Guest guest Posted November 24, 2001 Report Share Posted November 24, 2001 Dear Adam, I am so sorry to hear about your dad's condition. How old is he ? I understand that he is on the ventilator, but is he awake at all and able to communicate in any way with you ? Seems like there is alot of medical things happening to him. I do not know how big the hospital is where you are or how expierenced his doc is. Sounds like he may need some more detailed medical interventions or consults. I think the idea that someone had about having your dad's doc consult on the phone with one of the GI docs in South Carloina or Indy is an EXCELLENT idea. He may be somehwat unstable but lots of times even patients that seem unstable can still be transported via helecopter to another facility. Does he have insuranc and will it pay for that as those transports are very expensive. Also ask to talk with the social worker at the hospital as sometimes they know of FREE services that may be available for transports.I do not know how unstable he is but if he gets much worse, I would entertain that idea. I think that I would be very persistent in asking his doc to consult with one of the docs in South Carolina or Indy. I think the South Carolina program may be bigger , not sure but Kaye and others from this board have been there and know alot more about it than I do. I have been to Indy to see Dr. Lehman and I would trust him but SC may be closer to you ? He needs a consult with a more expierenced physician with HIGH RISK GI problems. Also has an infectious disease doc been consulted on the cultures ? ID docs do help out with recommendations when it is unknown why patients are not getting better or if the cultures come back negative or if there are fevers. I am concerned as the longer he is on the ventilator the harder it is to wean him off. I don't know much about the electric knife thing but the fact that he has had so much fluid removed from his abdomen/peritinium is a great concern. Are you sure that they did not perforate into the intestines ? Something is not right here Adam and you are right to be concerned. DONT GIVE UP AND INSIST ON ANSWERS !!!!!! Lots of folks on thos board have the problem of the pancreas not working correctly and the enzymes turning on the pancreas causing burn out. Maybe your dad's docs are onto something about the pancreas not working and the duct being blocked . How many CT scans have they done. Is there are MRCP available at that hosiptal ? What does his blood work look like as fas as his amylase levels and other pancreatic/liver blood tests ? Hey group, do you think Adam should consult with Dr. Sutherland ? I read your email this morning and could not stop thinking about everything your dad has been thru. I felt that I had to write back and offer my thoughts. I am sorry if all of my questions are adding worry to your already stressful situation. I am sure if your dad is somewhat awake he is worried as well. I will keep you both in my prayers. Lily Advise for treatment? > Hello all, > My father has Sclerosing Cholangitis with Common Bile Duct > obstruction which he went in to have a stent placed a month ago, an > out patient proceedure. The doctor used an " electric knife " in order > to be able to put the stent in place. He said since he had to use > the " electric knife " he wanted to keep him overnight > for " observation " . That was 10/29/01. He has been in intensive care > with a severe case of pancreatitis and has been on the ventilator > twice. He remains on the vent today, four weeks later. He is on > massive antibiotics and has had some bleeding into the peritoneum. He > has received 7 or 8 units of blood. This seems like more than " side > effects " of stent placement. At this point we are wondering about the > use of the " electric knife " and if there may have been a perforation > which the docs deny. Prayer seems to be his only hope now because > medical science is not working. They have not isolated an organism > causing the infection and fevers. Many cultures have been done. Six > liters of fluid have been removed in total from the peritoneum. > The two primary doctors for him suspect that his lack of improvement > may indicate a blockage in the pancreatic duct which would result in > the pancreas digesting itself. > He cannot be moved to the experts in SC, or Indianna or we would > have. His unique disease of Sclerosing Choloangitis, combined with > the recent pancreatitis has the most informed physicians of Sacred > Heart in Pensacola, Florida in unknown territory. What can be done > once a Pancreas turns on itself? Can the enzymes be stopped? We are > desperate, of course, and any advise welcome. > > Sincerely, Adam Bolton > > > > PANCREATITIS Association, Intl. > Online e-mail group > > To reply to this message hit " reply " or send an e-mail to: PancreatitisYahoogroups > > To subscribe to this e-mail group, simply send an e-mail to: Pancreatitis-subscribeYahoogroups > > Quote Link to comment Share on other sites More sharing options...
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