Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 , Sorry to read that Fred is having so much trouble and is back in club med. One thing that most PSCers can relate to is the line from The Bucket List..."never trust a fart". But rectal bleeding is a whole new level, isn't it? Tell Fred I'm thinking of him and praying for terrific results with the Remicade. Need a job? Find employment help in your area. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 , I'm praying for that cradle robber (We all need prayer and forgiveness, even cradle robbers). I know you were looking into IV GLUTATHIONE. Has Fred tried it yet? I certainly understand if Fred is not wanting to try it while things are not settled I hope things have not become unsettled after trying it? Ian Yo my PSC Peeps--Fred was discharged after 5 days in Club Med (or the Big House, as Sandi Pearlman calls it) Friday afternoon, only to be re-admitted this morning with lots of rectal bleeding. (New symptom for him.) He said he felt like his colon was trying to expel itself, which certainly doesn't sound very pleasant to me.So...tomorrow he starts Remicade, as it seems like the best option to us and we had to make a change. The only thing working to ANY degree to control his UC as of late was high dose IV steroids. He'll hopefully return home Tues. or Wed. if the Remicade does, indeed, " rock, " like the gastro thinks it will for him.Wife of Fred PSC 03/04, UC 03/06, Pancreatitis, bacterial bug (Bubba), and terribly awful UC flare up 03/09 (Is March over yet already???) -- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 , I'm praying for that cradle robber (We all need prayer and forgiveness, even cradle robbers). I know you were looking into IV GLUTATHIONE. Has Fred tried it yet? I certainly understand if Fred is not wanting to try it while things are not settled I hope things have not become unsettled after trying it? Ian Yo my PSC Peeps--Fred was discharged after 5 days in Club Med (or the Big House, as Sandi Pearlman calls it) Friday afternoon, only to be re-admitted this morning with lots of rectal bleeding. (New symptom for him.) He said he felt like his colon was trying to expel itself, which certainly doesn't sound very pleasant to me.So...tomorrow he starts Remicade, as it seems like the best option to us and we had to make a change. The only thing working to ANY degree to control his UC as of late was high dose IV steroids. He'll hopefully return home Tues. or Wed. if the Remicade does, indeed, " rock, " like the gastro thinks it will for him.Wife of Fred PSC 03/04, UC 03/06, Pancreatitis, bacterial bug (Bubba), and terribly awful UC flare up 03/09 (Is March over yet already???) -- Ian Cribb P.Eng.cell: (6...Enefen - Reviewer/Designerwww.enefen.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 Ian and - Thanks for wishes and prayers. Ian, to answer your question. As I already mentioned to you, I knew the process of getting glutathione infusions for Fred would be like a part time job for me, and I already have several of those. But I was certainly willing to give it a try. However, his being in the hospital all last week and then going back in yesterday has held me back in getting the glutathione ball rolling. He reached a critical juncture Sunday and something had to be done. So we went the Remicade route today. Fred spoke with the hospital pharmacist today about glutathione. He actually told Fred it was ILLEGAL TO DO IV GLUTATHIONE INFUSIONS (at least in Georgia). So that shows you how ignorant or unknowing the medical profession is on the benefits of IV glutathione. The nurses had never heard of glutathione, and Fred's gastro seemed puzzled as well. I brought in some literature and one nurse copied it. (Neurologists use IV glutathione with great success with their Parkinson's patients, and Fred's previous hepatologist had given his " OK " on it, but also gave no direction on where to get it.) So like I say, we ran out of time on the IV glutathione. Would have required numerous man (woman) hours to have even gotten to first base, I'm convinced. Hope we see some improvement in Fred's condition soon, as neither he nor I can imagine him being discharged until the Big D lets up. High dose IV steroids do absolutely nothing anymore - except give him a little energy and mental clarity! (Who is out of energy and mental clarity at this point and going to bed!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 > > Fred spoke with the hospital pharmacist today about glutathione. He > actually told Fred it was ILLEGAL TO DO IV GLUTATHIONE INFUSIONS (at > least in Georgia). So that shows you how ignorant or unknowing the > medical profession is on the benefits of IV glutathione. ======================= -- when I was in the hospital last year, I asked the GI dr. who was seeing me (one of my dr's many partners) if I couldn't keep the PICC line in place since I had to have an MRCP the following week. She was horrified and told us in no incertain terms that was illegal to leave the hospital with a PICC line in place and we absolutely would not do such a thing!!!! We knew that wasn't true since I had had them at home before. I think we can just take the last few words off your last sentence so that it reads " That shows you how ignorant or unknowing the medical profession is ..... " !!!! That's why we always tell people -- when you find a dr. who's willing to answer questions and shows genuine concern and compassion for your situation, hang on to 'em for dear life!!! There just aren't that many great ones out there. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 > > Fred spoke with the hospital pharmacist today about glutathione. He > actually told Fred it was ILLEGAL TO DO IV GLUTATHIONE INFUSIONS (at > least in Georgia). So that shows you how ignorant or unknowing the > medical profession is on the benefits of IV glutathione. ======================= -- when I was in the hospital last year, I asked the GI dr. who was seeing me (one of my dr's many partners) if I couldn't keep the PICC line in place since I had to have an MRCP the following week. She was horrified and told us in no incertain terms that was illegal to leave the hospital with a PICC line in place and we absolutely would not do such a thing!!!! We knew that wasn't true since I had had them at home before. I think we can just take the last few words off your last sentence so that it reads " That shows you how ignorant or unknowing the medical profession is ..... " !!!! That's why we always tell people -- when you find a dr. who's willing to answer questions and shows genuine concern and compassion for your situation, hang on to 'em for dear life!!! There just aren't that many great ones out there. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2009 Report Share Posted March 30, 2009 > > Fred spoke with the hospital pharmacist today about glutathione. He > actually told Fred it was ILLEGAL TO DO IV GLUTATHIONE INFUSIONS (at > least in Georgia). So that shows you how ignorant or unknowing the > medical profession is on the benefits of IV glutathione. ======================= -- when I was in the hospital last year, I asked the GI dr. who was seeing me (one of my dr's many partners) if I couldn't keep the PICC line in place since I had to have an MRCP the following week. She was horrified and told us in no incertain terms that was illegal to leave the hospital with a PICC line in place and we absolutely would not do such a thing!!!! We knew that wasn't true since I had had them at home before. I think we can just take the last few words off your last sentence so that it reads " That shows you how ignorant or unknowing the medical profession is ..... " !!!! That's why we always tell people -- when you find a dr. who's willing to answer questions and shows genuine concern and compassion for your situation, hang on to 'em for dear life!!! There just aren't that many great ones out there. Regards, Carolyn B. in SC Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 , Please give my get well wishes to Fred !! I hope they get every thing set to rights soon. Take care of yourself too, I know it is stressful. Lee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 , Please give my get well wishes to Fred !! I hope they get every thing set to rights soon. Take care of yourself too, I know it is stressful. Lee > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 Lee- Thanks for good wishes, will tell Fred. Carolyn- EXCELLENT advice, which I would expect from you! And you know, we had the opportunity to leave a picc line in yesterday from his Remicade infusion. Silly us - we had it removed. I need to put you on my speed dial for situations like this Carolyn! You are a great resource - you've been there, done that (or most of THAT, whatever THAT is.) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2009 Report Share Posted March 31, 2009 See, Sheller. You and F-Dog are MANDATORY parts of the upcoming conference...but tell F-Dog he can leave Bubba at home! Sandi (aka Mini Pearl - All hostages of the Big House need a street name, right?) > Please tell Fred we need him back in good shape for > the male PSCr's table at the conference. Quote Link to comment Share on other sites More sharing options...
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