Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 Hi! Dawn thank you for your reply I told my sister about the site and she was happy that I did it that way I would find out that I was not the only one with this thing, so you have had it for sometime now. May I ask what stage you are at and what meds if any you are on. It is so nice to know that other people out there have the same thing that you have. I have kept this to myself for the most part I mean my family knows and some very close friends and my bosses, but know one ells does. I want to tell this one person who has become important to me in my life, but what do you say oh by the way I have this liver disorder which could kill me in 2 days or 5 years. It is a very hard thing to have in your life. If it was not for my faith in God I think I would be mental by now : ) Tammy To: Sent: Monday, January 5, 2009 8:13:52 PMSubject: Re: RE:New At This 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 peopleDawn >> 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! Dawn thank you for your reply I told my sister about the site and she was happy that I did it that way I would find out that I was not the only one with this thing, so you have had it for sometime now. May I ask what stage you are at and what meds if any you are on. It is so nice to know that other people out there have the same thing that you have. I have kept this to myself for the most part I mean my family knows and some very close friends and my bosses, but know one ells does. I want to tell this one person who has become important to me in my life, but what do you say oh by the way I have this liver disorder which could kill me in 2 days or 5 years. It is a very hard thing to have in your life. If it was not for my faith in God I think I would be mental by now : ) Tammy To: Sent: Monday, January 5, 2009 8:13:52 PMSubject: Re: RE:New At This 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 peopleDawn >> 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, Keep in mind that yes, this can kill you in 2 days or 5 years, but there is hope for a long productive life. Keep a pulse on the way your body feels and don’t ignore an infection – get right in for antibiotics if you get chills and fever. The best hope long-term is a liver transplant. Has your doctor talked to you about that? I met one woman who had her transplant 16 years ago and she’s doing great. I’m on the list myself. Have a biliary drain in my liver, which helps keep the infections under control, though I’ve gotten a couple even with the drain. I took ursodiol (Actigal) for a while, but had some nasty side effects, and the doc put me on one Phenobarbital a day to keep the bile thin. Other than that, just taking things to control high blood pressure and reflux – nothing to do with the PSC. As far as the special person is concerned – I’d pick a time away from hustle and bustle. Maybe to a quiet restaurant and just say you have something you need to say, and please let you finish before asking any questions. Be honest about the condition, but don’t say, “I’m gonna die soon,” because with good care you probably won’t. Best of luck – anyone worth your affections will step up to support you. Anita From: [mailto: ] On Behalf Of Tammy Eklund Sent: Monday, January 05, 2009 8:48 PM To: Subject: Re: Re: RE:New At This Hi! Dawn thank you for your reply I told my sister about the site and she was happy that I did it that way I would find out that I was not the only one with this thing, so you have had it for sometime now. May I ask what stage you are at and what meds if any you are on. It is so nice to know that other people out there have the same thing that you have. I have kept this to myself for the most part I mean my family knows and some very close friends and my bosses, but know one ells does. I want to tell this one person who has become important to me in my life, but what do you say oh by the way I have this liver disorder which could kill me in 2 days or 5 years. It is a very hard thing to have in your life. If it was not for my faith in God I think I would be mental by now : ) Tammy To: Sent: Monday, January 5, 2009 8:13:52 PM Subject: Re: RE:New At This 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 Hi Tammy, Keep in mind that yes, this can kill you in 2 days or 5 years, but there is hope for a long productive life. Keep a pulse on the way your body feels and don’t ignore an infection – get right in for antibiotics if you get chills and fever. The best hope long-term is a liver transplant. Has your doctor talked to you about that? I met one woman who had her transplant 16 years ago and she’s doing great. I’m on the list myself. Have a biliary drain in my liver, which helps keep the infections under control, though I’ve gotten a couple even with the drain. I took ursodiol (Actigal) for a while, but had some nasty side effects, and the doc put me on one Phenobarbital a day to keep the bile thin. Other than that, just taking things to control high blood pressure and reflux – nothing to do with the PSC. As far as the special person is concerned – I’d pick a time away from hustle and bustle. Maybe to a quiet restaurant and just say you have something you need to say, and please let you finish before asking any questions. Be honest about the condition, but don’t say, “I’m gonna die soon,” because with good care you probably won’t. Best of luck – anyone worth your affections will step up to support you. Anita From: [mailto: ] On Behalf Of Tammy Eklund Sent: Monday, January 05, 2009 8:48 PM To: Subject: Re: Re: RE:New At This Hi! Dawn thank you for your reply I told my sister about the site and she was happy that I did it that way I would find out that I was not the only one with this thing, so you have had it for sometime now. May I ask what stage you are at and what meds if any you are on. It is so nice to know that other people out there have the same thing that you have. I have kept this to myself for the most part I mean my family knows and some very close friends and my bosses, but know one ells does. I want to tell this one person who has become important to me in my life, but what do you say oh by the way I have this liver disorder which could kill me in 2 days or 5 years. It is a very hard thing to have in your life. If it was not for my faith in God I think I would be mental by now : ) Tammy To: Sent: Monday, January 5, 2009 8:13:52 PM Subject: Re: RE:New At This 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 6, 2009 Report Share Posted January 6, 2009 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 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 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 Well said, Joe! ------------------------ 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 Well said, Joe! ------------------------ 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 Well said, Joe! ------------------------ 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 Tammy, A fever is important, because your body is telling you that something is not right. I was told that I should call whenever my fever was 100.5 or higher. I was fortunate and did not have too many of those until I got really close to transplant. Since my transplant I have not been able to build my stamina as quickly as I want. It has been 15 months and I still get tired sooner than I like. Other than that, I must watch my salt and sugar intake. I have been able to live a normal life and do all of the things that I enjoy, like gardening. Joe From: [mailto: ] On Behalf Of tammyeklund Sent: Tuesday, January 06, 2009 11:16 PM To: Subject: Re: RE:New At This 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 Hi Tammy, Regarding fevers... A lot of us have low body temps, too. Check yours off and on when you are feeling really good. If your normal body temp is, say 97.2, and you have a temp of 100, you really have a 3 degree fever. The doctor I saw in the hospital on Monday said that your body can also be fighting off a cholangitis attack, and you can have a sub-clinical infection. So you still need antibiotics even though you have a low grade fever. If you get to the doctor and they don't take you seriously find another doctor. Our situation is not like someone without PSC who can afford to ignore a small fever. Every bit of infection you get inflicts further damage on your liver. Take care, Anita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2009 Report Share Posted January 7, 2009 Hi Tammy, Regarding fevers... A lot of us have low body temps, too. Check yours off and on when you are feeling really good. If your normal body temp is, say 97.2, and you have a temp of 100, you really have a 3 degree fever. The doctor I saw in the hospital on Monday said that your body can also be fighting off a cholangitis attack, and you can have a sub-clinical infection. So you still need antibiotics even though you have a low grade fever. If you get to the doctor and they don't take you seriously find another doctor. Our situation is not like someone without PSC who can afford to ignore a small fever. Every bit of infection you get inflicts further damage on your liver. Take care, Anita Quote Link to comment Share on other sites More sharing options...
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