Guest guest Posted December 24, 2006 Report Share Posted December 24, 2006 Leah, I'm glad that you all have some answers from Robbie's recent tests. From my own experience, I can say that the cells looked very different on my right lobe and my left. Of course, my biopsies were years apart, and I'm sure a lot happened in between. The docs always said that it was my left lobe that went first based on my MRCPs and ERCPs, so when we had to get a biopsy that showed cirrhosis to get me listed at one transplant center, I insisted that they take the sample from the left lobe. It showed all of the cirrhosis that we knew was there. As far as the CCA testing, I can understand your concerns. All three of the transplant centers where I was listed wanted these labs drawn every three months. They didn't look at any one set of values too closely, but instead looked for trends. If my CA-19-9 or my AFP were to have gone steadily up, then they would have used other tests to more aggressively look for CCA - at least, that's what they told me - I was blessed enough to not have that happen. It is good to hear that Robbie has started taking Urso. After transplant, I had external bile drains. When I started taking the urso, I could see a visible difference in the consistancy of the bile. Never before had I been totally sold on the stuff because I itched when I took it. Now, I take it despite some low-level itching it causes because I know for a fact it is doing something. Thank goodness those drains are gone now and I don't have to see the stuff. I hope hearing my experiences help. I'm sure others could provide more worthwhile info. on the CCA stuff as well as the biospy sampling. Happy Holidays, Deb in VA PSC 1998 (1st biopsy 1997), UC 1999, Listed Ltx 2001, 2nd biopsy 10/2004, LDLTX 5/19/2005, Anastamosis strictures and bile drains 9/2005 - 3/2006, Partial Portal Vein thrombosis 7/20/2005, Varicies and intestinal bleed 8/2006, 3 sinus surgeries in 2006. Looking forward to Christmas like a child! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2007 Report Share Posted January 1, 2007 > > He has put us on URSO (just started). Hi Leah and Robbie I am sure you would have had a lovely christmas with your little ones and I hope 2007 will be a better year. I do not know if URSO is subsidised in Australia, but in New Zealand it is not normally subsidised by Pharmac. As it is felt that it does not lengthen the time before a liver transplant is needed. One person that I do know in NZ who has it subsidised did because it stopped his itching - not as a preventative medicine. Best wishes and do keep in touch from New Zealand Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Hi, Guys I haven't posted in while so let me catch you up. After spending a couple of months on the list I read a few books on FB and I decided that I had been so OVER DOCTORED with no benefit that I needed to take matters in to my own hands, so I went to the GP and came off all meds in one go. It was excruitiatingly painful and I dont recommend it for the faint hearted, but I did it and then I sat down with the Dr and we started from scratch each week a symptom and a medication each one was tested on its own and I got to experience each drug and its SIDE EFFECT in and of itself and seriously I am not kidding, I could not beleive how many medications designed to make you better actually make you sicker. The Epilepsy and Anti Dep drugs mess with your head SOOO MUCH, and even though I am not cured of my FB I still am taking meds, I am taking a fraction of the meds I was on and I feel so much better. I realised that there is no cure for this and no one really cares if you lie in bed all day because you are too sick to get up, but it's your life you are missing out on, so now I worked out I must eat this much, I must sleep this much, I must drink this much each day, where this brace, that gadget for pain and pills are the very last thing on the list to take and I went back to UNI. I have hired Barristers to deal with my legal problems and I am back at school, extremely broke from the nightmare but my boobs are intact and I well PACE MYSELF, I have an 80 year old body in 35 year old and if I pace myself according to my health not my expectation I am doing well !!! so much better. SO for all of you facing a nightmare sitting and rocking, STOP, come off everything and START AGAIN you have NOTHING to loose and everything to gain. Dr's arent G-ds there more like Quack's how many professions do you know where if they get it wrong you go back, I fire my mechanic for less and they arent working on my life. Have Fun Bonnie Re: experiment - didn't take my cymbalta today I agree with you guys, I to am taking a handfull of meds and my husband has epilepsy and just one of his meds would be like 400 a month if not for both of our insurances. and with me now on the 5month of leave with out pay in attempts to retire from the federal government (disabilty as I am 2 years shy of a full retirement) i can understand completly. plus it seems like all the doctors want to prescribe the newest in medication. One of these days I am just going to out and out ask the doctors " you get a cut for prescribing the new stuff? " as i fiqure out each time the drug reps come and visit you must be getting something... Diane --- debra van ness wrote: > Healthcare access in this country is a pitiful state > of affairs. I just don't get it. We live in one of > the wealthiest countries in the world and yet > working class and low income people have to suffer > because of lack of funds. Healthcare???? Come on. > That is just as necessary as food and water. And > with an illness like this, running out of medication > is inhumane. Damn it! > Bless you honey, > hang in there, > hugs, > Debra V. > > jeribelle2000 wrote: > Due to DH's job change, and the cost of > the Cobra insurance til we go > on his new insurance, I'm going to run out of all of > my meds (about a > dozen!) before then. I just cannot pay 3 month's > Cobra plus copays. I > have a bit of Fluoxetine left from before my PCP > changed me to > Cymbalta, so I'm going to take a Fluoxetine one day > a week or so to > try and stretch my Cymbalta. Well, today I took the > Fluoxetine, as > well as the Ultram ER, and let me tell you, what a > difference. Hubby > noticed I was hobbling and in terrible pain. He just > doesn't get it, > how sick I am. My feet are killing me today. Anyhow, > I will run out > of the Ultram ER also, before the insurance starts. > I could go back > on my generic tramadol, which doesn't provide near > the pain relief, > but that's the way of the working class, isn't it. > > Many of the other meds I can get at Kmart for $5 a > month, so that's > no biggie. But when I last discussed statins with my > PCP, she > insisted I take either Lipitor or Lovastatin. Well, > Lipitor is out of > the question price-wise. And the Lovastatin isn't > much less. I > frankly don't know what I'm going to do. I expect I > may be able to > get a little bit of Cymbalta samples from my PCP, > but I don't think > she gets the statin samples. As far as the Tramadol, > I'll just have > to go with the generic, though it doesn't work very > well, as compared > with the extended release Ultram. Oh well, guess I > should just go > hide when I run out of meds, lest I risk running off > my DH and > friends. Argh. > > So, anyhow, now I know how much relief I get from > the Cymbalta. Shame > we have to pay so much for drugs in the US. > > And yesterday I got the bill for my DH's heart > work-up a year ago. I > owe $2005! OMG, how am I going to keep us afloat?! > (I haven't even > gotten the bill yet on my Cardiac Cath from this > month). > > girlsaylor > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with > Yahoo! Mobile. Try it now. > > [Non-text portions of this message have been > removed] > > > ------------------------------------ > > 1. While it is wonderful to share our experiences > with everyone on the list as to what treatments do > and don't work for us, pls always check with your > dr. Some treatments are dangerous when given along > with other meds as well as to certain health > conditions or just dangerous in general.. > > 2. If you are in a difficult situation (doesn't > matter what it is) pls don't be afraid to ask for > help. It is the first step to trying to make that > situation better. > > 3. To unsubscribe the e-mail is: > Fibromyalgia_Support_Group-unsubscribe > > 4. Also, it is not uncommon for more than one member > to be feeling bad at the same time when it comes to > flares and b/c of that potentially take something > another member says the wrong way. And that > includes the things that one member may find funny > (even if it's laughing at fibro itself) even though > we who deal with illness whether one such as fibro > or multiple illnesses try to keep a sense of humor. > > 5. Pls let's be gentle with each other, and if you > are having a bad day pls let us know so that we can > do our best to offer our support. > > Have a nice day everyone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Hi Bonnie, What do you mean by your boobs are intact? Jill Re: experiment - didn't take my cymbalta today I agree with you guys, I to am taking a handfull of meds and my husband has epilepsy and just one of his meds would be like 400 a month if not for both of our insurances. and with me now on the 5month of leave with out pay in attempts to retire from the federal government (disabilty as I am 2 years shy of a full retirement) i can understand completly. plus it seems like all the doctors want to prescribe the newest in medication. One of these days I am just going to out and out ask the doctors " you get a cut for prescribing the new stuff? " as i fiqure out each time the drug reps come and visit you must be getting something... Diane --- debra van ness wrote: > Healthcare access in this country is a pitiful state > of affairs. I just don't get it. We live in one of > the wealthiest countries in the world and yet > working class and low income people have to suffer > because of lack of funds. Healthcare???? Come on. > That is just as necessary as food and water. And > with an illness like this, running out of medication > is inhumane. Damn it! > Bless you honey, > hang in there, > hugs, > Debra V. > > jeribelle2000 wrote: > Due to DH's job change, and the cost of > the Cobra insurance til we go > on his new insurance, I'm going to run out of all of > my meds (about a > dozen!) before then. I just cannot pay 3 month's > Cobra plus copays. I > have a bit of Fluoxetine left from before my PCP > changed me to > Cymbalta, so I'm going to take a Fluoxetine one day > a week or so to > try and stretch my Cymbalta. Well, today I took the > Fluoxetine, as > well as the Ultram ER, and let me tell you, what a > difference. Hubby > noticed I was hobbling and in terrible pain. He just > doesn't get it, > how sick I am. My feet are killing me today. Anyhow, > I will run out > of the Ultram ER also, before the insurance starts. > I could go back > on my generic tramadol, which doesn't provide near > the pain relief, > but that's the way of the working class, isn't it. > > Many of the other meds I can get at Kmart for $5 a > month, so that's > no biggie. But when I last discussed statins with my > PCP, she > insisted I take either Lipitor or Lovastatin. Well, > Lipitor is out of > the question price-wise. And the Lovastatin isn't > much less. I > frankly don't know what I'm going to do. I expect I > may be able to > get a little bit of Cymbalta samples from my PCP, > but I don't think > she gets the statin samples. As far as the Tramadol, > I'll just have > to go with the generic, though it doesn't work very > well, as compared > with the extended release Ultram. Oh well, guess I > should just go > hide when I run out of meds, lest I risk running off > my DH and > friends. Argh. > > So, anyhow, now I know how much relief I get from > the Cymbalta. Shame > we have to pay so much for drugs in the US. > > And yesterday I got the bill for my DH's heart > work-up a year ago. I > owe $2005! OMG, how am I going to keep us afloat?! > (I haven't even > gotten the bill yet on my Cardiac Cath from this > month). > > girlsaylor > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with > Yahoo! Mobile. Try it now. > > [Non-text portions of this message have been > removed] > > > ------------------------------------ > > 1. While it is wonderful to share our experiences > with everyone on the list as to what treatments do > and don't work for us, pls always check with your > dr. Some treatments are dangerous when given along > with other meds as well as to certain health > conditions or just dangerous in general.. > > 2. If you are in a difficult situation (doesn't > matter what it is) pls don't be afraid to ask for > help. It is the first step to trying to make that > situation better. > > 3. To unsubscribe the e-mail is: > Fibromyalgia_Support_Group-unsubscribe > > 4. Also, it is not uncommon for more than one member > to be feeling bad at the same time when it comes to > flares and b/c of that potentially take something > another member says the wrong way. And that > includes the things that one member may find funny > (even if it's laughing at fibro itself) even though > we who deal with illness whether one such as fibro > or multiple illnesses try to keep a sense of humor. > > 5. Pls let's be gentle with each other, and if you > are having a bad day pls let us know so that we can > do our best to offer our support. > > Have a nice day everyone. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2008 Report Share Posted March 23, 2008 Bonnie, I hope this all works out for you. Sounds good. I'm not on anything for the fibro except pain, I see my PCP on Friday, and I wan't to try the Lyrica..something. Have a good day. /Mi Re: experiment - didn't take my cymbalta today I agree with you guys, I to am taking a handfull of meds and my husband has epilepsy and just one of his meds would be like 400 a month if not for both of our insurances. and with me now on the 5month of leave with out pay in attempts to retire from the federal government (disabilty as I am 2 years shy of a full retirement) i can understand completly. plus it seems like all the doctors want to prescribe the newest in medication. One of these days I am just going to out and out ask the doctors " you get a cut for prescribing the new stuff? " as i fiqure out each time the drug reps come and visit you must be getting something... Diane --- debra van ness wrote: > Healthcare access in this country is a pitiful state > of affairs. I just don't get it. We live in one of > the wealthiest countries in the world and yet > working class and low income people have to suffer > because of lack of funds. Healthcare???? Come on. > That is just as necessary as food and water. And > with an illness like this, running out of medication > is inhumane. Damn it! > Bless you honey, > hang in there, > hugs, > Debra V. > > jeribelle2000 wrote: > Due to DH's job change, and the cost of > the Cobra insurance til we go > on his new insurance, I'm going to run out of all of > my meds (about a > dozen!) before then. I just cannot pay 3 month's > Cobra plus copays. I > have a bit of Fluoxetine left from before my PCP > changed me to > Cymbalta, so I'm going to take a Fluoxetine one day > a week or so to > try and stretch my Cymbalta. Well, today I took the > Fluoxetine, as > well as the Ultram ER, and let me tell you, what a > difference. Hubby > noticed I was hobbling and in terrible pain. He just > doesn't get it, > how sick I am. My feet are killing me today. Anyhow, > I will run out > of the Ultram ER also, before the insurance starts. > I could go back > on my generic tramadol, which doesn't provide near > the pain relief, > but that's the way of the working class, isn't it. > > Many of the other meds I can get at Kmart for $5 a > month, so that's > no biggie. But when I last discussed statins with my > PCP, she > insisted I take either Lipitor or Lovastatin. Well, > Lipitor is out of > the question price-wise. And the Lovastatin isn't > much less. I > frankly don't know what I'm going to do. I expect I > may be able to > get a little bit of Cymbalta samples from my PCP, > but I don't think > she gets the statin samples. As far as the Tramadol, > I'll just have > to go with the generic, though it doesn't work very > well, as compared > with the extended release Ultram. Oh well, guess I > should just go > hide when I run out of meds, lest I risk running off > my DH and > friends. Argh. > > So, anyhow, now I know how much relief I get from > the Cymbalta. Shame > we have to pay so much for drugs in the US. > > And yesterday I got the bill for my DH's heart > work-up a year ago. I > owe $2005! OMG, how am I going to keep us afloat?! > (I haven't even > gotten the bill yet on my Cardiac Cath from this > month). > > girlsaylor > > > > > > > --------------------------------- > Be a better friend, newshound, and know-it-all with > Yahoo! Mobile. Try it now. > > [Non-text portions of this message have been > removed] > > > ------------------------------------ > > 1. While it is wonderful to share our experiences > with everyone on the list as to what treatments do > and don't work for us, pls always check with your > dr. Some treatments are dangerous when given along > with other meds as well as to certain health > conditions or just dangerous in general.. > > 2. If you are in a difficult situation (doesn't > matter what it is) pls don't be afraid to ask for > help. It is the first step to trying to make that > situation better. > > 3. To unsubscribe the e-mail is: > Fibromyalgia_Support_Group-unsubscribe > > 4. Also, it is not uncommon for more than one member > to be feeling bad at the same time when it comes to > flares and b/c of that potentially take something > another member says the wrong way. And that > includes the things that one member may find funny > (even if it's laughing at fibro itself) even though > we who deal with illness whether one such as fibro > or multiple illnesses try to keep a sense of humor. > > 5. Pls let's be gentle with each other, and if you > are having a bad day pls let us know so that we can > do our best to offer our support. > > Have a nice day everyone. > Quote Link to comment Share on other sites More sharing options...
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