Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 Hi Rob Glad you have found us, sorry you needed to. At first it’s really daunting and depressing – very understandable, but never fear. If you are like most people the shock wears off and natural optimism takes over. · This isn’t a death sentence. Some of us have had the disease for years, and still feel pretty decent with treatment. · Transplants aren’t the end of the world either. I’m sure some of the folks who have already had theirs will chime in. I’m waiting for mine. The worst part is the waiting. You have kids, so you will understand. It feels most like being pregnant. You know you are going to the hospital, you just don’t know when. · There are a lot of speculations about cause and diets. I haven’t done as much research as some of the people here, so keep checking the list and look through the archives. There seems to be a genetic aspect, and probably some kind of trigger. But there is research going on to try to find a cure. · There are good treatments out there. Stents help some. Biliary drainage catheters, some. Most of us take something to thin the bile and keep it flowing. There are anti-itch meds, etc. · We are all in this together. Some have UC or IBS in addition to PSC and some don’t, but we are all going to support you. Make sure you have a good transplant center. Make sure your doctors talk to you and explain things fully. Make sure they listen to you. You know your body best, and you will get to know it better. Take care, Anita ====================== My wife and I are kind of lost at sea right now trying to make the best out of a situation that the medical professionals are making it to sound like a coffin getting built. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 8, 2009 Report Share Posted February 8, 2009 This group is outstanding. They are positive and knowledgeable. Let me emphasize that PSC is not a death sentence. I was diagnosed in 1990, but am sure I had both PSC and UC in 1987 when I had an episode that the doctors diagnosed as passing a gall stone. After my diagnosis I was able to lead a fairly normal life. I had a few flares, had to have regular follow-up, and had to take medication but I was able to do all of the things I wanted to do. In mid-2007 I had a flare and became very sick with highly elevated liver enzymes. My bile ducts were too far gone to do anything, so I was listed for transplant. In a lot of ways I was very lucky that my health went downhill so fast. I did not spend a lot of time waiting for a transplant. The transplant went well and I am back to a regular life with no restrictions. I do watch my sugar and salt intake and I must take medication to prevent rejection, but I no longer need the Urso and folic acid for the PSC or the sulfasalizine for the UC. I take fewer meds than I did pre-transplant. I think the key is a positive attitude and when possible keep stress as low you can. It is something that you will develop as the initial shock and anger wear off. Getting both the UC and PSC diagnoses in a short time is one heck of a shock. I do think, at least in my case, that stress plays a part in the behavior of both diseases. The higher the stress the more likely the disease will misbehave. Joe PSC & UC - 1990; Liver Transplant - 2007 From: [mailto: ] On Behalf Of robnjanine2001 Sent: Sunday, February 08, 2009 7:58 AM To: Subject: New to the game hi everyone. I just was diagnosed on 2/4/09 and never saw it coming. Im glad that some people have a positive outlook on this board because when I found out I was terrified and the web didnt offer me much more that panic. I went to the ER on the 2nd for elevated pancreatic and liver enzymes that my DR found and just got home yesterday with 2 stents and a very strict diet. I have been very upset about this because I never saw it coming, im a married 32 year old father of 3 and the youngest is only 3.5 months old. Then all of the sudden out of the blue I have my G.I. talking about transplants and pain( although i already new about pain, the stents were very challenging for the doctors and I woke up screaming until put on a full morphine drip)and all of these other complications so Im obviosly a little depressed. Does anyone know about alternative treatments or better eating ideas? My wife and I are kind of lost at sea right now trying to make the best out of a situation that the medical professionals are making it to sound like a coffin getting built. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 2009 Report Share Posted February 9, 2009 Strangely enough, more of mine have come when I’m on a trip or vacation. Maybe I find free time stressful? Anyway, the first was on vacation over Christmas in Oregon, then in Iceland, Germany. Nita ================ I couldn't agree with you more. I had several episodes of cholangitis lately, and they were all when I was in a lot of stress at work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Hi Hershel, I am 40 years old, and I was diagnosed in 2003, but I had elevated liver enzymes in 2001 already. I do know several other PSC patients in Israel, but from only one I could say that he is in a late stage. He had his evaluation for transplant two years ago. There are transplants performed here in Israel of course, but the demand is way higher than the supply. I am lucky to have an insurance (at my work) that insures transplants outside Israel as well. I don't think the US is the best option for me. I have Dutch citizenship so maybe I will go somewhere in Europe. With cholangitis I mean that I had an infection in my bile ducts, caused (probably) by a blockage in the bile ducts. I had high fever and chills and had to go to the hospital to get IV antibiotics. I had two ERCPs performed in the last two months. Attached please find the Hebrew version of the PSC partners brochure. If you have any further questions, please contact me at: Sykoh1@... Chaim Boermeester, Netanya, Israel From: [mailto: ] On Behalf Of Bob Gruenberg Sent: Monday, February 09, 2009 21:48 To: Subject: RE: New to the game Hey Chaim, I live in Beitar Elite. How old are and how long have you had psc? do you know others i israel that have late stage psc? what do you do if you need a tansplant over here? you go to america? do you have coverage there? buy the way what do you mean by bouts of cholongitis? hershel From: Chaim Boermeester <cboer (AT) rugged (DOT) com> Subject: RE: New to the game To: Date: Monday, February 9, 2009, 12:49 PM Joe, I couldn't agree with you more. I had several episodes of cholangitis lately, and they were all when I was in a lot of stress at work. Regards, Chaim Boermeester, Israel From: @ yahoogroups. com [mailto: @ yahoogroups. com ] On Behalf Of Joe Berry Sent: Sunday, February 08, 2009 19:01 To: @ yahoogroups. com Subject: RE: New to the game This group is outstanding. They are positive and knowledgeable. Let me emphasize that PSC is not a death sentence. I was diagnosed in 1990, but am sure I had both PSC and UC in 1987 when I had an episode that the doctors diagnosed as passing a gall stone. After my diagnosis I was able to lead a fairly normal life. I had a few flares, had to have regular follow-up, and had to take medication but I was able to do all of the things I wanted to do. In mid-2007 I had a flare and became very sick with highly elevated liver enzymes. My bile ducts were too far gone to do anything, so I was listed for transplant. In a lot of ways I was very lucky that my health went downhill so fast. I did not spend a lot of time waiting for a transplant. The transplant went well and I am back to a regular life with no restrictions. I do watch my sugar and salt intake and I must take medication to prevent rejection, but I no longer need the Urso and folic acid for the PSC or the sulfasalizine for the UC. I take fewer meds than I did pre-transplant. I think the key is a positive attitude and when possible keep stress as low you can. It is something that you will develop as the initial shock and anger wear off. Getting both the UC and PSC diagnoses in a short time is one heck of a shock. I do think, at least in my case, that stress plays a part in the behavior of both diseases. The higher the stress the more likely the disease will misbehave. Joe PSC & UC - 1990; Liver Transplant - 2007 From: @ yahoogroups. com [mailto: psc- support@yahoogro ups.com ] On Behalf Of robnjanine2001 Sent: Sunday, February 08, 2009 7:58 AM To: @ yahoogroups. com Subject: New to the game hi everyone. I just was diagnosed on 2/4/09 and never saw it coming. Im glad that some people have a positive outlook on this board because when I found out I was terrified and the web didnt offer me much more that panic. I went to the ER on the 2nd for elevated pancreatic and liver enzymes that my DR found and just got home yesterday with 2 stents and a very strict diet. I have been very upset about this because I never saw it coming, im a married 32 year old father of 3 and the youngest is only 3.5 months old. Then all of the sudden out of the blue I have my G.I. talking about transplants and pain( although i already new about pain, the stents were very challenging for the doctors and I woke up screaming until put on a full morphine drip)and all of these other complications so Im obviosly a little depressed. Does anyone know about alternative treatments or better eating ideas? My wife and I are kind of lost at sea right now trying to make the best out of a situation that the medical professionals are making it to sound like a coffin getting built. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 2009 Report Share Posted February 10, 2009 Hi Hershel, I am 40 years old, and I was diagnosed in 2003, but I had elevated liver enzymes in 2001 already. I do know several other PSC patients in Israel, but from only one I could say that he is in a late stage. He had his evaluation for transplant two years ago. There are transplants performed here in Israel of course, but the demand is way higher than the supply. I am lucky to have an insurance (at my work) that insures transplants outside Israel as well. I don't think the US is the best option for me. I have Dutch citizenship so maybe I will go somewhere in Europe. With cholangitis I mean that I had an infection in my bile ducts, caused (probably) by a blockage in the bile ducts. I had high fever and chills and had to go to the hospital to get IV antibiotics. I had two ERCPs performed in the last two months. Attached please find the Hebrew version of the PSC partners brochure. If you have any further questions, please contact me at: Sykoh1@... Chaim Boermeester, Netanya, Israel From: [mailto: ] On Behalf Of Bob Gruenberg Sent: Monday, February 09, 2009 21:48 To: Subject: RE: New to the game Hey Chaim, I live in Beitar Elite. How old are and how long have you had psc? do you know others i israel that have late stage psc? what do you do if you need a tansplant over here? you go to america? do you have coverage there? buy the way what do you mean by bouts of cholongitis? hershel From: Chaim Boermeester <cboer (AT) rugged (DOT) com> Subject: RE: New to the game To: Date: Monday, February 9, 2009, 12:49 PM Joe, I couldn't agree with you more. I had several episodes of cholangitis lately, and they were all when I was in a lot of stress at work. Regards, Chaim Boermeester, Israel From: @ yahoogroups. com [mailto: @ yahoogroups. com ] On Behalf Of Joe Berry Sent: Sunday, February 08, 2009 19:01 To: @ yahoogroups. com Subject: RE: New to the game This group is outstanding. They are positive and knowledgeable. Let me emphasize that PSC is not a death sentence. I was diagnosed in 1990, but am sure I had both PSC and UC in 1987 when I had an episode that the doctors diagnosed as passing a gall stone. After my diagnosis I was able to lead a fairly normal life. I had a few flares, had to have regular follow-up, and had to take medication but I was able to do all of the things I wanted to do. In mid-2007 I had a flare and became very sick with highly elevated liver enzymes. My bile ducts were too far gone to do anything, so I was listed for transplant. In a lot of ways I was very lucky that my health went downhill so fast. I did not spend a lot of time waiting for a transplant. The transplant went well and I am back to a regular life with no restrictions. I do watch my sugar and salt intake and I must take medication to prevent rejection, but I no longer need the Urso and folic acid for the PSC or the sulfasalizine for the UC. I take fewer meds than I did pre-transplant. I think the key is a positive attitude and when possible keep stress as low you can. It is something that you will develop as the initial shock and anger wear off. Getting both the UC and PSC diagnoses in a short time is one heck of a shock. I do think, at least in my case, that stress plays a part in the behavior of both diseases. The higher the stress the more likely the disease will misbehave. Joe PSC & UC - 1990; Liver Transplant - 2007 From: @ yahoogroups. com [mailto: psc- support@yahoogro ups.com ] On Behalf Of robnjanine2001 Sent: Sunday, February 08, 2009 7:58 AM To: @ yahoogroups. com Subject: New to the game hi everyone. I just was diagnosed on 2/4/09 and never saw it coming. Im glad that some people have a positive outlook on this board because when I found out I was terrified and the web didnt offer me much more that panic. I went to the ER on the 2nd for elevated pancreatic and liver enzymes that my DR found and just got home yesterday with 2 stents and a very strict diet. I have been very upset about this because I never saw it coming, im a married 32 year old father of 3 and the youngest is only 3.5 months old. Then all of the sudden out of the blue I have my G.I. talking about transplants and pain( although i already new about pain, the stents were very challenging for the doctors and I woke up screaming until put on a full morphine drip)and all of these other complications so Im obviosly a little depressed. Does anyone know about alternative treatments or better eating ideas? My wife and I are kind of lost at sea right now trying to make the best out of a situation that the medical professionals are making it to sound like a coffin getting built. Quote Link to comment Share on other sites More sharing options...
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