Guest guest Posted May 21, 2000 Report Share Posted May 21, 2000 I talked to Jacquelyn for a long time yesterday. They haven't been able to find the source of her fever. The news is not good so I don't want to go into it in detail to everyone. If anyone wants the details please e-mail me privately palfeld@... or palfeld@.... Peg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 23, 2000 Report Share Posted June 23, 2000 I sent Jacquelyn a private msg encouraging her once again to go to Mayo. Steve & i have been trying to get her there for over a yr now. Also told her about my anitibiotic regimen I am back on for pouchitis - maybe if she mentions that to her dr they may try it for her. Tks for the update, Peg. Laurie Jacquelyn update > Jacquelyn called me this morning. I've been trying to reach her for days > without much success. > They have determined that she has severe Chrons disease. This is what they > believe was causing her fever and paralization, sores in mouth and throat, > etc. > > This has nothing to do with her vascular problem although they feel the > vascular problem is aggrevating the Chrons and of course they have put off > doing anything about that due to the severe Chrons problem. Kind of a catch > twenty two. They are also talking about sending her to Mayo. I tried to > encourage her to do that, she has some reservations about cost and being > away from her children any more. > > She has been hospitalized for 5 weeks and says that they are going to send > her home. I tried convincing her to get a wheel chair so she wouldn't be on > her feet/legs. But she can be a very stubborn lady with a lot of > determination and pride. > > Anyway they are putting her back on the 10 mg or prednisone (which did not > help in the past) and Tentsasa. Luanne, or anyone, if you have any other > suggestions she'd like to hear them. > She is still having about 6 bouts of it a day and has lost 20 lbs. > > Barb, she said if you decide to stay at Baylor the doctors she likes is > Goldstein and Levy. But when it comes to surgery or emergencies you get who > is on call. > > Well that's about all that I know right now. > > Peg, wife of Phil(57), UC 30 yrs, dx PSC 12/98, listed 2/2000-status 3, live > in So. Calif. > > > > ------------------------------------------------------------------------ > Looking for SUPPORT on lowering Long Distance bills? Join beMANY! > Our huge buying group gives you Long Distance rates which fall > monthly, plus an extra $60 in FREE calls! > http://click./1/4830/8/_/24674/_/961005933/ > ------------------------------------------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 Barby-- Cipro for 2 wks, followed by Augmention for 2 wks, then back to Cipro. Had been on this regimen since 1987 since pouchitis for me is chronic. Just put me back on this regimen since my tx surgery--had taken me off it, hoping wouldn't need it, but no such luck. Laurie Re: Jacquelyn update > Laurie, > What antibiotics are you on for pouchitis? My surgeon prescribed Flagyl > whenever it rears its ugly head and it works great. > > Barby > > ------------------------------------------------------------------------ > STEALS AND DEALS! Cheapest prices on airfare, new cars, insurance, maids, > contractors, collectibles, more. Get exactly what you want at the lowest > price. New FREE service! > http://click./1/5746/11/_/24674/_/961727229/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 Peg, Thanks for the JQ update. I can't believe all that has gone wrong since the tx. I'll keep her, Luke and the kids in my prayers. Dianne Arneill AIH/PSC/Lupus/Sjogren's Dpa1228@... (Castle Rock, CO) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 Dear Peg, we all love you so much....keep up your strenght, we will all be here for you. Love Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 > I wonder whether this is a new problem, or whether it may have been the > cause of her complications? > > Thanks Roy T. I wondered that too and asked her she said they didn't think so. The proof will be if the contant diarreha stops and some of the other problems. But again now she has more problems. We couldn't talk long but I also asked if they were able to get rid of the scare tissue from all the previous surgeries because I very often that that might be her problem (my mom had a problem with scare tissue strangling her colon) and some of her symptoms sounded similar. I've decided to wait a couple days to call her since she said she might have her phone turned off and it was hard to talk since she was in a lot of pain. Right now I don't feel like a very good caregiver and am having problems keeping myself emotionally in control (I came back to some real difficulties at work I wish I could walk away from it but I'm trapped like many of you PSCers and caregivers because of the insurance and income) so I don't want to be burdening her with my problems and when we talk she is as good at listening to me as talking about herself. That's one of the reasons I love her so and I say one of the reasons, I don't think there is a sweeter person on earth and find it so hard to understand why all this is happening to her. Peg, wife of Phil (57), UC 30 years, dx PSC 12/98, listed-status 3-UCLA-2/2000, living Los Angeles suburbs, CA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 29, 2000 Report Share Posted June 29, 2000 Thank you . Peg/Mom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2000 Report Share Posted June 30, 2000 Thanks for the update, Peg. I just cannot BELIEVE what all Jacquelyn has and is going through. She is an inspiration to us all. She continues to be in my nightly prayers. Laurie Jacquelyn Update > Just got a call from Jacquelyn she's back at Baylor. She had a tumor in her > right pelvis and they had to go in and remove it. They also took her right > ovary. They think it is benign but haven't got the test results yet. > > She called me on my 800 number at work so we really couldn't talk much. > I'll update you as I get info. > > Peg, wife of Phil(57), UC 30 yrs, dx PSC 12/98, listed 2/2000-status 3, live > in So. Calif. > > > > ------------------------------------------------------------------------ > Lonely? Get Firetalk! > Free, unlimited calls anywhere in the world. > Free voice chat on hundreds of topics. > http://click./1/5477/11/_/24674/_/962291902/ > ------------------------------------------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
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