Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 OK, group, I'm here to whine this morning -- consider yourselves forewarned. I'm suffering from many severe symptoms, all at once, and it's starting to kick my 'arse'. (See, Ivor, I was paying attention!) We got home from the conference on Sunday night and Monday I was appropriately fatigued. However, Tuesday was worse, despite the fact that I rested and took good care of myself on Monday. And, there has been an increase in fatigue ever since and by Saturday I couldn't get off the couch for more than 10-15 min. Sunday morning I got some reprieve, and was able to cook Easter dinner, but by mid afternoon I was back to the couch. This morning I'm on the couch and have already popped some Compazine! Yes, the nausea is another huge problem. I have taken Compazine, for nausea, since 1997, but today I'll be requesting something different, as it no longer does the trick. I have Tigan suppositories for the bad days when the Compazine isn't enough, but I'd rather take something orally if I'm going to use it every day (as I'm sure you can imagine!). I have heard from several members that Zofran works well, so that's what I'm going to shoot for. Between the increase in itching, the debilitating fatigue (yes, debilitating!) and the nausea, I feel like I'm being ganged up on. I sent an email to my coordinator this morning telling her about the attack of symptoms. The last time I had this number and severity of symptoms was in 1997, when I spent the majority of 4 mo. in the hospital. I'm big on mind over matter and always fight HARD to overcome. This time I feel like I haven't taken even a half of a step forward. (I'm actually laying on the couch with my laptop on my legs, writing!) I'm so sorry to whine! I know these are things most of you endure. It's not often that I feel this beaten and I'm having a hard time taking this lying down! (But lying down is all I can seem to do!) Although, I asked for a Rx for Wellbutrin in the note to my coordinator this morning, also, in hopes that it will reduce the fatigue. Please pray that they get some medications to me that will help make these symptoms bearable, if not resolve them! Thanks for lending an ear for me to whine into. I'll keep you posted as to what the docs have to say. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 -Joy, Thanks for the understanding! I'm sorry any of us have to go through this junk, it makes life far more interesting than I'm inclined to desire! I got an email back from my coordinator and she said she's going to take my emails to the docs and she'll get back with me when she has some answers. I have never looked forward to hearing from her! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Sounds like you are going though a rough time and who better to turn to than other psc suffers we have all gone though this in our lifes and if we haven't know doubt our time will come. I can say I have been though this and it isn't nice I do hope that your doctors can find something to ease your symptoms. rememeber we are all here for you. We all don't mind listerning to you its better to get how you feel off your chest than to block it all up inside as it will only get worse.hope you are feeling better soon. sending hugs your way kelly-joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 --, Sorry to hear you are feeling poorly. I hope you get some working medications soon and that you feel better. Will keep you in my prayers. Take care of yourself. And whine away. Do not worry about that. Rita Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 , You dear heart…I can just picture you on the couch with your computer on your legs. I don’t have any words of wisdom. I just want you to know that you are in my thoughts and not to feel alone. That is the worst part of anything is feeling alone. Let us know what the doc decides. No cholangitis-like pain though right? Is that a good thing? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 (and I don't have HE, so I am sure it worked for me.) Ricky, I appreciated the humor, and yes, I'm sure, too. :-) I hope I never forget how to laugh no matter how bad the HE gets! I just heard from the tx team and they are sending me out Wellbutrin, but the only suggestion they had for nausea was Reglan 4 times (rather than 3) per day. I don't think that's going to cut it, so I called my endo. and requested Zofran. I pray they call me out a Rx! They have changed my lactalose (yuky liquid) to Neomycin (pill) for the HE, and now they're switching the Prevacid solutab back to pill form, as well. I'm bound to beat this nausea one way or the other. I am certainly willing to try acupuncture if my insurance will pay for it. The other thing I've had luck with in the past, but I hadn't remembered until today, is ginger root. Again, I'm bound to beat this nausea! While you're here did you get my email re: the forms for a PSC Partners fundraiser? I had you send me the forms once, but I cannot locate them and is getting to work on the battle of the bands fundraiser. If you wouldn't mind, would you resend them. You can just send them via email. Thanks for taking to tend to my whining. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Thanks , I'm getting some new meds and hope that I'm better in no time! Thanks for the prayers, they are always priceless! (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 , After I read your email I felt pretty silly -- it hadn't occurred to me that I might be having a cholangitis attack. I DO have all the symptoms which usually start with fatigue, then progresses to nausea and then pain. DUH! I am to pick up some new meds this evening and hope that will give me relief, but I am also going to increase my antibiotic dose. The tx team gave me free reign to increase from the one per day, as protection against cholangitis, to 3 per day for infection. If I had read this before I got off the phone with my coordinator I would have brought it up. I may just go tomorrow and have blood work done and check my ALP and white count (I have standing orders at the lab nearby.) Either way, thanks for thinking of me! Hugs, (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hi , It's the pits to be experiencing all those debilitating symptoms at once, so feel free to keep whining. It's too bad that none of us lives close enough to pay you a cheer-up visit, but please remember that we're all thinking of you. I hope that some of the issues can be at least partially resolved by trying new meds. I have one suggestion for the nausea that worked for me (but free advice is worth what you pay for it.) About a month ago, I was having a bout of nausea, and wanted to try an alternative method. I went to a Chinese acupuncturist who was terrific. Honestly, as soon as she put the needles in, my nausea disappeared. I had to go back several times to have another acupuncture treatment, but it was really successful for me (and I don't have HE, so I am sure it worked for me.) It might be worth a try along with trying new meds....Keep us updated about your progress, and feel free to keep whining. That's why we're all here. Ricky too many symptoms! OK, group, I'm here to whine this morning -- consider yourselves forewarned. I'm suffering from many severe symptoms, all at once, and it's starting to kick my 'arse'. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Lee, Thanks! has a fund raiser book of her own so she can just copy it while she's at work. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hang in there !Do keep letting the docs know how you feel so that they can make sure that you keep moving up on the transplant list.This is no time to be stoic.Thinking of you and sending you some spare energy over cyberspace~! Lee Please pray that they get some medications to me that will help make these symptoms bearable, if not resolve them! Thanks for lending an ear for me to whine into. I'll keep you posted as to what the docs have to say. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Dear ,I am just back from Tampa and going through my emails.The fundraiser proposal form is in your fundraising booklet and you can just copy it off right from the booklet!Let me know if you have misplaced your booklet and then I will find them to email.Lee (and I don't have HE, so I am sure it worked for me.) R While you're here did you get my email re: the forms for a PSC Partners fundraiser? I had you send me the forms once, but I cannot locate them and is getting to work on the battle of the bands fundraiser. If you wouldn't mind, would you resend them. You can just send them via email. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 > Zofran is the gold standard in my opinion -- it's expensive, but it is the only thing that works for me. Here's a thought .... have you tried ginger capsules or flakes? Penny > some Compazine! Yes, the nausea is another huge problem. > I have taken Compazine, for nausea, since 1997, but today I'll be > requesting something different, as it no longer does the trick. I have Tigan > suppositories for the bad days when the Compazine isn't enough, but I'd rather take > something orally if I'm going to use it every day (as I'm sure you can > imagine!). I have heard from several members that Zofran works well, so that's what > I'm going to shoot for. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2006 Report Share Posted April 17, 2006 Hi I can only give you my support and sympathy. I have a weird thing that always seems to help me. I eat dry Ramón noodles. My family always when I don't feel good because I reach for the noodles. They seem to soak up some of the acid and cut the nausea. Barbara Doyle Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2006 Report Share Posted April 18, 2006 Hi , I hope that the new meds will at least take the edge off of your symptoms and give you some much deserved relief... I'll write to you offline about the forms for the battle of the bands... Ricky Re: too many symptoms! (and I don't have HE, so I am sure it worked for me.) Ricky, I appreciated the humor, and yes, I'm sure, too. :-) I hope I never forget how to laugh no matter how bad the HE gets! I just heard from the tx team and they are sending me out Wellbutrin, but the only suggestion they had for nausea was Reglan 4 times (rather than 3) per day. I don't think that's going to cut it, so I called my endo. and requested Zofran. I pray they call me out a Rx! They have changed my lactalose (yuky liquid) to Neomycin (pill) for the HE, and now they're switching the Prevacid solutab back to pill form, as well. I'm bound to beat this nausea one way or the other. I am certainly willing to try acupuncture if my insurance will pay for it. The other thing I've had luck with in the past, but I hadn't remembered until today, is ginger root. Again, I'm bound to beat this nausea! While you're here did you get my email re: the forms for a PSC Partners fundraiser? I had you send me the forms once, but I cannot locate them and is getting to work on the battle of the bands fundraiser. If you wouldn't mind, would you resend them. You can just send them via email. Thanks for taking to tend to my whining. (MO)PSC & UC '84, chronic pancreatitis '97, listed for tx 06/05for details see www.caringbridge.org/visit/melaniejs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2006 Report Share Posted April 19, 2006 , Where are you from? I was just wondering. Didn't you say you are waiting for transplant at Cleveland Clinic? My husband and I are close to Cincinnati and he had transplant at Uuniversity of Cincinnati in 8 days from being listed. Thought that might be a option for you, if you are close by. My husband is now one year post transplant and is doing great. KNOCK ON WOOD!!!! Take Care and Good Luck Tina wrote: , You dear heart…I can just picture you on the couch with your computer on your legs. I don’t have any words of wisdom. I just want you to know that you are in my thoughts and not to feel alone. That is the worst part of anything is feeling alone. Let us know what the doc decides. No cholangitis-like pain though right? Is that a good thing? How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates. Quote Link to comment Share on other sites More sharing options...
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