Guest guest Posted October 21, 2002 Report Share Posted October 21, 2002 , THANK YOU for the list of abbreviations. I was going nuts trying to figure out the terminology behind AF (although I had already figured out the meaning from context) and some of the others. Regarding fertility drugs, are they commonly used even if someone had no problem getting pg before TL? How does ROBI tie in to babymaking? Thanks, Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 I like many of the subscribers of this group have wrestled with this question and as I work on my 7th year after dx I still often wonder how long it will be before the doctor refers me on to a tx team. A question that I have for the group is whether or not there has been any attempts to collect raw information from everyone (lifestyle, eating habits, medication, age, etc) to see if there is any sort of pattern to why PSC is more aggressive in some and others have gone 20+ years before transplantation. I know everyone's body is different but I often wonder why some people get 5 years and others get 20. (Obviously) not being a doctor this is a simplistic view of the problem but if I knew that a majority of the folks lived with PSC for 20 yeas ate certain kinds of foods while avoiding other types of foods or something silly like that, heck, I'm not above trying that. Given the suspicion of UC being a factor in PSC, I suppose it would be interesting to note whether or not those that went a short (or long) time had reoccurring problems. I'm somewhat new to the group and this sort of discussion may have already taken place sometime before -- if it has (or if I'm out of line) please forgive me in advance. Regards, Jeff On Monday, June 2, 2003, at 08:05 PM, Tony & wrote: > Gemma, > > Psc treats everyone differently. I don't believe there is an exact > time length from dx to transplant. Some people need tx right away > and some have lived 20+ years without getting a transplant. > > Hopefully someone else will correct me if I am wrong. > > > > <image.tiff> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2003 Report Share Posted June 2, 2003 ....While many in this group do not feel that the correct nutrition, exercise and supplements in combination help one iota... I don't believe I've heard that said. There's no question that correct nutrition (assuming you can determine what that is) and exercise help. The third item is not so straightforward. I personally use high potency vitamins, along with calcium, glucosamine chondroitin and milk thistle. The first two because of 25+ years with UC (and yes, age), the third clearly because of age (and some overuse) and the last due to clearly documented "no harm" to possibly "helpful" research with liver disease - all with the blessing of my hepatologist. Overuse/misuse of supplements can be just as bad as overuse/misuse of exercise and nutrition. Stress management clearly helps with most chronic ailments - you cannot separate the body from the mind. Arne52 - UC 9/77 - PSC 4/00Alive and (mostly) well in Minnesota -----Original Message-----From: Gema M. Long Jeff, I strongly believe in eating more alkaline foods and less acidic foods. While many in this group do not feel that the correct nutrition, exercise and supplements in combination help one iota, I believe that keeping your body in a good assimilation and elimination routine and giving the body the best nutrients coupled with stress management will help the body to heal itself. My two cents...not one to sit around and do nothing. I'll take control where I can and do it smartly! Gema Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2003 Report Share Posted June 7, 2003 Sorry.Ron takes 16 magnesium a day not 12. With Love, Suzanne Recycle Yourself * Be An Organ Donor Questions The questions someone else submitted about being prepared for life after transplant ........Well we certainly weren't prepared for what happened to Ron during his transplant......don't think you can be but once over the trauma (please newbies ....... don't expect the trauma of Ron's ordeal to be the same for you) life is.... well, not a breeze but something close to it.....even with a large open incision. We have found that Ron feels so much better, no itching, no horrible fatigue, no watching Ron dwindle away, no wondering if he would get his transplant in time .......we have so much to look forward to as Ron improves daily. The medications are forever.......but quite easily managed.....we also....as someone else mentioned have a pill box that is divided into 7 days with four slots for each day labeled for 6am, 10am, 2pm & 10pm. He takes about 30 pills a day: cellcept -250 mg--------4day prograf -1 mg-----------2day prednisone -5 mg.-----1day asacol -400mg.---------2day captopril -25 mg.------3day cardizem -360 mg.----1day protonix -40mg.--------1day magnesium -400mg---12day bactim -800mg----------1day three days a week florinef -.1mg------------1day furosmide -20mg-------1day We also do a computer printout that Ron & I both keep a copy of in our wallets & on the refrig. when it's changed to also give new ones to the doctors. It includes where to take Ron in case of emergency, all drugs(mgs, amt. times of day & use) transplant center,tx co-ordinator, hepatalogist, cardiovascular, primary care, Ins. case manager, pharmacy & all there respective telephone numbers. Also listed are all his major surgeries, transfusions & their dates, it makes things a lot easier. What with all Ron's complications following his transplant...............yeh, I think this is a breeze. With Love, Suzanne Recycle Yourself * Be An Organ Donor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2003 Report Share Posted June 8, 2003 Melena's odour is probably one of the worst things you'll ever smell, even the output from pulp plants isn't as bad. Melena is pitch black in colour and is unmistakable. Your breath situation sounds like water brash, described in another post to the group. Spider veins can be from other causes. However, in a person with liver disease you have to consider that these are due to the liver problem and a doppler US of the abdomen is worth doing to investigate of portal hypertension. PSC is diagnosed by suspicion based in symptoms, signs and test results. If you have no positive antibody tests or viral hepatitis tests, no drugs that may have caused liver inflammation, elevated liver enzymes and suspicious ERCP or biopsy results, your doctor will suggest that it's due to PSC. But the gold standard is seeing narrowing of the bile ducts on ERCP or MRCP. -- Aubrey MD, PSC 1981, LTX 10/5/98 Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.