Guest guest Posted October 12, 2000 Report Share Posted October 12, 2000 Suzanne, I am also having the islet cell transplant in Minnesota in Jan. I had to take a 3 day diet and then 3 days of testing to see if I had functioning islet cells, I too have a lot of damage and scar tissue on my pancreas from prior attacks. I passed the test at 100% which means my islet cells are not damaged at all yet. When they become damaged is usually when signs of diabetes shows up. Sorry for butting in but I thought I would give you my experience with this. > Shirley > > Thank you very much for this information. I did go to the website and > was very impressed. But, I was wondering if they would perform this > surgery if your pancreas wasn't terribly damaged already. has many > calcifications and evidence of damage from all his episodes, but his > pancreas still functions well. Had anyone suggested that you have your > pancreas removed? > > Suzanne > > > HI Suzanne, I just read that your son is not diabetic. I must tell > > you about > > Dr. Sutherland in MN. He is a wonderful doctor a surgeon. He has > > been > > removing the pancreas and transplanting the islet cells into the > > portal vein > > in the liver with great success. could be restored to a > > healthy life. > > I am scheduled to have the surgery Dec. 8. I know other children > > have had > > this surgery and are doing just great. I will send you the website > > so you > > can read it and maybe call Dr. Sutherland and talk with him about > > . Dr. > > Sutherland is very nice and would be happy to talk with you over the > > phone. > > http://www.insulin-free.org/stories/rebello.htm > > Dr. Sutherland telephone # is (612)625-7600 If you have any > > questions please > > feel free to ask. Shirley > > > > -------------------------- eGroups Sponsor > > > > PANCREATITIS SUPPORT NETWORK > > Online e-mail group > > > > To reply to this message hit " reply " or send an e-mail to: > > Pancreatitisegroups > > > > To subscribe to this e-mail group, simply send an e-mail to: > > Pancreatitis-subscribeegroups > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Shirley, I went to my GP today and he gave me samples of everything except pain meds to last for another month. Boy did I really appreciate that! I will have to suffer with pain until I get my new card. My GP siad that most pharmacy companies do not give pain medications for samples because of the risk of employees stealing them. My hubby will go and buy the pain medication tomorrow, the liquid oxyfast and I will send the receipt to insurance co for reimbursement. I hate all that is going on in my life right now. I should be in bed but I am too wound up with worry. I have a 9:30am appointment with a realtor tomorrow to look at double wides in a lot of different parks so I will be worn out tomorrow so if no one hears from me that's why. I sure wish your arm would heal soon! Have you asked or Ann Marie about taking the coumidin? My brother refuses to take it even now after his knee surgery cause he was told that it is the same thing that they put in rat poison. He takes coated asperins 4 times a day to thin his blood and he says that if he accidently cuts himself he does not bleed nearly as much as he did with the coumidin. His last weeks blot clotting test was normal so I guess he must know what he is doing. Love ya.... > In a message dated 10/13/00 1:30:00 AM Eastern Daylight Time, melfire@m... > writes: > > << > Suzanne, > I am also having the islet cell transplant in Minnesota in Jan. I > had to take a 3 day diet and then 3 days of testing to see if I had > functioning islet cells, I too have a lot of damage and scar tissue > on my pancreas from prior attacks. I passed the test at 100% which > means my islet cells are not damaged at all yet. When they become > damaged is usually when signs of diabetes shows up. Sorry for > butting in but I thought I would give you my experience with this. > > >> > Thanks , are you feeling any better? Are you excited yet about > moving? I received two more packets from the doctors today. Just two more > to go and they are taking forever. My arm is still very bad and shows no > signs of improving. I spend all day putting hot compresses on it. I now > have a bad sinus infection also. I can handle that. It's no big thing > compared to panc. How are you doing without your meds? Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 In a message dated 10/13/00 9:13:31 PM Central Daylight Time, briffle@... writes: << We are heading for Mayo Clinic in MN on Sunday with my 13 year old son, . If we don't get any answers there, we will inquire about this clinic. First though, I want to see if there are any simple ways to prevent further attacks. Also, I would like to get two opinons. We will do whatever it takes to get him help. >> , I just wanted to let you know you and kyle are in my prayers. It is so tough when it is your child that is sick. My daughter has had four ear surgeries (unfortunately all were unsuccessful) and even though they were relatively minor, it was a million times harder than anything I've gone through. I'd rather be in pain the rest of my life than to see my daughter suffer one day. Have a safe journey and may God be with you. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 In a message dated 10/13/00 9:02:00 PM Eastern Daylight Time, tross67260@... writes: << Shirley, Why won't they do this operation if the patient is diabetic? I would think that would be even more of a reason to do it since the pancreas is already sick fromthat. We are heading for Mayo Clinic in MN on Sunday with my 13 year old son, . If we don't get any answers there, we will inquire about this clinic. First though, I want to see if there are any simple ways to prevent further attacks. Also, I would like to get two opinons. We will do whatever it takes to get him help. >> Hi , first I want to tell you that I have heard negative reports about Mayo. I heard that someone I think on this board went there for pancreatitis and was there three weeks and go no help. In fact they might have told her it was all in her head. One cannot have the islet cell transplant if one is diabetic because when one is a diabetic the islet cells are destroyed from too many pancreatitis attacks. With this operation the pancreas and spleen is removed and the pancreas is taken to another part of the hospital and the islet cells are removed from the pancreas then brought back to the patient who is still in the operating room under anesthesia where the islets taken from the pancreas is then injected into the portal vein in the liver. With the islet cells now in the liver the patient has a very good chance of not being a diabetic and not have the pain of pancreatitis. , I wish you luck at Mayo. I would however make an appointment with Dr. Sutherland and talk with him. He might be out of the country the rest of Oct. which will be a problem if you are leaving for MN on Sun. Good luck . My heart goes out to you. I know how heart breaking it is to have a child so sick. My daughter had a serious kidney problem when she was born and it continued for years. I worried my self sick. Let me know what you find out. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 In a message dated 10/13/00 9:23:56 PM Eastern Daylight Time, tross67260@... writes: << Shirley, Wasn't sure if I clicked send or delete on the last e-mail I tried to send, so here it goes again! First of all, you are so helpful! I have learned more from you than I have all the hours I have been researching on the internet trying to find help for my son. Do you know why they won't operate on a diabetic? 's (my 13 year old son) pancrease is already sick from being diabetic. I would think that would be even more of a reason to do the surgery? Also, since they are in the same state, do you know if Mayo works with this clinic? How long did it take for you to make it to the point of them agreeing to operate on you? Does insurance usually pay for that type of operation? Sorry for so many questions, but you have been so helpful. If they can't help , I pray they can help . Children are not supposed to have to live like this. I have spent the last few days gathering medical information to take to Mayo with us. We are going to see Dr. Parrault. If we don't get answers, we won't stop there. I am so tired but I can't stop until we get help for him. Thanks so much for your help. >> , they can't do the islet cell transplant for because he doesn't have enough islet cells left to transplant. He would need a few hundred thousand to keep him from being a bad diabetic. That is why they only do the islet transplant on non diabetics. I would still make an appointment with Dr. Sutherland for little . I know of no other doctor out there who can cure pancreatitis. I don't know if Mayo works with Fairview. I doubt it. I believe Fairview is part of a university. They agreed to operate on me when they heard that I am not a diabetic. Also ins has to pay for the whole thing. The pancreatectomy and the cell transplant. The transplant alone is 10.000. They have been stung a few time with ins. co. telling them that they would pay for the procedure and then backing out. Now they get it in writing from the ins CO. You are so right, children shouldn't have to live like this. It breaks my heart. I think it is so sad. I especially feel sorry for children suffering from this disease because I know how painful it is. , where did you get the doctor's name from Mayo? Do you know anything about this doctor? What made you decide to go there? I sure hope they can help your little son. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 13, 2000 Report Share Posted October 13, 2000 Shirley, Wasn't sure if I clicked send or delete on the last e-mail I tried to send, so here it goes again! First of all, you are so helpful! I have learned more from you than I have all the hours I have been researching on the internet trying to find help for my son. Do you know why they won't operate on a diabetic? 's (my 13 year old son) pancrease is already sick from being diabetic. I would think that would be even more of a reason to do the surgery? Also, since they are in the same state, do you know if Mayo works with this clinic? How long did it take for you to make it to the point of them agreeing to operate on you? Does insurance usually pay for that type of operation? Sorry for so many questions, but you have been so helpful. If they can't help , I pray they can help . Children are not supposed to have to live like this. I have spent the last few days gathering medical information to take to Mayo with us. We are going to see Dr. Parrault. If we don't get answers, we won't stop there. I am so tired but I can't stop until we get help for him. Thanks so much for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Thanks, for you kind thoughts and words. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Becky, I will report back as soon as we return. We will, however be in contact with Dr. Sutherland if we get no answers from Mayo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 Thanks, . It is definately something to check out. Don't feel bad for " butting in " as I am always glad to get input. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2000 Report Share Posted October 14, 2000 , Sorry to but in again, they cannot do the islet cell transplant on but they may be able to do a cadiver transplant on him. It would be worth your while to talk to Dr. Sutherland, he is a very caring doctor and I am sure if there is something he can do he will do it for him. > In a message dated 10/13/00 9:23:56 PM Eastern Daylight Time, > tross67260@a... writes: > > << > Shirley, > > Wasn't sure if I clicked send or delete on the last e-mail I tried to > send, so here it goes again! > > First of all, you are so helpful! I have learned more from you than > I have all the hours I have been researching on the internet trying > to find help for my son. > > Do you know why they won't operate on a diabetic? 's (my 13 year > old son) pancrease is already sick from being diabetic. I would > think that would be even more of a reason to do the surgery? > > Also, since they are in the same state, do you know if Mayo works > with this clinic? > > How long did it take for you to make it to the point of them agreeing > to operate on you? Does insurance usually pay for that type of > operation? > > Sorry for so many questions, but you have been so helpful. If they > can't help , I pray they can help . Children are not > supposed to have to live like this. > > I have spent the last few days gathering medical information to take > to Mayo with us. We are going to see Dr. Parrault. If we don't > get answers, we won't stop there. I am so tired but I can't stop > until we get help for him. > > Thanks so much for your help. > > > >> > , they can't do the islet cell transplant for because he doesn't > have enough islet cells left to transplant. He would need a few hundred > thousand to keep him from being a bad diabetic. That is why they only do the > islet transplant on non diabetics. I would still make an appointment with > Dr. Sutherland for little . I know of no other doctor out there who can > cure pancreatitis. > > I don't know if Mayo works with Fairview. I doubt it. I believe Fairview is > part of a university. > > They agreed to operate on me when they heard that I am not a diabetic. Also > ins has to pay for the whole thing. The pancreatectomy and the cell > transplant. The transplant alone is 10.000. They have been stung a few time > with ins. co. telling them that they would pay for the procedure and then > backing out. Now they get it in writing from the ins CO. > > You are so right, children shouldn't have to live like this. It breaks my > heart. I think it is so sad. I especially feel sorry for children suffering > from this disease because I know how painful it is. > > , where did you get the doctor's name from Mayo? Do you know > anything about this doctor? What made you decide to go there? I sure hope > they can help your little son. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 2000 Report Share Posted October 19, 2000 << In a message dated 10/14/00 10:34:08 AM Eastern Daylight Time, smgike@... writes: <<hello to all members . my name is sue i live in pa near Pittsburgh. i join this group to get info for my sister and niece. my 10 yr. niece has Pancreatitis. she take 5 to 7 pills each times she eats and is in and out of the hospital every other month. she has had this for about 2 yrs. she has also had her gallbladder remover . my sister says the doc are doing nothing for her and have no idea why or what is going on. if any one can give me any kind of impute please do so .>> Hi Sue, and welcome, Today there is so much research going on with Pancreatitis, especially, hereditary and congenital. I noticed that your niece is not a diabetic. That is a very good sign. We will try to find you some information on possible islet cells transplants in children. Preventing diabetes and getting the Pancreas out before it causes any further damage to your other organs is important. You have to remember that I am not a doctor and don't even know the specific circumstances of your niece, so these are just my thoughts. The key thing is to have some contact with a progressive medical center. Karyn Pancreatitis Support Network Indianapolis Symposium on Pancreatitis 2000 November 11, 2000 Quote Link to comment Share on other sites More sharing options...
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