Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Hi, Becky - My son has Mitochondrial Encephalomyopathy, Complex I and III defects. He is completely deficient in complex I activity, but his biopsy showed some very limited complex III activity. He has been responsive to his cocktail as well .. . . he takes CoQ10, Carnitor, Lipoic Acid, Vit B-2, Vit C, Selenium, and Vit E. We are in the process of changing his diet (which is predominantly taken by g-tube) by cutting back on fats, substituting MCT oil for the remaining fat, and increasing complex carbohydrates (probably by adding polycose which is a glucose polymer) in his enteral feeding formula. is doing really well . . . he has been seizure free (though still on seizure meds) since starting the mito supplements and meds. He never went more than 10 to 12 weeks between ER visits, admits, and/or major changes in baseline before starting the supplements, and since starting we have not been to the ER, been hospitalized, or had any major change (with the exception of positive developmental changes!) It has been almost a year now!!!! We are delighted, to say the least! (Of course, I am now feeling compelled to knock on wood, as even though I am not superstitious, it scares me to write this and post it " out loud " !) I don't know about K-3 . . . can you tell me more about it? Kathy C. mom to (8, nda) and (3, Complex I and III) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 In a message dated 1/25/00 8:18:35 PM Eastern Standard Time, cutillo@... writes: << Hi, Sorry to eavesdrop, so to speak. Did you notice positive changes pretty soon after starting the supplements? Will your child have to stay on a modified diet with supplements his whole life? How is doing developmentally? My son's preliminary tests indicate mito but we are still waiting for the repeat test results. Thanks! Lori >> Lori - You are perfectly welcome to eavesdrop!!!! We started with CoQ10, and initially, the dose was too high for just starting out. He had MORE sweating episodes (autonomic dysfunction) and seemed sort of " hyped-up " . We backed down and slowly adjusted the dosage upward. We didn't notice anything immediately, except that it seemed that his stools went from being very loose all the time, to being a little more solid . . . like peanut butter or tomato paste consistency, with episodes of diarrhea. However, after several weeks we noticed that hadn't had a serious episode of anything for some time. Then the time just got longer and longer, and we noticed that we hadn't had a seizure or neuro event in a long time. Then we noticed that we hadn't had to go to the hospital and that he wasn't getting sick like before (with the exception of ear infections, still frequent, but they weren't affecting him as terribly . . . fevers weren't as high, not as sick). We added the Carnitor next. Now that, within just a few weeks, had an obvious impact on his endurance and strength. And his stools became completely normal looking for the first time in his life. Even the odor seems normal now. We had a three year old boy who could not jump even one centimeter off the ground, couldn't stand on one foot without support, couldn't walk up and down stairs without holding a railing and someone's hand (and even then could only do a few stairs before getting tired), couldn't climb onto a bed or even the sofa without help, etc. He is JUMPING now. He can catch some serious air!!!!! He can climb onto any bed (towards the end of the day sometimes needs help if the day was hard). He can sometimes walk up a couple of stairs unassisted without holding the railing--hands free. The carnitor definitely made a noticeable difference quickly--noticeable within a week, huge difference within 3 weeks. Just as an FYI-- does not have a primary carnitine deficiency. Some doctors wouldn't have chosen to treat him with Carnitine. But I swear he is tremendously responsive to it!!!!! Kathy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 In a message dated 1/25/00 8:18:35 PM Eastern Standard Time, cutillo@... writes: << Hi, Sorry to eavesdrop, so to speak. Did you notice positive changes pretty soon after starting the supplements? Will your child have to stay on a modified diet with supplements his whole life? How is doing developmentally? My son's preliminary tests indicate mito but we are still waiting for the repeat test results. Thanks! Lori >> Oops . . . forgot to answer your other questions . . . I think that he will probably have to stay on the supplements and diet his whole life. They are not curing his disorder. They are just providing his body with a way to compensate for the problem. Developmentally: gross and fine motor delays, but catching up lately socially - age appropriate verbally - expressive above average for age level, receptive a little below average BUT has had horrible ear infections and fluid cognitively - reliable, valid testing at this age is hard to achieve, but MY opinion is that he is normal, especially given the challenges he has faced, his conductive hearing problems from the fluid and infections, and the fact that his expressive language is so good. Did your son have a biopsy? Kathy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2000 Report Share Posted January 25, 2000 Hi, Sorry to eavesdrop, so to speak. Did you notice positive changes pretty soon after starting the supplements? Will your child have to stay on a modified diet with supplements his whole life? How is doing developmentally? My son's preliminary tests indicate mito but we are still waiting for the repeat test results. Thanks! Lori ---------- > From: KCorley309@... > To: Mitoonelist > Subject: Re: New to List > Date: Tuesday, January 25, 2000 7:37 PM > > From: KCorley309@... > > Hi, Becky - > > My son has Mitochondrial Encephalomyopathy, Complex I and III defects. He is > completely deficient in complex I activity, but his biopsy showed some very > limited complex III activity. He has been responsive to his cocktail as well > . . . he takes CoQ10, Carnitor, Lipoic Acid, Vit B-2, Vit C, Selenium, and > Vit E. We are in the process of changing his diet (which is predominantly > taken by g-tube) by cutting back on fats, substituting MCT oil for the > remaining fat, and increasing complex carbohydrates (probably by adding > polycose which is a glucose polymer) in his enteral feeding formula. > > is doing really well . . . he has been seizure free (though still on > seizure meds) since starting the mito supplements and meds. He never went > more than 10 to 12 weeks between ER visits, admits, and/or major changes in > baseline before starting the supplements, and since starting we have not been > to the ER, been hospitalized, or had any major change (with the exception of > positive developmental changes!) It has been almost a year now!!!! We are > delighted, to say the least! (Of course, I am now feeling compelled to knock > on wood, as even though I am not superstitious, it scares me to write this > and post it " out loud " !) > > I don't know about K-3 . . . can you tell me more about it? > > Kathy C. > mom to (8, nda) and (3, Complex I and III) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 Kathy, Would you mind if I asked how much b2 you give him? Thanks, , , 7 's story http://expage.com/page/rettbook ---------- >From: KCorley309@... >To: Mitoonelist >Subject: Re: New to List >Date: Tue, Jan 25, 2000, 7:37 PM > > From: KCorley309@... > > Hi, Becky - > > My son has Mitochondrial Encephalomyopathy, Complex I and III defects. He is > completely deficient in complex I activity, but his biopsy showed some very > limited complex III activity. He has been responsive to his cocktail as well > . . . he takes CoQ10, Carnitor, Lipoic Acid, Vit B-2, Vit C, Selenium, and > Vit E. We are in the process of changing his diet (which is predominantly > taken by g-tube) by cutting back on fats, substituting MCT oil for the > remaining fat, and increasing complex carbohydrates (probably by adding > polycose which is a glucose polymer) in his enteral feeding formula. > > is doing really well . . . he has been seizure free (though still on > seizure meds) since starting the mito supplements and meds. He never went > more than 10 to 12 weeks between ER visits, admits, and/or major changes in > baseline before starting the supplements, and since starting we have not been > to the ER, been hospitalized, or had any major change (with the exception of > positive developmental changes!) It has been almost a year now!!!! We are > delighted, to say the least! (Of course, I am now feeling compelled to knock > on wood, as even though I am not superstitious, it scares me to write this > and post it " out loud " !) > > I don't know about K-3 . . . can you tell me more about it? > > Kathy C. > mom to (8, nda) and (3, Complex I and III) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 Kathy, Would you mind if I asked how much b2 you give him? Thanks, , , 7 's story http://expage.com/page/rettbook ---------- >From: KCorley309@... >To: Mitoonelist >Subject: Re: New to List >Date: Tue, Jan 25, 2000, 7:37 PM > > From: KCorley309@... > > Hi, Becky - > > My son has Mitochondrial Encephalomyopathy, Complex I and III defects. He is > completely deficient in complex I activity, but his biopsy showed some very > limited complex III activity. He has been responsive to his cocktail as well > . . . he takes CoQ10, Carnitor, Lipoic Acid, Vit B-2, Vit C, Selenium, and > Vit E. We are in the process of changing his diet (which is predominantly > taken by g-tube) by cutting back on fats, substituting MCT oil for the > remaining fat, and increasing complex carbohydrates (probably by adding > polycose which is a glucose polymer) in his enteral feeding formula. > > is doing really well . . . he has been seizure free (though still on > seizure meds) since starting the mito supplements and meds. He never went > more than 10 to 12 weeks between ER visits, admits, and/or major changes in > baseline before starting the supplements, and since starting we have not been > to the ER, been hospitalized, or had any major change (with the exception of > positive developmental changes!) It has been almost a year now!!!! We are > delighted, to say the least! (Of course, I am now feeling compelled to knock > on wood, as even though I am not superstitious, it scares me to write this > and post it " out loud " !) > > I don't know about K-3 . . . can you tell me more about it? > > Kathy C. > mom to (8, nda) and (3, Complex I and III) > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 In a message dated 1/26/00 1:03:11 PM Pacific Standard Time, ceid@... writes: << Thanks, I'm working with some mito supps, added in the b1 and b2 and am seeing an improvement with amanda. >> WOW !! That is wonderful. congratulations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 In a message dated 1/26/00 1:03:11 PM Pacific Standard Time, ceid@... writes: << Thanks, I'm working with some mito supps, added in the b1 and b2 and am seeing an improvement with amanda. >> WOW !! That is wonderful. congratulations. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 Hi ... It wasn't my question, but is 70 pounds and we give her 100mg B2 twice a day under Dr. Stein @ Choc; she's also on B6 (50mg twice daily) , Carnitor (only 1.6ml twice daily... is that very low guys?), and Q10 (100mg twice daily) . She's also on a multi-vitamin, Topimax 37.5mg twice daily and Klonopin 1.0 mg twice daily. We are diagnosed " probable mito disease, acidosis, seizures, dev. delay, visual stim/seizure triggers, gi distress as constipation... Hope the profile helps a little. Sharon C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 In a message dated 1/26/00 12:53:49 PM Eastern Standard Time, ceid@... writes: << Kathy, Would you mind if I asked how much b2 you give him? Thanks, , , 7 >> - Off the top of my head . . . 100 mg 2x daily. But I need to check to be sure. I will confirm it after I check downstairs! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 In a message dated 1/26/00 12:53:49 PM Eastern Standard Time, ceid@... writes: << Kathy, Would you mind if I asked how much b2 you give him? Thanks, , , 7 >> - Off the top of my head . . . 100 mg 2x daily. But I need to check to be sure. I will confirm it after I check downstairs! Kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 Thanks, I'm working with some mito supps, added in the b1 and b2 and am seeing an improvement with amanda. Just wondered how high some go with the youngin's. amanda has atypical rett, with some mito issues. , , 7 's story http://expage.com/page/rettbook ---------- > >To: Mitoonelist >Subject: Re: New to List >Date: Wed, Jan 26, 2000, 2:53 PM > > > > Hi ... > > It wasn't my question, but is 70 pounds and we give her 100mg B2 > twice a day under Dr. Stein @ Choc; she's also on B6 (50mg twice daily) > , Carnitor (only 1.6ml twice daily... is that very low guys?), and Q10 > (100mg twice daily) . She's also on a multi-vitamin, Topimax 37.5mg > twice daily and Klonopin 1.0 mg twice daily. We are diagnosed " probable > mito disease, acidosis, seizures, dev. delay, visual stim/seizure > triggers, gi distress as constipation... Hope the profile helps a > little. > > Sharon C > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 26, 2000 Report Share Posted January 26, 2000 Thanks, I'm working with some mito supps, added in the b1 and b2 and am seeing an improvement with amanda. Just wondered how high some go with the youngin's. amanda has atypical rett, with some mito issues. , , 7 's story http://expage.com/page/rettbook ---------- > >To: Mitoonelist >Subject: Re: New to List >Date: Wed, Jan 26, 2000, 2:53 PM > > > > Hi ... > > It wasn't my question, but is 70 pounds and we give her 100mg B2 > twice a day under Dr. Stein @ Choc; she's also on B6 (50mg twice daily) > , Carnitor (only 1.6ml twice daily... is that very low guys?), and Q10 > (100mg twice daily) . She's also on a multi-vitamin, Topimax 37.5mg > twice daily and Klonopin 1.0 mg twice daily. We are diagnosed " probable > mito disease, acidosis, seizures, dev. delay, visual stim/seizure > triggers, gi distress as constipation... Hope the profile helps a > little. > > Sharon C > > > --------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Great to meet you, Sally! I had a RNY with Dr. Thayer on 4/25/00. I'm 5'4, 29, and started at 236#. I now weigh 172, and feel pretty great. No food problems at all. Keep us posted on how things progress. My number is probably on the list that Dr. Thayer gives out, so feel free to call if you want to pick my brain. At the moment, I'm too sleepy to say much else.... but welcome! - Alice A. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Sally A regular blender will do you. You will have alot of things like water, crystal lite, protein shakes, soups (broths, etc) tea .. they say take anything your family eats ie chicken and puree it .. or put it in your soup ... for taste .. cream of chicken soup, instant mashed potatos, sugar free popsicles, sugar free puddings, tomato juice, etc ... We can get pretty creative when we are lusting after tbone steak in that liquid phase lol. Have you checked out this site yet? Not necessarily related to just recipes but a great resource about the whole weight loss surgery procedure. http://www.obesityhelp.com/morbidobesity/ Lots of great info .. Lyssa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 Marcia, I was very worried about telling my mom about the decision for my surgery too. I think it is a good idea to wait until after your parents party! I waited until about a month before surgery and had a ton of info to give my mom so that she could see exactly what I was going to be doing. She was not thrilled but was very supportive. I am 3 months out as of yesterday and I have lost 54.5 lbs and on my b day yesterday she was even talking to me about what a great year this will be and how happy she was for me with my desicion! Hang in there you will get through this! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 9, 2000 Report Share Posted August 9, 2000 thank you, and NOPE, a regular blender works just fine..unless you have a " blonde " blender like mine that you have to press the buttons opposite of what they say, otherwise, you'll be chopping when whipping, whipping when chopping! Dawn New to list > > Hi everyone, > My name is Sally MacDuff. I live in Needham, Mass. I am 53 years > old, > married to Doug, an Architect, and have a 24-year-old daughter, Alyson, > who > will be getting married in October. Busy times around here regarding > wedding. > Today, I went for my first consultation with Dr. Bruce Thayer and > staff at > the Newton-Wellesley Hospital in Newton, MA . I have a number of > medical > problems, and I was afraid that I might not be able to be a candidate > for WLS. > He thinks I can have the surgery. He does need to talk with my > gastroenterologist, > also there at NWH, as I have Barrett's Esophagus, a precancerous > condition of > the esophagus. I also have two adrenal gland problems requiring steroid > replacement > therapy daily (Prednisone - a killer weight-wise), but he thinks that > can be managed. > during the surgery with extra boosts of steroids to keep me going. > I went in to the visit thinking that I was going there for a > consultation to see what > he would think about my having the procedure. After being there for > three hours and > seeing the nutritionist, psychologist, and Dr. Thayer, as well as > talking with people in > the waiting room, some who had just had the surgery and others who had > had it > a while ago and they were beautiful. Now, I am a little more encouraged > about the > surgery for me. He said he would have to talk with the > gastroenterologist, and also > I would need an upper GI barium swallow test. I was so encouraged by > the people > in the waiting room who had the surgery. They gave me this email list > addy, and I > just had to contact you all to introduce myself, but also to hear from > various people > about their thoughts/results/whatever. My husband is worrying about > this and thinks > it is a little " extreme " , but is willing to go with me to the mandatory > Group Session > held Monthly. Dr. Thayer encouraged that we both come to learn as much > as > possible. > So, I guess I am introducing myself, saying hi to all of you, and > saying " tell me all > you know " - giggle. I have lots to learn. An immediate question > concerns the diet > immediately postop (for his practice everything is pureed for the first > month). Then, how > does it go? > I think I have rattled on here enough. Ask me questions. I > naturally weighed > more there than I thought I weighed, and they didn't tell me my BMI. I > weigh > 240 lbs., am 5'2 " tall, so it is, I think, around 43-44, somewhere in > that range. > I will be quiet now. Thank you for any input. Sally > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Welocome Marcia, You have asked a really tough question ! Alot of us tell and a lot of us don't. My suggestion would be to tell the after thier anniversary as you said. Maybe you could take them to one of the support group meetings. I don't know where you are from. I had issues with my 14 yr. old daughter..I brought her to a meeting. To see all the success stories and love and support that comes from these groups is incredible. Hopefully they could understand this. Also, explaining your real innermost feeling on your weight. I wanted to avoid being as ill as my mother (skinny) being morbidly obese put me at greater risk for all her conditions. I never wanted to be skinny ,,I want to be healthy... My dad who cares for her was very supportive..he stiill wishes there was another way..but he know this was the last resort.. and didn't want my kids to live with out a mom or a sick mom. My family never feared that I would die... Any surgery has risks.. It was more a " down the road " thing...... Speak to them openly and honestly..if the love you they will support you..... Just my thoughts.. Good Luck Cheryl 11-29-99 Dr Reines 250-160-135 Advice for the day: If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two and keep away from children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Welocome Sally..... Yes your BMI sound about right.. Good Luck you will get there! cheryl Advice for the day: If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two and keep away from children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Dawn, I thought it was me... I was 5' 3 " 1/4 and I am now 5' 2 " I can't affort to get much shorter.... I am already verticallly chalanged LOL cheryl Advice for the day: If you have a lot of tension and you get a headache, do what it says on the aspirin bottle: Take two and keep away from children. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Hi Sally! I have Tufts HMO, NO PROBLEMS what so ever with my approval. Good luck on the wedding, follow-up for the esophagus, and choosing the best route/time frame for your surgery! Dawn New to list > > > > Hi everyone, > > My name is Sally MacDuff. I live in Needham, Mass. I am 53 years > > old, > > married to Doug, an Architect, and have a 24-year-old daughter, Alyson, > > who > > will be getting married in October. Busy times around here regarding > > wedding. > > Today, I went for my first consultation with Dr. Bruce Thayer and > > staff at > > the Newton-Wellesley Hospital in Newton, MA . I have a number of > > medical > > problems, and I was afraid that I might not be able to be a candidate > > for WLS. > > He thinks I can have the surgery. He does need to talk with my > > gastroenterologist, > > also there at NWH, as I have Barrett's Esophagus, a precancerous > > condition of > > the esophagus. I also have two adrenal gland problems requiring steroid > > replacement > > therapy daily (Prednisone - a killer weight-wise), but he thinks that > > can be managed. > > during the surgery with extra boosts of steroids to keep me going. > > I went in to the visit thinking that I was going there for a > > consultation to see what > > he would think about my having the procedure. After being there for > > three hours and > > seeing the nutritionist, psychologist, and Dr. Thayer, as well as > > talking with people in > > the waiting room, some who had just had the surgery and others who had > > had it > > a while ago and they were beautiful. Now, I am a little more encouraged > > about the > > surgery for me. He said he would have to talk with the > > gastroenterologist, and also > > I would need an upper GI barium swallow test. I was so encouraged by > > the people > > in the waiting room who had the surgery. They gave me this email list > > addy, and I > > just had to contact you all to introduce myself, but also to hear from > > various people > > about their thoughts/results/whatever. My husband is worrying about > > this and thinks > > it is a little " extreme " , but is willing to go with me to the mandatory > > Group Session > > held Monthly. Dr. Thayer encouraged that we both come to learn as much > > as > > possible. > > So, I guess I am introducing myself, saying hi to all of you, and > > saying " tell me all > > you know " - giggle. I have lots to learn. An immediate question > > concerns the diet > > immediately postop (for his practice everything is pureed for the first > > month). Then, how > > does it go? > > I think I have rattled on here enough. Ask me questions. I > > naturally weighed > > more there than I thought I weighed, and they didn't tell me my BMI. I > > weigh > > 240 lbs., am 5'2 " tall, so it is, I think, around 43-44, somewhere in > > that range. > > I will be quiet now. Thank you for any input. Sally > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Dawn, Ok, I am all set blender-wise. You people have been so nice to me, and I just joined. Plus you are fun to listen to. This is a really big thing to hear about and decide on. If I go ahead and have the surgery, I probably wouldn't have it before the beginning of the year which is tough also - waiting. My daughter's wedding in October is a big reason for waiting, plus in November every year, I have to undergo an endoscopy of my esophagus and stomach to check my Barrett's Esophagus to make sure there is no change or progress to cancer. Need to have that done and know results before I can proceed. So that brings us to the holidays. I might as well wait until the beginning of the New Year. I am going to call Dr. Thayer's office today to see how far ahead he is booked and when I need to make a decision if I am thinking of a January surgery. Also, need to have insurance approval. Have any of you had experience with Tufts HMO approving this surgery? Well, just thanks so much for emails to me and others. You are working so hard on your own weight and seem to have a great attitude which helps others. A very upbeat encouraging group. Great work. I am so glad that I joined. Sally Dawn wrote: > thank you, and NOPE, a regular blender works just fine..unless you have a > " blonde " blender like mine that you have to press the buttons opposite of > what they say, otherwise, you'll be chopping when whipping, whipping when > chopping! > > Dawn > > New to list > > > > Hi everyone, > > My name is Sally MacDuff. I live in Needham, Mass. I am 53 years > > old, > > married to Doug, an Architect, and have a 24-year-old daughter, Alyson, > > who > > will be getting married in October. Busy times around here regarding > > wedding. > > Today, I went for my first consultation with Dr. Bruce Thayer and > > staff at > > the Newton-Wellesley Hospital in Newton, MA . I have a number of > > medical > > problems, and I was afraid that I might not be able to be a candidate > > for WLS. > > He thinks I can have the surgery. He does need to talk with my > > gastroenterologist, > > also there at NWH, as I have Barrett's Esophagus, a precancerous > > condition of > > the esophagus. I also have two adrenal gland problems requiring steroid > > replacement > > therapy daily (Prednisone - a killer weight-wise), but he thinks that > > can be managed. > > during the surgery with extra boosts of steroids to keep me going. > > I went in to the visit thinking that I was going there for a > > consultation to see what > > he would think about my having the procedure. After being there for > > three hours and > > seeing the nutritionist, psychologist, and Dr. Thayer, as well as > > talking with people in > > the waiting room, some who had just had the surgery and others who had > > had it > > a while ago and they were beautiful. Now, I am a little more encouraged > > about the > > surgery for me. He said he would have to talk with the > > gastroenterologist, and also > > I would need an upper GI barium swallow test. I was so encouraged by > > the people > > in the waiting room who had the surgery. They gave me this email list > > addy, and I > > just had to contact you all to introduce myself, but also to hear from > > various people > > about their thoughts/results/whatever. My husband is worrying about > > this and thinks > > it is a little " extreme " , but is willing to go with me to the mandatory > > Group Session > > held Monthly. Dr. Thayer encouraged that we both come to learn as much > > as > > possible. > > So, I guess I am introducing myself, saying hi to all of you, and > > saying " tell me all > > you know " - giggle. I have lots to learn. An immediate question > > concerns the diet > > immediately postop (for his practice everything is pureed for the first > > month). Then, how > > does it go? > > I think I have rattled on here enough. Ask me questions. I > > naturally weighed > > more there than I thought I weighed, and they didn't tell me my BMI. I > > weigh > > 240 lbs., am 5'2 " tall, so it is, I think, around 43-44, somewhere in > > that range. > > I will be quiet now. Thank you for any input. Sally > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Hi Dawn, Called Dr. Thayer's office a few minutes ago. He is booking 8 weeks ahead at this point. Gives me some information. They said no problem with Tufts HMO also. So thank you, too. That is good news also. Questions for you or anyone: 1. Do you require a blood transfusion for this operation? 2. Ok, you are on a course of losing weight. What eventually stops you from losing weight once you have achieved your goal? How can you eat more with the size of the stomach pouch? Just wondering, Sally Dawn wrote: > Hi Sally! > > I have Tufts HMO, NO PROBLEMS what so ever with my approval. Good luck on > the wedding, follow-up for the esophagus, and choosing the best route/time > frame for your surgery! > > Dawn > > New to list > > > > > > Hi everyone, > > > My name is Sally MacDuff. I live in Needham, Mass. I am 53 years > > > old, > > > married to Doug, an Architect, and have a 24-year-old daughter, Alyson, > > > who > > > will be getting married in October. Busy times around here regarding > > > wedding. > > > Today, I went for my first consultation with Dr. Bruce Thayer and > > > staff at > > > the Newton-Wellesley Hospital in Newton, MA . I have a number of > > > medical > > > problems, and I was afraid that I might not be able to be a candidate > > > for WLS. > > > He thinks I can have the surgery. He does need to talk with my > > > gastroenterologist, > > > also there at NWH, as I have Barrett's Esophagus, a precancerous > > > condition of > > > the esophagus. I also have two adrenal gland problems requiring steroid > > > replacement > > > therapy daily (Prednisone - a killer weight-wise), but he thinks that > > > can be managed. > > > during the surgery with extra boosts of steroids to keep me going. > > > I went in to the visit thinking that I was going there for a > > > consultation to see what > > > he would think about my having the procedure. After being there for > > > three hours and > > > seeing the nutritionist, psychologist, and Dr. Thayer, as well as > > > talking with people in > > > the waiting room, some who had just had the surgery and others who had > > > had it > > > a while ago and they were beautiful. Now, I am a little more encouraged > > > about the > > > surgery for me. He said he would have to talk with the > > > gastroenterologist, and also > > > I would need an upper GI barium swallow test. I was so encouraged by > > > the people > > > in the waiting room who had the surgery. They gave me this email list > > > addy, and I > > > just had to contact you all to introduce myself, but also to hear from > > > various people > > > about their thoughts/results/whatever. My husband is worrying about > > > this and thinks > > > it is a little " extreme " , but is willing to go with me to the mandatory > > > Group Session > > > held Monthly. Dr. Thayer encouraged that we both come to learn as much > > > as > > > possible. > > > So, I guess I am introducing myself, saying hi to all of you, and > > > saying " tell me all > > > you know " - giggle. I have lots to learn. An immediate question > > > concerns the diet > > > immediately postop (for his practice everything is pureed for the first > > > month). Then, how > > > does it go? > > > I think I have rattled on here enough. Ask me questions. I > > > naturally weighed > > > more there than I thought I weighed, and they didn't tell me my BMI. I > > > weigh > > > 240 lbs., am 5'2 " tall, so it is, I think, around 43-44, somewhere in > > > that range. > > > I will be quiet now. Thank you for any input. Sally > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 Hi Sally, Welcome! I too am 53 years old. I had the surgery 5 weeks ago (Dr. Reines at NWH) and I have lost 35 lbs. so far. I feel wonderful and everyone is starting to notice the weight loss. At one meeting I sat next to a 63 year old woman who had the surgery in the past year. She had lost 65 lbs. at that time. My husband was not too happy about it but went along with me. The same for my children (6 of them). some were happy, and some tried to talk me out of it. Now they are all happy for me. I have been lucky, so far. healing well, no complications and feeling better and stronger everyday. Go for it!!! Hugs, Diane R. 320/285/? rny 6/27/00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2000 Report Share Posted August 10, 2000 In a message dated 8/10/00 5:30:08 PM Eastern Daylight Time, sallymacduff@... writes: > get along with all ages, but it is interesting to hear also from someone my > age > (I am > not going to call us OLD, although I feel it) with perhaps different issues - > I > am Hi Sally my name is Norma and I was 53 two weeks before my opp. in Dec. 99 You will do just fine but yes older people do have different problems as we all do young and old. After your opp. when you start to drop the weight you will get more energy then you will feel perky and younger your self. It happens believe me. NORMA IN MASS 267/184/119 RNY12/9/99 DR,s Brig. Woman's Hernia-2 TT DR. Randall 2001 ? Quote Link to comment Share on other sites More sharing options...
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