Guest guest Posted August 26, 2009 Report Share Posted August 26, 2009 I've been reading alot about goals and dreams some of us had prior to diagnosis and figured I would share a few of my new goals and dreams after 31/2 years of a verified diagnosis. The past week has been full of milestones for my family. Friday my son became a teenager (13.) Monday he started his last year of middle school:( As many of you parents know the hard part of parenting has just began for Billy and me. We once wondered if we would get to see this day together. I look forward to what else is to come. Just yesterday I had my Pulmonary Rehab evaluation for my second round. My first round was 2 years ago. Believe it or not, I requested the rx for rehab this time. I start classes tomorrow and have another 8 weeks to follow. I had a goal in mind when I asked for the RX, and I am excited to be on this part of the journey. The ugly truth is I've struggled with my weight for as long as I can remember. Then in 2007 The pulmodude and I decided it was time to give Prednisone and Cellcept a shot. I got even sicker and even fatter. I've only been able to lose 20 of the many many pounds I gained, not to the pounds I already had . I've managed to keep it off for a year but, can't seem to lose any more. Back in March my primary doc suggested gastric banding surgery. I took my time to make a decision. More honestly, I blew the idea off until I was grocery shopping one day in June and found it more difficult thant ever to breath. That very night I went to the Gastric Surgeons seminar then came home and discussed it with ol' hubby. I'm in the process of jumping through hoops for insurance. Between my regular insurance and Medicare we will pay very little out of pocket. We've met deductibles for this year so it may even be less than $100. I started 6 months of dieting monitored by my primary and asked for the rehab rx. I wanted to make sure that my diaphram and chest muscles were prepared for the stress of being on a ventilator during surgery. Right now I'm not a candidate for transplant because of my weight. I understand the risks of surgery as well as the changes I will be making. I still haven't decided if I want a transplant. But, I have decided to lose this weight and open the door of possibility. I want to be the one that says " no. " (Did I mention I'm a control freak?) My surgery should be late November. 34 FL IPF dx 1/06 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 , Thank you for the encouragment. I feel very lucky to have only one child. At 13 he has an " old sole " and understands the gravity of our situation. He handles it much better now than in the begining. The surgery I will be having is gastric banding called " Realize. " I'm not heavy enough to need the bypass surgery. I'm not sure that my lungs could hold out on the ventilator that long either. The banding surgery is only about 30 minutes and done lapriscopicly. It is much less devistating to one's digestive system and overall health. I'll be keeping my fingers crossed for you. There are many of us here who have this battle to fight. 34 FL IPF dx 1/06 > > Hi , > The weight loss is so tough for all of us. We have so many obstacles in our way, medications that can cause weight gain, extreme fatigue, and the inability to breathe and fully exercise like we need too. I can understand your decision for the gastric bypass surgery. Like you, I want the option of a lung transplant and so I have to lose 35 lbs. We all make choices based on our hopes and dreams and I think the more choices we have the more empowered we feel over our disease. > > You are so YOUNG and have many milestones still to reach with your young children; my heart goes out to you. > My children are 29, 23, and 20. My son (23), will start his senior year at Central Washington University and I plan to be at his graduation ceremony June 2010! It must be so tough for your young children to understand the seriousness of your disease too. My youngest daughter will be attending her 2nd year at the community college and I want to see her succeed, but she is struggling a little and has had a tougher time with my disease and has regressed some. > > It's an uphill battle but we have to climbing not knowing what's on the other side. Keep on hoping and dreaming it's what fuels the fire to fight. > > C_53_Familial IPF_5/09 > Washington > > > > > > ________________________________ > > To: Breathe-Support > Sent: Wednesday, August 26, 2009 7:24:16 PM > Subject: New Goals > > > I've been reading alot about goals and dreams some of us had prior to diagnosis and figured I would share a few of my new goals and dreams after 31/2 years of a verified diagnosis. > > The past week has been full of milestones for my family. Friday my son became a teenager (13.) Monday he started his last year of middle school:( As many of you parents know the hard part of parenting has just began for Billy and me. We once wondered if we would get to see this day together. I look forward to what else is to come. > > Just yesterday I had my Pulmonary Rehab evaluation for my second round. My first round was 2 years ago. Believe it or not, I requested the rx for rehab this time. I start classes tomorrow and have another 8 weeks to follow. I had a goal in mind when I asked for the RX, and I am excited to be on this part of the journey. > > The ugly truth is I've struggled with my weight for as long as I can remember. Then in 2007 The pulmodude and I decided it was time to give Prednisone and Cellcept a shot. I got even sicker and even fatter. I've only been able to lose 20 of the many many pounds I gained, not to the pounds I already had . I've managed to keep it off for a year but, can't seem to lose any more. Back in March my primary doc suggested gastric banding surgery. I took my time to make a decision. More honestly, I blew the idea off until I was grocery shopping one day in June and found it more difficult thant ever to breath. That very night I went to the Gastric Surgeons seminar then came home and discussed it with ol' hubby. > > I'm in the process of jumping through hoops for insurance. Between my regular insurance and Medicare we will pay very little out of pocket. We've met deductibles for this year so it may even be less than $100. I started 6 months of dieting monitored by my primary and asked for the rehab rx. I wanted to make sure that my diaphram and chest muscles were prepared for the stress of being on a ventilator during surgery. > > Right now I'm not a candidate for transplant because of my weight. I understand the risks of surgery as well as the changes I will be making. I still haven't decided if I want a transplant. But, I have decided to lose this weight and open the door of possibility. I want to be the one that says " no. " (Did I mention I'm a control freak?) My surgery should be late November. > > 34 FL > IPF dx 1/06 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 , Good for you, I wanted to do the band but my insurance specifically denies any gastric surgery even if it would help other diseases. In other words they would rather pay for all the diabetes and lung stuff instead of helping me lose weight. No wonder I hate insurance. Actually the boss added that addendum to get a cheaper rate but I pay $6000 a year for my part so it sure didn't save us much! Good luck to you! Dyane Phoenix IPF 02 > > I've been reading alot about goals and dreams some of us had prior to diagnosis and figured I would share a few of my new goals and dreams after 31/2 years of a verified diagnosis. > > The past week has been full of milestones for my family. Friday my son became a teenager (13.) Monday he started his last year of middle school:( As many of you parents know the hard part of parenting has just began for Billy and me. We once wondered if we would get to see this day together. I look forward to what else is to come. > > Just yesterday I had my Pulmonary Rehab evaluation for my second round. My first round was 2 years ago. Believe it or not, I requested the rx for rehab this time. I start classes tomorrow and have another 8 weeks to follow. I had a goal in mind when I asked for the RX, and I am excited to be on this part of the journey. > > The ugly truth is I've struggled with my weight for as long as I can remember. Then in 2007 The pulmodude and I decided it was time to give Prednisone and Cellcept a shot. I got even sicker and even fatter. I've only been able to lose 20 of the many many pounds I gained, not to the pounds I already had . I've managed to keep it off for a year but, can't seem to lose any more. Back in March my primary doc suggested gastric banding surgery. I took my time to make a decision. More honestly, I blew the idea off until I was grocery shopping one day in June and found it more difficult thant ever to breath. That very night I went to the Gastric Surgeons seminar then came home and discussed it with ol' hubby. > > I'm in the process of jumping through hoops for insurance. Between my regular insurance and Medicare we will pay very little out of pocket. We've met deductibles for this year so it may even be less than $100. I started 6 months of dieting monitored by my primary and asked for the rehab rx. I wanted to make sure that my diaphram and chest muscles were prepared for the stress of being on a ventilator during surgery. > > Right now I'm not a candidate for transplant because of my weight. I understand the risks of surgery as well as the changes I will be making. I still haven't decided if I want a transplant. But, I have decided to lose this weight and open the door of possibility. I want to be the one that says " no. " (Did I mention I'm a control freak?) My surgery should be late November. > > 34 FL > IPF dx 1/06 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Dyane I hate that insurances are allowed to select certain things not to cover or to cover differently. It use to be mental illnesses were the excluded items. Now generally they are covered, just may not be the same. Now bariatric is the big item excluded. I find it as insulting as well. When I hear them say mental illness or weight aren't covered or are covered differently, what I hear them saying is these are character flaws not illnesses and I resent that greatly. This is why doctors have been so slow to even learn about weight issues, because they just thought everyone should be able to lose when they wanted. I've lived with and loved someone with weight issues (also not covered by her insurance). I've seen the struggle. Myself, I've been through the mental illness part. The doctors just need to admit they still have lots to learn and insurance and the public need to understand these are health issues with many causes. Their traditional thought on weight loss has been disproven many times but they are so slow to realize. I've studied gastric surgery in great detail. With those in the worst class, although it involves risk and life after involves change, it also extends life expectancy by 20 years. That should be enough for them to realize that not getting help is that serious. So I do feel for all of you struggling with weight issues. I consider myself fortunate that low carb diets to work for me and I don't really mind them that much. But, I know I'm just lucky. I know the struggle for many and feel the pain. > > > > I've been reading alot about goals and dreams some of us had prior to > diagnosis and figured I would share a few of my new goals and dreams > after 31/2 years of a verified diagnosis. > > > > The past week has been full of milestones for my family. Friday my son > became a teenager (13.) Monday he started his last year of middle > school:( As many of you parents know the hard part of parenting has just > began for Billy and me. We once wondered if we would get to see this day > together. I look forward to what else is to come. > > > > Just yesterday I had my Pulmonary Rehab evaluation for my second > round. My first round was 2 years ago. Believe it or not, I requested > the rx for rehab this time. I start classes tomorrow and have another 8 > weeks to follow. I had a goal in mind when I asked for the RX, and I am > excited to be on this part of the journey. > > > > The ugly truth is I've struggled with my weight for as long as I can > remember. Then in 2007 The pulmodude and I decided it was time to give > Prednisone and Cellcept a shot. I got even sicker and even fatter. I've > only been able to lose 20 of the many many pounds I gained, not to the > pounds I already had . I've managed to keep it off for a year but, > can't seem to lose any more. Back in March my primary doc suggested > gastric banding surgery. I took my time to make a decision. More > honestly, I blew the idea off until I was grocery shopping one day in > June and found it more difficult thant ever to breath. That very night I > went to the Gastric Surgeons seminar then came home and discussed it > with ol' hubby. > > > > I'm in the process of jumping through hoops for insurance. Between my > regular insurance and Medicare we will pay very little out of pocket. > We've met deductibles for this year so it may even be less than $100. I > started 6 months of dieting monitored by my primary and asked for the > rehab rx. I wanted to make sure that my diaphram and chest muscles were > prepared for the stress of being on a ventilator during surgery. > > > > Right now I'm not a candidate for transplant because of my weight. I > understand the risks of surgery as well as the changes I will be making. > I still haven't decided if I want a transplant. But, I have decided to > lose this weight and open the door of possibility. I want to be the one > that says " no. " (Did I mention I'm a control freak?) My surgery should > be late November. > > > > 34 FL > > IPF dx 1/06 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Thank you Bruce, that means a lot. Dyane > > > > > > I've been reading alot about goals and dreams some of us had prior > to > > diagnosis and figured I would share a few of my new goals and dreams > > after 31/2 years of a verified diagnosis. > > > > > > The past week has been full of milestones for my family. Friday my > son > > became a teenager (13.) Monday he started his last year of middle > > school:( As many of you parents know the hard part of parenting has > just > > began for Billy and me. We once wondered if we would get to see this > day > > together. I look forward to what else is to come. > > > > > > Just yesterday I had my Pulmonary Rehab evaluation for my second > > round. My first round was 2 years ago. Believe it or not, I requested > > the rx for rehab this time. I start classes tomorrow and have another > 8 > > weeks to follow. I had a goal in mind when I asked for the RX, and I > am > > excited to be on this part of the journey. > > > > > > The ugly truth is I've struggled with my weight for as long as I can > > remember. Then in 2007 The pulmodude and I decided it was time to give > > Prednisone and Cellcept a shot. I got even sicker and even fatter. > I've > > only been able to lose 20 of the many many pounds I gained, not to the > > pounds I already had . I've managed to keep it off for a year but, > > can't seem to lose any more. Back in March my primary doc suggested > > gastric banding surgery. I took my time to make a decision. More > > honestly, I blew the idea off until I was grocery shopping one day in > > June and found it more difficult thant ever to breath. That very night > I > > went to the Gastric Surgeons seminar then came home and discussed it > > with ol' hubby. > > > > > > I'm in the process of jumping through hoops for insurance. Between > my > > regular insurance and Medicare we will pay very little out of pocket. > > We've met deductibles for this year so it may even be less than $100. > I > > started 6 months of dieting monitored by my primary and asked for the > > rehab rx. I wanted to make sure that my diaphram and chest muscles > were > > prepared for the stress of being on a ventilator during surgery. > > > > > > Right now I'm not a candidate for transplant because of my weight. I > > understand the risks of surgery as well as the changes I will be > making. > > I still haven't decided if I want a transplant. But, I have decided to > > lose this weight and open the door of possibility. I want to be the > one > > that says " no. " (Did I mention I'm a control freak?) My surgery should > > be late November. > > > > > > 34 FL > > > IPF dx 1/06 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 27, 2009 Report Share Posted August 27, 2009 Here is what I find ironic. Group Health now covers surgery for a Tummy-Tuck! If you are disproportionately figured, meaning most of your weight is in the belly and you experience back pain. But to qualify for gastric surgery you have to be 50 lbs overweight. C_53_Familial IPF_5/09WashingtonTo: Breathe-Support Sent: Thursday, August 27, 2009 9:34:23 AMSubject: Re: New Goals Dyane I hate that insurances are allowed to select certain things not to cover or to cover differently. It use to be mental illnesses were the excluded items. Now generally they are covered, just may not be the same. Now bariatric is the big item excluded. I find it as insulting as well. When I hear them say mental illness or weight aren't covered or are covered differently, what I hear them saying is these are character flaws not illnesses and I resent that greatly. This is why doctors have been so slow to even learn about weight issues, because they just thought everyone should be able to lose when they wanted. I've lived with and loved someone with weight issues (also not covered by her insurance). I've seen the struggle. Myself, I've been through the mental illness part. The doctors just need to admit they still have lots to learn and insurance and the public need to understand these are health issues with many causes. Their traditional thought on weight loss has been disproven many times but they are so slow to realize. I've studied gastric surgery in great detail. With those in the worst class, although it involves risk and life after involves change, it also extends life expectancy by 20 years. That should be enough for them to realize that not getting help is that serious. So I do feel for all of you struggling with weight issues. I consider myself fortunate that low carb diets to work for me and I don't really mind them that much. But, I know I'm just lucky. I know the struggle for many and feel the pain. > > > > I've been reading alot about goals and dreams some of us had prior to > diagnosis and figured I would share a few of my new goals and dreams > after 31/2 years of a verified diagnosis. > > > > The past week has been full of milestones for my family. Friday my son > became a teenager (13.) Monday he started his last year of middle > school:( As many of you parents know the hard part of parenting has just > began for Billy and me. We once wondered if we would get to see this day > together. I look forward to what else is to come. > > > > Just yesterday I had my Pulmonary Rehab evaluation for my second > round. My first round was 2 years ago. Believe it or not, I requested > the rx for rehab this time. I start classes tomorrow and have another 8 > weeks to follow. I had a goal in mind when I asked for the RX, and I am > excited to be on this part of the journey. > > > > The ugly truth is I've struggled with my weight for as long as I can > remember. Then in 2007 The pulmodude and I decided it was time to give > Prednisone and Cellcept a shot. I got even sicker and even fatter. I've > only been able to lose 20 of the many many pounds I gained, not to the > pounds I already had . I've managed to keep it off for a year but, > can't seem to lose any more. Back in March my primary doc suggested > gastric banding surgery. I took my time to make a decision. More > honestly, I blew the idea off until I was grocery shopping one day in > June and found it more difficult thant ever to breath. That very night I > went to the Gastric Surgeons seminar then came home and discussed it > with ol' hubby. > > > > I'm in the process of jumping through hoops for insurance. Between my > regular insurance and Medicare we will pay very little out of pocket. > We've met deductibles for this year so it may even be less than $100. I > started 6 months of dieting monitored by my primary and asked for the > rehab rx. I wanted to make sure that my diaphram and chest muscles were > prepared for the stress of being on a ventilator during surgery. > > > > Right now I'm not a candidate for transplant because of my weight. I > understand the risks of surgery as well as the changes I will be making. > I still haven't decided if I want a transplant. But, I have decided to > lose this weight and open the door of possibility. I want to be the one > that says "no." (Did I mention I'm a control freak?) My surgery should > be late November. > > > > 34 FL > > IPF dx 1/06 > > > Quote Link to comment Share on other sites More sharing options...
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