". I told him "Dr. Sharp, the kid's only eight!" Told me that was exactly his point. (I guess trying to tell me just how bad off 's liver is.) Makes a person wonder if maybe the prematurity, meds he was on in the NICU, something like that could have caused the PSC? Or triggered it. AmiDeb in VA wrote: Arne,I hadn't heard that about PSC starting 10 years before symptoms. If so, my PSC dug in the year that I was 12. My grandmother and the cat we'd had all of my life died that year and my great-grandmother died the next year (at age 103). Very interesting that it would start at such a stressful time when I was full of pre-pubescent hormones. My PSC always flared when I was under stress or having female issues. Things that make you go hummmmmmmmm.Take care,Deb in VA>> The rule of thumb is that PSC probably started 10 years before you start showing symptoms. Obviously, that's not true in all cases. > > > > Arne Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 Well, I only know that one of 's GI docs said had "10 years worth of scarring in his liver". I told him "Dr. Sharp, the kid's only eight!" Told me that was exactly his point. (I guess trying to tell me just how bad off 's liver is.) Makes a person wonder if maybe the prematurity, meds he was on in the NICU, something like that could have caused the PSC? Or triggered it. AmiDeb in VA wrote: Arne,I hadn't heard that about PSC starting 10 years before symptoms. If so, my PSC dug in the year that I was 12. My grandmother and the cat we'd had all of my life died that year and my great-grandmother died the next year (at age 103). Very interesting that it would start at such a stressful time when I was full of pre-pubescent hormones. My PSC always flared when I was under stress or having female issues. Things that make you go hummmmmmmmm.Take care,Deb in VA>> The rule of thumb is that PSC probably started 10 years before you start showing symptoms. Obviously, that's not true in all cases. > > > > Arne Ami mom to - 8 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, HypoT, GERD, High BP, ADD, Anemia, Malabsorption, No Motility http://www.caringbridge.com/visit/seanfox mom to Emma - 12 yrs - Migraines, otherwise healthy stepmom to - 13 yrs - ADD, RAD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 In your husband's case, you also have to ask what are the risks of NOT having an ERCP? ERCP, and only ERCP, short of transplant, has the potential to relieve these symptoms, possibly for years to come. If the stricture is left as is, it will accelerate the degeneration of his liver. To reduce the other risks, choose the most experienced endoscopist you can find, and get antibiotics before and after. There are simple antigen tests that can distinguish between PBC and PSC. The doctor has probably done them already, and ruled out PBC. The beaded appearance is typical of PSC. As for having close to normal blood tests, with Ursodiol for the last 14 years, my ALP has been in the 170-210 range, normal being 135 for the lab I use. I have never been symptomatic. But the disease has slowly progressed. I now have severe atrophy of the left lobe, but there were no symptoms to indicate anything was wrong- it just quit, and the right side keeps me going. So symptoms and blood tests can indicate how sick you are, but not how the disease is progressing. That said, switching to URSO and adding fish oil has lowered my ALP to 132, the lowest since diagnosis. Martha (MA) When the blood test results are > close to normal, does it mean that the PSC is giving up ? > > How dangerous is ERCP ? > > Hubby it is very sick and doc says we need an urgent ERCP... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 In your husband's case, you also have to ask what are the risks of NOT having an ERCP? ERCP, and only ERCP, short of transplant, has the potential to relieve these symptoms, possibly for years to come. If the stricture is left as is, it will accelerate the degeneration of his liver. To reduce the other risks, choose the most experienced endoscopist you can find, and get antibiotics before and after. There are simple antigen tests that can distinguish between PBC and PSC. The doctor has probably done them already, and ruled out PBC. The beaded appearance is typical of PSC. As for having close to normal blood tests, with Ursodiol for the last 14 years, my ALP has been in the 170-210 range, normal being 135 for the lab I use. I have never been symptomatic. But the disease has slowly progressed. I now have severe atrophy of the left lobe, but there were no symptoms to indicate anything was wrong- it just quit, and the right side keeps me going. So symptoms and blood tests can indicate how sick you are, but not how the disease is progressing. That said, switching to URSO and adding fish oil has lowered my ALP to 132, the lowest since diagnosis. Martha (MA) When the blood test results are > close to normal, does it mean that the PSC is giving up ? > > How dangerous is ERCP ? > > Hubby it is very sick and doc says we need an urgent ERCP... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2006 Report Share Posted October 17, 2006 In your husband's case, you also have to ask what are the risks of NOT having an ERCP? ERCP, and only ERCP, short of transplant, has the potential to relieve these symptoms, possibly for years to come. If the stricture is left as is, it will accelerate the degeneration of his liver. To reduce the other risks, choose the most experienced endoscopist you can find, and get antibiotics before and after. There are simple antigen tests that can distinguish between PBC and PSC. The doctor has probably done them already, and ruled out PBC. The beaded appearance is typical of PSC. As for having close to normal blood tests, with Ursodiol for the last 14 years, my ALP has been in the 170-210 range, normal being 135 for the lab I use. I have never been symptomatic. But the disease has slowly progressed. I now have severe atrophy of the left lobe, but there were no symptoms to indicate anything was wrong- it just quit, and the right side keeps me going. So symptoms and blood tests can indicate how sick you are, but not how the disease is progressing. That said, switching to URSO and adding fish oil has lowered my ALP to 132, the lowest since diagnosis. Martha (MA) When the blood test results are > close to normal, does it mean that the PSC is giving up ? > > How dangerous is ERCP ? > > Hubby it is very sick and doc says we need an urgent ERCP... > > > Quote Link to comment Share on other sites More sharing options...
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