UPMC vs UCLA

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Author Message Monique Member Username: moniquesummer Post Number: 23 Registered: 08-2006 Posted on Thursday, April 12, 2007 - 09:15 am:    Hi All, I have not posted in a long time...But I am doing great and feeling healthy! Anyhow, I had my Tx @ UCLA on 1.17.06. I have Autoimmune Hep. and I am still on a boat load of meds.: Prograf, Rapamune, CellCept, Prednisone, Lasix, Protonix, MagOx and MagPro. I have read in the past and currently about UPMC and their approach to meds. I was interested in going to UPMC for a consult to see what they say they may be able to do for me in regards to meds, treatment etc. Now dont get me wrong I absolutely LOVE UCLA but I feel that long term treatment (like the rest of you) w/so many meds is so harmful. Now, given I have not even called to see if they would consider seeing, I first I wanted to get the opinion of everyone else... I would appreciate your thoughts and feedback. Risa Member Username: risa Post Number: 630 Registered: 05-2003 Posted on Thursday, April 12, 2007 - 09:36 am:    Hi Monique Did you have an induction therapy with your transplant? That is a type of medication like campath or zenapax or many others that suppress your immune system during surgery. Patients who had that sort of therapy tend to take less imunosuppressants. Before you go to another center, find all the facts before switching. That is what I would do. Best regards,Risa Monique Member Username: moniquesummer Post Number: 24 Registered: 08-2006 Posted on Thursday, April 12, 2007 - 10:54 am:    I dont believe that I did. I will confirm with my center. These are the types of questions that I wanted to know. Do you think I should call UPMC to talk with them first...? I just have no idea about switching or any of that. I appreciate your input Risa... Risa Member Username: risa Post Number: 631 Registered: 05-2003 Posted on Thursday, April 12, 2007 - 05:06 pm:    I would also talk to your transplant team doctor not your coordinator to ask your specific questions. you are very welcome steph Member Username: steph Post Number: 11 Registered: 04-2007 Posted on Thursday, April 12, 2007 - 05:42 pm:    Monique Where do you live? Just curious. I am in PA, but have a friend who is listing her daughter at UCLA and she was frustrated with some things that occured during her eval, just wondered if maybe you would be open for questions if she has any specific ones... or anyone on this list that had transplants at UCLA. ChuckZ Member Username: chuckz Post Number: 90 Registered: 05-2006 Posted on Thursday, April 12, 2007 - 06:26 pm:    Monique, I think that Risa offers you good advice about asking your UCLA physicians about it. Campath induction is important to the UPMC approach, but they have eliminated prednisone for all but those who absolutely need it (usually long term users). Were you on prednisone prior to your tx? At UPMC, they would probably not consider both prograf and rapamune and do not seem to use cellcept very much. I would ask UCLA if the drugs that you are on are their standard protocol or not. If it is, I would suggest you consult with UPMC. If it is not standard, ask them what is unique about your situation that requires four different immunsuppressants. I have been probably the most vocal proponent of the UPMC approach and I always tell people that I am a kidney tx patient who had a sibling perfect match, so I have a super situation working for me. But most patients at UPMC that have been transplanted in the 4 or 5 years are on much less medication than most other centers. Hope this helps, Chuck Monique Member Username: moniquesummer Post Number: 25 Registered: 08-2006 Posted on Friday, April 13, 2007 - 11:39 am:    Thanks Everyone. I spoke with a coordinator at UPMC today. She told me they usually do not "take over" (I cant remember the words she used) patients, but she also did not say that they would not see me. She said perhaps, I need to get a consult with my suergon-right now I only see my Hepatologist. I told her I am my own advocate and every time I see them I ask to be reduced on my medication. She explained very similar to UCLA that autoimmune patients are usually weaned off slower then others and take "more" meds then others. But I am going to start pressuring them a bit more for med reduction. I feel great, numbers good. If they do not respond I will call UPMC again. I really want to get off of prednisone and at least drop my rapamune and cellcept. Good thing I am persistent..For my own sake. Steph, What is your email address? Is there a way I can get it without you having to post it for all to see? I am in Nevada, I have not had any really bad experiences with UCLA. But get in touch with me anyhow. Would love to chat. Sorry to hear of your friends daughter. How old is she? I am 26 and since my Tx I am back to the old me... Chuck, I think you may be as passionate as I am... lol...I think it is wonderful the way UPMC is constantly doing further research into lowering our meds. Dont get me wrong I love UCLA, but I dont think they go to bed thinking about me. But I know I do...Do you know any autoimmune patients there who are not on Prednisone? ChuckZ Member Username: chuckz Post Number: 91 Registered: 05-2006 Posted on Saturday, April 14, 2007 - 08:24 pm:    Monique, I don't want people to think that I want them to become a "pain" to their medical teams or to risk their well being, either physical or emotional, by asking for reductions in meds and then worrying about or, worse, having a problem/rejection. I just want to keep people informed about what my center is doing. John, who is one of our moderators and arguably the most scientific one, has agreed that UPMC is probably five years ahead of the curve with regard to medication. I like the fact, that even though they start everyone out nearly the same, they really do try to fit the drug protocol to the individual very early on and one primary aim to the approach is minimal drugs, at minimal dosage with a healthy graft being the foremost aim. They use a number of indicators/tests, that are more uncommon at other centers, to measure the immune system of the individual, not a set target for a drug level. Just to draw a simple analogy, doctors do not look at how much lipitor you have in your blood but rather your lipid panel! All centers monitor the function of the transplanted organ, but do not always look in detail at the rest of the body until there is a "symptom" which they will treat with another drug. Now I will admit that that the survival of your transplant is several orders of magnitude higher than your cholesterol. But I believe that "one size fits all" for an extended period of time is wrong when treating people with powerful drugs such as immunosuppressants. You are right, we do have to look after ourselves, that's why I try to have access to all my test results, even if they cause me undue worry from time to time. I look after one patient, my coordinator looks after a hundred or more. I read on-line journals to monitor research and problems. I fairly sure my coordinator doesn't. So if you, as an individual, do not get the answers you like, talk more to UPMC. Hopefully, someone at UCLA might want to do it for you. Stay passionate! Chuck Judie Member Username: judie Post Number: 16 Registered: 07-2007 Posted on Saturday, August 18, 2007 - 08:41 am:    Monique, welcome to the forums.I live in PA, and go to the Starzl Transplant Inst.I was given campath 3 wks prior to my surgery,(had a living liver donor).I take Prograf 10mgs, 3 x's a week.no Prednisone.You are your own best advocate,keep pushn until you get the answers to your questions.