Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Lucy here, would be glad to answer any questions that I might have the answers for.Love and Prayers Enderle wrote: > Angie: > > Would certainly be happy to answer questions if posted. Post away and I'll > respond. > > > > rpawareness@... wrote: > > > hi ll if I made up a list of questions concerning the support group would > > most of you actually answer them/? there re a few things I have had in my > > mind but nbeed to pass it along to the supporttees to see if it will fly > > > > love, hugs and hope > > Angie > > http://www.allplaycollege.com/go.cfm?referredby=rawareness > > > > hi and welcome. maybe we can come up with answers that our doctors can't > > ------------------------------------------------------------------------ > Save 75% on Products! > Find incredible deals on overstocked items with Free shipping! > http://click./1/4013/1/_/32049/_/957521563/ > ------------------------------------------------------------------------ > > hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2000 Report Share Posted May 5, 2000 Angie, Ask away ... asking questions are the only way we're ever going to figure this out! Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 Roy, welcome back, we've missed you. Hope you had a nice trip. Everyone is willing to answer any of Angie's questions. the only one I have kept track of was the blood types. Hope you have a nice weekend. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 In a message dated 05/06/2000 3:17:25 PM Eastern Daylight Time, RLR1999@... writes: << have seen recently a bunch of survey type questions being asked. Is someone gatherng the answers? >> I ws assuming that whomever asked the question was gathering the info since I am not online on a steady basis right now. love, hugs and hope Angie http://www.allplaycollege.com/go.cfm?referredby=rawareness Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2000 Report Share Posted May 6, 2000 1. does anyone else in your family show have an autoimmune disease or show signs of having one? a) if yes list who they are and what they have 2. Do you see other specialists other than the rheumatologist? if yes list 3. Do you have any other autoimmune diseases or syndromes? if yes list 4. do you have a good support system at home? 5. do you suffer from depression as a result of having RP? 6. what else would you like to see the list supply/ eg: more support, more medical info, more the real us, chating and things, 7. besides the obvious change in yourself directly from the disease, do you feel this has changed you mentally as well as physically and if you how so? For the spouses 1. how has this affected you? 2. since RP isn't always visable; has it changed your relationship I will keep a log of the answers and compile the data. please send the answers directly to me privately. when I send the results out no names will go with it so only I will know who answers and what the answers are. thank you love, hugs and hope Angie http://www.allplaycollege.com/go.cfm?referredby=rawareness Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 rpawareness@... wrote: 1. does anyone else in your family show have an autoimmune disease or show signs of having one? a) if yes list who they are and what they have Not that I know of. I didn't know I had RP until 4 months ago. 2. Do you see other specialists other than the rheumatologist? if yes list. I see my regular GP, the ENT (Local specialists) and Rheumatologist at Duke Clinic 3. Do you have any other autoimmune diseases or syndromes? if yes list. I have been diagnosed with Klippel-Feil Syndrome which has fused vertebrae at the top of my spine, Oculta Spina Bifida, double uterus, double uvula, limited range of motion in the neck, low hairline, and other things go along with it. My daughter and her 3 year old son also have KFS. Doctors at Duke Genetics clinic feel that some of 's neurological problems may have come from the KFS. My daughter has the double uterus, the double uvula, Oculta Spina Bifida, limited range of motion in turning her head, her son has a double kidney instead of the bifed uterus, his kidneys are fused at the bottom and function seperately and they call it a horseshoe kidney. 4. do you have a good support system at home? My daughter and her husband and three children live with me and are understanding of my condition and try to help me feel better when I am "beating myself up" or having a "pitty party". I have good "pitty parties", I will invite the group sometime. 5. do you suffer from depression as a result of having RP? Yes, as a matter of fact I am presently taking Paxil for depression. I had gone off of it after I retired from teaching in an institution for the mentally retarded, but got back on it after I was diagnosed with RP. Mainly because I understand that stress can cause you to flare easily and I have a plenty of that to go around to everyone. My Paxil does seem to help. 6. what else would you like to see the list supply/ eg: more support, more medical info, more the real us, chating and things, ALL OF THE ABOVE 7. besides the obvious change in yourself directly from the disease, do you feel this has changed you mentally as well as physically and if you how so? For the spouses I THINK THAT I JUST HAVE AN ATTITUDE OF NOT CARING ABOUT MY WEIGHT ANYMORE, THAT I HAVE OTHER MORE IMPORTANT THINGS TO WORRY ABOUT AND THAT MY LOOKS ARE ABOUT TO START CHANGING AND PEOPLE WON'T BE NOTICING MY WEIGHT LIKE THEY WILL OTHER THINGS ABOUT ME. THE PREDNISONE DOES ENOUGH IN THAT AREA. WITH BLOWN UP CHEEKS AND MAKES ME LOOK LIKE A CHIPMUNK. 1. how has this affected you? I DON'T HAVE A SPOUSE BUT I DON'T THINK I AM REALLY WORRIED ABOUT WHAT A MAN MIGHT THINK ABOUT MY LOOKS ANYMORE THAN IT MIGHT BOTHER ME WITH THE WAY A FRIEND OR FAMILY MAY SEE ME, ESPECIALLY MY GRANDCHILDREN. 2. since RP isn't always visable; has it changed your relationship THERE ARE TIMES THAT I CAN FEEL AS IF I DON'T HAVE A THING WRONG WITH ME, LIKE WHEN I AM NOT TRYING TO FLARE. (FOR THE LAST MONTH, I HAVE HAD SOME SIGN OF FLARING EACH AND EVERY DAY) I will keep a log of the answers and compile the data. please send the answers directly to me privately. when I send the results out no names will go with it so only I will know who answers and what the answers are. thank you THANK YOU ANGIE, FOR ALL OF YOUR TIME , CARING AND LOVE FOR THE ENTIRE GROUP. LUCY love, hugs and hope Angie http://www.allplaycollege.com/go.cfm?referredby=rawareness ------------------------------------------------------------------------ You have a voice mail message waiting for you at iHello.com: http://click./1/3555/1/_/32049/_/957678512/ ------------------------------------------------------------------------ hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 7, 2000 Report Share Posted May 7, 2000 1. does anyone else in your family show have an autoimmune disease or show signs of having one? a) if yes list who they are and what they have - My grandmother had arthritis, my brother, uncles and grandfather have diabetes, my dad had thyroid cancer and I'm sure he had thyroid problems prior to that but it went without diagnosis 2. Do you see other specialists other than the rheumatologist? if yes list Opthomologist (sp), saw an upper GI guy 3. Do you have any other autoimmune diseases or syndromes? if yes list - inflammatory arthritis, sjogrens syndrome 4. do you have a good support system at home? Yes 5. do you suffer from depression as a result of having RP? No 6. what else would you like to see the list supply/ eg: more support, more medical info, more the real us, chating and things, 7. besides the obvious change in yourself directly from the disease, do you feel this has changed you mentally as well as physically and if you how so?Yes, I have become more patient and have learned to trust in God, not rely on myself. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 I had my surgery on 11/18/03. I went today and got the tube out and I feel much better! I have lost 11 pds from my preop visit on 11/13 to today! You would think with as little as I am taking in it would be more but I am cool with it. Here are my questions! I know EVERYONE and EVERY situation is different but it just helps to ask others experiences! Right now and until this coming saturday I am on full liquid diet! Taking in 80 grams of protein a day. 1.) How much weight did you loose the first week? Where you on liquids or just soft foods? 2.) Did you have trouble with diarreah? Im thinking its from being on liquids..Maybe the protein?? 3.) Starting this morning I have a terrible rumbly in my tummy. Kind of like gas but I don't ever pass it. Sounds like thunder in my belly and pretty loud! Anyone experience this? If so how long did it last? 4.) Did you have trouble when people at real foods around you when you couldnt have them? 5.) The first week or 2 how much should we be walking? I have been in pretty much pain till today with the tube so I have gotten in 1/4 mile the last 2 days. Hopefully tomorow I can get more! 6.) I am calling the dr tomorrow but just curious. At what stage can I try milk? just to give me something different to drink.... THANKS IN ADVANCE!! Crystal 11/18/03 365/348/175(some weight lost preop) -17 pds Gone FOREVER!!! Dr Bellanger Vista Surgical Center http://CrystalsWLSJourney.homestead.com/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Hi Crystal, and CONGRATS on the loss!!!!! I saw my doc 2 weeks post-op, and was down 26 lbs-most of that being water weight....after that, I seem to be losing 2-3 lbs. weekly......slow, but a loss is a loss. I am working on getting my protein in...I find it difficult to get 60-80 gms of protein in daily. I still tend to get nauseated, but am really working on the intake. I was on clear liquids for the first 2 weeks until the ok from the doc...2) Yes, I did have diarrhea until my body became adjusted, and it lasted for like 3 weeks. 3) No rumbling, but I noticed that I get a lot of gurgling in my throat after eating. 4) Hubby ate out a few times with me with him, and yes, it was difficult, but it is not forever...just temporarrily....5) take it easy on the exercise...just do what you can and don't push it. When the doc gave me the ok, I joined Curves, and LOVE it!!!!! 6) Get the ok from your doc before you advance your diet. Glad things are going well....keep us posted. I hope this helps?....sherri Questions I had my surgery on 11/18/03. I went today and got the tube out and I feel much better! I have lost 11 pds from my preop visit on 11/13 to today! You would think with as little as I am taking in it would be more but I am cool with it. Here are my questions! I know EVERYONE and EVERY situation is different but it just helps to ask others experiences! Right now and until this coming saturday I am on full liquid diet! Taking in 80 grams of protein a day. 1.) How much weight did you loose the first week? Where you on liquids or just soft foods? 2.) Did you have trouble with diarreah? Im thinking its from being on liquids..Maybe the protein?? 3.) Starting this morning I have a terrible rumbly in my tummy. Kind of like gas but I don't ever pass it. Sounds like thunder in my belly and pretty loud! Anyone experience this? If so how long did it last? 4.) Did you have trouble when people at real foods around you when you couldnt have them? 5.) The first week or 2 how much should we be walking? I have been in pretty much pain till today with the tube so I have gotten in 1/4 mile the last 2 days. Hopefully tomorow I can get more! 6.) I am calling the dr tomorrow but just curious. At what stage can I try milk? just to give me something different to drink.... THANKS IN ADVANCE!! Crystal 11/18/03 365/348/175(some weight lost preop) -17 pds Gone FOREVER!!! Dr Bellanger Vista Surgical Center http://CrystalsWLSJourney.homestead.com/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2003 Report Share Posted November 24, 2003 Crystal I can't recall how much I lost the first week but it was around 15 pounds (alot of that was water I am sure). I was on liquids the first month I was home. When I first came home from the hospital I didn't have a bowel movement for like 10 days. Then I had diarrhea. I still have it occasionally (11 weeks post op). I imagine alot of things cause the diarrhea. Just the changes made to your intestine could cause it. My doctor told me that while I was adjusting/recovering I could expect it to come and go (no pun intended) for up to about 6 months. It does get a bit better when you get on solid foods. The rumbling in the belly is gas and don't worry it WILL pass eventually. Now I have the noise but it passes....frequently!!!) It doesn't bother me when people have food that I can't have. Sometimes when hubby has something that I really shouldn't eat I might try a taste (very small we are talking baby spoon size taste) and usually it doesn't taste good to me. My taste buds have been totally whacked since the surgery. Very little actually tastes good to me these days. You should walk as much as you can. I was able to have milk while I was still in the hospital. I think it was the day after surgery. Candi Questions I had my surgery on 11/18/03. I went today and got the tube out and I feel much better! I have lost 11 pds from my preop visit on 11/13 to today! You would think with as little as I am taking in it would be more but I am cool with it. Here are my questions! I know EVERYONE and EVERY situation is different but it just helps to ask others experiences! Right now and until this coming saturday I am on full liquid diet! Taking in 80 grams of protein a day. 1.) How much weight did you loose the first week? Where you on liquids or just soft foods? 2.) Did you have trouble with diarreah? Im thinking its from being on liquids..Maybe the protein?? 3.) Starting this morning I have a terrible rumbly in my tummy. Kind of like gas but I don't ever pass it. Sounds like thunder in my belly and pretty loud! Anyone experience this? If so how long did it last? 4.) Did you have trouble when people at real foods around you when you couldnt have them? 5.) The first week or 2 how much should we be walking? I have been in pretty much pain till today with the tube so I have gotten in 1/4 mile the last 2 days. Hopefully tomorow I can get more! 6.) I am calling the dr tomorrow but just curious. At what stage can I try milk? just to give me something different to drink.... THANKS IN ADVANCE!! Crystal 11/18/03 365/348/175(some weight lost preop) -17 pds Gone FOREVER!!! Dr Bellanger Vista Surgical Center http://CrystalsWLSJourney.homestead.com/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 hey crystal. my answers are in ///// /////// lori h. > I had my surgery on 11/18/03. I went today and got the tube out and I feel > much better! I have lost 11 pds from my preop visit on 11/13 to today! You would > think with as little as I am taking in it would be more but I am cool with it. > Here are my questions! I know EVERYONE and EVERY situation is different but > it just helps to ask others experiences! > > Right now and until this coming saturday I am on full liquid diet! Taking in > 80 grams of protein a day. > > 1.) How much weight did you loose the first week? Where you on liquids or > just soft foods? /////// 16 lbs in 7 days ///////// > 2.) Did you have trouble with diarreah? Im thinking its from being on > liquids..Maybe the protein?? //////// not initially //////// > 4.) Did you have trouble when people at real foods around you when you > couldnt have them? ////////// nope b/c i wasn't hungry till 5 months out ///////// > 5.) The first week or 2 how much should we be walking? I have been in pretty > much pain till today with the tube so I have gotten in 1/4 mile the last 2 > days. Hopefully tomorow I can get more! ////// @ 2 weeks out i would walk around the mall (s)/////// > THANKS IN ADVANCE!! > Crystal > 11/18/03 > 365/348/175(some weight lost preop) > -17 pds Gone FOREVER!!! > Dr Bellanger > Vista Surgical Center > http://CrystalsWLSJourney.homestead.com/index.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 Hi Crystal, Glad your surgery went well. I got home Friday and have lost the total of 15lbs as of today...I can answer some of your questions as of what the nurse told me before I left the hospital...Hope it helps. 1)I am on full liquids, I can have:low fat yogurt,strained soups,apple juice,crystal lite,flavored uncarbinated water, creamed soups pureed with chicken broth, and instant mashed potatoes made with chicken broth instead of milk, you dont have to add salt 2)yes I had a horrible time with diarreah, it hit me at 5am friday morn, I still have it, I go to the bathroom to pass gas b/c I know i will do other than just pass gas....lol..but the nurse assured me it will get better,,just remember what she told me.. " better comming out than staying in " ...lol 3) yes I have the rumbly in my tummy I can hear it and wonder some times if anyone else can..but again like the nurse said..it will eventually pass 4)At the beginning I had a problem with it, but I surprised my self Sunday, My family had an early Thanksgiving Dinner b/c my dad wasnt going to be home and I did very well. I just made what I could eat and brought it with me, Believe it or not I was not tempted with any of the other stuff cooked. 5)I walk about every 4 hrs around the perimiter of my yard twice. I had my tubes taken out before I came home but I know how frustrating it was to walk with it in the hospital. 6) I am surprised they did not give you milk in the hospital. They started me out on 2tsp of skim milk as soon and I was started on liquids. But every Dr is different, I hated skim milk but I found a really good one at Wal-Mart it is by Dairy fresh, Fat Free Skim Mils Supreme.. it tastes really good. I know that I am as far along as you since we had surgery on the same day..But I just wanted to give you the input my DR and the nurses had shared with me.... 11/18/03 220/205/120? Dr Dyas Providence Hospital Mobile AL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 25, 2003 Report Share Posted November 25, 2003 i am so glad that i am not the only one that tastes buds have changed sine the wls. i do not have a taste for much of anything that i used to i had my surgery on 10-28-03 and i am slowly working my way to more solid foods but nothing appeals to me or at time it will taste good today and tomorrow it wont. and i know that i am not getting in the protien that i should. i hope that this passes soon because i really do not want to get sick and end up back in the hospital. nora post-op 10-28-03 292/263/160 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 post 817 I believe Questions Now that I've gotten my bearings around here, can somebody tell me if there is an archived post anywhere on here that describes the general process Kaiser patients go through when pursuing WLS? I'm in Northern California, if that matters.Tonya Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 1, 2004 Report Share Posted June 1, 2004 Hi Carol, I eat at very least 60 grams of protein a day - often a fair bit more - and I take my vitamins faithfully. Nonetheless, my hair has been falling out for about the last 6 to 8 weeks. I understand your concern with your thin, baby-fine hair - sounds like mine. Baby-fine, board-straight and very thin even before it started falling out. Sigh . .. . I do take comfort in the fact that everyone says that it will grow back. All the best, Kay open RNY 12/1/03 carol colwell wrote: > Kay, > Since you have kept faithful track of your protein intake, I was > wondering if you have lost alot of hair (I worry about this since mine > is thin and baby fine already). > Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Thanks Kay. I bought Nioxin at Costco and will start using the shampoo. Even if it doesn't help, what little hair i will have left will be in great shape (lol). CarolKay wrote: Hi Carol,I eat at very least 60 grams of protein a day - often a fair bit more - and I take my vitamins faithfully. Nonetheless, my hair has been falling out for about the last 6 to 8 weeks. I understand your concern with your thin, baby-fine hair - sounds like mine. Baby-fine, board-straight and very thin even before it started falling out. Sigh . . . I do take comfort in the fact that everyone says that it will grow back.All the best,Kayopen RNY 12/1/03carol colwell wrote:> Kay,> Since you have kept faithful track of your protein intake, I was > wondering if you have lost alot of hair (I worry about this since mine > is thin and baby fine already).> Carol Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2004 Report Share Posted June 2, 2004 Also, check the "Files" section, Tonya. I believe the process was written down by someone (forgive me, I am terrible at remembering names) in great detail. There was a very good entry in the files section. Laurie W. Questions Now that I've gotten my bearings around here, can somebody tell me if there is an archived post anywhere on here that describes the general process Kaiser patients go through when pursuing WLS? I'm in Northern California, if that matters.Tonya Quote Link to comment Share on other sites More sharing options...
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