Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC. Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Dr vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi Tammy What a lovely name. Its so great you have the support of your sister and friends. Welcome to our group, you look as if you have got the hang of posting to the group with your 3 postings. I am sure you find support and answers from other members of the group. If you look near the top of the postings page, you will see a Message# and Search Box, if you type key words like 'small duct PSC' into the search box it will bring up previous postings on that subject. Best wishes from the bottom of the world in New Zealand > > Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT&TFrom: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: < >Subject: RE:New At This Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC.Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Drvists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT&TFrom: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: < >Subject: RE:New At This Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC.Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Drvists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Welcome Tammy, This is a great group. I also have small duct PSC and was offically DX 5 years ago though my symptoms began 15 years ago. You have found a great bunch of people Dawn > > Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC. > Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it > sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is > no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Dr > vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! > > Tammy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Welcome Tammy, This is a great group. I also have small duct PSC and was offically DX 5 years ago though my symptoms began 15 years ago. You have found a great bunch of people Dawn > > Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC. > Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it > sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is > no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your.......... too make sure all of that is going well,Dr > vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! > > Tammy > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Thank you for your reply to my email I have told my sister about the site and she is glad that I did email and we both hope that I now have someone to talk with about what I have. She so hard, but when you do not have this disorder it is hard to understand....Again I thank you so much for the reply ! I do have a question maybe you can help with this. I am having a very hard time telling someone I care about allot about what is wrong with me and what it is. This has been very hard for me and I am not sure why. Help ! Has anyone had this issue. Tammy To: Sent: Monday, January 5, 2009 7:32:56 PMSubject: Re: RE:New At This WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT & T From: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: <@ yahoogroups. com>Subject: RE:New At This Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC. Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your........ .. too make sure all of that is going well,Dr vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Thank you for your reply to my email I have told my sister about the site and she is glad that I did email and we both hope that I now have someone to talk with about what I have. She so hard, but when you do not have this disorder it is hard to understand....Again I thank you so much for the reply ! I do have a question maybe you can help with this. I am having a very hard time telling someone I care about allot about what is wrong with me and what it is. This has been very hard for me and I am not sure why. Help ! Has anyone had this issue. Tammy To: Sent: Monday, January 5, 2009 7:32:56 PMSubject: Re: RE:New At This WelcomeYou've come to the right place. I don't think we can tell you why PSC fell in your lot but we sure can share experiences and offer support. Good luckShaulPSC UC Sent via BlackBerry by AT & T From: Tammy Eklund Date: Mon, 5 Jan 2009 13:51:51 -0800 (PST)To: <@ yahoogroups. com>Subject: RE:New At This Hi! My name is Tammy and I am new at this emailing people that I do not know at all. I was told almost 5 years ago that I have small duct PSC. Also told that small duct is better than large duct : ) As my wonderful sister and friends have benn so wonderful to stand behind me in all of this it sometimes hard for me to tell them how I am feeling inside and outside. Lets face it when they tell you there is nothing they can do for you and there is no cure for what you have it is a very hard thing to take. Blood test all the time, ERCP,Things up your........ .. too make sure all of that is going well,Dr vists and so on it gets a little old. I have prayed for an answer and then online support poped in my head, so I am here. Please help me ! Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Tammy, They are debating my stage right now. My last biopsy says stage 1-2 by ERCP says satge 2 possibly early stage 3. I have lost a lot of the small ducts already and some of the larger ducts are forming strictures. I take Ursodol 1200 mgs daily, Multi Vit daily, 600 mgs calcium twice daily, B-12 injections monthly. I have just been placed on a hypoglycemic and low oxalate diet. I also take synthroid .2 daily (Hypothroid disease), Floracorticoid (spelled wrong- adrenal insufficency) and arthrotec for degenerative disc and joint disease and welbutrin for depression. I have a lot going on!!! As for telling people - this is how I told my boyfriend and kids - I have a disease that affects my liver, it will get progressively worse; however, I am doing everything I can to have a full life and fight it. Right now, there is no cure for this disease but there are people who are working to find better treatment options and hopefully they will have one before I get to sick. I don't know if that helps but it has worked well for me with the people I am close to. It takes some of the negativity away from it. Dawn > > > > Hi! My name is Tammy and I am new at this emailing people that I do > not know at all. I was told almost 5 years ago that I have small duct > PSC. > > Also told that small duct is better than large duct : ) As my > wonderful sister and friends have benn so wonderful to stand behind > me in all of this it > > sometimes hard for me to tell them how I am feeling inside and > outside. Lets face it when they tell you there is nothing they can do > for you and there is > > no cure for what you have it is a very hard thing to take. Blood > test all the time, ERCP,Things up your........ .. too make sure all of > that is going well,Dr > > vists and so on it gets a little old. I have prayed for an answer > and then online support poped in my head, so I am here. Please help > me ! > > > > Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Tammy, They are debating my stage right now. My last biopsy says stage 1-2 by ERCP says satge 2 possibly early stage 3. I have lost a lot of the small ducts already and some of the larger ducts are forming strictures. I take Ursodol 1200 mgs daily, Multi Vit daily, 600 mgs calcium twice daily, B-12 injections monthly. I have just been placed on a hypoglycemic and low oxalate diet. I also take synthroid .2 daily (Hypothroid disease), Floracorticoid (spelled wrong- adrenal insufficency) and arthrotec for degenerative disc and joint disease and welbutrin for depression. I have a lot going on!!! As for telling people - this is how I told my boyfriend and kids - I have a disease that affects my liver, it will get progressively worse; however, I am doing everything I can to have a full life and fight it. Right now, there is no cure for this disease but there are people who are working to find better treatment options and hopefully they will have one before I get to sick. I don't know if that helps but it has worked well for me with the people I am close to. It takes some of the negativity away from it. Dawn > > > > Hi! My name is Tammy and I am new at this emailing people that I do > not know at all. I was told almost 5 years ago that I have small duct > PSC. > > Also told that small duct is better than large duct : ) As my > wonderful sister and friends have benn so wonderful to stand behind > me in all of this it > > sometimes hard for me to tell them how I am feeling inside and > outside. Lets face it when they tell you there is nothing they can do > for you and there is > > no cure for what you have it is a very hard thing to take. Blood > test all the time, ERCP,Things up your........ .. too make sure all of > that is going well,Dr > > vists and so on it gets a little old. I have prayed for an answer > and then online support poped in my head, so I am here. Please help > me ! > > > > Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Tammy, They are debating my stage right now. My last biopsy says stage 1-2 by ERCP says satge 2 possibly early stage 3. I have lost a lot of the small ducts already and some of the larger ducts are forming strictures. I take Ursodol 1200 mgs daily, Multi Vit daily, 600 mgs calcium twice daily, B-12 injections monthly. I have just been placed on a hypoglycemic and low oxalate diet. I also take synthroid .2 daily (Hypothroid disease), Floracorticoid (spelled wrong- adrenal insufficency) and arthrotec for degenerative disc and joint disease and welbutrin for depression. I have a lot going on!!! As for telling people - this is how I told my boyfriend and kids - I have a disease that affects my liver, it will get progressively worse; however, I am doing everything I can to have a full life and fight it. Right now, there is no cure for this disease but there are people who are working to find better treatment options and hopefully they will have one before I get to sick. I don't know if that helps but it has worked well for me with the people I am close to. It takes some of the negativity away from it. Dawn > > > > Hi! My name is Tammy and I am new at this emailing people that I do > not know at all. I was told almost 5 years ago that I have small duct > PSC. > > Also told that small duct is better than large duct : ) As my > wonderful sister and friends have benn so wonderful to stand behind > me in all of this it > > sometimes hard for me to tell them how I am feeling inside and > outside. Lets face it when they tell you there is nothing they can do > for you and there is > > no cure for what you have it is a very hard thing to take. Blood > test all the time, ERCP,Things up your........ .. too make sure all of > that is going well,Dr > > vists and so on it gets a little old. I have prayed for an answer > and then online support poped in my head, so I am here. Please help > me ! > > > > Tammy > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi Tammy, You have come to the right place. Everyone here has perspective on this disease that nobody else can. We are all patients or caregivers. All very close to the problem. Some of us have had liver transplants. Some are on the waiting list. Others are still managing their care in other ways. No matter what though, you can tell us what you are feeling and know that we will understand. You can ask questions any time of day or night, and we’ll be there to answer with our own experiences and research. We are all here to help and support each other. I think that the biggest thing for me was knowing I’m not alone. Most everyone I run into has no idea what PSC is. Most medical people just scratch their heads. It took nearly 10 years to get a diagnosis. Knowing that there are people here who do understand means the world to me. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi Tammy, You have come to the right place. Everyone here has perspective on this disease that nobody else can. We are all patients or caregivers. All very close to the problem. Some of us have had liver transplants. Some are on the waiting list. Others are still managing their care in other ways. No matter what though, you can tell us what you are feeling and know that we will understand. You can ask questions any time of day or night, and we’ll be there to answer with our own experiences and research. We are all here to help and support each other. I think that the biggest thing for me was knowing I’m not alone. Most everyone I run into has no idea what PSC is. Most medical people just scratch their heads. It took nearly 10 years to get a diagnosis. Knowing that there are people here who do understand means the world to me. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi Tammy, You have come to the right place. Everyone here has perspective on this disease that nobody else can. We are all patients or caregivers. All very close to the problem. Some of us have had liver transplants. Some are on the waiting list. Others are still managing their care in other ways. No matter what though, you can tell us what you are feeling and know that we will understand. You can ask questions any time of day or night, and we’ll be there to answer with our own experiences and research. We are all here to help and support each other. I think that the biggest thing for me was knowing I’m not alone. Most everyone I run into has no idea what PSC is. Most medical people just scratch their heads. It took nearly 10 years to get a diagnosis. Knowing that there are people here who do understand means the world to me. Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 This is what I was told as well. He said " ee, you are not going to die young from liver disease. You are far more likely to die with this than from it " . Hang in there Tammy. I know how you feel, I spent the first few weeks certain this was the beginning of the end for me, ahead of schedule. The more you learn, the more confident you will become. ee > The doctor who diagnosed my PSC and UC told me in 1990 that his goal was to > treat me so that I would live a full life and die from old age and not PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 This is what I was told as well. He said " ee, you are not going to die young from liver disease. You are far more likely to die with this than from it " . Hang in there Tammy. I know how you feel, I spent the first few weeks certain this was the beginning of the end for me, ahead of schedule. The more you learn, the more confident you will become. ee > The doctor who diagnosed my PSC and UC told me in 1990 that his goal was to > treat me so that I would live a full life and die from old age and not PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 This is what I was told as well. He said " ee, you are not going to die young from liver disease. You are far more likely to die with this than from it " . Hang in there Tammy. I know how you feel, I spent the first few weeks certain this was the beginning of the end for me, ahead of schedule. The more you learn, the more confident you will become. ee > The doctor who diagnosed my PSC and UC told me in 1990 that his goal was to > treat me so that I would live a full life and die from old age and not PSC. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Joe thank you for your answer I am glad that you are doing well. Why di dy you say look for fevers? Is that a big deal? I have been fighting fever off and on for 5 years. By the time I get to the Dr.alot of the time they are gone or not over 99.9 or a 100.00 the consdier that low grade. My labs are regular all the time For the most part I do not let this get to me, and now I feel so much better that I have found other people who have what I have. How are you seens your transplant? > > Hi Tammy, > > > > The doctor who diagnosed my PSC and UC told me in 1990 that his goal was to > treat me so that I would live a full life and die from old age and not PSC. > I was diagnosed in 1990 and for 17 years lived a fairly normal life. I then > had a transplant in 2007 and again I am leading a fairly normal life. > > > > As Anita said, pay attention to your body, especially fevers, great fatigue, > take your meds, and get regular labs. This disease is not a death sentence. > > > > > Joe > > 1990-PSC, UC, 2007-Tx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 6, 2009 Report Share Posted January 6, 2009 Joe thank you for your answer I am glad that you are doing well. Why di dy you say look for fevers? Is that a big deal? I have been fighting fever off and on for 5 years. By the time I get to the Dr.alot of the time they are gone or not over 99.9 or a 100.00 the consdier that low grade. My labs are regular all the time For the most part I do not let this get to me, and now I feel so much better that I have found other people who have what I have. How are you seens your transplant? > > Hi Tammy, > > > > The doctor who diagnosed my PSC and UC told me in 1990 that his goal was to > treat me so that I would live a full life and die from old age and not PSC. > I was diagnosed in 1990 and for 17 years lived a fairly normal life. I then > had a transplant in 2007 and again I am leading a fairly normal life. > > > > As Anita said, pay attention to your body, especially fevers, great fatigue, > take your meds, and get regular labs. This disease is not a death sentence. > > > > > Joe > > 1990-PSC, UC, 2007-Tx > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Thank you Anita for the advice I will talk to the Dr. on Tuesday when I see him for my test we do a CT and a lovely colon test : ) You know the old lets do a whole day befor of going to the bathroom.. You were right I thought I was just strange with my body temp not being like everyone els. Now I know it is just this strange thing we have, so have a great evening enjoy life and all that God has Blessed us with and I will talk to you soon. God's Peace Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Thank you Anita for the advice I will talk to the Dr. on Tuesday when I see him for my test we do a CT and a lovely colon test : ) You know the old lets do a whole day befor of going to the bathroom.. You were right I thought I was just strange with my body temp not being like everyone els. Now I know it is just this strange thing we have, so have a great evening enjoy life and all that God has Blessed us with and I will talk to you soon. God's Peace Tammy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Thank you Anita for the advice I will talk to the Dr. on Tuesday when I see him for my test we do a CT and a lovely colon test : ) You know the old lets do a whole day befor of going to the bathroom.. You were right I thought I was just strange with my body temp not being like everyone els. Now I know it is just this strange thing we have, so have a great evening enjoy life and all that God has Blessed us with and I will talk to you soon. God's Peace Tammy Quote Link to comment Share on other sites More sharing options...
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