Guest guest Posted December 31, 1998 Report Share Posted December 31, 1998 Dear , Hello! My name is Jacquelyn, I am 27 years old and have been diagnosed for 8 years with PSC. Against doctor's recommendation, but giving God all the glory, my husband and I have had 2 healthy miracle babies. is 4 and Calvin is almost 2. I actually went into remission during the pregnancy b/c their livers filtered the toxins for mine. My OB/GYN was very nervous through the entire pregnancy and we ended up delivering both babies very early, but they are fine. The only advice I can tell you is to trust in God with all of your heart and let Him be your confidence. Pray about it and let Him show you and your dear husband the way to go. He's always faithful. Now I am Status 3 at a huge hospital in Texas and the list is extremely long. I've been on the list for 16 months and still no word (and no beeper) but we just stay focused on our precious little family and on all of the blessings we've been given. Take care and I'll be praying for you, Jacquelyn ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 1999 Report Share Posted January 1, 1999 Jacquelyn-- What is it that " tipped the scales " that put you on the list for a transplant? Any clue as to the waiting time? I agee with you--you have to put your life and concerns in God's hands. Though, I must admit, it's awfully hard to at times. I will say, though, that since joining this group and being able to share experiences and faith, that I feel a little more at ease w/my health situation. Take care everyone. C. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 1999 Report Share Posted January 1, 1999 , The " tipping of the scales " was my recurrent cholangitis infections. I have 5-6 per year that land me in the hospital. Take care, Jacquelyn ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 2, 1999 Report Share Posted January 2, 1999 Jacquelyn - I've only had that once to where I had to be hospitalized. Was on IVs for over a week. Had liver surgery after that. I was the first one (lucky me) to have my gall bladder used as a patch over the top of my main duct into the liver. I couldn't believe I was the first one since I was at Mayo Clinic in Rochester, MN. The surgeon was pretty happy w/himself when he came out after the surgery & reported it to my husband. That was in '89 and no cholangitis episodes bad enough to hospitalize me. I know that has slowed up my transplant situation, but I'm getting closer again. C. ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 Dan Bertles wrote: > > , > > I don't mind others joining the group, but do feel that this is for PSC, not > other liver diseases. If that standard is kept, then great. This doesn't > mean that we only talk about PSC, but the group shouldn't be diluted > especially if support is offered with other groups. > > Once again my $0.02 > > Dan > > > Re: New Member > > > > What does everyone think about a person that doesn't have PSC joining the > > group? I will add her name if you all would like. I am not trying to > > keep > > ANYONE from joining this group..but my original reason for creating it was > > for > > " patients, and family members of patients with Primary Sclerosing > > Cholangitis " > > I will do what everyone thinks is right. > > Love, > > > > > > ------------------------------------------------------------------------ > > Fresh flowers are the perfect way to say " I love you " . > > Shipped direct from the grower, Proflowers.com has > > arrangements from $29.95 plus S & H. > > Click here: http://offers./click/216/0 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 Dirk, I don't think we should open ourselves to support all liver disease patients. It's not that I don't care, nor is it because I don't think we have anything to gain from research, discussion, etc. I left the Liver Support group (LiverSupport-L@...) because I got bogged down with all the other issues and all the other e-mail. If we accept all liver diseases, why does this group exist? LiverSupport-L does that. I was very grateful to for starting this group. It's more intimate and more specific. I like that! Penny mentioned in a private e-mail how fast this group is growing. I'm beginning to loose track of who some of the new people are. If we keep this group to PSC, we will still be able to know each other without getting lost at least for a while longer. The person who requested to join has PBC, but wanted to join to provide information to others who have PSC who are not on this list. I think anyone should be more than welcome to join especially for that reason, but let's not water down the intimacy by doing what is already being done somewhere else. Well, this was far more than $0.02 worth; maybe a buck fifty. Sorry. Dan > Re: New Member > ...I would recommend we open ourselves to support of all liver disease > patients. One of our biggest tasks is simply getting the word out, and > ensuring that more organs are available through donars by the time each > of us (if ever) is in need. The more people informed, the more family > members and friends can join our circle. > ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 9, 1999 Report Share Posted February 9, 1999 I was gonna put together a reply on the " opening to non-PSC folks " issue, but when I just read Dan's I found he has done it for me. I agree with his comments - I, too,left the LiverSupport-L group because there was more non-PSC stuff that wasn't relative than there was PSC stuff. I like the idea of this being open to anybody interested in PSC even if they don't have it, but don't think the topics should get off onto liver diseases other than PSC. That's my $1.50 (borrowed from Dan). Bill > Re: New Member > > > ...I would recommend we open ourselves to support of all liver > disease > > patients. One of our biggest tasks is simply getting the word out, and > > ensuring that more organs are available through donars by the time each > > of us (if ever) is in need. The more people informed, the more family > > members and friends can join our circle. > > > > ------------------------------------------------------------------------ > Fresh flowers are the perfect way to say " I love you " . > Shipped direct from the grower, Proflowers.com has > arrangements from $29.95 plus S & H. > Click here: http://offers./click/216/0 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 1999 Report Share Posted February 10, 1999 On this subject I think it might be a good idea to come up with a FAQ (frequently asked questions) and maybe statement of the purpose of this group that we could post periodically and maybe put on our website. What do you all think? We could post potential questions and answers, and try to come to a concensus on the final form of the FAQ. Here are a few starters that I thought of.... (note that the answers are just my opinion and can be altered or totally changed based on the wishes of the group) Q. Who is this group open to? A. PSC patients and their friends and family members. People with related diseases are welcome to join, but we try to keep the subject focused on topics directly related to PSC, so please no off topic posts. Q. What is the purpose of this group? A. As the name PSC-support suggests, there are two purposes for this group: 1. To provide information on symptoms, treatments and other issues related to PSC 2. To provide emotional, spiritual, and informational support to people with PSC, their friends and their families. Q. What do the abbreviations and terms I see on this list mean? A. PSC -- Primary Sclerosing Cholangitis LFT -- Liver Function Test PBC -- Primary Biliary Cirosis URQ -- Upper Right Quadrant UC -- Ulcerative Colitis Urso -- Short for Ursodeoxycholic Acid. A medication that many of us take. (I'm sure there are others that I can't think of right now.. anyone?) Anyone else with comments, other questions or if you want to vote yes or no to even having a FAQ, let us know! I'd be willing to compile the list (if we decide to have one) if no one else would rather do it. athan Dan Bertles wrote: > > Dirk, > > I don't think we should open ourselves to support all liver disease > patients. It's not that I don't care, nor is it because I don't think we > have anything to gain from research, discussion, etc. I left the Liver > Support group (LiverSupport-L@...) because I got bogged down > with all the other issues and all the other e-mail. If we accept all liver > diseases, why does this group exist? LiverSupport-L does that. I was very > grateful to for starting this group. It's more intimate and more > specific. I like that! > > Penny mentioned in a private e-mail how fast this group is growing. I'm > beginning to loose track of who some of the new people are. If we keep this > group to PSC, we will still be able to know each other without getting lost > at least for a while longer. > > The person who requested to join has PBC, but wanted to join to provide > information to others who have PSC who are not on this list. I think anyone > should be more than welcome to join especially for that reason, but let's > not water down the intimacy by doing what is already being done somewhere > else. > > Well, this was far more than $0.02 worth; maybe a buck fifty. Sorry. > > Dan > > > Re: New Member > > > ...I would recommend we open ourselves to support of all liver > disease > > patients. One of our biggest tasks is simply getting the word out, and > > ensuring that more organs are available through donars by the time each > > of us (if ever) is in need. The more people informed, the more family > > members and friends can join our circle. > > > > ---------------------------------------------------------------------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 10, 1999 Report Share Posted February 10, 1999 athan-- I agree with your FAQ idea and the questions you propose. Good idea! Laurie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Welcome Bill: Welcome to the group. I, too, am 43, and in the very early stages, asymptomatic. Enyoy the skiing, it will help with the psyche, which I think is the hardest part. Mitch Atlanta, GA ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Bill, Welcome to the support group! I hope that we can truly help you. Love, ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Welcome Bill, My case is similar to yours although I was diagnosed 8 years ago. I'm fairly near the PorterCare Center in Denver and my dr. sent me there a year & a half ago to be evaluated. They said then that I was probably 2-5 years from being put on a list. I, too, had never known or been in touch with anyone else with PSC until Payton's story came out. Soon thereafter I found this group and it's been wonderful hearing from others in the same " leaky boat " as one of them said recently! Again, welcome. Peggy McG ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 1999 Report Share Posted March 3, 1999 Welcome, Bill. I'm 44, was diagnosed with PSC in 1987, though my liver enzymes were elevated as far back as in 1980 at which time I had several bouts of pericholangitis. I have yet to be placed on the transplant list, but may be there soon as I have an appt. Mar. 22 at a transplant center in Omaha. My point is--a person can go YEARS with this and not need a transplant--I'm one example. Had I known YEARS ago I'd still be fighting this now, I may not have gone through the YEARS with all the anxiety I did, knowing I'd still be in the waiting game now. So----enjoy life now and put it in the back of your mind as much as you can. Take Care and enjoy your trip! Laurie ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 1999 Report Share Posted March 20, 1999 Roy, Welcome to the group!!!! My symptoms are: URQ pain (frequently), nausea, edema, and hair loss. (I don't know for sure that the hair loss is a symptom of this, but it does seem to be) Love, ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 1999 Report Share Posted March 20, 1999 Roy, hi and welcome to the group. I too am a new member, having joined about a month ago, and I have found it very helpful to be able to sign on every day, as I have learned alot from the other members and feel much less alone. My husband, who is also 41, was diagnosed with PSC this past year. Like your wife, his symptoms were only elevated LFTS. It took about 2 years to get a final diagnosis, after 3 gastroenterologists, one internist and a 2 hepatologists. His doctor feels, that since his initial elevations in LFTs went back as early as 1984, and crept up little by little, that he may have had PSC for as long as 15 years. Thank God he does not have UC, at least not yet. He is basically symptom free, on Actigall 300mg three times and day and doing very well for now. I pray his good health continues indefinitely, as we are sending off one boy to college next year and busy raising another who is 10. I guess, however, there is never a convenient time to get sick! In any event, welcome and I hope you enjoy the group. It has given me alot of hope for the future, especially when I hear of all the wonderful things some members are doing, such as having babies, etc. What better reason to continue to fight to stay well than a new little girl? My best to you and your wife. Liz ------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 24, 1999 Report Share Posted August 24, 1999 Welcome Dave... I'm the mom of Tyler (16 yr old PSC<AIH<Crohns and Rhuemtoid Arthritis...It sound like you have definitely made lemonade out of lemons...Good for you...Ty is a Junoir in HS and interested in the medical field...I hope he finds as much joy in his job as you do... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 25, 1999 Report Share Posted August 25, 1999 Hi Dave...Unfortunately I know way to much about UC...My other son who is 21 has had UC since he was 3 yrs old...Both boys see the same GI doc in Childrens Hospital in Philly... So far he has not had any other problems...Tys meds also haelp with his Crohns...like you withyour UC... Feel well... Luanne Ty's mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Thank you to all of you out there for each other. I hope I can help someone someday that this is new to PSC, but for now I am learning how to deal with all of this through you. I am having some kind of attack of pain in my URQ. Saturday it sent me to the hospital and today I waited to see if it would pass but did call my GI. I am instructed to go to the hospital if it reoccurs and I will see him tomorrow at 12:30 if not before. I can't even explain this pain, it imobolizes me I can move or talk or do ANYTHING but wait for it to pass it is in my side and goes across my upper stomach when the attack is happening, otherwise it is more a constant pain that I can handle at other times. Please let me know if anyone else experiences this before I go to the doctor tomorrow and he tells me... I shouldn't be feeling this way! I do feel this way!!! No I want him to tell me WHY!! Thanks Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Biddy, Maybe I was wrong maybe I can help someone else even thought this is all new to me, I know that just knowing others out there are going through what you are does help. I was diagnosed 3 months ago with PSC I had occasional pain and would tell my husband " I feel like I have a gallbladder " . But jaundice and itching is what sent me to the GI along with high liver enzyems. Ever since the ERCP I have had a dull achy pain (URQ) But only last week did I start feeling worse, more severe pain then usual, and the this past Saturday I had my first attack, and then again today (Monday). I go to the GI tomorrow I will let you know what happens. I am not sure yet if he is supportive and the doctor I plan to stay with or not. What did you mean your pain was a good sign, tell me a little about your PSC and how it started and how long you've had it. I think the darvoct makes me sicker espically if I have'nt eaten. So glad we met, Vicki Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Larry, At the time I was diagnosed with Gilbert's I was perfectly healthy, so no further tests were done. I'm not sure of the extent of my Mediterranean background. Elevated bilirubin was the only clue. Norm Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Welcome to the group! Your story sounds similar to mine in ways. I was first diagnosed as having gallstones when I got really sick the first time. Then the night before my ERCP the stone which had been blocking the duct passed, and I felt much better. They went ahead and did the ERCP anyway because they suspected PSC based on the other tests they'd run. The ERCP confirmed the PSC.... that was about 8 years ago. Again welcome to the group! athan sleepy5916@... wrote: > > Hi all, > I think I finally figured out how to post here, time will tell! > I have been in contact with and one other person ( sorry I forget your name) but thank you for welcoming me so nicely. I tend to get on line when I am feeling the worst, trying to find anything and everything out I can. Which was the same old thing ( a discription of PSC) until God finally led me to all of you! I was diagnosed 3 months ago after jaundicing and itching and having urine the color of coke. An ultrasound and catscan showed nothing, the GI I went to WAS SURE that I had a stone in my bile duct. My blood work had gotten better even before the ERCP but we went ahead with the procedure. ( I don't know how much better) Well there was no stone and I was diagnosed with 95% assurity with PSC. I was put on Actigall and given a base line cancer blood level, which came back " good " . I got very sick for two weeks after " a ton of bile " as the doc said, was released. I asked to go off of the Actigall as I was feeling so nauseas and thought it might be causing it. The d! oc agreed since my blood work " looked better than it should " . I have had a lot of bad days since all of this started. My blood work still continues to look good but I feel like I have a gallbladder (which I don't) most days. I didn't have this problem til diagnosed although occationaly I would tell my husband that it felt like I still had my gallbladder, that feeling would pass after a few minutes. It took 7 years for the doctors to take out my gallbladder (5 years ago)and after having every test coming back normal during that time and every doctor acting like I was either a hypocondrite or a mental patient, finally one of the surgeons did a different test that showed my gallbladder did not function right - they don't usually do surgery for this but since I had so many problems he di. MY GALLBLADDER WAS FULL OF TINY STONE! I think all of that was connected to this PSC and I just pray that they listen to me about what is going on with my body now. Sorry to rant and rave, it fee! ls so good to talk with others that know some of the things I am going through. I will close now, if I haven't put all of you to sleep by now. LOL Thank you for listening. Thank you for your stories, I will be looking forward to chating with all of you, Sorry so long I will not be so windy next time,Vicki > > ---------------------------------------------------------------------- > [it's a Free World]It's a Free World > eGroups.com home: /group/ > www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Hi! Welcome to this site and never apologize about being windy -- I must be the worst but sometimes we have so much to say -- to get out to people who really understand. Never, never hold back on your messages because you think you are too " windy. " You are going to love this site and the people on it. Oh my gosh they are so understanding and helpful. Don't know how I got this far without them. One of the best on this site is Jacquelyn and she is in the hospital now and this upsets me. She is a great gal! When she gets back " online " , you will see what I mean! Again, welcome! Hugs, Biddy new member >Hi all, >I think I finally figured out how to post here, time will tell! >I have been in contact with and one other person ( sorry I forget your name) but thank you for welcoming me so nicely. I tend to get on line when I am feeling the worst, trying to find anything and everything out I can. Which was the same old thing ( a discription of PSC) until God finally led me to all of you! I was diagnosed 3 months ago after jaundicing and itching and having urine the color of coke. An ultrasound and catscan showed nothing, the GI I went to WAS SURE that I had a stone in my bile duct. My blood work had gotten better even before the ERCP but we went ahead with the procedure. ( I don't know how much better) Well there was no stone and I was diagnosed with 95% assurity with PSC. I was put on Actigall and given a base line cancer blood level, which came back " good " . I got very sick for two weeks after " a ton of bile " as the doc said, was released. I asked to go off of the Actigall as I was feeling so nauseas and thought it might be causing it. The doc agreed since my blood work " looke am going through. I will close now, if I haven't put all of you to sleep by now. LOL Thank you for listening. Thank you for your stories, I will be looking forward to chating with all of you, Sorry so long I will not be so windy next time,Vicki > > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Hi Vicki! I just cannot believe what you wrote. Here you are a new member and it must have been " kismet " that sent you to this site. I have been on this site for about a year now and have learned so much. But, I really haven't found anyone that has this extreme pain that I have been experiencing for 2-1/2 years!! I used to be a workalcholoic ( I know this is the wrong spelling, but I just can't remember how to spell it) , but the pain brought me to my knees and I had to quit! I did work a year with this horrible symptom. I have been to a pain-management center and of course my docs. My docs really don't believe me that it is as horrible as it is. I do have, thank God, my family doc that has seen me in these and she is a BELIEVER! I have been on Percoset for about 2 years. I don't know if I am addicted because that was a big concern for me. When I told all of my docs about this concern they said -- and you worry about this -- why? I don't want to become a druggie -- that is my biggest fear. However, when this incredible pain hits, I take my pill -- sometimes up to three-a-day, but usually averages out to one-a-day! There used to be months, weeks and days that the pain didn't appear at all -- but when it did -- watch out! I have only been to the ER four times for the pain, but the orders are to take blood and give me a shot -- they have been so nice because I really don't need X-rays and all of that. I do wish I had good news for you and after all, everyone is different and your pain may go away soon -- I will definitely pray for that! I feel so sorry for you. The pain, as you know, is awful but I have built up a great tolerance to pain -- sometimes I can " suck it up! " One thing you have GOT to be thankful for is that you have a doctor that believes you!! Anymore info you want and I am sure you don't want anymore for me, I will be glad to talk about. Just talking and finding someone who is experiencing this is unbelievable -- maybe we can help ourselves. Have long have you had this? How did it start? How long have you been diagnosed with PSC? My pain, actually which was a good sign, started as a dull pain in the URQ. It stayed like that for about 6 months and then it started getting worse. Hang is there -- maybe a doctor can cure you and then that would help me because I want to be cured of this so bad!! Oh, the pain doctor told me that there was nothing in the world he could do for me, just do what I am doing with the Percoset. Hugs, Biddy Re: new member >Thank you to all of you out there for each other. I hope I can help someone >someday that this is new to PSC, but for now I am learning how to deal with >all of this through you. I am having some kind of attack of pain in my URQ. >Saturday it sent me to the hospital and today I waited to see if it would >pass but did call my GI. I am instructed to go to the hospital if it reoccurs >and I will see him tomorrow at 12:30 if not before. I can't even explain this >pain, it imobolizes me I can move or talk or do ANYTHING but wait for it to >pass it is in my side and goes across my upper stomach when the attack is >happening, otherwise it is more a constant pain that I can handle at other >times. Please let me know if anyone else experiences this before I go to the >doctor tomorrow and he tells me... I shouldn't be feeling this way! I do feel >this way!!! No I want him to tell me WHY!! >Thanks Vicki > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Re: new member >Thank you to all of you out there for each other. I hope I can help someone >someday that this is new to PSC, but for now I am learning how to deal with >all of this through you. I am having some kind of attack of pain in my URQ. >Saturday it sent me to the hospital and today I waited to see if it would >pass but did call my GI. I am instructed to go to the hospital if it reoccurs >and I will see him tomorrow at 12:30 if not before. I can't even explain this >pain, it imobolizes me I can move or talk or do ANYTHING but wait for it to >pass it is in my side and goes across my upper stomach when the attack is >happening, otherwise it is more a constant pain that I can handle at other >times. Please let me know if anyone else experiences this before I go to the >doctor tomorrow and he tells me... I shouldn't be feeling this way! I do feel >this way!!! No I want him to tell me WHY!! >Thanks Vicki > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 30, 1999 Report Share Posted August 30, 1999 Vicki, I am so glad we met also. Some of the people on this site has had pain, but I haven't heard of any that has had it all of the time. I have posted several times about the pain, but you are the first, as it seems, that your pain describes what I have. I have never been jaundice or had the itching. I do have, now, the beginning of confusion. I used to say I couldn't tell the difference and so did my family " LOL " , but now it is getting embarrassing when I am out. Be sure and tell me what your doc says. Hugs, Biddy Re: new member >Biddy, >Maybe I was wrong maybe I can help someone else even thought this is all new >to me, I know that just knowing others out there are going through what you >are does help. >I was diagnosed 3 months ago with PSC I had occasional pain and would tell my >husband " I feel like I have a gallbladder " . But jaundice and itching is what >sent me to the GI along with high liver enzyems. Ever since the ERCP I have >had a dull achy pain (URQ) But only last week did I start feeling worse, >more severe pain then usual, and the this past Saturday I had my first >attack, and then again today (Monday). I go to the GI tomorrow I will let you >know what happens. I am not sure yet if he is supportive and the doctor I >plan to stay with or not. >What did you mean your pain was a good sign, tell me a little about your PSC >and how it started and how long you've had it. >I think the darvoct makes me sicker espically if I have'nt eaten. >So glad we met, >Vicki > >------------------------------------------------------------------------ > >eGroups.com home: /group/ > - Simplifying group communications > > > > > Quote Link to comment Share on other sites More sharing options...
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