Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Welcome, Amber. I think you will get lots of ideas here on what to do to jump start your weight loss again. How tall are you? Keep in mind that " normal " weight charts don't really work for us post-ops. We generally weigh more " than we should " according to the charts, but yet wear smaller sizes than we should as well. The most important measure should be how you feel, not the numbers on the scale, but that is easier said than done, as almost all of us have that magic number in mind. I hit a low of 146, I'm back up to 161, and want to get back down to 150. But for the most part I don't sweat it...as long as I'm feeling good. Sounds like you are doing all the right things. I will be interested in hearing the feedback you get from other members. How much exercise are you getting in, and what type? KC << I would really appreicate some help. I have posted to other boards and seem to get little to know response or support. I hope things are different here!! Thanks to all of you! Amber Cook>> Homepage: http://groups.yahoo.com/group/Graduate-OSSG Unsubscribe: mailto:Graduate-OSSG-unsubscribe Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Amber, Are you weight training? Cardio excercise is great but weight training helps build lean muscles mass. Muscles may weigh more than fat, but they also burn more calories than fat. So build more muscle and burn more calories while you watch tv :-) KathyM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Amber, Are you weight training? Cardio excercise is great but weight training helps build lean muscles mass. Muscles may weigh more than fat, but they also burn more calories than fat. So build more muscle and burn more calories while you watch tv :-) KathyM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Amber, I may be wrong, but having had the RNY, shouldn't you be getting in more than 60 grams of protein? I know that 50 to 65 grams of protein is what a normal woman should get but if you have any malabsorption, it may need to be double. Just a thought. Lori Owen - Denton, Texas CHF 4/14/01 479 lbs. SRVG 7/16/01 401 lbs. Current Weight 339.5 lbs. and loosing again Dr. Ritter/Dr. Bryce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Amber, I may be wrong, but having had the RNY, shouldn't you be getting in more than 60 grams of protein? I know that 50 to 65 grams of protein is what a normal woman should get but if you have any malabsorption, it may need to be double. Just a thought. Lori Owen - Denton, Texas CHF 4/14/01 479 lbs. SRVG 7/16/01 401 lbs. Current Weight 339.5 lbs. and loosing again Dr. Ritter/Dr. Bryce Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hi! I don't have any concrete suggestions on how to get the rest of your weight off, but I have a comment for Amber and anyone else who is experience this type of problem: If you're having trouble getting the weight off, please, please, PLEASE don't assume it necessarily means that YOU are doing something " wrong. " Don't assume this is somehow your " fault. " From what I've seen...and based on my own experience...there's not always a clearcut logical reason why some people lose faster or more easily than others or why some people lose a bigger percentage of their excess weight with less of a struggle than others. Different people's bodies seem to respond differently to these surgeries...some of our bodies seem to be pretty cooperative about letting go of the excess pounds while others seem to fight tooth and nail to hang on to every ounce. And people who have the second kind of body are going to have more of a struggle than people who have the first kind. Fair? Hell no, it's not fair. Not fair at all, damn it. But I've seen these things happen over and over...where, for no apparent reason, person A will drop all their weight seemingly without really trying where person B will struggle to get to goal. If you're person B, there may be things that could help you, and this group is a great place to get suggestions. I'm sure many people here will have helpful ideas. Take whatever you can use -- I hope that it all works for you REALLY well. And if it does, you can feel tremendously proud of your accomplishements, knowing that you had to really work to get there. :oD But if (just *if*) the suggestions you get don't produce exactly the results you'd like to get, please don't blame yourself, or beat up on yourself, or call yourself a failure, or assume it means you've been " bad " . Sometimes we do cause problems for ourselves by making bad food choices and whatnot. (And I think we all know when we are doing that, lol--we don't need anybody, not even the scale, to tell us that.) But other times, we make all the right choices, and it still doesn't happen...or it happens a lot more slowly than it seems like it should. And when that happens...that we're making the right choices and the weight still isn't coming off the way we'd like to...it's time to be patient and gentle with ourselves, not tell ourselves it has to be all our fault, the way I have seen people do at times. ) I just felt a need to say that, because every time I turn around I see people who are not losing as much as they'd like blaming themselves, always assuming that if they're not reaching their goal, it means THEY must be doing something wrong. In my experience, that's just not always the case. Sometimes these things just seem to happen. So...to anyone experiencing something like this, I say: please don't automatically blame yourself or assume you must be messing up and causing it to happen. *gets off soapbox* Thanks for listening. Sharon > Hey!! My name is Amber Cook. I'm new here. Tomorrow is my 2 year > anniversary. My starting weight was 319 on 2-27-01 when i had an > Open RNY with Dr. Coster in Grinnell, Ia. On 6-7-02 I had a panni > done by the same Dr. and weighed 179. i'm currently stuck between > 178-183. I'm fighting for the last 30 pounds to come off. My goal > or may 8th (my 22nd birthday) is to be 155lbs. > I have upped my protein, exercise, and water. that didn't help. so > i've gown down on my protein keeping it at 60g a day. still > nothing. What am i doing wrong guys? Can someone please tell me > what is going on with me? > > Thanks to all of you! > Amber Cook Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hi! I don't have any concrete suggestions on how to get the rest of your weight off, but I have a comment for Amber and anyone else who is experience this type of problem: If you're having trouble getting the weight off, please, please, PLEASE don't assume it necessarily means that YOU are doing something " wrong. " Don't assume this is somehow your " fault. " From what I've seen...and based on my own experience...there's not always a clearcut logical reason why some people lose faster or more easily than others or why some people lose a bigger percentage of their excess weight with less of a struggle than others. Different people's bodies seem to respond differently to these surgeries...some of our bodies seem to be pretty cooperative about letting go of the excess pounds while others seem to fight tooth and nail to hang on to every ounce. And people who have the second kind of body are going to have more of a struggle than people who have the first kind. Fair? Hell no, it's not fair. Not fair at all, damn it. But I've seen these things happen over and over...where, for no apparent reason, person A will drop all their weight seemingly without really trying where person B will struggle to get to goal. If you're person B, there may be things that could help you, and this group is a great place to get suggestions. I'm sure many people here will have helpful ideas. Take whatever you can use -- I hope that it all works for you REALLY well. And if it does, you can feel tremendously proud of your accomplishements, knowing that you had to really work to get there. :oD But if (just *if*) the suggestions you get don't produce exactly the results you'd like to get, please don't blame yourself, or beat up on yourself, or call yourself a failure, or assume it means you've been " bad " . Sometimes we do cause problems for ourselves by making bad food choices and whatnot. (And I think we all know when we are doing that, lol--we don't need anybody, not even the scale, to tell us that.) But other times, we make all the right choices, and it still doesn't happen...or it happens a lot more slowly than it seems like it should. And when that happens...that we're making the right choices and the weight still isn't coming off the way we'd like to...it's time to be patient and gentle with ourselves, not tell ourselves it has to be all our fault, the way I have seen people do at times. ) I just felt a need to say that, because every time I turn around I see people who are not losing as much as they'd like blaming themselves, always assuming that if they're not reaching their goal, it means THEY must be doing something wrong. In my experience, that's just not always the case. Sometimes these things just seem to happen. So...to anyone experiencing something like this, I say: please don't automatically blame yourself or assume you must be messing up and causing it to happen. *gets off soapbox* Thanks for listening. Sharon > Hey!! My name is Amber Cook. I'm new here. Tomorrow is my 2 year > anniversary. My starting weight was 319 on 2-27-01 when i had an > Open RNY with Dr. Coster in Grinnell, Ia. On 6-7-02 I had a panni > done by the same Dr. and weighed 179. i'm currently stuck between > 178-183. I'm fighting for the last 30 pounds to come off. My goal > or may 8th (my 22nd birthday) is to be 155lbs. > I have upped my protein, exercise, and water. that didn't help. so > i've gown down on my protein keeping it at 60g a day. still > nothing. What am i doing wrong guys? Can someone please tell me > what is going on with me? > > Thanks to all of you! > Amber Cook Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Yeah! Sharon for President! Well said! Thank you for putting that so humanely. I totally agree that many of us (not me! ) blame ourselves unnecessarily. . Jo in Yukon Re: New here > Hi! I don't have any concrete suggestions on how to get the rest of > your weight off, but I have a comment for Amber and anyone else who > is experience this type of problem: > > If you're having trouble getting the weight off, please, please, > PLEASE don't assume it necessarily means that YOU are doing > something " wrong. " Don't assume this is somehow your " fault. " From > what I've seen...and based on my own experience...there's not always > a clearcut logical reason why some people lose faster or more easily > than others or why some people lose a bigger percentage of their > excess weight with less of a struggle than others. Different people's > bodies seem to respond differently to these surgeries...some of our > bodies seem to be pretty cooperative about letting go of the excess > pounds while others seem to fight tooth and nail to hang on to every > ounce. And people who have the second kind of body are going to have > more of a struggle than people who have the first kind. > > Fair? Hell no, it's not fair. Not fair at all, damn it. But I've seen > these things happen over and over...where, for no apparent reason, > person A will drop all their weight seemingly without really trying > where person B will struggle to get to goal. > > If you're person B, there may be things that could help you, and this > group is a great place to get suggestions. I'm sure many people here > will have helpful ideas. Take whatever you can use -- I hope that it > all works for you REALLY well. And if it does, you can feel > tremendously proud of your accomplishements, knowing that you had to > really work to get there. :oD > > But if (just *if*) the suggestions you get don't produce exactly the > results you'd like to get, please don't blame yourself, or beat up on > yourself, or call yourself a failure, or assume it means you've > been " bad " . Sometimes we do cause problems for ourselves by making > bad food choices and whatnot. (And I think we all know when we are > doing that, lol--we don't need anybody, not even the scale, to tell > us that.) But other times, we make all the right choices, and it > still doesn't happen...or it happens a lot more slowly than it seems > like it should. And when that happens...that we're making the right > choices and the weight still isn't coming off the way we'd like > to...it's time to be patient and gentle with ourselves, not tell > ourselves it has to be all our fault, the way I have seen people do > at times. ) > > I just felt a need to say that, because every time I turn around I > see people who are not losing as much as they'd like blaming > themselves, always assuming that if they're not reaching their goal, > it means THEY must be doing something wrong. In my experience, that's > just not always the case. Sometimes these things just seem to happen. > So...to anyone experiencing something like this, I say: please don't > automatically blame yourself or assume you must be messing up and > causing it to happen. > > *gets off soapbox* Thanks for listening. > > Sharon > > > > Hey!! My name is Amber Cook. I'm new here. Tomorrow is my 2 year > > anniversary. My starting weight was 319 on 2-27-01 when i had an > > Open RNY with Dr. Coster in Grinnell, Ia. On 6-7-02 I had a panni > > done by the same Dr. and weighed 179. i'm currently stuck between > > 178-183. I'm fighting for the last 30 pounds to come off. My goal > > or may 8th (my 22nd birthday) is to be 155lbs. > > I have upped my protein, exercise, and water. that didn't help. so > > i've gown down on my protein keeping it at 60g a day. still > > nothing. What am i doing wrong guys? Can someone please tell me > > what is going on with me? > > > > Thanks to all of you! > > Amber Cook > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Yeah! Sharon for President! Well said! Thank you for putting that so humanely. I totally agree that many of us (not me! ) blame ourselves unnecessarily. . Jo in Yukon Re: New here > Hi! I don't have any concrete suggestions on how to get the rest of > your weight off, but I have a comment for Amber and anyone else who > is experience this type of problem: > > If you're having trouble getting the weight off, please, please, > PLEASE don't assume it necessarily means that YOU are doing > something " wrong. " Don't assume this is somehow your " fault. " From > what I've seen...and based on my own experience...there's not always > a clearcut logical reason why some people lose faster or more easily > than others or why some people lose a bigger percentage of their > excess weight with less of a struggle than others. Different people's > bodies seem to respond differently to these surgeries...some of our > bodies seem to be pretty cooperative about letting go of the excess > pounds while others seem to fight tooth and nail to hang on to every > ounce. And people who have the second kind of body are going to have > more of a struggle than people who have the first kind. > > Fair? Hell no, it's not fair. Not fair at all, damn it. But I've seen > these things happen over and over...where, for no apparent reason, > person A will drop all their weight seemingly without really trying > where person B will struggle to get to goal. > > If you're person B, there may be things that could help you, and this > group is a great place to get suggestions. I'm sure many people here > will have helpful ideas. Take whatever you can use -- I hope that it > all works for you REALLY well. And if it does, you can feel > tremendously proud of your accomplishements, knowing that you had to > really work to get there. :oD > > But if (just *if*) the suggestions you get don't produce exactly the > results you'd like to get, please don't blame yourself, or beat up on > yourself, or call yourself a failure, or assume it means you've > been " bad " . Sometimes we do cause problems for ourselves by making > bad food choices and whatnot. (And I think we all know when we are > doing that, lol--we don't need anybody, not even the scale, to tell > us that.) But other times, we make all the right choices, and it > still doesn't happen...or it happens a lot more slowly than it seems > like it should. And when that happens...that we're making the right > choices and the weight still isn't coming off the way we'd like > to...it's time to be patient and gentle with ourselves, not tell > ourselves it has to be all our fault, the way I have seen people do > at times. ) > > I just felt a need to say that, because every time I turn around I > see people who are not losing as much as they'd like blaming > themselves, always assuming that if they're not reaching their goal, > it means THEY must be doing something wrong. In my experience, that's > just not always the case. Sometimes these things just seem to happen. > So...to anyone experiencing something like this, I say: please don't > automatically blame yourself or assume you must be messing up and > causing it to happen. > > *gets off soapbox* Thanks for listening. > > Sharon > > > > Hey!! My name is Amber Cook. I'm new here. Tomorrow is my 2 year > > anniversary. My starting weight was 319 on 2-27-01 when i had an > > Open RNY with Dr. Coster in Grinnell, Ia. On 6-7-02 I had a panni > > done by the same Dr. and weighed 179. i'm currently stuck between > > 178-183. I'm fighting for the last 30 pounds to come off. My goal > > or may 8th (my 22nd birthday) is to be 155lbs. > > I have upped my protein, exercise, and water. that didn't help. so > > i've gown down on my protein keeping it at 60g a day. still > > nothing. What am i doing wrong guys? Can someone please tell me > > what is going on with me? > > > > Thanks to all of you! > > Amber Cook > > > Homepage: http://groups.yahoo.com/group/Graduate-OSSG > > Unsubscribe: mailto:Graduate-OSSG-unsubscribe > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Sharon= Great posts. Thanks. Fay Bayuk 300/175 10/23/01 Dr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Sharon= Great posts. Thanks. Fay Bayuk 300/175 10/23/01 Dr Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 <<What am i doing wrong guys? Can someone please tell me what is going on with me?>> Amber, you're not doing anything " wrong. " I think everyone hits a plateau at some point, and may stay there for several months. Some hit it at 18 months, some later, some not at all! When I was 22 months out, I went thru the police academy...That's like boot camp, where they let you go home to sleep at night. I was running 3 miles a day, lifting weights, doing martial arts training...and I graduated from the academy at 172 lbs. I was HORRIFIED! You'd have thought I'd have lost down to below goal with all that exercise. NOT. BUT, within 3 months of getting out of the academy, I had started losing again, and got down to 135...much to thin for me, at 5'10 " . Then, I gained some...And I didn't panic. I just watched what I was eating (very difficult as a police officer, with no regular eating schedule and on 12 hour shifts at night, when the only place open to eat was Dunkin' Donuts. I became a rolling grocery store, with things that were good for me.) I stabilized at 145-150 (my weight can fluctuate as much as 5 lbs a day), and have stayed there for the last 18 years. My doctor explained to me that everyone's body has a set point weight, and it can take time for it to readjust. Mine was at 170, and it took 6 months for that to change. Be patient, be careful about what you eat (and how you eat it), and keep exercising...You'll get there! Jac mailto:jholdaway@... before and after pictures at: http://hometown.aol.com/jrandjrholdaway http://www.pictureitdigitaldesigns.com/ http://members.cox.net/xxxfarmpaints Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2003 Report Share Posted February 27, 2003 <<What am i doing wrong guys? Can someone please tell me what is going on with me?>> Amber, you're not doing anything " wrong. " I think everyone hits a plateau at some point, and may stay there for several months. Some hit it at 18 months, some later, some not at all! When I was 22 months out, I went thru the police academy...That's like boot camp, where they let you go home to sleep at night. I was running 3 miles a day, lifting weights, doing martial arts training...and I graduated from the academy at 172 lbs. I was HORRIFIED! You'd have thought I'd have lost down to below goal with all that exercise. NOT. BUT, within 3 months of getting out of the academy, I had started losing again, and got down to 135...much to thin for me, at 5'10 " . Then, I gained some...And I didn't panic. I just watched what I was eating (very difficult as a police officer, with no regular eating schedule and on 12 hour shifts at night, when the only place open to eat was Dunkin' Donuts. I became a rolling grocery store, with things that were good for me.) I stabilized at 145-150 (my weight can fluctuate as much as 5 lbs a day), and have stayed there for the last 18 years. My doctor explained to me that everyone's body has a set point weight, and it can take time for it to readjust. Mine was at 170, and it took 6 months for that to change. Be patient, be careful about what you eat (and how you eat it), and keep exercising...You'll get there! Jac mailto:jholdaway@... before and after pictures at: http://hometown.aol.com/jrandjrholdaway http://www.pictureitdigitaldesigns.com/ http://members.cox.net/xxxfarmpaints Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 Welcome to the list. I am glad they were able to determine the cause of the problems with your son. I have a 3 year old daughter with CF, and an 8 year old son wocf. Paige, my daughter, cultures MRSA and has cultured PA but is not culturing PA at this time. Generally, she is of excellent health. Occasionally the MRSA gains strength and we have to put her on oral antibiotics. But she feels great...most of the time. No one could even tell she was ill. Hang in there....Please write anytime. mom to KM 8 wocf, and Paige 3wcf, and author of " Juggling Cystic Fibrosis. A Health Journal " new here Hi. I'm new. I'm 6 yr old son was just diagnosed with cf last week, after 6 years of me trying to tell the docs that I thought it wasn't asthma and I wanted more tests. Finally with the help of the internet I figured out it was cf and got him to see the pulmonologist and got a sweat test (four scores ranged from 111-122 ish). He is pancreatic insufficient and has already cultured staph and pseudomonas. I'm hoping with the creon and stuff that he feels better.. he's been so sick for soooo long and on every asthma medication in the world. The cf meds are actually easier to deal with than all the asthma junk that wasn't working. I'm really hoping he starts to feel better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 Birch - Sorry to hear about the diagnosis. Our daughter was also DXed late 3.5 years old. I went round and round with her peds. Did he have rectal prolapse at all? That was our biggest trigger. Hang in there. We arte all here to support you! Kathy G. Mom to 8 w/ CF new here > Hi. I'm new. I'm 6 yr old son was just diagnosed with cf last week, > after 6 years of me trying to tell the docs that I thought it wasn't > asthma and I wanted more tests. Finally with the help of the > internet I figured out it was cf and got him to see the pulmonologist > and got a sweat test (four scores ranged from 111-122 ish). He is > pancreatic insufficient and has already cultured staph and > pseudomonas. I'm hoping with the creon and stuff that he feels > better.. he's been so sick for soooo long and on every asthma > medication in the world. The cf meds are actually easier to deal > with than all the asthma junk that wasn't working. I'm really > hoping he starts to feel better. > > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 27, 2003 Report Share Posted March 27, 2003 Welcome to the list! Could you tell us your name and your son's? We are sorry to hear he has CF but it is best to have him diagnosed and treated properly. Hopefully he will start getting better soon. take care, M Mom of age 19 wcf and Nick age almost 21 without new here > Hi. I'm new. I'm 6 yr old son was just diagnosed with cf last week, > after 6 years of me trying to tell the docs that I thought it wasn't > asthma and I wanted more tests. Finally with the help of the > internet I figured out it was cf and got him to see the pulmonologist > and got a sweat test (four scores ranged from 111-122 ish). He is > pancreatic insufficient and has already cultured staph and > pseudomonas. I'm hoping with the creon and stuff that he feels > better.. he's been so sick for soooo long and on every asthma > medication in the world. The cf meds are actually easier to deal > with than all the asthma junk that wasn't working. I'm really > hoping he starts to feel better. > > > > > > ------------------------------------------- > The opinions and information exchanged on this list should IN NO WAY > be construed as medical advice. > > PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS. > > ------------------------------------ > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 I am so sorry to hear of your long struggle for a correct diagnosis. My son was diagnosed at 1 year but that was a very long year. My heart goes out to you and your son for having to endure so much. I hope his health rapidly improves!! Sara - mommy of Zach 1 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 thanks for all your kind words. To answer some of your questions.. we are in Arizona, and no we've never had a prolapse (i'm really dreading that... my son (Iain) is definitely at an easily freaked out age). I have another question... what is a " clean out " .. .I've heard this referred to many times, but I don't really understand all the detail of what is involved and what the experience is like for the child. > I am so sorry to hear of your long struggle for a correct > diagnosis. My son was diagnosed at 1 year but that was a very long > year. My heart goes out to you and your son for having to endure so > much. I hope his health rapidly improves!! > Sara - mommy of Zach 1 wcf Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 28, 2003 Report Share Posted March 28, 2003 Hope your son is feeling better soon. We are in almost the same situation. My daughter is 6 yrs. old also. She has been very sick ever since birth. The doctors would argue with me that it was just asthma & allergies. Through persistance we kept changing doctors and adding new ones til we found out just this past Sept. that she had CF. The best thing that has happened to her since the diagnosis is the Vest Therapy Machine. This keeps all that mucus broke up and helps prevent pnemonia. It has been like a life saver for my husband and I. I would love to talk with you more. You can e-mail me at draftermom@... Good Luck! > Hi. I'm new. I'm 6 yr old son was just diagnosed with cf last week, > after 6 years of me trying to tell the docs that I thought it wasn't > asthma and I wanted more tests. Finally with the help of the > internet I figured out it was cf and got him to see the pulmonologist > and got a sweat test (four scores ranged from 111-122 ish). He is > pancreatic insufficient and has already cultured staph and > pseudomonas. I'm hoping with the creon and stuff that he feels > better.. he's been so sick for soooo long and on every asthma > medication in the world. The cf meds are actually easier to deal > with than all the asthma junk that wasn't working. I'm really > hoping he starts to feel better. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 29, 2003 Report Share Posted March 29, 2003 Hello, Welcome to our list. I'm so sorry it's taken so long for your son to be diagnosed. It's frustrating when all the signs are there and no one has a clue. Now that you know though, your son can get the help he needs. I hope he is doing better and is now with a good cf center. That is so important. You'll find lots of support and advice here whenever you need it. hugs, C Mommy to Mick and Alli, 3 yo twins wcf --- birchnymph wrote: > Hi. I'm new. I'm 6 yr old son was just diagnosed > with cf last week, > after 6 years of me trying to tell the docs that I > thought it wasn't > asthma and I wanted more tests. Finally with the > help of the > internet I figured out it was cf and got him to see > the pulmonologist > and got a sweat test (four scores ranged from > 111-122 ish). He is > pancreatic insufficient and has already cultured > staph and > pseudomonas. I'm hoping with the creon and stuff > that he feels > better.. he's been so sick for soooo long and on > every asthma > medication in the world. The cf meds are actually > easier to deal > with than all the asthma junk that wasn't working. > I'm really > hoping he starts to feel better. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi---i just wanted to introduce myself. My anme is CIndy. I am an RN and live in VA. I am mother to 2 year old Makenzie. SHe was born with a rare intestinal illness and had all of her intestines remove at 4 weeks old. She lived on TPN for 16 months and then had a rare small bowel transplant in Pittsburgh in April and is mostly doing well. I have always struggled with my weight but have reached an all time high of 300 pounds while we literally lived in the hospital for the last two years. My gastric bypass is scheduled for Feb 16th and im a little freaked out about it. It will be done open as that is the only way the surgeon here will do it. Can someone give me an estimate how long it is going to take until I am able to care for my daughter completely--I am a single mom to her and her care is still complicated--port a cath--Iv meds--etc and all the while looking completely healthy and running wild like any two year old. What other things can i start working on now in this last six weeks to make everything easier? I have met with a dietician but havent exactly gotten a clear picture. The surgeon is one I have worked with for years--so i didnt have to do the normal waiting period--my first visit with him was 2 weeks ago and now surgery is right around the corner----help???!!!---CIndy in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Hi---i just wanted to introduce myself. My anme is CIndy. I am an RN and live in VA. I am mother to 2 year old Makenzie. SHe was born with a rare intestinal illness and had all of her intestines remove at 4 weeks old. She lived on TPN for 16 months and then had a rare small bowel transplant in Pittsburgh in April and is mostly doing well. I have always struggled with my weight but have reached an all time high of 300 pounds while we literally lived in the hospital for the last two years. My gastric bypass is scheduled for Feb 16th and im a little freaked out about it. It will be done open as that is the only way the surgeon here will do it. Can someone give me an estimate how long it is going to take until I am able to care for my daughter completely--I am a single mom to her and her care is still complicated--port a cath--Iv meds--etc and all the while looking completely healthy and running wild like any two year old. What other things can i start working on now in this last six weeks to make everything easier? I have met with a dietician but havent exactly gotten a clear picture. The surgeon is one I have worked with for years--so i didnt have to do the normal waiting period--my first visit with him was 2 weeks ago and now surgery is right around the corner----help???!!!---CIndy in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Thanks Joan--I am hiring out a nurse to stay with Makenzie the first week while Im inpatient--then my sister is coming from Montana for 10 days--after that my mom iwll stay for about a month---but Makenzie isnt old enough to understand. Ill have to pick up the medical part from the day i get home--but there isnt much i cant show someone how to do as long as i am here. I have to say--alot of my fear--well before Makenzie was born I worked in a surgical ICU and took care of gastric bypass patients--of course the only ones we got were the ones where something went wrong. So that is my fear--if something happens to me--what would ever become of Makenzie---i am more than willing to make the dedication to doing this the rest of my life---just scared of the actual surgical part----CIndy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Thanks Joan--I am hiring out a nurse to stay with Makenzie the first week while Im inpatient--then my sister is coming from Montana for 10 days--after that my mom iwll stay for about a month---but Makenzie isnt old enough to understand. Ill have to pick up the medical part from the day i get home--but there isnt much i cant show someone how to do as long as i am here. I have to say--alot of my fear--well before Makenzie was born I worked in a surgical ICU and took care of gastric bypass patients--of course the only ones we got were the ones where something went wrong. So that is my fear--if something happens to me--what would ever become of Makenzie---i am more than willing to make the dedication to doing this the rest of my life---just scared of the actual surgical part----CIndy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2004 Report Share Posted January 1, 2004 Cindy, mine was laparscopic, so others will have to fill you in on that part, and recuperation. The best thing I did for myself prior to surgery was having all the foods I'd need purchases, including vitamins, etc. I put them all in one place, so when I needed to eat, there they were. My dietician gave me a list of what to eat each week for 6 weeks. I'd give them to you, but what I'm noticing on here is every doctor is so different in what they think you should eat, and what kinds of vitamins. You certainly have your work cut out for you, being a single mom, having a young child that needs lots of time, and working too. Do you have help in place for while you are in the hospital, and when you get home? Seems many " open " patients advise a recliner. I'll wait to see what others come up with. Joan LAP RNY 11/18/03 Dr. Higa, Fresno, CA 282pre-op/275surg/240/140 Quote Link to comment Share on other sites More sharing options...
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