Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 In a message dated 6/26/2003 10:41:30 PM Eastern Daylight Time, rjlind@... writes: > > > I am so interested in this surgery, my daughter has had pancreatitis for > over 4 yrs. and continues to worsen, she is32 yrs old and has 2 small > children,,,as you can imagine, she cannot function normally as a mother to them. I > have talked to her about this surgery but she says she will not have it, she is > scared to death to go thru anymore procedures. would you write me telling me > the complete reason you had the transfusion and exactly what that surgery > involved, also are you on medication for adverse effects of the > transplant,,,thank you, jean, Indiana > ----- Original Message ----- > HI Jean, the surgery is the Total Pancreatectomy and Islet Cell transplant. The pancreas is removed, the spleen, and the islets are retrieved from the pancreas and transplanted to the liver. If your daughter is not diabetic then this surgery is possible. By transplanting a person's own islets to their liver they have a good chance of not becoming diabetic. This surgery is for non diabetic patients. Bert had the surgery at the University of Cincinnati. I had the surgery at The Fairview University Medical Center in Minneapolis, MN. Dr. Sutherland is the surgeon there and he has been performing the surgery since the 1970s. He has the most experience. There is so much to tell you and it is late but I will be glad to tell you anything that you want to know about my history and the surgery. I will give you some information and a web site so you can research the surgery which will give you a heads up on what is done to cure a patient of chronic pancreatitis. I understand your daughter's fear. I was afraid also but my health with chronic pancreatitis was declining so rapidly I had to make a choice for surgery and I knew that for me the TP/ICT was the one I had to have to save me. I know that Bert will be able to help you with information also. There are others in the group including children who have had the surgery and I am hoping that they will pop in and give you their story. Good luck with your decision making. Research everything that you can and I hope you can make it to the symposium in Aug in Indiana. You will learn so much information there to help you. Dr. Sutherland's web site is <A HREF= " http://www.Diabetesinstitute.org " >http://www.Diabetesinstitute.org</A> Dr. Sutherland's e-mail address is DSuther@... Dr. Sutherland's secretary is Anne Marie Papas and her e-mail address is papas001@... When reading the Diabetes institute web site look for AUTO ISLET CELL TRANSPLANT if you aren't diabetic. AUTO IS THE IMPORTANT WORK TO LOOK FOR. Let me know if you need or want anymore information. Good luck, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 In a message dated 6/27/2003 12:02:47 AM Eastern Daylight Time, l10nx@... writes: > The only meds I am on now is pancreatitic enzymes for life, prevacid > (or other such drug, nexium, etc) for life, and insulin as needed. I > Dear Bert please explain to me again what drugs you are on and what drugs you will be on for life. I understand the enzymes and the insulin, maybe but the others I don't understand. I am so curious. Am I missing something? Thanks Bert ahead of time. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Hiya, Just wanted to give you all a quick update in my recovery from the total pancreatectomy and islet cell transplant surgery I had 6 weeks ago today. Yesterday my G-Tube was removed. I have no tubes! Yay. Already my stomach is beginning to act more like normal. With the tube in I had issues with the stomach not moving food through very well. I feared gastroparesis, but things are already working better in just a day. My sugars are doing very well but I do require insulin still. Its still early so we have to wait and see if I will be on insulin for life or not. If so, I have very low requirements: I take 6 units of regular a day and 22 units of NPH a day. My readings are from 80-120, mostly between 95 and 115. That's all good in my book. My pain is more tolerable and its all surgery related. I have no residual pancreas pain. I have resumed eating foods that would put me in the hospital. My energy is coming back. I am shooting to return to work in 4 more weeks. The only complication I have had is an incision infection in one spot that its getting better. We are just doing wet to dry dressing changes. Well, ER is on, so back to being a couch potato! Blessed Be! Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 I am so interested in this surgery, my daughter has had pancreatitis for over 4 yrs. and continues to worsen, she is32 yrs old and has 2 small children,,,as you can imagine, she cannot function normally as a mother to them. I have talked to her about this surgery but she says she will not have it, she is scared to death to go thru anymore procedures. would you write me telling me the complete reason you had the transfusion and exactly what that surgery involved, also are you on medication for adverse effects of the transplant,,,thank you, jean, Indiana 6 weeks post-op TP/ICT Hiya, Just wanted to give you all a quick update in my recovery from the total pancreatectomy and islet cell transplant surgery I had 6 weeks ago today. Yesterday my G-Tube was removed. I have no tubes! Yay. Already my stomach is beginning to act more like normal. With the tube in I had issues with the stomach not moving food through very well. I feared gastroparesis, but things are already working better in just a day. My sugars are doing very well but I do require insulin still. Its still early so we have to wait and see if I will be on insulin for life or not. If so, I have very low requirements: I take 6 units of regular a day and 22 units of NPH a day. My readings are from 80-120, mostly between 95 and 115. That's all good in my book. My pain is more tolerable and its all surgery related. I have no residual pancreas pain. I have resumed eating foods that would put me in the hospital. My energy is coming back. I am shooting to return to work in 4 more weeks. The only complication I have had is an incision infection in one spot that its getting better. We are just doing wet to dry dressing changes. Well, ER is on, so back to being a couch potato! Blessed Be! Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Bert...... You are AWESOME! Keep up the great news! Heidi <big smiles> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Hi Jean, You wrote: I have talked to her about this surgery but she says she will not have it, she is scared to death to go thru anymore procedures. would you write me telling me the complete reason you had the transfusion and exactly what that surgery involved, also are you on medication for adverse effects of the transplant,,,thank you, jean, Indiana Jean, I underwent the surgery because I was suffering from acute recurrent pancreatitis for 3 years. I had been hospitalized 15 times in that time, with 8 hospitalizations occuring between December 2002 and April 2003. My attacks were spiraling out of control and it was just a matter of time before really bad things were going to happen. In a nutshell the operation consists of having your pancreas, spleen, gallbladder, and portion of stomach removed. The pancreas is then processed by a Cellular Transplant Surgeon who removes the insulin producing cells and these cells are injected into the liver (usually). If all goes well the cells thrive there and resume making insulin prevent the devastating, brittle diabetes that a patient would suffer without the cells. Since the patient gets their own cells transplanted there is no risk of rejection and antirejection meds are not needed. The only meds I am on now is pancreatitic enzymes for life, prevacid (or other such drug, nexium, etc) for life, and insulin as needed. I am only 6 weeks post-op so it is too early to know whether or not I will be on insulin for life, but due to miracle of islet cell transplant I do not have wild swings in blood sugar. I will be perfectly honest with you: the surgery is very intense. I don't know what procedures your daughter has undergone but it really doesn't get more invasive then this. Each person must decide for themselves if the risk is warranted. In my case it was easy, I was headed quickly towards being an invalid, and the surgery gave me my only decent shot at a normal life. If you daughter wants to consider this surgery let this group know and we can get you the contact information for surgeons that can do this surgery. As I understand it there are only 3 places in the US that can perform this surgery. This is a very involved procedure and I tried to answer your question as concisely as I could. I hope it helps. Blessed Be, Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2003 Report Share Posted June 26, 2003 Hi there Shirley, You wrote: " Dear Bert please explain to me again what drugs you are on and what drugs you will be on for life. I understand the enzymes and the insulin, maybe but the others I don't understand. I am so curious. Am I missing something? Thanks Bert ahead of time. Shirley " I take the following meds: ~creon 10 UL 4 capsules per meal, 2 per snack ~Prevacid 30mg ~sliding scale insulin (regular) ~twice daily 11 units of NPH insulin (and I am weaning off of duragesic and oxycodone) I guess your wondering about the prevacid. Without a pancreas your stomach is more suceptible to high acid content and subsequent complications (ulcers, reflux, etc.). I am finding I am way more prone to indigestion and heartburn now and my doc may increase my prevacid dose. So are you not on some kind of acid supressor? I thought that was standard medical protocol in people without a pancreas. How ya doing Shirley? How's the health and stuff? And thank you for always stepping up to answer the TP questions. Since I got mine from UC, I'm an oddball. Well, I'm an oddball for many reasons. Hehehe... Health and blessings, Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Hi , You wrote: " Did your surgen remove your spleen in you surgey and also what about the good old mr.gallbladder?? might be a dtupid question being that we went through the same surgey!!! Also how many Islet Cells did you get you may have mentioned but I just can't remember " These are interesting questions to me because it sounds like Dr. Sutherland uses a variety of techniques and my doctor doesn't. But then again I didn't ask my surgeon if there were different ways for him to get the job done. I just know what I experienced. I had my pancreas, spleen, and part of my stomach removed. I had already had Mr. Gallbladder out 2 years previously so they didn't have to mess with that. My surgey took 12 hours because they had issues freeing my pancreas. They were able to get 280,000 islet cells for transplant. How many did you get back? I have a question for you! What did Dr. Sutherland tell you regarding the long term expections. Any mention of having a reduced life span? How long do they expect the islet cells to keep on working? Since my hospital has only been doing these for 2 years they had little to say in terms of longevity, and durability of the surgery. Have a good night! Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Bert No you aren't an odd ball!!!! Dr.Sutherland went up on my prevacid since the day after my surgery for that same very reason that you mentioned in your email... I know take 30mg x2 a day.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Bert Sorry me the paon agaiN!!! I just wanted ask you.... Did your surgen remove your spleen in you surgey and also what about the good old mr.gallbladder?? might be a dtupid question being that we went through the same surgey!!! Also how many Islet Cells did you get you may have mentioned but I just can't remember Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 In a message dated 6/27/2003 1:06:18 AM Eastern Daylight Time, l10nx@... writes: > > ~creon 10 UL 4 capsules per meal, 2 per snack > ~Prevacid 30mg > ~sliding scale insulin (regular) > ~twice daily 11 units of NPH insulin > > (and I am weaning off of duragesic and oxycodone) > > I guess your wondering about the prevacid. Without a pancreas your > stomach is more suceptible to high acid content and subsequent > complications (ulcers, reflux, etc.). I am finding I am way more prone > to indigestion and heartburn now and my doc may increase my prevacid dose. > > So are you not on some kind of acid supressor? I thought that was > standard medical protocol in people without a pancreas. > > How ya doing Shirley? How's the health and stuff? And thank you for > always stepping up to answer the TP questions. Since I got mine from > UC, I'm an oddball. Well, I'm an oddball for many reasons. Hehehe... > > Health and blessings, > Bert > Hi Bert, thanks for the explanations. I take viokase 16 three with meals and two with a snack. The GI I am going to suggested I take two viokase 16 with meals and one with snacks but since he wasn't any part of the tp/ict team and because I don't want diarrhea I decided on my own that I want to take three and two. I always took Pepcid when I had pancreatitis. I can't remember if the doctor in MN prescribed an anti acid meds or not. I believe that I took it upon my self to ask for a prescription for Pepcid to take with dinner since that is the time I notice I have more acid. I wonder if that is the right drug for me and I also wonder if I take it at the right time and if I take it often enough or if I need more than one a day. I am going to ask my doctor about that. How often do you take your Previcid 30 and what times. It seems that you get much better after care by having the surgery here in Cincinnati. Can you explain about your insulin? I don' t understand anything about your types of insulin. Also, I would like to go to your doctor for my care since he would be very experienced with patients with the TP/ICT. Will you please give me his name? Thanks Bert. It is so great to have another TP/ICT who is so savvy and has had the surgery here in Cincinnati. What part of town do you live in? My husband and I are retired and live on the East side. Thanks, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 In a message dated 6/27/2003 2:56:39 AM Eastern Daylight Time, l10nx@... writes: > They were able to get 280,000 islet cells for > transplant. How many did you get back? > Hi Bert and , Dr. Herin was able to retrieve 217,000 islets from my tired, worn out OLD pancreas. Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 In a message dated 6/27/2003 10:20:50 AM Eastern Daylight Time, l10nx@... writes: > > I take prevacid 30mg once a day in mornings prior to eating any food. > HI Bert, I am surprised that you just take the Prevacid in the morning. I have sour stomach after dinner. Then I only take 20 mg of Pepcid at that time. I continue to eat until I go to bed so I can keep my weight up therefore I think I need more anti acid than what I am now taking. I am going to check with my doctor. Please let me know who your primary care doctor is. I would also like to know who your endocrinologist will be. I see Dr. Halstaed at Piedmont which you know is part of The University of Cincinnati Hospital. Dr. Rilo suggested I see another doctor there for my blood sugar but I just couldn't seem to meet up with him. So Dr. Halstaed was recommended by a nurse there. She is very nice and will give you all the time you need and more. I have been meaning to ask you how the nursing staff was when you were recovering from your surgery. I had two very bad blood infections at once that kept me in UC for 23 days and the nurses left a lot to be desired. A doctor I had there also commented on the bad nursing. Thanks Bert, Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2003 Report Share Posted June 27, 2003 Hi Shirley, I have gotten good follow up care from the surgeon but soon I will be turned over to my primary care and if I choose (I think I will) an endocrinologist (for diabetes issues). I have an appointment in one month now instead of weekly and the surgeon said I needed to start having appointments with my primary care so he can resume my care. He will be there for follow ups on a long term nature and to advise my primary care but he won't be covering my health very closely anymore. He is a busy surgeon so probably the best he could do is recommend someone for you to go to. If you want to see what your options are call the Pancreatic Disease Center and set up an appointment. Their number is 584-CURE. I take prevacid 30mg once a day in mornings prior to eating any food. If I end up requiring more I am not sure how they will dose it. As far as insulin doses and types, that can be pretty complicated and I only know what I have experienced and been educated on. In broad terms there are several types of insulin: regular (which is a semi-fast acting insulin), NPH (which is a long term insulin, meaning it remains active over a longer period of time), there are blends of the two, and there are special insulins that really fast acting, and or really long acting. I take NPH twice a day because it gives a gentle insulin coverage for a 10-12 hour period. I take regular insulin on a sliding scale as needed. I am on the 4 times a day blood checks, so that means prior to each meal, and prior to bed time/night time snack. The sliding scale I am on works like this: ~blood sugar less than 100 no insulin ~blood sugar 100 to 149 3 units ~blood sugar 150 to 199 6 units ~and so on, I never go above 130 so I haven't had to worry about the upper scale yet, but I do have it posted on my refigerator door. I am on tight insulin control which is appropriate because I am very stable and was non-diabetic prior to surgery. Treat aggresively and never have a hyper and never have diabetic complications. =) *smile* good luck, Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 In a message dated 6/28/2003 10:57:58 AM Eastern Daylight Time, l10nx@... writes: > Well my primary care is a family doctor in Fairfield, OH Dr. > Fenton. Hi Bert, I would love to have a doctor who is more knowledgeable about my islets and not having a pancreas than the new very young doctor that I have. He has made a few mistakes with me and now I don't trust him. Keep me posted on how your treatment goes with your doctor. OK? Shirley Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Hi Shirley, Well my primary care is a family doctor in Fairfield, OH Dr. Fenton. He is a very caring doctor but he has no special training or knowledge of pancreatitis issues and has never treated a patient without a pancreas before. I'm going to stick with him unless he isn't helping me or asks me to see someone else because I am comfortable with him, I am confident in my ability to stay on top of my healthy, and we have a good relationship. Like I said I doubt you would want to see him for any pancreatectomy issues, but if you really do let me know because he will give me discount if I refer someone to him LOL. I don't have a endo yet, and will only get one if I have need for one. I am doing great right now and I am sure in his family practice Dr. Fenton treats lots of diabetitics so it shouldn't be an issue. If weird things happen to me I will follow up with the Pancreatitic Disease Center. I probably can get by on only one prevacid a day because to be honest up until 3 years ago when my pancreatitis started I had never been sick, except for the common cold, though I did have an appendectomy, but that's just one of those things. So I was in excellent health up until 3 years ago. And now I hope to be again. See ya, Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Dear Bert, thanks for getting back to me concerning my daughter and the transplant. I think I have had a mistaken idea of what the transplant is, is it a pancreas from another human being or transplanting ths islet cells? Will you please explain this to me, I;m sorry to sound so dumb, but this is new to me and I am trying to glean all the information that I can on it,,,thank you,,,Jean Lindley, Indiana Re: 6 weeks post-op TP/ICT Hi Jean, You wrote: I have talked to her about this surgery but she says she will not have it, she is scared to death to go thru anymore procedures. would you write me telling me the complete reason you had the transfusion and exactly what that surgery involved, also are you on medication for adverse effects of the transplant,,,thank you, jean, Indiana Jean, I underwent the surgery because I was suffering from acute recurrent pancreatitis for 3 years. I had been hospitalized 15 times in that time, with 8 hospitalizations occuring between December 2002 and April 2003. My attacks were spiraling out of control and it was just a matter of time before really bad things were going to happen. In a nutshell the operation consists of having your pancreas, spleen, gallbladder, and portion of stomach removed. The pancreas is then processed by a Cellular Transplant Surgeon who removes the insulin producing cells and these cells are injected into the liver (usually). If all goes well the cells thrive there and resume making insulin prevent the devastating, brittle diabetes that a patient would suffer without the cells. Since the patient gets their own cells transplanted there is no risk of rejection and antirejection meds are not needed. The only meds I am on now is pancreatitic enzymes for life, prevacid (or other such drug, nexium, etc) for life, and insulin as needed. I am only 6 weeks post-op so it is too early to know whether or not I will be on insulin for life, but due to miracle of islet cell transplant I do not have wild swings in blood sugar. I will be perfectly honest with you: the surgery is very intense. I don't know what procedures your daughter has undergone but it really doesn't get more invasive then this. Each person must decide for themselves if the risk is warranted. In my case it was easy, I was headed quickly towards being an invalid, and the surgery gave me my only decent shot at a normal life. If you daughter wants to consider this surgery let this group know and we can get you the contact information for surgeons that can do this surgery. As I understand it there are only 3 places in the US that can perform this surgery. This is a very involved procedure and I tried to answer your question as concisely as I could. I hope it helps. Blessed Be, Bert Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 28, 2003 Report Share Posted June 28, 2003 Hi Jean: Regarding this: Dear Bert, thanks for getting back to me concerning my daughter and the transplant. I think I have had a mistaken idea of what the transplant is, is it a pancreas from another human being or transplanting ths islet cells? Will you please explain this to me, I;m sorry to sound so dumb, but this is new to me and I am trying to glean all the information that I can on it,,,thank you,,,Jean Lindley, Indiana You are confused but do not feel bad, most people are confused about the total pancreatectomy with islet cell transplant. That transplant word confuses everyone. Don't think of it as a transplant at all. Think of it as " relocation " . The pancreas is removed forever and is not replaced. The patient will live without a pancreas. The pancreas is sent to a lab where it is liquified. The insulin producing cells (islet cells) are removed. Those cells are then " relocated " to another part of the body. The hope is the insulin cells will continue to function and the patient will not be diabetic. If you did not " relocate " the islet cells the diabetes would be so very bad as to be potentially life threatening. That is why under most circumstances a surgeon will not do this surgery for a patient who is already diabetic. I suggest you do research on the web. A good starting place is http://www.top5plus5.com/ where there is a category called procedures (check out the surgical selection). Look there for more info. Good luck, Bert Quote Link to comment Share on other sites More sharing options...
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