Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 In a message dated 5/8/00 12:26:45 PM Central Daylight Time, cst1973352@... writes: << It is a deadly disease even though it may not be recognized as one right now.>> Hi , all, I have learned so much about this disease since I was diagnosed last August. Acute relapsing or chronic it seems as though this disease is one of the most catastrophic of any medical condition that I know of. It still just baffles me and is unimaginable to know that this is not recognized as disabling. AGGHHH! I met with a portion of my health care team yesterday to discuss the current plan of treatment, projected goals, etc. The complexity of the pancreas itself, as well as the negative impact, effect, and toll it takes on the interdependent organs necessitate a finely tuned health care team. I feel fortunate that the interdisciplinary care plan team, particularly the highly specialized physicians that have come together and are working hard to achieve my highest level of functioning and well-being. Every time an adjustment is made in regard to medications, nutrition, lab, etc., involves consultation with the entire team, as every thing effects another. That is the only way it could work. I feel very fortunate to have a choice in my medical care, Vs the tight constraints of an HMO. I am curious how many people live in the Indianapolis are (or any city for that matter) that have Pancreatitis. I would think it would be a large enough number to support a monthly Pancreatic Clinic. This would help ensure access to the multidisciplinary and holistic approach to improve the quality of life of those who suffer with this disease. It would also be an effective arena for data collection and research. Karyn Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2000 Report Share Posted May 9, 2000 Karyn, i would be greatly interested in a pancreatic clinic I live New Orleans and I think that this would be a great benefit to myself and other pnacreatic patients here in the city Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 5/9/2000 10:54:48 AM Eastern Daylight Time, KarynWms@... writes: << I am curious how many people live in the Indianapolis are (or any city for that matter) that have Pancreatitis. I would think it would be a large enough number to support a monthly Pancreatic Clinic. This would help ensure access to the multidisciplinary and holistic approach to improve the quality of life of those who suffer with this disease. It would also be an effective arena for data collection and research. >> Karyn, I fully agree with your statement. I live in the Atlanta area and you would think in a city as large as this one, that there would be many people suffering with this ailment. Unfortunately, I think I am the only patient at my Pain Management Clinic that has Pancreatitis. It would be great if we could have one institution we could all rely on for this illness. That way, we can get consistent help, more knowledgeable doctors, better treatment from staff members, and the ability to share info with other patients. Unfortunately, I know of no place locally where this may happen. This is truly a shame. Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 5/9/2000 10:11:04 PM Eastern Daylight Time, DSimmTaz@... writes: << i would be greatly interested in a pancreatic clinic I live New Orleans and I think that this would be a great benefit to myself and other pancreatic patients here in the city >> , I am from New Orleans also (currently living in the Atlanta area) and would highly recommend Dr Litwin at Tulane Medical Center for this support group. He is, by far, the most knowledgeable doctor I've ever had the pleasure to deal with throughout my long battle with this illness. I'm not certain if he still practices out of there (he was head of his department) but if he still is, I would recommend highly that you speak with him. I'm certain that he would be willing to put some form of group together there in New Orleans or would know of someone who could do this for you at Tulane Medical Center. Good luck in your search. Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 andre' thank you for that info I will call Tulane and find out If Dr Litwin is still there. Do you Know if he is accepting new patients? if so what kind of Doctor is he. I am seeing Doctor Gioe out of Gulfport Mississippi. He has done two pancreatic stents on me an numerous ercp's with Monometry on me. I feel better now then I did in the past. I'm still having some break through pain but they are controlling it with Sandostatin I give myself one shot every eight hours and I find that it helps alot . I'm also going to find out if they will put me on that drug actiq that I heard one other person talk about. well I hope everyone is doing well and if anyone ever needs someone who know's what they are going through to talk to I'm here. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2000 Report Share Posted May 10, 2000 In a message dated 05/10/2000 4:05:47 PM Pacific Daylight Time, DSimmTaz@... writes: << I'm also going to find out if they will put me on that drug actiq that I heard one other person talk about. >> - What is this drug for? Is it to specifically help the pancreas work better or is it for pain management? I have never heard of it before. -Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 In a message dated 5/10/2000 7:05:53 PM Eastern Daylight Time, DSimmTaz@... writes: << Thank you for that info I will call Tulane and find out If Dr Litwin is still there. Do you Know if he is accepting new patients? if so what kind of Doctor is he >> , Dr Litwin is a surgeon but before you run for the exits, please understand that he is a surgeon form the " old school " where surgery is always a last option left entirely up to the patient. No pressure was ever applied by anyone at Tulane for me to have any of the surgeries I elected to have performed on me. If Dr Litwin is still at Tulane Medical Center, he will be accepting new pancreatic patients, since this happens to be his specialty. Formerly, he was Chief of Surgery at Mass General in Boston and Dean of the School of Medicine at Harvard University. This is no fly-by-night flack, believe me when I say this. He is still, by far, the best most sympathetic doctor I have ever had the pleasure to be associated with during this illness. That was wonderful news that the stets seem to be offering you some relief. Also, that's great that the Sandistatin is working well for right now. I too tried both of these options, but with far less success than you have been experiencing. It's wonderful to know that my doctor wasn't far off base by trying these medications on me. There was a time when I contemplated making a change in my physician due to his lack of any meaningful treatment for my pain. Now I'm extra glad I didn't do something hasty at that time in my life since I really like and trust my current physician here in Atlanta. He is Dr Litwin without the surgery (there isn't any surgery left for me to be offered short of removal of my pancreas). Let me know how things go with this. I am still on good terms with Dr Litwin and would be more than happy to intercede in your behalf, if need be. Good luck in your search for help in coping with this illness. Andre' Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 andre' i will definitly call tulane and find out about seeing him. Doctor Gioe wants me to have a Laperoscopic Splanchnectomy do you know if this doctor does this procedure, the reason that i'm asking is you seem to be very knowledgeable about pancreatitis and the surgery options that are offered. I'm not feeling well today I woke up sick this morning with alot of pain. today is the first day that i am having this much pain since i got out of the hospital since the 29th of april. I hope that you are doing well today. give me a holler later and let me know how you are doing Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2000 Report Share Posted May 11, 2000 Malisa, I believe that actiq. is a pain reliever and is used for that purpose. once I find out more I will let you know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2000 Report Share Posted May 17, 2000 In a message dated 05/09/2000 9:54:25 AM Central Daylight Time, KarynWms@... writes: << I am curious how many people live in the Indianapolis are (or any city for that matter) that have Pancreatitis. I would think it would be a large enough number to support a monthly Pancreatic Clinic. This would help ensure access to the multidisciplinary and holistic approach to improve the quality of life of those who suffer with this disease. It would also be an effective arena for data collection and research. Karyn >> I live in Arlington, TX which is in the Dallas/Ft. Worth area. I would be very interested in knowing how many people live in this area and would be very interested in establishing something like what you talked about Karyn here. Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2000 Report Share Posted May 17, 2000 In a message dated 5/17/00 9:42:16 PM Central Daylight Time, smraef@... writes: << live in Arlington, TX which is in the Dallas/Ft. Worth area. I would be very interested in knowing how many people live in this area and would be very interested in establishing something like what you talked about Karyn here. Sandy >> sandy - do you know much about baylor medical in dallas? that is where my gi dr. has been talking about sending me for evaluation. debbie (arkansas) Quote Link to comment Share on other sites More sharing options...
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