Guest guest Posted August 6, 2008 Report Share Posted August 6, 2008 Hi Kate Good to hear Brad and yourself got through the day. The one thing that comes through in your posting is that Brad will be checked up on a regular basis which is great. One cheerful thing to think about is that we are living in an era when PSC is being researched more than in any time in the past and in 5 years time there may well be perhaps, not a cure, but hopefully a mechanisam for an invdiuals cirohiss to be slowed right down. Great his colitis is 'inactive'. Best wishes to you both and take you time to absorb all you heard today. from across the ditch in New Zealand. > On the bright side, his colitis is 'inactive' so that's good. > > However, he does has varices but they are not bad enough to need > surgery so he wants to check them again in twelve months. > He wants to keep him on Urso, review his bloods in a couple of months > and he will scan him for cholangiocarcinoma every six months. > > And just to sum it all up he has said that he doesn't expect his > liver to last the next ten years. Holy crap. Talk about delivering > it with a smile though. > The doc reckons the PSC has been slowly simmering for years Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I heard the same thing at diagnosis - 8 years ago (and it WASN " T delivered with a smile). Hard to hear, but the only commonality with PSC is that everyone's different. The average time from diagnosis to transplant is about 10 years. But - that IS an average. Some will be shorter, some will be longer, and some will die of something else. Diagnosis IS a tough time, but you do adjust to it (at least I have). Keep in mind that you may worry about Brad dying, but he may die of something else at any time - traffic accidents, falls, you name it. One of our early members fought PSC tough and nail, and died after being hit by a car training for a bicycle race! Hang in there - we're all there with you (ESPECIALLY the caregivers, bless them). Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of lavendula9 ....And just to sum it all up he has said that he doesn't expect his liver to last the next ten years. Holy crap. Talk about delivering it with a smile though. It wasn't until we left his office and his cheery disposition that all this sunk in. So here I was thinking I was exagerating the whole situation and just reading more into it than I should have, but not so... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I heard the same thing at diagnosis - 8 years ago (and it WASN " T delivered with a smile). Hard to hear, but the only commonality with PSC is that everyone's different. The average time from diagnosis to transplant is about 10 years. But - that IS an average. Some will be shorter, some will be longer, and some will die of something else. Diagnosis IS a tough time, but you do adjust to it (at least I have). Keep in mind that you may worry about Brad dying, but he may die of something else at any time - traffic accidents, falls, you name it. One of our early members fought PSC tough and nail, and died after being hit by a car training for a bicycle race! Hang in there - we're all there with you (ESPECIALLY the caregivers, bless them). Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of lavendula9 ....And just to sum it all up he has said that he doesn't expect his liver to last the next ten years. Holy crap. Talk about delivering it with a smile though. It wasn't until we left his office and his cheery disposition that all this sunk in. So here I was thinking I was exagerating the whole situation and just reading more into it than I should have, but not so... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 7, 2008 Report Share Posted August 7, 2008 I heard the same thing at diagnosis - 8 years ago (and it WASN " T delivered with a smile). Hard to hear, but the only commonality with PSC is that everyone's different. The average time from diagnosis to transplant is about 10 years. But - that IS an average. Some will be shorter, some will be longer, and some will die of something else. Diagnosis IS a tough time, but you do adjust to it (at least I have). Keep in mind that you may worry about Brad dying, but he may die of something else at any time - traffic accidents, falls, you name it. One of our early members fought PSC tough and nail, and died after being hit by a car training for a bicycle race! Hang in there - we're all there with you (ESPECIALLY the caregivers, bless them). Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of lavendula9 ....And just to sum it all up he has said that he doesn't expect his liver to last the next ten years. Holy crap. Talk about delivering it with a smile though. It wasn't until we left his office and his cheery disposition that all this sunk in. So here I was thinking I was exagerating the whole situation and just reading more into it than I should have, but not so... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2008 Report Share Posted August 8, 2008 Hi Arne, Thanks, especially for listing the other ways in which my husband may die -lol! I understand what you're saying, that anything could happen - good or bad. I guess it's just hard hearing that there is a potential timeframe for his health. On the upside, it has made him more appreciative of the time we spend together, especially with our young children. As I am relatively new to this group, I don't know a lot of the members' history, so can you tell me - are you at the cirrhosis stage? What is your MELD score? Thanks, Kate Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2008 Report Share Posted August 9, 2008 I've been asymptomatic since CBD balloon dilatation and stenting (removed 2 weeks later) in 2001. My gallbladder was removed that fall. I've had no PSC issues since then, other than the occasional URQ twinge (which could be something else, I suppose). I get an annual colonscopy, LFTs every 6 months, and that's about it. For the first couple of years, I also got an annual abdominal US, and a DEXA scan (both normal). They stopped ordering those tests in 2004. According to the latest lab results, my MELD score is 6 - the lowest it goes (http://www.psc-literature.org/meldcalc.htm). Arne 57 - UC 1977 - PSC 2000 Alive and well in Minnesota ________________________________ From: [mailto: ] On Behalf Of lavendula9 ....As I am relatively new to this group, I don't know a lot of the members' history, so can you tell me - are you at the cirrhosis stage? What is your MELD score? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 For what it's worth I was first told my liver had ten years left on it in 1994. After a bout of cholangitis in 2004 I went back in and was told that my liver would last... ten more years. > > I heard the same thing at diagnosis - 8 years ago (and it WASN " T delivered > with a smile). Hard to hear, but the only commonality with PSC is that > everyone's different. > > The average time from diagnosis to transplant is about 10 years. But - that > IS an average. Some will be shorter, some will be longer, and some will die > of something else. > > Diagnosis IS a tough time, but you do adjust to it (at least I have). Keep > in mind that you may worry about Brad dying, but he may die of something > else at any time - traffic accidents, falls, you name it. One of our early > members fought PSC tough and nail, and died after being hit by a car > training for a bicycle race! > > Hang in there - we're all there with you (ESPECIALLY the caregivers, bless > them). > > > Arne > 57 - UC 1977 - PSC 2000 > Alive and well in Minnesota > > > ________________________________ > > From: [mailto:psc- support ] On > Behalf Of lavendula9 > > > > ...And just to sum it all up he has said that he doesn't expect his > liver to last the next ten years. Holy crap. Talk about delivering > it with a smile though. It wasn't until we left his office and his > cheery disposition that all this sunk in. > So here I was thinking I was exagerating the whole situation and just > reading more into it than I should have, but not so... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 For what it's worth I was first told my liver had ten years left on it in 1994. After a bout of cholangitis in 2004 I went back in and was told that my liver would last... ten more years. > > I heard the same thing at diagnosis - 8 years ago (and it WASN " T delivered > with a smile). Hard to hear, but the only commonality with PSC is that > everyone's different. > > The average time from diagnosis to transplant is about 10 years. But - that > IS an average. Some will be shorter, some will be longer, and some will die > of something else. > > Diagnosis IS a tough time, but you do adjust to it (at least I have). Keep > in mind that you may worry about Brad dying, but he may die of something > else at any time - traffic accidents, falls, you name it. One of our early > members fought PSC tough and nail, and died after being hit by a car > training for a bicycle race! > > Hang in there - we're all there with you (ESPECIALLY the caregivers, bless > them). > > > Arne > 57 - UC 1977 - PSC 2000 > Alive and well in Minnesota > > > ________________________________ > > From: [mailto:psc- support ] On > Behalf Of lavendula9 > > > > ...And just to sum it all up he has said that he doesn't expect his > liver to last the next ten years. Holy crap. Talk about delivering > it with a smile though. It wasn't until we left his office and his > cheery disposition that all this sunk in. > So here I was thinking I was exagerating the whole situation and just > reading more into it than I should have, but not so... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 For what it's worth I was first told my liver had ten years left on it in 1994. After a bout of cholangitis in 2004 I went back in and was told that my liver would last... ten more years. > > I heard the same thing at diagnosis - 8 years ago (and it WASN " T delivered > with a smile). Hard to hear, but the only commonality with PSC is that > everyone's different. > > The average time from diagnosis to transplant is about 10 years. But - that > IS an average. Some will be shorter, some will be longer, and some will die > of something else. > > Diagnosis IS a tough time, but you do adjust to it (at least I have). Keep > in mind that you may worry about Brad dying, but he may die of something > else at any time - traffic accidents, falls, you name it. One of our early > members fought PSC tough and nail, and died after being hit by a car > training for a bicycle race! > > Hang in there - we're all there with you (ESPECIALLY the caregivers, bless > them). > > > Arne > 57 - UC 1977 - PSC 2000 > Alive and well in Minnesota > > > ________________________________ > > From: [mailto:psc- support ] On > Behalf Of lavendula9 > > > > ...And just to sum it all up he has said that he doesn't expect his > liver to last the next ten years. Holy crap. Talk about delivering > it with a smile though. It wasn't until we left his office and his > cheery disposition that all this sunk in. > So here I was thinking I was exagerating the whole situation and just > reading more into it than I should have, but not so... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Jon, Thank you for posting this. I like the spirit of it. Just keep proving them wrong. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of jon Sent: Monday, August 11, 2008 20:39 To: Subject: Re: Brad's doc visit For what it's worth I was first told my liver had ten years left on it in 1994. After a bout of cholangitis in 2004 I went back in and was told that my liver would last... ten more years.._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Jon, Thank you for posting this. I like the spirit of it. Just keep proving them wrong. Regards, Chaim Boermeester, Israel From: [mailto: ] On Behalf Of jon Sent: Monday, August 11, 2008 20:39 To: Subject: Re: Brad's doc visit For what it's worth I was first told my liver had ten years left on it in 1994. After a bout of cholangitis in 2004 I went back in and was told that my liver would last... ten more years.._,___ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Kate,I hope you are both able to keep your heads up and enjoy the moment. You are both in my thoughts.nne in Duluth, MinnesotaUC 02, PSC 08Subject: Brad's doc visitTo: Date: Wednesday, August 6, 2008, 8:48 AM Hi Everyone, Brad had the colonoscopy and gastroscopy and appointment with the new doc today so lots of birds, one stone. He made it through the morning with a smile on his face which was surprising because I thought he was going to punch someone if he had to go without food for much longer The doc was super helpful with all my questions, I only wish he had given some nicer answers. On the bright side, his colitis is 'inactive' so that's good. However, he does has varices but they are not bad enough to need surgery so he wants to check them again in twelve months. He said that this means he does have portal hypertension. That sounds freaky to me, does anyone have any info/advice on it? I've looke dit up a bit over the last few days and it looks pretty scary. His small ducts are affected which one of you guys said was usually less aggressive than large duct, if I remember correctly? That's a bonus, I guess! I asked the doc about all the different scores and stages etc and he said Brad does have cirrhosis so is at Stage 4 PSC and has a MELD of 11, the latter not sounding too bad, I think? He wants to keep him on Urso, review his bloods in a couple of months and he will scan him for cholangiocarcinoma every six months. And just to sum it all up he has said that he doesn't expect his liver to last the next ten years. Holy crap. Talk about delivering it with a smile though. It wasn't until we left his office and his cheery disposition that all this sunk in. So here I was thinking I was exagerating the whole situation and just reading more into it than I should have, but not so. The doc reckons the PSC has been slowly simmering for years but has been flying beneath the radar until now so it's had time to take hold without being noticed. That contradicts what the other doc said last week but...meh. I'm sorry if this sounds too point form, I'm so exhausted from the city trip and all the info...just wanted to share the info. At least Brad is relatively optimistic at times. At others, he just talks as though he's doomed to die within ten years. He has a few days off and I will try to cheer him up during that time. Thanks for reading. Any advice on cheering techniques or magical cures would be appreciated Cheers, Kate Wife to Brad UC 1998/PSC 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Kate,I hope you are both able to keep your heads up and enjoy the moment. You are both in my thoughts.nne in Duluth, MinnesotaUC 02, PSC 08Subject: Brad's doc visitTo: Date: Wednesday, August 6, 2008, 8:48 AM Hi Everyone, Brad had the colonoscopy and gastroscopy and appointment with the new doc today so lots of birds, one stone. He made it through the morning with a smile on his face which was surprising because I thought he was going to punch someone if he had to go without food for much longer The doc was super helpful with all my questions, I only wish he had given some nicer answers. On the bright side, his colitis is 'inactive' so that's good. However, he does has varices but they are not bad enough to need surgery so he wants to check them again in twelve months. He said that this means he does have portal hypertension. That sounds freaky to me, does anyone have any info/advice on it? I've looke dit up a bit over the last few days and it looks pretty scary. His small ducts are affected which one of you guys said was usually less aggressive than large duct, if I remember correctly? That's a bonus, I guess! I asked the doc about all the different scores and stages etc and he said Brad does have cirrhosis so is at Stage 4 PSC and has a MELD of 11, the latter not sounding too bad, I think? He wants to keep him on Urso, review his bloods in a couple of months and he will scan him for cholangiocarcinoma every six months. And just to sum it all up he has said that he doesn't expect his liver to last the next ten years. Holy crap. Talk about delivering it with a smile though. It wasn't until we left his office and his cheery disposition that all this sunk in. So here I was thinking I was exagerating the whole situation and just reading more into it than I should have, but not so. The doc reckons the PSC has been slowly simmering for years but has been flying beneath the radar until now so it's had time to take hold without being noticed. That contradicts what the other doc said last week but...meh. I'm sorry if this sounds too point form, I'm so exhausted from the city trip and all the info...just wanted to share the info. At least Brad is relatively optimistic at times. At others, he just talks as though he's doomed to die within ten years. He has a few days off and I will try to cheer him up during that time. Thanks for reading. Any advice on cheering techniques or magical cures would be appreciated Cheers, Kate Wife to Brad UC 1998/PSC 2008 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 12, 2008 Report Share Posted August 12, 2008 Kate,I hope you are both able to keep your heads up and enjoy the moment. You are both in my thoughts.nne in Duluth, MinnesotaUC 02, PSC 08Subject: Brad's doc visitTo: Date: Wednesday, August 6, 2008, 8:48 AM Hi Everyone, Brad had the colonoscopy and gastroscopy and appointment with the new doc today so lots of birds, one stone. He made it through the morning with a smile on his face which was surprising because I thought he was going to punch someone if he had to go without food for much longer The doc was super helpful with all my questions, I only wish he had given some nicer answers. On the bright side, his colitis is 'inactive' so that's good. However, he does has varices but they are not bad enough to need surgery so he wants to check them again in twelve months. He said that this means he does have portal hypertension. That sounds freaky to me, does anyone have any info/advice on it? I've looke dit up a bit over the last few days and it looks pretty scary. His small ducts are affected which one of you guys said was usually less aggressive than large duct, if I remember correctly? That's a bonus, I guess! I asked the doc about all the different scores and stages etc and he said Brad does have cirrhosis so is at Stage 4 PSC and has a MELD of 11, the latter not sounding too bad, I think? He wants to keep him on Urso, review his bloods in a couple of months and he will scan him for cholangiocarcinoma every six months. And just to sum it all up he has said that he doesn't expect his liver to last the next ten years. Holy crap. Talk about delivering it with a smile though. It wasn't until we left his office and his cheery disposition that all this sunk in. So here I was thinking I was exagerating the whole situation and just reading more into it than I should have, but not so. The doc reckons the PSC has been slowly simmering for years but has been flying beneath the radar until now so it's had time to take hold without being noticed. That contradicts what the other doc said last week but...meh. I'm sorry if this sounds too point form, I'm so exhausted from the city trip and all the info...just wanted to share the info. At least Brad is relatively optimistic at times. At others, he just talks as though he's doomed to die within ten years. He has a few days off and I will try to cheer him up during that time. Thanks for reading. Any advice on cheering techniques or magical cures would be appreciated Cheers, Kate Wife to Brad UC 1998/PSC 2008 Quote Link to comment Share on other sites More sharing options...
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