Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Clare, In the strictest sense, cholangitis is an inflammation of the bile ducts. In association with PSC, it usually means a bacterial infection in the bile ducts. Symptoms include jaundice, fever, chills, and Right Upper Quadrant(RUQ) pain. I know very few people with PSC who have never had a cholangitis episode. As with every thing else involved with PSC, the length of time stents can be left in place, as well as the results obtained, varies widely from individual to individual. The purpose of a stent is to open up the bile duct, and it’s hoped that duct will stay open for some period of time after the stent is removed. It’s difficult to quantify the progress of the disease, but your Doctor should be able to give you their best estimate of where you are. Not being familiar enough with how things work in the UK, I’ll leave it to some of our UK members to comment on how sick you have to be to get a liver, and what the prospects for getting one are. The pain in your back may or may not be related to PSC. Have you asked your Doctor about it? The fatigue associated with PSC can be quite debilitating in the advanced stages of the disease, but as you have just been diagnosed you could very well have many years ahead before it gets to that point. Hope this helps. Steve Rahn L Tx 9/6 & 9/8 '85. (Wash. U-STL) Waiting for Re- Tx (U of Iowa) " Do not go gentle into that good night... Rage, rage against the dying of the light " (Dylan ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Clare- Let me take a stab at your questions... Cholangitis - Cholangitis in simple terms just means inflammation of your bile ducts. Symptoms of cholangitis include recurring fevers, chills, Upper right quadrent abdominal pain, and possible nausea. As PSC patient if your temperature gets above 100.5 F (Sorry I don't know the equivalent in Celcius) or so and you are experiencing some of these other symptoms you should consult a doctor. Cholangitis can be potentially serious and should not be ignored. As you live with this disease you will learn to pick up the signs your body is sending you and become more proficient in telling when things are not " quite right. " Stents - How long they can be left in depends on the size of the stent. Smaller ones are often used at first when the stricture in the bile duct is quite narrow. Because they are smaller they have a higher probability of becoming clogged and therefore are not kept in as long you might hear the term 7 french for the smaller size stent. Once they are able to place a larger stent such as a 10 french then I would say the average length of time they are left in is 3 months. The doctor will change them every 3 months or so until they feel it can be permanently removed. Once they are removed you may go for a long period of time (years) before the bile duct closes up again and further treatment might be necessary. Disease Progression - This is somewhat subjective but is determined by taking into account your symptoms, labs, ercp imaging, and biopsy. The biopsy can show the extent of damage inside the liver and whether fibrosis or cirrhosis is present. Fibrosis is basically pre-cirrhosis and would be classed as stage 3, fully developed cirrhosis would be classed as stage 4. Transplant - I don't know how things are in the UK in regards to Liver Transplant wait time but there are others from England who may know better. Most likely you will need to be fairly sick before being transplanted but everyone is different. Some have lived fairly normal lives up to several months prior to transplant but others have struggled for years before getting one. It could be 20 years before you need a transplant and many things can change between now and then. Pain/Fatigue - Some have complained of back pain associated with cholangitis and upper right quadrant pain. I have not had back pain myself. I can't say if your pain is related to PSC or not. Something you should probably discuss with your doctor. Fatigue is also a very individual problem. Some have severe fatigue and must go on disability and others can lead normal lives. For myself, I am tired a lot but still can function at fairly normal levels. I just have to budget my energy and be selective as to what I undertake. It is impossible to tell you how it will be for you. Hope that helps. Feel free to ask more questions as they come along. in Seattle > I have a few questions maybe someone has answers to, I can think of > loads and loads but will just ask a few to start with. I don't > really know anything about the disease having just been diagnosed. > > What is cholangitis and am I likely to get it and how will I know if > I have it? > > How long can they leave stents in for and what happens when they > take them out? > > How can they tell how far into the disease you are? > > Do I have to become really ill before I get a liver transplant? > > I am in the Uk, can I be certain of actually getting a transplant? > > I have constant pain in my back, what is this? > > How bad does the fatigue get, I have three small children and don't > have time to be tired! > > Thanks for now > > Clare Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 I see Steve answered many of the same questions and beat me to the punch but I will leave my post up for posterity sake. I guess it shows great minds think alike. Sorry for the duplication. > Clare, ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 30, 2003 Report Share Posted April 30, 2003 Not at all I just thank you both for replying, such a comfort to talk to other people who not only have the disease but are knowledgeable. Thank you thank you thank you. No doubt I will be asking loads more questions as they arise and hopefully be able to answer others questions in the future. I am so so glad I found this group. Clare x Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2008 Report Share Posted September 25, 2008 Hi Everyone, I have a few questions, which don't necessarily overlap, but we are looking for some guidance: 1. We are looking to block out a lunch time for our therapists.? Do you add the time onto their weekly hours? 2.? If we provide a timed sevrice code, say manual therapy (8 minutes) and also ultrasound (8 minutes), does that equal? 1 unit (16 minutes) or 2 seperate units becuase they are seperate procedures? 3. Is booking 1 patient every 30 minutes adequate for the timed unit billing, followed by modalities (HP, ES). 4. What about doing exercises? Thanks PT DPT Edison NJ Quote Link to comment Share on other sites More sharing options...
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