Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Arrianne, You are the first one that I have heard mention gastric bypass on this site. Before I knew I had PH, my first diagnosis before COPD and PF, I was visiting my old gp monthly in preparation for a gastric loop. I had started gaining weight when I could no longer exercise due to SOB. They kept telling me to lose weight but I couldn't. I could fast just fine but the body went into starvation mode and slowed the matabolism, no weight loss. If I reduced my calories, still being unable to exercise due to the SOB got me no where... When I did get to pulmonary rehab where I had high levels of oxygen in the hospital, I was able to exercise and lose weight. My pulmonologist and Mayo decided I could not tolerate the loop surgery in order to get to the point of the heart lung transplant I would need and the disease would get me before I could lose it at the rate I could lose it through diet and exercise alone. I feel guilty for gaining the weight and angry that the gp never looked far enough to find the PH and get me treatment earlier. My friend who insisted I go to Mayo was even willing to donate a lung but we didn't match and I needed more and it was too complicated to go on with. If you don't mind my curiosity, how much weight did you need to lose, how long did it take and how old are you? I am only 62, my mom died in her 70's and my dad in his 90's. I have an only daughter and three grand children that I would like to be around for at least another ten years. I am their Grammie Goose. I started writing children's books for them when the first one was born seven years ago. I have already lived longer than the first prediction for people after their diagnosis for PH. I am just trying to get information from people who are in more similar circumstances as I. Please tell me your story. Margaret Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Margaret, I'm glad I saw this post. I am also having a horrible time losing weight. I was already overweight before unsuccesfully trying prednisone and cellcept.After coming off them I was able to lose 30 lbs. I've gained 10 of it back after a crazy, stressfull summer. I'm just now getting back on track. I'm trying to stay as active as possible. I have another 21 lbs to lose before Mayo will even start testing me for transplant eligibility. Once I've met that goal the trasplant specialist has made it clear that I will still be expected to lose at least another 25 lbs. I've considered asking if the Lapband procedure is an option for my situation. Currently I'm using Weight Watchers online. I love the thought of being able to lose this on my own but I recognize the reality that time is not in my favor. My weight has always been a battle. In addition to IPF I also have a degenerative disc in my lower back and scholiosis. I often cough so hard my back goes out for days or weeks at a time. This makes it even more difficult to exercise or even go about my everyday tasks. I look forward to seeing Arrianne's response to your question. 33 FL IPF dx01/06 > > > Arrianne, You are the first one that I have heard mention gastric bypass > on this site. Before I knew I had PH, my first diagnosis before COPD and > PF, I was visiting my old gp monthly in preparation for a gastric loop. > I had started gaining weight when I could no longer exercise due to SOB. > They kept telling me to lose weight but I couldn't. I could fast just > fine but the body went into starvation mode and slowed the matabolism, > no weight loss. If I reduced my calories, still being unable to exercise > due to the SOB got me no where... When I did get to pulmonary rehab > where I had high levels of oxygen in the hospital, I was able to > exercise and lose weight. My pulmonologist and Mayo decided I could not > tolerate the loop surgery in order to get to the point of the heart lung > transplant I would need and the disease would get me before I could lose > it at the rate I could lose it through diet and exercise alone. I feel > guilty for gaining the weight and angry that the gp never looked far > enough to find the PH and get me treatment earlier. My friend who > insisted I go to Mayo was even willing to donate a lung but we didn't > match and I needed more and it was too complicated to go on with. > > If you don't mind my curiosity, how much weight did you need to lose, > how long did it take and how old are you? I am only 62, my mom died in > her 70's and my dad in his 90's. I have an only daughter and three grand > children that I would like to be around for at least another ten years. > I am their Grammie Goose. I started writing children's books for them > when the first one was born seven years ago. I have already lived longer > than the first prediction for people after their diagnosis for PH. > > I am just trying to get information from people who are in more similar > circumstances as I. Please tell me your story. > > Margaret > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 , I was given prednisone when I first started having breathing problems. A realtor was driving me around to look at houses and her car's warning lights came on telling her to stop immediately. She was a chain smoker and I was trapped in her car until someone came to rescue us. I drove directly to my family doc where he put me on a nebulizer and sent me home with prednisone. On my fourth tablet I wigged out and had to call him to say I was breathing much better however I could not tolerate the prednisone. My pulmonologist now refused to give it to me because of the side effects. Some of the meds I was given made me retain water that went away when I switched to others that would not have those side effects. It really is hard to get it off and with our limited oxygen it seems at least ten times more difficult. Let me know of your progress. Margaret To: Breathe-Support Sent: Saturday, February 14, 2009 8:16:30 PMSubject: Re: Arrianne, re bypass Margaret, I'm glad I saw this post. I am also having a horrible time losing weight. I was already overweight before unsuccesfully trying prednisone and cellcept.After coming off them I was able to lose 30 lbs. I've gained 10 of it back after a crazy, stressfull summer. I'm just now getting back on track. I'm trying to stay as active as possible. I have another 21 lbs to lose before Mayo will even start testing me for transplant eligibility. Once I've met that goal the trasplant specialist has made it clear that I will still be expected to lose at least another 25 lbs. I've considered asking if the Lapband procedure is an option for my situation. Currently I'm using Weight Watchers online. I love the thought of being able to lose this on my own but I recognize the reality that time is not in my favor. My weight has always been a battle. In addition to IPF I also have a degenerative disc in my lower back and scholiosis. I often cough so hard my back goes out for days or weeks at a time. This makes it even more difficult to exercise or even go about my everyday tasks.I look forward to seeing Arrianne's response to your question. 33 FLIPF dx01/06>> > Arrianne, You are the first one that I have heard mention gastric bypass> on this site. Before I knew I had PH, my first diagnosis before COPD and> PF, I was visiting my old gp monthly in preparation for a gastric loop.> I had started gaining weight when I could no longer exercise due to SOB.> They kept telling me to lose weight but I couldn't. I could fast just> fine but the body went into starvation mode and slowed the matabolism,> no weight loss. If I reduced my calories, still being unable to exercise> due to the SOB got me no where... When I did get to pulmonary rehab> where I had high levels of oxygen in the hospital, I was able to> exercise and lose weight. My pulmonologist and Mayo decided I could not> tolerate the loop surgery in order to get to the point of the heart lung> transplant I would need and the disease would get me before I could lose> it at the rate I could lose it through diet and exercise alone. I feel> guilty for gaining the weight and angry that the gp never looked far> enough to find the PH and get me treatment earlier. My friend who> insisted I go to Mayo was even willing to donate a lung but we didn't> match and I needed more and it was too complicated to go on with.> > If you don't mind my curiosity, how much weight did you need to lose,> how long did it take and how old are you? I am only 62, my mom died in> her 70's and my dad in his 90's. I have an only daughter and three grand> children that I would like to be around for at least another ten years.> I am their Grammie Goose. I started writing children's books for them> when the first one was born seven years ago. I have already lived longer> than the first prediction for people after their diagnosis for PH.> > I am just trying to get information from people who are in more similar> circumstances as I. Please tell me your story.> > Margaret> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2009 Report Share Posted February 14, 2009 Glad you are on. The kids are not going to Alaska. S > > > > > > Arrianne, You are the first one that I have heard mention gastric > bypass > > on this site. Before I knew I had PH, my first diagnosis before > COPD and > > PF, I was visiting my old gp monthly in preparation for a gastric > loop. > > I had started gaining weight when I could no longer exercise due to > SOB. > > They kept telling me to lose weight but I couldn't. I could fast > just > > fine but the body went into starvation mode and slowed the > matabolism, > > no weight loss. If I reduced my calories, still being unable to > exercise > > due to the SOB got me no where... When I did get to pulmonary rehab > > where I had high levels of oxygen in the hospital, I was able to > > exercise and lose weight. My pulmonologist and Mayo decided I could > not > > tolerate the loop surgery in order to get to the point of the heart > lung > > transplant I would need and the disease would get me before I could > lose > > it at the rate I could lose it through diet and exercise alone. I > feel > > guilty for gaining the weight and angry that the gp never looked far > > enough to find the PH and get me treatment earlier. My friend who > > insisted I go to Mayo was even willing to donate a lung but we > didn't > > match and I needed more and it was too complicated to go on with. > > > > If you don't mind my curiosity, how much weight did you need to > lose, > > how long did it take and how old are you? I am only 62, my mom died > in > > her 70's and my dad in his 90's. I have an only daughter and three > grand > > children that I would like to be around for at least another ten > years. > > I am their Grammie Goose. I started writing children's books for > them > > when the first one was born seven years ago. I have already lived > longer > > than the first prediction for people after their diagnosis for PH. > > > > I am just trying to get information from people who are in more > similar > > circumstances as I. Please tell me your story. > > > > Margaret > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 i am also in the same boat as you; exercise hasn't been possible for past couple months even the treadmill. Know all the right things to eat; and yet it doesnt seem to matter at this time. Just started weaning the prednisone down 20 mg to 15mg just 2nd day and not sure if cause but my breathing is harder already. So this may not be the answer. Keep in touch maybe the three of us can tag each other and be supportive. Starting tomorrow.. HA HA no really, will truly start more conscious of eating habits.. Maybe the three of us can do this together.. i sure could you the help.. doesn't matter how many nutritionist/dieticians they give me.. Patti nj, ipf 7'06, raynauds, scleroderma, PH 2'07 > > > > > > Arrianne, You are the first one that I have heard mention gastric > bypass > > on this site. Before I knew I had PH, my first diagnosis before > COPD and > > PF, I was visiting my old gp monthly in preparation for a gastric > loop. > > I had started gaining weight when I could no longer exercise due to > SOB. > > They kept telling me to lose weight but I couldn't. I could fast > just > > fine but the body went into starvation mode and slowed the > matabolism, > > no weight loss. If I reduced my calories, still being unable to > exercise > > due to the SOB got me no where... When I did get to pulmonary rehab > > where I had high levels of oxygen in the hospital, I was able to > > exercise and lose weight. My pulmonologist and Mayo decided I could > not > > tolerate the loop surgery in order to get to the point of the heart > lung > > transplant I would need and the disease would get me before I could > lose > > it at the rate I could lose it through diet and exercise alone. I > feel > > guilty for gaining the weight and angry that the gp never looked far > > enough to find the PH and get me treatment earlier. My friend who > > insisted I go to Mayo was even willing to donate a lung but we > didn't > > match and I needed more and it was too complicated to go on with. > > > > If you don't mind my curiosity, how much weight did you need to > lose, > > how long did it take and how old are you? I am only 62, my mom died > in > > her 70's and my dad in his 90's. I have an only daughter and three > grand > > children that I would like to be around for at least another ten > years. > > I am their Grammie Goose. I started writing children's books for > them > > when the first one was born seven years ago. I have already lived > longer > > than the first prediction for people after their diagnosis for PH. > > > > I am just trying to get information from people who are in more > similar > > circumstances as I. Please tell me your story. > > > > Margaret > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Margaret it is funny, i was thinking about some surgery for losing weight.. i have a total of 50 pounds to lose. right now he is starting with the 10 pounds. when i was 25 pounds lighter last year he wanted me to lose 25 pounds. my daughter laughed today when i told her the doc said 10 pounds. i gained 25 pounds last february when i was bedridden for 2 1/2 months at home. we decided i could get better care at home then the hospital i would behave.. Maybe if we can support each other it could be easier.. i have tried with my friends but they also are easily swayed.. lol...i have trouble exercising now due to leg pain and just total fatigue. Also, have scoliosis which is worsening due to the prednisone i am sure. and osteopenia graduated to osteoporosis. patti nj, ipf 7'06, raynauds, scleroderma, PH 2/06. > > > > > > Arrianne, You are the first one that I have heard mention gastric > bypass > > on this site. Before I knew I had PH, my first diagnosis before > COPD and > > PF, I was visiting my old gp monthly in preparation for a gastric > loop. > > I had started gaining weight when I could no longer exercise due to > SOB. > > They kept telling me to lose weight but I couldn't. I could fast > just > > fine but the body went into starvation mode and slowed the > matabolism, > > no weight loss. If I reduced my calories, still being unable to > exercise > > due to the SOB got me no where... When I did get to pulmonary rehab > > where I had high levels of oxygen in the hospital, I was able to > > exercise and lose weight. My pulmonologist and Mayo decided I could > not > > tolerate the loop surgery in order to get to the point of the heart > lung > > transplant I would need and the disease would get me before I could > lose > > it at the rate I could lose it through diet and exercise alone. I > feel > > guilty for gaining the weight and angry that the gp never looked far > > enough to find the PH and get me treatment earlier. My friend who > > insisted I go to Mayo was even willing to donate a lung but we > didn't > > match and I needed more and it was too complicated to go on with. > > > > If you don't mind my curiosity, how much weight did you need to > lose, > > how long did it take and how old are you? I am only 62, my mom died > in > > her 70's and my dad in his 90's. I have an only daughter and three > grand > > children that I would like to be around for at least another ten > years. > > I am their Grammie Goose. I started writing children's books for > them > > when the first one was born seven years ago. I have already lived > longer > > than the first prediction for people after their diagnosis for PH. > > > > I am just trying to get information from people who are in more > similar > > circumstances as I. Please tell me your story. > > > > Margaret > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Ladies, I'm going to be bold hear and share the ugliness of the numbers I am struggling with. Keep in mind I'm only 4ft 11in tall. After being on Prednisone and Cellcept until spring of last year I was 220 lbs. Lost 30 and was down to 190 by July. I was so excited! Then with in one month my dad had a heart attack & quadrupple bypass, I went on vacation 2 weeks later then a week after vacation my Mom-in- law passed away in her sleep from a massive heart attack. I spent much of July and August traveling between Florida and Georgia as a result and found 10 of the pounds I had lost. I've been working hard the past couple of weeks and have managed to lose 3 of those 10. I am now at 197 I need to get to 175 before Mayo will start any testing for eligiblility. I have to be 150 before they will put me on the list. And they would love it if I were 125 by the time of transplant. From begining to end they would have me lose 95 lbs total. Needless to say, I do ALOT of praying. Patti, I agree, The three of us would make great mentors for each other as we have so much in common and can truely relate to what the other is going through. I'm game if you ladies are! 33 FL IPF dx1/06 > > > > > > > > > Arrianne, You are the first one that I have heard mention > gastric > > bypass > > > on this site. Before I knew I had PH, my first diagnosis before > > COPD and > > > PF, I was visiting my old gp monthly in preparation for a > gastric > > loop. > > > I had started gaining weight when I could no longer exercise due > to > > SOB. > > > They kept telling me to lose weight but I couldn't. I could fast > > just > > > fine but the body went into starvation mode and slowed the > > matabolism, > > > no weight loss. If I reduced my calories, still being unable to > > exercise > > > due to the SOB got me no where... When I did get to pulmonary > rehab > > > where I had high levels of oxygen in the hospital, I was able to > > > exercise and lose weight. My pulmonologist and Mayo decided I > could > > not > > > tolerate the loop surgery in order to get to the point of the > heart > > lung > > > transplant I would need and the disease would get me before I > could > > lose > > > it at the rate I could lose it through diet and exercise alone. > I > > feel > > > guilty for gaining the weight and angry that the gp never looked > far > > > enough to find the PH and get me treatment earlier. My friend who > > > insisted I go to Mayo was even willing to donate a lung but we > > didn't > > > match and I needed more and it was too complicated to go on with. > > > > > > If you don't mind my curiosity, how much weight did you need to > > lose, > > > how long did it take and how old are you? I am only 62, my mom > died > > in > > > her 70's and my dad in his 90's. I have an only daughter and > three > > grand > > > children that I would like to be around for at least another ten > > years. > > > I am their Grammie Goose. I started writing children's books for > > them > > > when the first one was born seven years ago. I have already > lived > > longer > > > than the first prediction for people after their diagnosis for > PH. > > > > > > I am just trying to get information from people who are in more > > similar > > > circumstances as I. Please tell me your story. > > > > > > Margaret > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Ladies, I would really appreciate support from fellow breathers; we have so much at stake. I also hear that we have Florida and Georgia in common. I grew up in Pensacola and taught in Jessup over half a lifetime ago. I will look into Weight Watchers and pull out my rehab book again. I have so many ups and downs when I am feeling under the weather and unable to jump on my treadmill. I have been eating more fresh foods to avoid salt and other additives. Margaret To: Breathe-Support Sent: Sunday, February 15, 2009 12:11:19 PMSubject: Re: Arrianne, re bypass Ladies, I'm going to be bold hear and share the ugliness of the numbers I am struggling with. Keep in mind I'm only 4ft 11in tall.After being on Prednisone and Cellcept until spring of last year I was 220 lbs. Lost 30 and was down to 190 by July. I was so excited! Then with in one month my dad had a heart attack & quadrupple bypass, I went on vacation 2 weeks later then a week after vacation my Mom-in-law passed away in her sleep from a massive heart attack. I spent much of July and August traveling between Florida and Georgia as a result and found 10 of the pounds I had lost. I've been working hard the past couple of weeks and have managed to lose 3 of those 10. I am now at 197 :)I need to get to 175 before Mayo will start any testing for eligiblility. I have to be 150 before they will put me on the list. And they would love it if I were 125 by the time of transplant. From begining to end they would have me lose 95 lbs total. Needless to say, I do ALOT of praying. Patti, I agree, The three of us would make great mentors for each other as we have so much in common and can truely relate to what the other is going through. I'm game if you ladies are! 33 FLIPF dx1/06> > >> > > > > > Arrianne, You are the first one that I have heard mention > gastric > > bypass> > > on this site. Before I knew I had PH, my first diagnosis before > > COPD and> > > PF, I was visiting my old gp monthly in preparation for a > gastric > > loop.> > > I had started gaining weight when I could no longer exercise due > to > > SOB.> > > They kept telling me to lose weight but I couldn't. I could fast > > just> > > fine but the body went into starvation mode and slowed the > > matabolism,> > > no weight loss. If I reduced my calories, still being unable to > > exercise> > > due to the SOB got me no where... When I did get to pulmonary > rehab> > > where I had high levels of oxygen in the hospital, I was able to> > > exercise and lose weight. My pulmonologist and Mayo decided I > could > > not> > > tolerate the loop surgery in order to get to the point of the > heart > > lung> > > transplant I would need and the disease would get me before I > could > > lose> > > it at the rate I could lose it through diet and exercise alone. > I > > feel> > > guilty for gaining the weight and angry that the gp never looked > far> > > enough to find the PH and get me treatment earlier. My friend who> > > insisted I go to Mayo was even willing to donate a lung but we > > didn't> > > match and I needed more and it was too complicated to go on with.> > > > > > If you don't mind my curiosity, how much weight did you need to > > lose,> > > how long did it take and how old are you? I am only 62, my mom > died > > in> > > her 70's and my dad in his 90's. I have an only daughter and > three > > grand> > > children that I would like to be around for at least another ten > > years.> > > I am their Grammie Goose. I started writing children's books for > > them> > > when the first one was born seven years ago. I have already > lived > > longer> > > than the first prediction for people after their diagnosis for > PH.> > > > > > I am just trying to get information from people who are in more > > similar> > > circumstances as I. Please tell me your story.> > > > > > Margaret> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Well, i am definitely gamed.. i will make a point to log on every night starting monday, tomorrow night.. We will do this.. I have realized if i do it for Temple, i gain.. but right now i am so uncomfortable it has to be for me.. and i have already had the eval and am on the list. but i am overweight therefore if anything happens where he wants to activate me i guess he's saying there can be a problem. You are braver than i.. the problem is i can gain 8 pounds in a day; may be water but at the same token just as difficult to get those off and start over.. so it is very frustrating.. i have tried jenny craig and my protein shakes . Generally my protein shakes worked with my larger meal being lunch and dinner a salad with chicken or some meat.. (homemade.) so, get ready get set let's go.. and thank you.. i feel more encouraged that we can do this will touch base tomorrow. can also use my personal email: mtjvst@... Patti nj > > > > > > > > > > > > Arrianne, You are the first one that I have heard mention > > gastric > > > bypass > > > > on this site. Before I knew I had PH, my first diagnosis before > > > COPD and > > > > PF, I was visiting my old gp monthly in preparation for a > > gastric > > > loop. > > > > I had started gaining weight when I could no longer exercise > due > > to > > > SOB. > > > > They kept telling me to lose weight but I couldn't. I could > fast > > > just > > > > fine but the body went into starvation mode and slowed the > > > matabolism, > > > > no weight loss. If I reduced my calories, still being unable to > > > exercise > > > > due to the SOB got me no where... When I did get to pulmonary > > rehab > > > > where I had high levels of oxygen in the hospital, I was able to > > > > exercise and lose weight. My pulmonologist and Mayo decided I > > could > > > not > > > > tolerate the loop surgery in order to get to the point of the > > heart > > > lung > > > > transplant I would need and the disease would get me before I > > could > > > lose > > > > it at the rate I could lose it through diet and exercise alone. > > I > > > feel > > > > guilty for gaining the weight and angry that the gp never > looked > > far > > > > enough to find the PH and get me treatment earlier. My friend > who > > > > insisted I go to Mayo was even willing to donate a lung but we > > > didn't > > > > match and I needed more and it was too complicated to go on > with. > > > > > > > > If you don't mind my curiosity, how much weight did you need to > > > lose, > > > > how long did it take and how old are you? I am only 62, my mom > > died > > > in > > > > her 70's and my dad in his 90's. I have an only daughter and > > three > > > grand > > > > children that I would like to be around for at least another > ten > > > years. > > > > I am their Grammie Goose. I started writing children's books > for > > > them > > > > when the first one was born seven years ago. I have already > > lived > > > longer > > > > than the first prediction for people after their diagnosis for > > PH. > > > > > > > > I am just trying to get information from people who are in more > > > similar > > > > circumstances as I. Please tell me your story. > > > > > > > > Margaret > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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