Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 , You will be in my thoughts when you go for your appt. You are such a special young lady, and I am sure have much more courage than you give yourself credit for! Good luck! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 , You will be in my thoughts when you go for your appt. You are such a special young lady, and I am sure have much more courage than you give yourself credit for! Good luck! Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Good Luck !!!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Good Luck !!!!! Dawn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 I'll be thinking about you and giving you a huge hug and I will need one back on the 15th because I go in for an ERCP. I'm soo scared of infections or complications, not to mention waking up. Michele Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Hi : I will be thinking of you and will keep you in my prayers. Take Care, Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Hi : I will be thinking of you and will keep you in my prayers. Take Care, Doris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 {{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}} Consider yourself hugged. We're with you in spirit. Prayers coming your way Gracie and Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 {{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}} Consider yourself hugged. We're with you in spirit. Prayers coming your way Gracie and Ed Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Dear , I can imagine how scared you are. Even though you act grown up and take on a lot of responsibility, you still are a young person. I'm so glad that your family is going with you. Infact your caregiver(s) need to go with you on these visits from now on. I have been going with Phil ever since he started with the hepatologist. Kaiser does all the pretesting to get on the transplant list where it looks like your tx team will be doing it and believe me it is a very long process. Phil see's his Kaiser hep doc on the 30th and at that time will know if the Kaiser team (they don't do the transplant just the preliminaries) is going to send him to UCLA tx team. We don't feel scared about going to the text team because we want Phil to be on the list so that when he needs one he will have his time in. But when it gets close to needing a transplant I'm sure we'll be real scared. I'm not saying you shouldn't be scared, at your age I would have been terrified. We'll pray for you and you need to pray to God that he gives you the strength to get through it and he will. Peg WYBEAR21@... wrote: > Hi everyone, > I just got back from seeing my GI. And, I found out, he's sending me to > see the transplant team. They are going to call me tomorrow morning to tell > me when my appt. is. I'll keep everyone posted on that. Okay, I realize > that I'm 21, and I'm an adult. But, I'm sooooooo very scared. I wish all of > you could go along with me to hold my hand. (I sound like a child don't I?) > So far, my aunt (an RN), my sister (an LPN), and my father are going to go > with me. I could really use a big group hug right about now! I love you all! > Love, > > > ------------------------------------------------------------------------ > Imagine a credit card with a 0% Intro APR and Instant Approval… > It seems impossible, but it’s not. Visit GetSmart.com’s Credit Card > Finder and click on instant approval cards right now at > http://clickhere./click/1269 > > -- Check out your eGroup's private Chat room > -- /ChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Dear , I can imagine how scared you are. Even though you act grown up and take on a lot of responsibility, you still are a young person. I'm so glad that your family is going with you. Infact your caregiver(s) need to go with you on these visits from now on. I have been going with Phil ever since he started with the hepatologist. Kaiser does all the pretesting to get on the transplant list where it looks like your tx team will be doing it and believe me it is a very long process. Phil see's his Kaiser hep doc on the 30th and at that time will know if the Kaiser team (they don't do the transplant just the preliminaries) is going to send him to UCLA tx team. We don't feel scared about going to the text team because we want Phil to be on the list so that when he needs one he will have his time in. But when it gets close to needing a transplant I'm sure we'll be real scared. I'm not saying you shouldn't be scared, at your age I would have been terrified. We'll pray for you and you need to pray to God that he gives you the strength to get through it and he will. Peg WYBEAR21@... wrote: > Hi everyone, > I just got back from seeing my GI. And, I found out, he's sending me to > see the transplant team. They are going to call me tomorrow morning to tell > me when my appt. is. I'll keep everyone posted on that. Okay, I realize > that I'm 21, and I'm an adult. But, I'm sooooooo very scared. I wish all of > you could go along with me to hold my hand. (I sound like a child don't I?) > So far, my aunt (an RN), my sister (an LPN), and my father are going to go > with me. I could really use a big group hug right about now! I love you all! > Love, > > > ------------------------------------------------------------------------ > Imagine a credit card with a 0% Intro APR and Instant Approval… > It seems impossible, but it’s not. Visit GetSmart.com’s Credit Card > Finder and click on instant approval cards right now at > http://clickhere./click/1269 > > -- Check out your eGroup's private Chat room > -- /ChatPage?listName= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Sorry, I forgot to give you a hug. (((((((()))))))). You should join square dancing we hug a whole lot. In the midwest they call it yellow rock. Peg krooner1@... wrote: > {{{{{{{{{{{{{{{{{{{}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}}} > > Consider yourself hugged. > > We're with you in spirit. Prayers coming your way > > Gracie and Ed > > ------------------------------------------------------------------------ > A shopper’s dream come true! Find practically anything on earth at eBay! > Come and browse the more than 2 million items up for bid at any time. > You never know what you might find at eBay! > http://clickhere./click/1140 > > -- Easily schedule meetings and events using the group calendar! > -- /cal?listname= & m=1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 MICHELLE SO BE SCARED. I HAVE HAD 5 ERCP*S IN A YEAR AND NO COMPLICATIONS AT ALL. MARSHA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Peg, I guess what " freaks " me out the most, is the fact that I was in " remission " for about 2 months, and everything is moving so quickly. It wasn't very long ago that my Dr. told me that I may even be able to live with my own liver for 10 years. (He said this less than 3 months ago). I have said several times, that denial is a wonderful thing, and I lived my life by that. But, now... when it's time to see the transplant team, denial is no longer an option. I know that I'm tired of feeling the way I do, I know that I can't keep going on like this.... but God help me, I don't know how to deal with this. I'm sure I'll get the strength when the time comes. God always provides me with it somehow. Maybe I'm worrying too much over it. It was just bittersweet news. Good, because and end to feeling like this could be in the future, but bad because it means facing reality, and it's also a new phase in life. I will get through this, and I'm sure I will do it with ya'll by my " side " . Please be patient with me, I'm trying to work this all out, and to be " okay " with it. I'm not at all depressed about it, I really am just scared. There's so many issues that run through your head when you think of getting a transplant, I'm sure that I don't have to type them out, all of you have thought about them also. Thanks so very much for everyone's encouraging words, and prayers. I'm always praying for each and every one of you! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Michele, You'll definately be in my prayers! And a huge <HUG> for you too!!! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 Roy, From what my GI said today, My liver enzymes, although they are elevated, are not all that bad. He said that I'm not really close to liver failure at this point in time. But, he said that the disease IS effecting my quality of life. I've been having problems in my knees, BAD joint pain when I bend down, ya'll know about the fatigue, and nausea. And, another reason he wants me to see the transplant team is because of all the infections I have had. He said that each one could be life threatening. He also said that he wants to get me listed before I get VERY sick. Maybe I will talk to the transplant team, and they'll decide it's not time to list me, but I suppose I shouldn't turn down the oppertunity to speak with them when my Dr. thinks it would be such a good idea. You're a wonderful source of information, and support. I'll be keeping both of you in my prayers...please keep us posted on how everything goes! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 , good luck with your appointment. Basically they want to see if you are sick enough to be transplanted but not too sick to survive it. They will also want to talk about insurance or other payment. Based on your postings I would guess that they may decide to list you. But that's just the beginning of a long wait, in all probability. had a good experience with her transplant screening appointment. It took the better part of two days. The hepatologists there had a lot of experience dealing with PSC patients and end stage liver disease (more than the average GI) so they were able to arrange some better treatments for her. For example they put her on Lactulose which definitely helped a lot. Definitely bring along a family member or other potential care giver. They need to understand what this is about. Best wishes, Roy T. UPDATE: > Hi everyone, > I just got back from seeing my GI. And, I found out, he's sending me to > see the transplant team. They are going to call me tomorrow morning to tell > me when my appt. is. I'll keep everyone posted on that. Okay, I realize > that I'm 21, and I'm an adult. But, I'm sooooooo very scared. I wish all of > you could go along with me to hold my hand. (I sound like a child don't I?) > So far, my aunt (an RN), my sister (an LPN), and my father are going to go > with me. I could really use a big group hug right about now! I love you all! > Love, > > > ------------------------------------------------------------------------ > Imagine a credit card with a 0% Intro APR and Instant Approval. > It seems impossible, but it's not. Visit GetSmart.com's Credit Card > Finder and click on instant approval cards right now at > http://clickhere./click/1269 > > > -- Check out your eGroup's private Chat room > -- /ChatPage?listName= & m=1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 , good luck with your appointment. Basically they want to see if you are sick enough to be transplanted but not too sick to survive it. They will also want to talk about insurance or other payment. Based on your postings I would guess that they may decide to list you. But that's just the beginning of a long wait, in all probability. had a good experience with her transplant screening appointment. It took the better part of two days. The hepatologists there had a lot of experience dealing with PSC patients and end stage liver disease (more than the average GI) so they were able to arrange some better treatments for her. For example they put her on Lactulose which definitely helped a lot. Definitely bring along a family member or other potential care giver. They need to understand what this is about. Best wishes, Roy T. UPDATE: > Hi everyone, > I just got back from seeing my GI. And, I found out, he's sending me to > see the transplant team. They are going to call me tomorrow morning to tell > me when my appt. is. I'll keep everyone posted on that. Okay, I realize > that I'm 21, and I'm an adult. But, I'm sooooooo very scared. I wish all of > you could go along with me to hold my hand. (I sound like a child don't I?) > So far, my aunt (an RN), my sister (an LPN), and my father are going to go > with me. I could really use a big group hug right about now! I love you all! > Love, > > > ------------------------------------------------------------------------ > Imagine a credit card with a 0% Intro APR and Instant Approval. > It seems impossible, but it's not. Visit GetSmart.com's Credit Card > Finder and click on instant approval cards right now at > http://clickhere./click/1269 > > > -- Check out your eGroup's private Chat room > -- /ChatPage?listName= & m=1 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 My dearest , We will be there with you all of the way -- in our hearts and souls. I know it must be scary on one hand, but on the other you can now look through the tunnel at the light at the end. Since you are so young and vivacious you will get through all of this with flying colors!!! You have done what no other person has done and helped so many of us get through this mess!! We owe you so much -- you are one heck-of-a-gal! Hang in there, better days are now coming your way!! Hugs, Biddy Re: UPDATE: >Dear , >I can imagine how scared you are. Even though you act grown up and take on a lot >of responsibility, you still are a young person. I'm so glad that your family is >going with you. Infact your caregiver(s) need to go with you on these visits from >now on. I have been going with Phil ever since he started with the hepatologist. >Kaiser does all the pretesting to get on the transplant list where it looks like >your tx team will be doing it and believe me it is a very long process. Phil >see's his Kaiser hep doc on the 30th and at that time will know if the Kaiser team >(they don't do the transplant just the preliminaries) is going to send him to UCLA >tx team. > >We don't feel scared about going to the text team because we want Phil to be on >the list so that when he needs one he will have his time in. But when it gets >close to needing a transplant I'm sure we'll be real scared. I'm not saying you >shouldn't be scared, at your age I would have been terrified. We'll pray for you >and you need to pray to God that he gives you the strength to get through it and >he will. >Peg > >WYBEAR21@... wrote: > >> Hi everyone, >> I just got back from seeing my GI. And, I found out, he's sending me to >> see the transplant team. They are going to call me tomorrow morning to tell >> me when my appt. is. I'll keep everyone posted on that. Okay, I realize >> that I'm 21, and I'm an adult. But, I'm sooooooo very scared. I wish all of >> you could go along with me to hold my hand. (I sound like a child don't I?) >> So far, my aunt (an RN), my sister (an LPN), and my father are going to go >> with me. I could really use a big group hug right about now! I love you all! >> Love, >> >> >> ------------------------------------------------------------------------ >> Imagine a credit card with a 0% Intro APR and Instant Approval… >> It seems impossible, but it’s not. Visit GetSmart.com’s Credit Card >> Finder and click on instant approval cards right now at >> http://clickhere./click/1269 >> >> -- Check out your eGroup's private Chat room >> -- /ChatPage?listName= & m=1 > > > > >------------------------------------------------------------------------ >Click on Instant Credit Card Approval at >http://clickhere./click/1271 > > >-- 20 megs of disk space in your eGroup's Document Vault >-- /docvault//?m=1 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 11, 1999 Report Share Posted November 11, 1999 , Consider yourself hugged. Larry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 athan, I can't remember what you have said about the progression of your disease, but have you had problems with numerous cholangitis infections? This is one of the main reasons they are trying to list me. Another reason is because they said that the symptoms are now effecting my quality of life. Thanks! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 , My GI referred me to Vanderbilt to talk to the transplant doc. there a few months ago. It went really well, and the doctor told me that I couldn't be listed yet, but that he expected I would be sometime in the next few years. One thing that was very encouraging to me was that he told me I could be listed, and then if a liver came available, but I felt I wasn't ready for the transplant yet, I could turn it down without any penalty. That way I could accumulate time on the list without being obligated to get a transplant. So even if they do decide to list you, it doesn't mean you *have* to get a transplant if you don't think you're ready. My prayers are with you! athan WYBEAR21@... wrote: > > Roy, > From what my GI said today, My liver enzymes, although they are > elevated, are not all that bad. He said that I'm not really close to liver > failure at this point in time. But, he said that the disease IS effecting my > quality of life. I've been having problems in my knees, BAD joint pain when > I bend down, ya'll know about the fatigue, and nausea. And, another reason > he wants me to see the transplant team is because of all the infections I > have had. He said that each one could be life threatening. He also said > that he wants to get me listed before I get VERY sick. Maybe I will talk to > the transplant team, and they'll decide it's not time to list me, but I > suppose I shouldn't turn down the oppertunity to speak with them when my Dr. > thinks it would be such a good idea. You're a wonderful source of > information, and support. I'll be keeping both of you in my prayers...please > keep us posted on how everything goes! > Love, > > > ---------------------------------------------------------------------- > [click here] > Click here! > eGroups.com Home: /group/ > www. - Simplifying group communications Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 Let me speak from our experience ,during our hospital stays we saw many people get tx and some die waiting for the tx and also after the tx. The people who had the easiest time recovering were the ones who were the least sick when they went in. If they want to list you after your assessment pleaseconsider it. The earlier you are listed the better chance you have of receiving the right liver. Barb like you was told she was not expected to gointo Liver failure for maybe a year or possibly longer but the also explained the survival rate if you are fairly well compared to if you are in the ICU with Liver failure.They played good Doc bad Doc with her where all the Docs but one said you will have an 80% chance of coming through the TX . Then the one Doc said you realize you could maybe live like this a couple of years? Are you ready to take a 1 in 5 chance you may die during or after surgery. Sounds harsh but both Barb and I needed to look at it from both angles. Then all the Docs came in and said we are willing to list you are you ready to go on the list. Barb said she needed another day to think about it. I remember we left the hospital and went for a long bus ride. Barb was quite upset and I realized she felt she had nocontroll over anything, she was14 yrs old. Itook a deep breath and did what I felt needed to be done. I said Barb I love you worth all my heart and it is you not I who has been feeling so sick and it is You that has to live with this decision. YOU decide I will stick by you and support you no matter what you decide!!! I was scared to death but I realized she need to gain back control over her life. We talked allot that day and onthe plane ride home she told me she had decided to go for it.She phoned the Docs and was listed the next day. She has never regretted her decision. I know you are a smart and mature young woman and you will make the decision that is right for you no matter what I or anyone else says. It is your life. Love in Winnipeg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 12, 1999 Report Share Posted November 12, 1999 , You go girl!!! You're in good hands. This is good news! Try not to feel scared or nervous. Okay? Now here comes my part of the group support...: HUUUUUUG!!!!!!!!!!!!!!!! Good Luck, hon! Love, UPDATE: > Hi everyone,> I just got back from seeing my GI. And, I found out, he's sending me to > see the transplant team. They are going to call me tomorrow morning to tell > me when my appt. is. I'll keep everyone posted on that. Okay, I realize > that I'm 21, and I'm an adult. But, I'm sooooooo very scared. I wish all of > you could go along with me to hold my hand. (I sound like a child don't I?) > So far, my aunt (an RN), my sister (an LPN), and my father are going to go > with me. I could really use a big group hug right about now! I love you all!> Love,> > > ------------------------------------------------------------------------> Imagine a credit card with a 0% Intro APR and Instant Approval.> It seems impossible, but it's not. Visit GetSmart.com's Credit Card> Finder and click on instant approval cards right now at> http://clickhere./click/1269 > > > -- Check out your eGroup's private Chat room> -- /ChatPage?listName= & m=1> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 1999 Report Share Posted November 13, 1999 Thanks, My blood work has come back down some and since they double booked me for the ERCP they have cancelled Monday's appt. and now I need to re-schedule. Happy not to have to go but I wannted to get in over with and now I have to wait until DEC. I'll keep you updated. Michele Quote Link to comment Share on other sites More sharing options...
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