Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 Peg I have had 4 ercp since nov. They use demerol and versed. I am actigall 900 mg. a day . I was on 600 mg. I told the doctor I thought I wasn*t talking enough > I told he a couple of people told me from the group I wasn*t so he up me . I so far never had any infections I am on 400mg. of floxin . I noticed most of you are on Cirpro. After the Ercp i usually have a temp of 100.6. By the next day is gone. I have learned so much through the psc group. From Norm Hoffman I learn more about vitamins and now from Larry I am going to drink Ensure for the vitamins. Laurie is just full of information!! They still want me to do bile duct surgery on so they won*t have to keep stenting. But I am thinking not until they can not stent any more.Peg you might want to find out more about that. I also try to get a massage once a week and go to the chiroprator aleast one or twice a week. Are any of you doing this? I tried accupunture. I don*t know if it works or not. Boy wouldn*t it be great just to stay at home and not work and concentrate more on our health!!! Hope you are are filling better today. Marsha ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 Bill Havde they ever suggested bile duct surgery? Where do you live? Marsha ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 Bill, I'm so confused. Phil has had one ERCP and ended up in the hospital for 10 days. He got infected and they couldn't get his liver functions acting almost normal for that long. He got so yellow that he looked greenish. The doctor said that the main bile duct was so bad he didn't think he could get in with the scope but he did and he couldn't get into the liver because when he injected the dye in Phil was screaming with pain. (I guess they just had given him twilight sleep and didn't put him totally under). He had to pull out right away and is very afraid to do it again. While he was in the hospital that time he said if he went in again he'd be in intensive care and was worried about liver failure. He had contacted UCLA about doing it but they told him he was the best because he specializes in ERCPS and is the best at it. He also said that he is so badly constricted and there are so many constrictions that it wouldn't help to try to do stents. He believes in not being anymore invasive than necessary. Phil had another cholangitis attack on Jan 23rd while waiting for the gallbladder surgery on Feb 1st. He had his gallbladder out and was feel real well until he had another cholangitis attack on March 23. (Surprisingly he made it through April 23rd). When we saw his GI specialist a couple of weeks ago, he said that if he had another attack he would have to do another ERCP but he seems so afraid of doing it. What I don't understand is why he is so afraid of doing it on Phil. He says that he's sure he's had this disease for years. Is it the severity of the constrictions? He's supposed to be one of the top ERCP guys in the country. He's sending him for a tx evaluation on June 21st but thinks they'll think it's way too early to be listed. He says that if they infections keep up he will be listed so he want him to meet with them. See why I'm so confused. If other people get ERCPS so often I don't understand why the doctor seems so afraid of going back in on Phil. Peg A Bill Dolan wrote: > A couple of days ago Brown said she would like to hear from anybody who > has had experienced " a lot of ERCP's. " > > Since March of 1995 I've had 17 of them. Here's a little bit of background: > > I've had stents placed in my common bile duct via ERCP every 90 days since > March of 1995. Had cholangitis episodes a couple of times a year since that > time till last year. By November of 1998 I had had cholangitis episodes > during three out of the four previous interim periods before the 90 day time > had elapsed, so my doctor moved these up to every two months instead of > three. I had a stent replacement January 8 and just two weeks later, on > Sunday January 24, I had such a severe cholangitis episode that they put me > in the hospital. Since the bacteria didn't respond to CIPRO (which it > normally does) the infection got into my blood stream and I stayed in the > hospital on a liquid diet and IV antibiotics (other than CIPRO - they > experimented with various ones till they got the one that would work). I > came home Friday, January 29, on at-home IV antibiotics for 10 more days > (through Monday, February 8). While I was in the hospital at this time the > doctor did another ERCP and took the stent out and left it out since it was > the seat of the infection. He did a dilation on the common duct and cleaned > it out real good, injecting some of the antibiotic right up into the liver. > After this episode my regular doctors (gastroenter-ologists) referred me to > the Hospital of the University of Pennsylvania for an evaluation and I was > listed in March. Have not had any episodes of cholangitis since the stent > was taken out and the dilation was done in January. Keeping my fingers > crossed, getting blood tests every month (results look good), and biding my > time till something happens. The gastroenterologist who has been doing the > ERCP stent replacements just wants to wait and see how long I can go with > the common duct dilated before it needs to be done again - doesn't want to > go in there just to look around. Hope I can go as long as Larry is now going > between dilations! > > However, some of the episodes could be caused by blockage in the smaller > ducts above the common duct and these can't be stented or even dilated very > much because they're so small. Again, each of these cases seems to have > their own distinct idiosyncracies. > > The actual ERCP process has never been a problem for me. Only problem is > that on a couple of occasions I believe subsequent cholangitis episodes may > have been actually caused by bacteria introduced during the ERCP (in these > cases the cholangitis occurred within a couple of weeks of the ERCP [like > the January one mentioned above], whereas most of them happen just around > the time my 90 days was up as a result of the stent clogging). That's one of > the problems with ERCP's, and the cleaning of equipment is extremely > important (somebody posted an article on that subject here not long ago). > > , hope this little background helps. Let me know if you have any other > questions. > > Bill Dolan > > > ?/ Prednisone ? > > > > > > >Hi , > > >I don't want to bother you because I understand you need your rest but > > >when you feel up to it I 'm curious about a few things. What was your > > >bloodwork like before transplant-bilirubin levels, alk levels etc, > > >bleeding time? Did you have any edema, ascites, or varices? How long > > >were you on the list? Did you have any bowel problems associated with > > >the PSC? This whole list process is confusing with the wait time and > > >point process. Its scary because although I'm fatiqued and have probs > > >with UC my bilirubin just dropped two point from 4.5 to 2.5 on my last > > >blood test and I quess that effects my listing. But I don't want a > > >transplant too soon If I can still have an acceptable quality of life > > >and work but if its enevitable I don't want to wait to a point where I > > >may not make it through the surgery. Did you doctors talk to you at all > > >about this? > > >Also, Is there anyone on prednisone for UC? After many drug trials, I > > >was just put in 15mg a day. (5mg 3x a day). > > >Thanks, > > >Michele > > > > > > > > >------------------------------------------------------------------------ > > >!! FREE !! DOWNLOAD NOW !! > > >Animated Interactive Cartoon Character for Windows. > > >http://clickhere./click/242 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 1999 Report Share Posted May 15, 1999 Hi Guys, I would appreciate it if some one would fill me in on the ERCPs. I had a loop of my bowel attached to the inner wall of my stomach, back in 1983. I have had over 30 intrusions into my bile ducts over the years. When I had all this done back in 1983 this was extremely new. How do they get into your bile ducts, the ones that branch off to the side? Where are they putting stints in? The only dealings I have with my doctors is for them to do the dillatation procedure, and I determine when it should be done. I can feel when the ducts get blocked, fever, chills etc. I used to have it done every 14 weeks, now about once a year and I once went 4 years. I would appreciate any information you folks could give me. Thanks. Larry P. Bill Dolan wrote: > > A couple of days ago Brown said she would like to hear from anybody who > has had experienced " a lot of ERCP's. " > > Since March of 1995 I've had 17 of them. Here's a little bit of background: > > I've had stents placed in my common bile duct via ERCP every 90 days since > March of 1995. Had cholangitis episodes a couple of times a year since that > time till last year. By November of 1998 I had had cholangitis episodes > during three out of the four previous interim periods before the 90 day time > had elapsed, so my doctor moved these up to every two months instead of > three. I had a stent replacement January 8 and just two weeks later, on > Sunday January 24, I had such a severe cholangitis episode that they put me > in the hospital. Since the bacteria didn't respond to CIPRO (which it > normally does) the infection got into my blood stream and I stayed in the > hospital on a liquid diet and IV antibiotics (other than CIPRO - they > experimented with various ones till they got the one that would work). I > came home Friday, January 29, on at-home IV antibiotics for 10 more days > (through Monday, February 8). While I was in the hospital at this time the > doctor did another ERCP and took the stent out and left it out since it was > the seat of the infection. He did a dilation on the common duct and cleaned > it out real good, injecting some of the antibiotic right up into the liver. > After this episode my regular doctors (gastroenter-ologists) referred me to > the Hospital of the University of Pennsylvania for an evaluation and I was > listed in March. Have not had any episodes of cholangitis since the stent > was taken out and the dilation was done in January. Keeping my fingers > crossed, getting blood tests every month (results look good), and biding my > time till something happens. The gastroenterologist who has been doing the > ERCP stent replacements just wants to wait and see how long I can go with > the common duct dilated before it needs to be done again - doesn't want to > go in there just to look around. Hope I can go as long as Larry is now going > between dilations! > > However, some of the episodes could be caused by blockage in the smaller > ducts above the common duct and these can't be stented or even dilated very > much because they're so small. Again, each of these cases seems to have > their own distinct idiosyncracies. > > The actual ERCP process has never been a problem for me. Only problem is > that on a couple of occasions I believe subsequent cholangitis episodes may > have been actually caused by bacteria introduced during the ERCP (in these > cases the cholangitis occurred within a couple of weeks of the ERCP [like > the January one mentioned above], whereas most of them happen just around > the time my 90 days was up as a result of the stent clogging). That's one of > the problems with ERCP's, and the cleaning of equipment is extremely > important (somebody posted an article on that subject here not long ago). > > , hope this little background helps. Let me know if you have any other > questions. > > Bill Dolan > > > ?/ Prednisone ? > > > > > > >Hi , > > >I don't want to bother you because I understand you need your rest but > > >when you feel up to it I 'm curious about a few things. What was your > > >bloodwork like before transplant-bilirubin levels, alk levels etc, > > >bleeding time? Did you have any edema, ascites, or varices? How long > > >were you on the list? Did you have any bowel problems associated with > > >the PSC? This whole list process is confusing with the wait time and > > >point process. Its scary because although I'm fatiqued and have probs > > >with UC my bilirubin just dropped two point from 4.5 to 2.5 on my last > > >blood test and I quess that effects my listing. But I don't want a > > >transplant too soon If I can still have an acceptable quality of life > > >and work but if its enevitable I don't want to wait to a point where I > > >may not make it through the surgery. Did you doctors talk to you at all > > >about this? > > >Also, Is there anyone on prednisone for UC? After many drug trials, I > > >was just put in 15mg a day. (5mg 3x a day). > > >Thanks, > > >Michele > > > > > > > > >------------------------------------------------------------------------ > > >!! FREE !! DOWNLOAD NOW !! > > >Animated Interactive Cartoon Character for Windows. > > >http://clickhere./click/242 > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Bill Thank you for the reply. Where do you live? I live in Southern California. Marsha ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 I have had 5 ERCP's since September of 1998. Four of the procedures were done at the Mayo Clinic in Rochester, MN. The four procedures at Mayo did not result in significant side effects. Each time I experienced the same slightly sore throat, frustration with a brief period with memory problems (effect of VERSED), and extra fatigue for a couple of days. In my case the liver appears to be in pretty good shape compared to the intrahepatic ducts and the bile duct. I don't anticipate many (any?) future attempts to place stents via ERCP. The endoscopist on the 4th ERCP placed a stent, but reported that he thought that the ducts had too many strictures for further attempts to be successful. He was probably correct. The last ERCP found the stent loose and non functional, and, after exploration, that endoscopist did not attempt to place a new stent. From my perspective, the ERCP has not been a particularly painful or difficult procedure to undergo, and I have had no significant negative after effects. All four ERCP's at Mayo were performed in the hospital on an outpatient basis, and I was discharged within 3 hours following the procedure. I would be more than happy to be in a situation where an ERCP every 90 days would provide me with a good path for bile to drain from the liver. Meanwhile, I have had a good past 60 days and hope your situation allows the endoscopists to keep the bile flowing. I did not discuss my first ERCP. I will say that I would NEVER again have an ERCP performed outside a center where the endoscopy teams perform multiple ERCP's per day all year round. Go Well, Jim wrote: Original Article: /list//?start=2059 > Bill, > I'm so confused. Phil has had one ERCP and ended up in the hospital for 10 > days. He got infected and they couldn't get his liver functions acting almost > normal for that long. He got so yellow that he looked greenish. The doctor > said that the main bile duct was so bad he didn't think he could get in with the > scope but he did and he couldn't get into the liver because when he injected the > dye in Phil was screaming with pain. (I guess they just had given him twilight > sleep and didn't put him totally under). He had to pull out right away and is > very afraid to do it again. While he was in the hospital that time he said if > he went in again he'd be in intensive care and was worried about liver failure. > He had contacted UCLA about doing it but they told him he was the best because > he specializes in ERCPS and is the best at it. He also said that he is so badly > constricted and there are so many constrictions that it wouldn't help to try to > do stents. He believes in not being anymore invasive than necessary. Phil had > another cholangitis attack on Jan 23rd while waiting for the gallbladder surgery > on Feb 1st. He had his gallbladder out and was feel real well until he had > another cholangitis attack on March 23. (Surprisingly he made it through April > 23rd). > When we saw his GI specialist a couple of weeks ago, he said that if he had > another attack he would have to do another ERCP but he seems so afraid of doing > it. What I don't understand is why he is so afraid of doing it on Phil. He > says that he's sure he's had this disease for years. Is it the severity of the > constrictions? He's supposed to be one of the top ERCP guys in the country. > He's sending him for a tx evaluation on June 21st but thinks they'll think it's > way too early to be listed. He says that if they infections keep up he will be > listed so he want him to meet with them. See why I'm so confused. If other > people get ERCPS so often I don't understand why the doctor seems so afraid of > going back in on Phil. > > Peg A > > Bill Dolan wrote: > > > A couple of days ago Brown said she would like to hear from anybody who > > has had experienced " a lot of ERCP's. " > > > > Since March of 1995 I've had 17 of them. Here's a little bit of background: > > > > I've had stents placed in my common bile duct via ERCP every 90 days since > > March of 1995. Had cholangitis episodes a couple of times a year since that > > time till last year. By November of 1998 I had had cholangitis episodes > > during three out of the four previous interim periods before the 90 day time > > had elapsed, so my doctor moved these up to every two months instead of > > three. I had a stent replacement January 8 and just two weeks later, on > > Sunday January 24, I had such a severe cholangitis episode that they put me > > in the hospital. Since the bacteria didn't respond to CIPRO (which it > > normally does) the infection got into my blood stream and I stayed in the > > hospital on a liquid diet and IV antibiotics (other than CIPRO - they > > experimented with various ones till they got the one that would work). I > > came home Friday, January 29, on at-home IV antibiotics for 10 more days > > (through Monday, February 8). While I was in the hospital at this time the > > doctor did another ERCP and took the stent out and left it out since it was > > the seat of the infection. He did a dilation on the common duct and cleaned > > it out real good, injecting some of the antibiotic right up into the liver. > > After this episode my regular doctors (gastroenter-ologists) referred me to > > the Hospital of the University of Pennsylvania for an evaluation and I was > > listed in March. Have not had any episodes of cholangitis since the stent > > was taken out and the dilation was done in January. Keeping my fingers > > crossed, getting blood tests every month (results look good), and biding my > > time till something happens. The gastroenterologist who has been doing the > > ERCP stent replacements just wants to wait and see how long I can go with > > the common duct dilated before it needs to be done again - doesn't want to > > go in there just to look around. Hope I can go as long as Larry is now going > > between dilations! > > > > However, some of the episodes could be caused by blockage in the smaller > > ducts above the common duct and these can't be stented or even dilated very > > much because they're so small. Again, each of these cases seems to have > > their own distinct idiosyncracies. > > > > The actual ERCP process has never been a problem for me. Only problem is > > that on a couple of occasions I believe subsequent cholangitis episodes may > > have been actually caused by bacteria introduced during the ERCP (in these > > cases the cholangitis occurred within a couple of weeks of the ERCP [like > > the January one mentioned above], whereas most of them happen just around > > the time my 90 days was up as a result of the stent clogging). That's one of > > the problems with ERCP's, and the cleaning of equipment is extremely > > important (somebody posted an article on that subject here not long ago). > > > > , hope this little background helps. Let me know if you have any other > > questions. > > > > Bill Dolan > > > > > ?/ Prednisone ? > > > > > > > > > >Hi , > > > >I don't want to bother you because I understand you need your rest but > > > >when you feel up to it I 'm curious about a few things. What was your > > > >bloodwork like before transplant-bilirubin levels, alk levels etc, > > > >bleeding time? Did you have any edema, ascites, or varices? How long > > > >were you on the list? Did you have any bowel problems associated with > > > >the PSC? This whole list process is confusing with the wait time and > > > >point process. Its scary because although I'm fatiqued and have probs > > > >with UC my bilirubin just dropped two point from 4.5 to 2.5 on my last > > > >blood test and I quess that effects my listing. But I don't want a > > > >transplant too soon If I can still have an acceptable quality of life > > > >and work but if its enevitable I don't want to wait to a point where I > > > >may not make it through the surgery. Did you doctors talk to you at all > > > >about this? > > > >Also, Is there anyone on prednisone for UC? After many drug trials, I > > > >was just put in 15mg a day. (5mg 3x a day). > > > >Thanks, > > > >Michele > > > > > > > > > > > >------------------------------------------------------------------------ > > > >!! FREE !! DOWNLOAD NOW !! > > > >Animated Interactive Cartoon Character for Windows. > > > >http://clickhere./click/242 > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 1999 Report Share Posted May 16, 1999 Marsha, Yes, at one time they had talked briefly about trying bile duct surgery, but have since decided against it. They don't like to do bile duct surgery when liver transplant is in the future because it apparently makes the transplant surgery that much more difficult. One specialist from Mayo who we quoted on here previously used the word " contraindicated " when talking about bile duct surgery if transplant might be necessary later. I've had several docs tell me this also. Bill > Re: Lots of ERCP's > > > Bill Havde they ever suggested bile duct surgery? Where do > you live? > Marsha > > ------------------------------------------------------------------------ > PHENOMENAL LONG DISTANCE SERVICE! - 7.5¢/m with traditional billing, > 6.9¢/m with online billing - 2 hrs FREE w/ signup! 5¢/m calling cards > plus Debt Free Living and much, much more at > http://clickhere./click/240 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 I've had pretty extensive surgery, done by the tx team, and they still listed me when I was really ill--I'm not listed now though. Also, I read all of your posts about repeat ERCPs with great envy. Both of mine were utter disasters; one was life-threatening. We even had an expert brought in from another facility. Maybe it's just my nasty anatomy..... Penny Bill Dolan wrote: > Marsha, > > Yes, at one time they had talked briefly about trying bile duct surgery, but > have since decided against it. They don't like to do bile duct surgery when > liver transplant is in the future because it apparently makes the transplant > surgery that much more difficult. One specialist from Mayo who we quoted on > here previously used the word " contraindicated " when talking about bile duct > surgery if transplant might be necessary later. I've had several docs tell > me this also. > > Bill > > > Re: Lots of ERCP's > > > > > > Bill Havde they ever suggested bile duct surgery? Where do > > you live? > > Marsha > > > > ------------------------------------------------------------------------ > > PHENOMENAL LONG DISTANCE SERVICE! - 7.5¢/m with traditional billing, > > 6.9¢/m with online billing - 2 hrs FREE w/ signup! 5¢/m calling cards > > plus Debt Free Living and much, much more at > > http://clickhere./click/240 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 This doesn't make sense to me. In a previous post, someone stated that the liver is transplanted with the duct along with a small section of the intestine that contains the main bile duct. Thoughts? > Re: Lots of ERCP's > > > > > > Bill Havde they ever suggested bile duct surgery? Where do > > you live? > > Marsha > > > > ------------------------------------------------------------------------ > > PHENOMENAL LONG DISTANCE SERVICE! - 7.5¢/m with traditional billing, > > 6.9¢/m with online billing - 2 hrs FREE w/ signup! 5¢/m calling cards > > plus Debt Free Living and much, much more at > > http://clickhere./click/240 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Bill I always wanted to go to Hershey, pocanos and the amish country. Have you benn there? Marsha ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 1999 Report Share Posted May 17, 1999 Marsha, Home for me is Drexel Hill, Pennsylvania, just to the west outside Philadelphia. Bill > Re: Lots of ERCP's > > > Bill > > Thank you for the reply. Where do you live? I live in Southern > California. > Marsha > > ------------------------------------------------------------------------ > PHENOMENAL LONG DISTANCE SERVICE! - 7.5¢/m with traditional billing, > 6.9¢/m with online billing - 2 hrs FREE w/ signup! 5¢/m calling cards > plus Debt Free Living and much, much more at > http://clickhere./click/240 > > > > eGroups.com home: /group/ > - Simplifying group communications > > > > > ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Bill, I wondered after reading your message why you had to endure so many ERCPs before being listed for transplantation. Is that what it takes for us to " establish " our eligibility/need, or did you have some hesitancy about being listed (or both)? Just curious -- Erwin ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Peg A (and everybody else), I am confused/potentially angry because it appears that we have to be suffering frequent infections and other severe symptoms before we can even be listed, let alone actually receive a transplant. As someone who was only recently diagnosed, (hence I am early in the game vis a vis progression of symptoms), I can only imagine what Phil and Bill and others are going through. Still, the callousness of doctors and UNOS bureaucrats who won't list a patient until they have reached some arbitrary and awful level of discomfort is galling. I appreciate that the ultimate rationale for this is the scarcity of donors, but this seems like an especially cruel twist. Is there something the ALF can do to rectify UNOS criteria for PSC patients? Or is there another vehicle that would be more likely to be effective? Erwin ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Erwin-- I heartily agree. The thing that bothers me the most is that as the disease progresses, other things go haywire and then it takes about a year (I'm told by the tx surgeon) for these things to get back to normal. Just to list a few: enlarged spleen, low platelets, muscle wasting, arthritis-type problems. I've said before & I still believe that it's getting to the liver tx listing stage that's hard because a person has to go through so much to get there. Wouldn't it be better to get a liver tx before a person goes downhill and so the recovery would be better--i.e., they're concerned about my weight because the risks increase when a person is underweight. Yet they wait as I continue to lose weight and stamina. Go figure..... I don't think there's an answer--we're stuck w/the program as is. I know I sure don't have the energy to fight it anyway. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Dear Erwin, Just having gone through a transplant, I have to tell you that we were VERY disgusted at the fact that you have to be the closest person to death (at least in the state of Texas) before you are moved to Status 2B and transplanted immediately. At that point we realized that our only hope was to turn it all over to God and put it in His hands...and as you can see...I am a walking miracle. I was very sick, but definitely not the closest in the state of Texas to death...at least not that I know of. Then the other frustrating thing is that you can't be TOO sick either to be listed. It is a crazy system...one that I still don't understand. I pray for all of you guys constantly..hoping the system will change quickly!! Much love, Jacquelyn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Erwin, I don't know the answers to your questions, but at least for myself..for the most part, I don't want to be listed yet. Even though I am getting constant infections, the thought of even being listed scares me too bad. Maybe I am still in denial to some degree, I think that if I were to be listed...it would make it all too real. Just my thoughts on it. Love, ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 1999 Report Share Posted May 25, 1999 Erwin, As bad as having to go to the hospital as often as Phil has we're just not ready for the transplant yet. The transplant and after has it's own set of problems plus the risk. Although his doctor is sending Phil to see the transplant team (he indicated that he isn't bad enough yet to be listed). Now if he has to have another ERCP that would be another story. The doctor feels that would be a very serious thing in Phil's case because he couldn't even tolerate the dye in the ducts and that would probably push him into being listed. I'm sure that the main problem is the shortage of livers but I also feel the doctors don't want to take the risk until it is abolutely necessary. Peg A ISZAT@... wrote: > Peg A (and everybody else), > > I am confused/potentially angry because it appears that we have to be > suffering frequent infections and other severe symptoms before we can even be > listed, let alone actually receive a transplant. As someone who was only > recently diagnosed, (hence I am early in the game vis a vis progression of > symptoms), I can only imagine what Phil and Bill and others are going > through. Still, the callousness of doctors and UNOS bureaucrats who won't > list a patient until they have reached some arbitrary and awful level of > discomfort is galling. I appreciate that the ultimate rationale for this is > the scarcity of donors, but this seems like an especially cruel twist. Is > there something the ALF can do to rectify UNOS criteria for PSC patients? Or > is there another vehicle that would be more likely to be effective? Erwin > > ------------------------------------------------------------------------ > Explore the Web for sites in Health & Medicine from Looksmart! > http://clickhere./click/295 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Dear , I would love to share the story of my friend Mike with you. But I don't want it to discourage any of you, because God's plan is perfect and it was just God's time to take Mike home. Mike had been suffering with PSC for the past 13 years. He was a pastor and kept a very very busy schedule although he never felt very well. He felt God calling him to continue his pastoring and that's what he did. I admire him so much and am so honored that he was one of my best friends. I received an email from his wife last night...it took me an hour to respond to know exactly the right words to say...but she said that neither one of his transplants were successful. I believe what happened is that when the first tx failed he had to wait in ICU for almost a week for another liver to become available and by that point his body was to weak to accept the second liver. It was just his time to go be with his Lord!! I know that the very last thing that Mike would want would be for any of you to be scared about your outcome b/c as I said, he lived much longer than the doctors had originally given him (5 years..13 years ago). He got his dream come true by getting to see his sons graduate high school and throughout his years led SO many to Christ. One of his sayings that I love was to.... " Live in the light today...REFUSE to embrace the darkness. " Everyone please have a very blessed day!! thank you so much for writing me!! I hope that you are feeling very well!! I love all of you so much!! God bless! Jacquelyn ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Jacquelyn, I have been thinking of your friend who died after transplant. Was he very debilitated before tx? Do you know why he died? It's just devastating to think that we have to be so far downhill before tx, but I guess there aren't any guarantees that we'll make it after tx. If you feel comfortable sharing any of his story, I'd like to hear it. Thanks... Be well... JQS2@... wrote: > Dear Erwin, > Just having gone through a transplant, I have to tell you that we > were VERY disgusted at the fact that you have to be the closest person to > death (at least in the state of Texas) before you are moved to Status 2B and > transplanted immediately. At that point we realized that our only hope was > to turn it all over to God and put it in His hands...and as you can see...I > am a walking miracle. I was very sick, but definitely not the closest in the > state of Texas to death...at least not that I know of. > Then the other frustrating thing is that you can't be TOO sick either > to be listed. It is a crazy system...one that I still don't understand. I > pray for all of you guys constantly..hoping the system will change quickly!! > Much love, > Jacquelyn > > ------------------------------------------------------------------------ > The Weather Underground. We provide weather across the world. > Visit http://clickhere./click/48 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 , I talked with Jacquelyn last Friday and asked her about her friend. She didn't say too much about his previous condition but she did say that he didn't feel as positive about the tx as she and Luke did about hers. The reason he died was that he rejected the new liver. That is always a possibility and they don't have a spare one around and unfortunately they haven't come up with anything artificial they can use until they can get you a new one. So it is a major risk and one of the reasons Phil and I aren't real anxious to go that route yet. Course Phil is still able to do things, certainly not what he used to be he isn't constantly sick, that would be another story. Peg A mltill wrote: > Jacquelyn, > I have been thinking of your friend who died after transplant. Was he very > debilitated before tx? Do you know why he died? It's just devastating to think > that we have to be so far downhill before tx, but I guess there aren't any > guarantees that we'll make it after tx. If you feel comfortable sharing any of > his story, I'd like to hear it. > Thanks... > Be well... > > > JQS2@... wrote: > > > Dear Erwin, > > Just having gone through a transplant, I have to tell you that we > > were VERY disgusted at the fact that you have to be the closest person to > > death (at least in the state of Texas) before you are moved to Status 2B and > > transplanted immediately. At that point we realized that our only hope was > > to turn it all over to God and put it in His hands...and as you can see...I > > am a walking miracle. I was very sick, but definitely not the closest in the > > state of Texas to death...at least not that I know of. > > Then the other frustrating thing is that you can't be TOO sick either > > to be listed. It is a crazy system...one that I still don't understand. I > > pray for all of you guys constantly..hoping the system will change quickly!! > > Much love, > > Jacquelyn > > > > ------------------------------------------------------------------------ > > The Weather Underground. We provide weather across the world. > > Visit http://clickhere./click/48 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > eGroups now offers FREE email newsletters! > Women.com, RollingStone, Travelocity, and more… > Sign-up Now! http://clickhere./click/315 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 1999 Report Share Posted May 26, 1999 Sorry I sounded so negative before. I'd better get my facts right before replying again. I didn't realize that they can keep you alive even though you reject the liver until you get another one. That's encouraging. I guess the condition your in probably makes a difference and maybe age. I guess the most important thing is to live each day we have here to the fullest and I'm trying to do that thanks to all the inspiration I've gotten from you guys. Fortunately Phil has a more positive way of thinking but he too gets down so it's helping for me to get a more positive attitude and again you guys have helped me tremedously with that. Love, Peg JQS2@... wrote: > Dear , > I would love to share the story of my friend Mike with you. > But I don't want it to discourage any of you, because God's plan is perfect > and it was just God's time to take Mike home. Mike had been suffering with > PSC for the past 13 years. He was a pastor and kept a very very busy > schedule although he never felt very well. He felt God calling him to > continue his pastoring and that's what he did. I admire him so much and am > so honored that he was one of my best friends. > I received an email from his wife last night...it took me an hour to > respond to know exactly the right words to say...but she said that neither > one of his transplants were successful. I believe what happened is that > when the first tx failed he had to wait in ICU for almost a week for another > liver to become available and by that point his body was to weak to accept > the second liver. It was just his time to go be with his Lord!! > I know that the very last thing that Mike would want would be for any > of you to be scared about your outcome b/c as I said, he lived much longer > than the doctors had originally given him (5 years..13 years ago). He got > his dream come true by getting to see his sons graduate high school and > throughout his years led SO many to Christ. One of his sayings that I love > was to.... " Live in the light today...REFUSE to embrace the darkness. " > Everyone please have a very blessed day!! thank you so much > for writing me!! I hope that you are feeling very well!! > I love all of you so much!! > God bless! > Jacquelyn > > ------------------------------------------------------------------------ > The Weather Underground. We provide weather across the world. > Visit http://clickhere./click/48 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Thanks for the info, Peg. Peggy Alfeld wrote: > , > I talked with Jacquelyn last Friday and asked her about her friend. She didn't say > too much about his previous condition but she did say that he didn't feel as > positive about the tx as she and Luke did about hers. The reason he died was that > he rejected the new liver. That is always a possibility and they don't have a spare > one around and unfortunately they haven't come up with anything artificial they can > use until they can get you a new one. So it is a major risk and one of the reasons > Phil and I aren't real anxious to go that route yet. Course Phil is still able to > do things, certainly not what he used to be he isn't constantly sick, that would be > another story. > Peg A > > mltill wrote: > > > Jacquelyn, > > I have been thinking of your friend who died after transplant. Was he very > > debilitated before tx? Do you know why he died? It's just devastating to think > > that we have to be so far downhill before tx, but I guess there aren't any > > guarantees that we'll make it after tx. If you feel comfortable sharing any of > > his story, I'd like to hear it. > > Thanks... > > Be well... > > > > > > JQS2@... wrote: > > > > > Dear Erwin, > > > Just having gone through a transplant, I have to tell you that we > > > were VERY disgusted at the fact that you have to be the closest person to > > > death (at least in the state of Texas) before you are moved to Status 2B and > > > transplanted immediately. At that point we realized that our only hope was > > > to turn it all over to God and put it in His hands...and as you can see...I > > > am a walking miracle. I was very sick, but definitely not the closest in the > > > state of Texas to death...at least not that I know of. > > > Then the other frustrating thing is that you can't be TOO sick either > > > to be listed. It is a crazy system...one that I still don't understand. I > > > pray for all of you guys constantly..hoping the system will change quickly!! > > > Much love, > > > Jacquelyn > > > > > > ------------------------------------------------------------------------ > > > The Weather Underground. We provide weather across the world. > > > Visit http://clickhere./click/48 > > > > > > eGroups.com home: /group/ > > > - Simplifying group communications > > > > ------------------------------------------------------------------------ > > eGroups now offers FREE email newsletters! > > Women.com, RollingStone, Travelocity, and more… > > Sign-up Now! http://clickhere./click/315 > > > > eGroups.com home: /group/ > > - Simplifying group communications > > ------------------------------------------------------------------------ > The Weather Underground. We provide weather across the world. > Visit http://clickhere./click/48 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Jacquelyn, Thanks for writing. It helps to know what happened. As much as I want the transplant, and do need it at this point, it is also a little frightening. Your courage and joy are an inspiration. JQS2@... wrote: > Dear , > I would love to share the story of my friend Mike with you. > But I don't want it to discourage any of you, because God's plan is perfect > and it was just God's time to take Mike home. Mike had been suffering with > PSC for the past 13 years. He was a pastor and kept a very very busy > schedule although he never felt very well. He felt God calling him to > continue his pastoring and that's what he did. I admire him so much and am > so honored that he was one of my best friends. > I received an email from his wife last night...it took me an hour to > respond to know exactly the right words to say...but she said that neither > one of his transplants were successful. I believe what happened is that > when the first tx failed he had to wait in ICU for almost a week for another > liver to become available and by that point his body was to weak to accept > the second liver. It was just his time to go be with his Lord!! > I know that the very last thing that Mike would want would be for any > of you to be scared about your outcome b/c as I said, he lived much longer > than the doctors had originally given him (5 years..13 years ago). He got > his dream come true by getting to see his sons graduate high school and > throughout his years led SO many to Christ. One of his sayings that I love > was to.... " Live in the light today...REFUSE to embrace the darkness. " > Everyone please have a very blessed day!! thank you so much > for writing me!! I hope that you are feeling very well!! > I love all of you so much!! > God bless! > Jacquelyn > > ------------------------------------------------------------------------ > The Weather Underground. We provide weather across the world. > Visit http://clickhere./click/48 > > eGroups.com home: /group/ > - Simplifying group communications ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 1999 Report Share Posted May 27, 1999 Jacquelyn-- I'm sure we've all been wondering. If you feel like sharing, I would appreciate that as well. Talk at you again in a few - got to sign off quick. Laurie ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 1999 Report Share Posted May 28, 1999 Dear Dan, Laurie, Jacquelyn, and (and everyone else of course), My feeling is that since PSC is a progressive disease with a predictable end point (i.e, the need for transplantation); and since we are more likely to suffer other serious medical problems if transplantation occurs later rather than sooner (e.g., hepatocarcinoma); and since our disease cannot be managed with medication (as Hepatitis C can be with Interferon, and Autoimmune Hepatitis can be with Prednisone); and since, unlike people with alcoholic cirrhosis, we have not been active agents in causing our condition [a moral/ethical argument, I know, so likely to be more controversial for the medical establishment or even the government], we should receive higher priority in receiving organs. Erwin ------------------------------------------------------------------------ eGroups.com home: /group/ - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
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