Guest guest Posted April 14, 2005 Report Share Posted April 14, 2005 Hi Sam, Thanks for the call. I will try and reach you today. Ali -Recycle yourself - Become an Organ and Tissue Donor Ali Lingerfelt-Tait alisoikias@... ***** my new address and phone number are: 180 Blackberry Inn Rd. Weaverville, N.C. 28787 828 658-8019 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2005 Report Share Posted May 10, 2005 This sounds like progress . I will keep my fingers crossed that you are placed high on the list. Lee > Sorry I didn't have time to get into any details yesterday, but here's > a little better description of what took place yesterday with the > hep. The doc walked in and asked how I was, and gave me a recap of my > last ERCP findings (and the letter from the endoscopist). He told me > he'd gotten a note about my recurrent cholangitis attacks and asked > when they had taken place. I opened my notebook and gave him the > exact dates, the antibiotic taken and the length of time I was on it. > The next thing out of his mouth was, " We need to open up the > transplant thing again. " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2005 Report Share Posted May 10, 2005 > This sounds like progress . I will keep my fingers crossed that > you are placed high on the list. > Lee Thanks! I'll keep you posted. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 12, 2005 Report Share Posted May 12, 2005 , you have mentioned Denver as volunteering to be your living donor. Is this the same Denver who was an active member of this group and whose wife died following complications from PSC? If so, how is he doing? Fine, I assume if he is planning to be a donor. Margie in MO PSC DX 3/99 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 Hey! I just wanted to give an update on this listing thing. Wed. I called the tx coordinator and Thurs. "my" coordinator returned my call. We talked for nearly an hour! She said she had not received my chart from Dr. Crippin yet so didn't know where things stood. She then took all of my info., asking me a TON of questions and then began to explain my disease and how it causes the liver to fail. I had to smile. However, we did finally get to the Q & A session. The only thing that she told me that I did not like is...that UNOS very rarely approves an "exception"! My heart sank! When she sensed I was anxious about that she said we never know until we try. I just took a deep breath and calmly explained that with PSC you get used to coming across things you have no control over. That was a reminder to myself, actually. She went on to explained where we go from here. She said that they will schedule me for back-to-back appts. for (possibly, if Nov.'s isn't considered recent enough) an MRI, and bloodwork (ERCP & colonoscopy are VERY recent, so not required). Also, because I have a mitral valve prolapse (that I'm medicated for) so I have to see a cardiologist and do a stress echo to ensure that my heart is strong enough to endure the surgery. (Yikes! That made me a little nervous.) She informed me that I would be meeting with a benefits coordinator and social worker. But, she added, Dr. Crippin is on vacation until next Thurs. so she wanted to warm me that I probably wouldn't hear from anyone again until next Fri. She said she would send him an email just to see if he'd respond, and got off the phone. Thirty minutes later she called me back. She said Dr. Crippin called her as soon as he got her email and all tests are set up for 6/7 & 6/8, and possibly the 9th if it's deemed necessary. Her whole demeanor changed and she has been talking about surgery ever since. I have now spoken to the benefits coordinator and they are approved as my tx center. I don't know what Dr. Crippin said to them, but we are "all systems go" at this point. Everyone now is speaking as if there is no doubt that the surgery will take place! I'm comforted by that (mostly), but curious to know what the doc said. Granted, I'll feel better when the final word comes from UNOS! Sorry for being so detailed, but I haven't had much time to process this latest news. My grandmother is failing, so I went to see her yesterday. I think the family has come to terms with the idea that she may not be with us much longer. Our brains have wrapped around that, but our hearts...well, that's a different story! Also, for those of you who have asked, no, still has not seen the doc for bloodwork! I think she's trying to give me a heart attack!!! Silly, kid! (MO) PSC & UC dx '84, chronic pancreatitis dx '97, workup for listing begins 6/7 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 She said Dr. Crippin called her as soon as he got her email and all tests are set up for 6/7 & 6/8, and possibly the 9th if it's deemed necessary. Her whole demeanor changed and she has been talking about surgery ever since. I have now spoken to the benefits , Congrats!! I don't post very often but Dr Cripping was my Dr at Baylor before he left and he really is on the ball, ...however sometimes he seemed distance or has too many things on his mind. Hope your grandmother is okay. Anita G Mansfield Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2005 Report Share Posted May 21, 2005 , Good to hear that everything is proceeding for you! Sorry to hear about your grandmother's worsening condition, though. Tell your silly kid to haul her butt in for some labwork or Monte, , and I will come down there and drag her in ourselves. ;-) Any new word on your brother's situation? Let us know. Peace, Bill Wise PSC '00, Listed Tx 11/04 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Hello, my name is Brittany and I am 19 years old. I live in Florida. I do not have PSC but my boyfriend, who is also 19 but will be 20 in the summer, does. He was recently diagnosed with it perhaps late last year or earlier this year. I just joined this mailing list and in some of the mails I see people discussing 'attacks'. What is a PSC attack? And what exactly does it mean? - brittany Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2005 Report Share Posted May 25, 2005 Hello Brittany; Welcome to the group. It's great that you are informing yourself about PSC to help your boyfriend. Please feel free to ask any questions. I think the " PSC attack " you are referring to most often means " cholangitis " [the C of PSC]. When the bile ducts get blocked this can lead to inflammation or infection of the biliary tree. CHOLECYSTITIS OR CHOLANGITIS http://www.mdadvice.com/library/symp/illness85.html Cholangitis http://www.emedicine.com/emerg/topic96.htm " Cholangitis is an acute infection of the biliary tree. It usually is caused by obstruction of the common bile duct (CBD), which subsequently becomes infected. " Best regards, Dave (father of (19); PSC 07/03; UC 08/03) Quote Link to comment Share on other sites More sharing options...
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