Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Well I'll tell you a true happy experance. My Dr. ask if i had completely given up the idea of transplant, i said yes haslearned to bake the best carrot cake and if I died and wanted a piece of it I would be SOOOOO ticked. She laughed and said You do whatever makes you happy. Just keep up the happy.. I just hate it when our peeps are suffering. This is a monster of a disease.Light stuff for you--- March 13 we are having a get together in Orlando for a few days. Can I just tell you how exciting that will be.?? It can't come fast enough for me. I am trying to think of something to do for everyone. I will before time.You take care and keep the smiles coming to us.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Well the beauty of this Board is that you get lots of 8 minutes worth of home grown wisdom & warmth & all for FREE!Look Mr/Ms/ Miss Dr. Shrink there's no such thing as 'MUSN'T' .. we all need to say whatever words FIT.. if we're squaring up then TERMINAL is a word we need to absorb... yes LIFE is Terminal.... I have never heard of ANYONE surviving LIFE... BUT when one is told that one has a health condition that CAN lead to death one has to blinkin' well ABSORB the news..... give a girl a BREAK!I always think of the time I was taught how to get a car out of a skid... the rule was to back off on the urge to slam on the brakes...... go WITH the car.. move into the motion of the skid & GENTLY apply the brakes to pull the car back out......THAT's what a healthy dose of the 'Downers' does... that's what being negative is about... how can you come UP unless you've been DOWN!NOW of course it's horrid to get stuck in a DOWNER 'cos you miss out on too much FUN!How to climb back up is the Tricky bit...... YOU are in charge of that process....you must have a bag of tricks up your sleeve by this stage in your life.....Black Humour is one that works for me! So does a good Lindt Choccie but BUGGA I'm on an Addiction diet right now.... a good Lindt Choccie hasn't touched my lips for months.. writing about it helps.. I can SEE it, imagine it... almost taste it but I DARE not go near it! SERIOUSLY!I reckon it's possible to get addicted to being 'Down' too.....years ago I experienced that after my firt hubby died... I haven't always been hopelessly cheerful & scilly! I called myself the 'President of the Voluntarily Depressed Society' when people asked how I was with that LOOK that told you they didn't really want to know!Crikey what IS it about you lot this morn' I'm typing away like I'm on a dose of 'Quick Fingers'..... tried the chemical way out... hated the shakes... stopped taking 'em & eventually got so BORED with myself that I resigned my Presidential position & took up LIVING again!Now just remember you're not dead yet Blue Flyer... & besides you'll have plenty of time to be out of action when you are.. SO...... get on with LIVING while you are ALIVE! I mean it'd be pretty awful to sit watching the Clock & Calendar counting down the days m'dear!I want to hear some tales of FUN & FRIVOLITY!SOON!Hugs, in Oz (GIO & SGIO when I'm being Scilly!)IPF: Fibrotic NSIP/UIP?????Raynauds'May 2007Ro52May 2008 >> ! You have brought a smile and a warm heart to me every time I read your posts! I thank you for that! I went to see my shrink yesterday morning - I see him for 8 minutes every 3 months too- and I told him about having PF and that I was aware that it was a terminal illness and he said: what do you mean by Terminal? I started to laugh. Anyway, I told him I was going to National Jewish and I'm not so sure he knows what it is but he ended our session saying..."When you first came in you were so negative. I mean you mustn't say that you are going to die from an illness. You could get hit by a bus! They could come up with a treatment. It is just so dour to say you are going to die from something. We are all going to die!" And, I started to laugh again. Crazy world isn't it? Actually I haven't laughed so hard in a while. A psychiatrist preaching denial. Ahahahahahahahahhaha Well, I do hope they do come up with something helpful but there are no busses where I live. Ahahahahahahahha Thank you everyone for helping me regain my sense of humor and especially to you, . Blue Flyer AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Well I'll tell you a true happy experance. My Dr. ask if i had completely given up the idea of transplant, i said yes haslearned to bake the best carrot cake and if I died and wanted a piece of it I would be SOOOOO ticked. She laughed and said You do whatever makes you happy. Just keep up the happy.. I just hate it when our peeps are suffering. This is a monster of a disease.Light stuff for you--- March 13 we are having a get together in Orlando for a few days. Can I just tell you how exciting that will be.?? It can't come fast enough for me. I am trying to think of something to do for everyone. I will before time.You take care and keep the smiles coming to us.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Well the beauty of this Board is that you get lots of 8 minutes worth of home grown wisdom & warmth & all for FREE!Look Mr/Ms/ Miss Dr. Shrink there's no such thing as 'MUSN'T' .. we all need to say whatever words FIT.. if we're squaring up then TERMINAL is a word we need to absorb... yes LIFE is Terminal.... I have never heard of ANYONE surviving LIFE... BUT when one is told that one has a health condition that CAN lead to death one has to blinkin' well ABSORB the news..... give a girl a BREAK!I always think of the time I was taught how to get a car out of a skid... the rule was to back off on the urge to slam on the brakes...... go WITH the car.. move into the motion of the skid & GENTLY apply the brakes to pull the car back out......THAT's what a healthy dose of the 'Downers' does... that's what being negative is about... how can you come UP unless you've been DOWN!NOW of course it's horrid to get stuck in a DOWNER 'cos you miss out on too much FUN!How to climb back up is the Tricky bit...... YOU are in charge of that process....you must have a bag of tricks up your sleeve by this stage in your life.....Black Humour is one that works for me! So does a good Lindt Choccie but BUGGA I'm on an Addiction diet right now.... a good Lindt Choccie hasn't touched my lips for months.. writing about it helps.. I can SEE it, imagine it... almost taste it but I DARE not go near it! SERIOUSLY!I reckon it's possible to get addicted to being 'Down' too.....years ago I experienced that after my firt hubby died... I haven't always been hopelessly cheerful & scilly! I called myself the 'President of the Voluntarily Depressed Society' when people asked how I was with that LOOK that told you they didn't really want to know!Crikey what IS it about you lot this morn' I'm typing away like I'm on a dose of 'Quick Fingers'..... tried the chemical way out... hated the shakes... stopped taking 'em & eventually got so BORED with myself that I resigned my Presidential position & took up LIVING again!Now just remember you're not dead yet Blue Flyer... & besides you'll have plenty of time to be out of action when you are.. SO...... get on with LIVING while you are ALIVE! I mean it'd be pretty awful to sit watching the Clock & Calendar counting down the days m'dear!I want to hear some tales of FUN & FRIVOLITY!SOON!Hugs, in Oz (GIO & SGIO when I'm being Scilly!)IPF: Fibrotic NSIP/UIP?????Raynauds'May 2007Ro52May 2008 >> ! You have brought a smile and a warm heart to me every time I read your posts! I thank you for that! I went to see my shrink yesterday morning - I see him for 8 minutes every 3 months too- and I told him about having PF and that I was aware that it was a terminal illness and he said: what do you mean by Terminal? I started to laugh. Anyway, I told him I was going to National Jewish and I'm not so sure he knows what it is but he ended our session saying..."When you first came in you were so negative. I mean you mustn't say that you are going to die from an illness. You could get hit by a bus! They could come up with a treatment. It is just so dour to say you are going to die from something. We are all going to die!" And, I started to laugh again. Crazy world isn't it? Actually I haven't laughed so hard in a while. A psychiatrist preaching denial. Ahahahahahahahahhaha Well, I do hope they do come up with something helpful but there are no busses where I live. Ahahahahahahahha Thank you everyone for helping me regain my sense of humor and especially to you, . Blue Flyer AZ IPF 11-08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Now THAT's true 'Blue Flyer' Spirit showing.... OMG your Hubby was MURDERED you say..... Sher's first Hubby was killed by a drunk Driver.... mine was killed fighting a Bush Fire...... what a collection of life's Dramas lurk on this Board! You've done some Hard Yard's m'dear...... Great to hear your 'eye' is back........ let it flow! Hugs, GIO > >> > ! You have brought a smile and a warm heart to me every time I read your posts! I thank you for that! I went to see my shrink yesterday morning - I see him for 8 minutes every 3 months too- and I told him about having PF and that I was aware that it was a terminal illness and he said: what do you mean by Terminal? I started to laugh. Anyway, I told him I was going to National Jewish and I'm not so sure he knows what it is but he ended our session saying..."When you first came in you were so negative. I mean you mustn't say that you are going to die from an illness. You could get hit by a bus! They could come up with a treatment. It is just so dour to say you are going to die from something. We are all going to die!" And, I started to laugh again. Crazy world isn't it? Actually I haven't laughed so hard in a while. A psychiatrist preaching denial. Ahahahahahahahahhaha Well, I do hope they do come up with something helpful but there are no busses where I live. Ahahahahahahahha Thank you everyone for helping me regain my sense of humor and especially to you, . Blue Flyer AZ IPF 11-08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Now THAT's true 'Blue Flyer' Spirit showing.... OMG your Hubby was MURDERED you say..... Sher's first Hubby was killed by a drunk Driver.... mine was killed fighting a Bush Fire...... what a collection of life's Dramas lurk on this Board! You've done some Hard Yard's m'dear...... Great to hear your 'eye' is back........ let it flow! Hugs, GIO > >> > ! You have brought a smile and a warm heart to me every time I read your posts! I thank you for that! I went to see my shrink yesterday morning - I see him for 8 minutes every 3 months too- and I told him about having PF and that I was aware that it was a terminal illness and he said: what do you mean by Terminal? I started to laugh. Anyway, I told him I was going to National Jewish and I'm not so sure he knows what it is but he ended our session saying..."When you first came in you were so negative. I mean you mustn't say that you are going to die from an illness. You could get hit by a bus! They could come up with a treatment. It is just so dour to say you are going to die from something. We are all going to die!" And, I started to laugh again. Crazy world isn't it? Actually I haven't laughed so hard in a while. A psychiatrist preaching denial. Ahahahahahahahahhaha Well, I do hope they do come up with something helpful but there are no busses where I live. Ahahahahahahahha Thank you everyone for helping me regain my sense of humor and especially to you, . Blue Flyer AZ IPF 11-08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Now THAT's true 'Blue Flyer' Spirit showing.... OMG your Hubby was MURDERED you say..... Sher's first Hubby was killed by a drunk Driver.... mine was killed fighting a Bush Fire...... what a collection of life's Dramas lurk on this Board! You've done some Hard Yard's m'dear...... Great to hear your 'eye' is back........ let it flow! Hugs, GIO > >> > ! You have brought a smile and a warm heart to me every time I read your posts! I thank you for that! I went to see my shrink yesterday morning - I see him for 8 minutes every 3 months too- and I told him about having PF and that I was aware that it was a terminal illness and he said: what do you mean by Terminal? I started to laugh. Anyway, I told him I was going to National Jewish and I'm not so sure he knows what it is but he ended our session saying..."When you first came in you were so negative. I mean you mustn't say that you are going to die from an illness. You could get hit by a bus! They could come up with a treatment. It is just so dour to say you are going to die from something. We are all going to die!" And, I started to laugh again. Crazy world isn't it? Actually I haven't laughed so hard in a while. A psychiatrist preaching denial. Ahahahahahahahahhaha Well, I do hope they do come up with something helpful but there are no busses where I live. Ahahahahahahahha Thank you everyone for helping me regain my sense of humor and especially to you, . Blue Flyer AZ IPF 11-08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Oh my dear Princess Hee Hee.... YOU always bring a Smile to my Dial... I'm going to be soooooo JEALOUS of you all meeting up in Orlando.. I'll love reading the GOSS! HUGS, GIO > >> > ! You have brought a smile and a warm heart to me every time I > read your posts! I thank you for that! I went to see my shrink > yesterday morning - I see him for 8 minutes every 3 months too- and I > told him about having PF and that I was aware that it was a terminal > illness and he said: what do you mean by Terminal? I started to > laugh. Anyway, I told him I was going to National Jewish and I'm not > so sure he knows what it is but he ended our session saying..."When > you first came in you were so negative. I mean you mustn't say that > you are going to die from an illness. You could get hit by a bus! > They could come up with a treatment. It is just so dour to say you > are going to die from something. We are all going to die!" And, I > started to laugh again. Crazy world isn't it? Actually I haven't > laughed so hard in a while. A psychiatrist preaching denial. > Ahahahahahahahahhaha Well, I do hope they do come up with something > helpful but there are no busses where I live. Ahahahahahahahha Thank > you everyone for helping me regain my sense of humor and especially > to you, . Blue Flyer AZ IPF 11-08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Oh my dear Princess Hee Hee.... YOU always bring a Smile to my Dial... I'm going to be soooooo JEALOUS of you all meeting up in Orlando.. I'll love reading the GOSS! HUGS, GIO > >> > ! You have brought a smile and a warm heart to me every time I > read your posts! I thank you for that! I went to see my shrink > yesterday morning - I see him for 8 minutes every 3 months too- and I > told him about having PF and that I was aware that it was a terminal > illness and he said: what do you mean by Terminal? I started to > laugh. Anyway, I told him I was going to National Jewish and I'm not > so sure he knows what it is but he ended our session saying..."When > you first came in you were so negative. I mean you mustn't say that > you are going to die from an illness. You could get hit by a bus! > They could come up with a treatment. It is just so dour to say you > are going to die from something. We are all going to die!" And, I > started to laugh again. Crazy world isn't it? Actually I haven't > laughed so hard in a while. A psychiatrist preaching denial. > Ahahahahahahahahhaha Well, I do hope they do come up with something > helpful but there are no busses where I live. Ahahahahahahahha Thank > you everyone for helping me regain my sense of humor and especially > to you, . Blue Flyer AZ IPF 11-08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 20, 2009 Report Share Posted January 20, 2009 Oh my dear Princess Hee Hee.... YOU always bring a Smile to my Dial... I'm going to be soooooo JEALOUS of you all meeting up in Orlando.. I'll love reading the GOSS! HUGS, GIO > >> > ! You have brought a smile and a warm heart to me every time I > read your posts! I thank you for that! I went to see my shrink > yesterday morning - I see him for 8 minutes every 3 months too- and I > told him about having PF and that I was aware that it was a terminal > illness and he said: what do you mean by Terminal? I started to > laugh. Anyway, I told him I was going to National Jewish and I'm not > so sure he knows what it is but he ended our session saying..."When > you first came in you were so negative. I mean you mustn't say that > you are going to die from an illness. You could get hit by a bus! > They could come up with a treatment. It is just so dour to say you > are going to die from something. We are all going to die!" And, I > started to laugh again. Crazy world isn't it? Actually I haven't > laughed so hard in a while. A psychiatrist preaching denial. > Ahahahahahahahahhaha Well, I do hope they do come up with something > helpful but there are no busses where I live. Ahahahahahahahha Thank > you everyone for helping me regain my sense of humor and especially > to you, . Blue Flyer AZ IPF 11-08> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 25, 2009 Report Share Posted January 25, 2009 CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08Mississippi Subject: To: Breathe-Support Date: Sunday, January 25, 2009, 9:14 AM "Happy Birthday", Welcome to the official club.. You can now do anything you want without repercussions.. LOL It's so nice. Enjoy "Your Day". Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 29, 2009 Report Share Posted January 29, 2009 , I'll add to Beths post about showering. You may need to turn your 02 up a little. The Chair is great and a big fluffy towel or robe saves a lot of arm use. Just wrap up and sit for a few min. I see you were Dx in 2008. Don't panic with these rough times. Just take your time and know you are not alone and we have ALL experianced what yo are going through. We are all different yet the same.I am so sorry you have to go through the learning to deal and live with this disease. We are always here to help and support. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Today was the first day that I have had problems with showering. My legs felt like lead, and my arms ached washing my hair. Is that lack of oxygen? What are we supposed to do? ly, worried. I have been home under the weather the last two days. Went to doc today who put me on antibiotics again. Feel like I am becoming a hypochondriac with every new ache and pain. Frustrated, NSIP/UIP 08> From: Beth <mbmurtha (AT) yahoo (DOT) com>> Subject: Re: Re: How weather affects us> To: Breathe-Support > Date: Thursday, January 29, 2009, 2:21 PM> Bruce,> I agree. I'm especially finding washing my hair more> and more taxing. It's the weakness I feel in my> shoulders that just makes it exhausting....and I don't> have long hair anymore.> But the heat and steam? Awesome for my breathing!> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > ________________________________> From: Bruce Moreland <brucemoreland (AT) gmail (DOT) com>> To: Breathe-Support > Sent: Thursday, January 29, 2009 12:38:46 PM> Subject: Re: How weather affects us> > > Caro/MB> > Yes, when I even listed shower as difficult, it's not> the hot steamy> water for me. It's getting in and out, washing hair,> bathing that> require more oxygen. I love the steam and definitely lets> me breathe> better for a bit. Now I also often come out coughing> because of drippage> to throat loosened up and caused in shower.> > > >> >> > > Subject: How weather affects us> > To: Breathe-Support@ yahoogroups. com> > Date: Thursday, January 29, 2009, 8:45 AM> >> >> >> >> >> >> >> >> >> > It's interesting to hear how our bodies all> respond so differently to> weather conditions. I am one of those that does terribly in> cold> weather...cold dry weather is horrible for me. When I go> outside on a> very cold day it feels as though my entire respiratory> system has seized> like an engine without any oil. Give me the heat and> humidity any day of> the week. (as long as the air quality is ok of course) Even> the heat and> moisture in the shower doesn't bother me. In fact> it's where I breathe> easiest.> >> > One thing I've found is that I have the most> difficulty on days when> there is a weather front passing through. This was pointed> out to me> when I was in rehab by one of my fellow rehabee's.> Steve (I know you're> lurking out there Steve) told me that it was the day the> weather changed> that he always felt the worst. I started watching and> definitely found> it to be the case for me too. So clearly we are also> affected by> changing barometric pressure also.> >> > I don't know what it all means but I just find it> fascinating how> different we all are. There is no single answer that works> for everyone.> Some can thrive in the cold of Alaska, where others feel> there best in> the heat and humidity of the south in August. The trick is> to figure out> what works for us and do it!> >> > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 12, 2009 Report Share Posted February 12, 2009 Thank you. Later, > > > > > From: Lou com> > > > Subject: HI ALL......... > ........ IT > > IS I > > > To: Breathe-Support@ yahoogroups. com > > > Date: Tuesday, February 10, 2009, 1:50 PM > > > NO PROMIES, WILL TPE FOR 1 MINE THN OFF TOO MUCH > > MORHONESSL > > > THEY > > > BROUGT E BRAD EW WHEO SHAI IS MORIJGLL SRORRYK > > CAN'T > > > FIND RIGHT LTTERS > > > TO PUCH ONL. > > > > > > LEANN CAOEDLD THEY BROUGHT E A NW WHEL CCIR THIS > > > MORNING BEUATIFUL. > > > > > > EILL TSLK LSYRT, > > > ;PBR. MSTU LOU Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 15, 2009 Report Share Posted February 15, 2009 Hi , Please don't feel like you are alone in this fat fight... I was diagnosed in June 2004, IPF I had pneumonia and was put on 60 mg. of prednisone per day. I gained 70 pounds in 8 weeks. I went to 230 and had every horrible symptom prednisone can throw at us. I won't list them I am sure you have some if not all of them. The first visit I had with the transplant Dr. he told me they wouldn't even consider me at my weight, loose to 170 then call for an appointment.. WellI had such a craving for sweets and carbs. I know there was no way I was going to be able to do it. PLUS I couldn't walk enough to exercise successfully. So I did loose about the 30 to 40 pounds but found about 20 I guess. I was pretty sure I was not going for a transplant. I am 66 now and still have a quality of life I don't want to go throughall the things the marvelous people here do that have the operation. I have had many many surgerys and just am donewith that. We each have to choose for ourselves. When I hear someone is going for a NEW LUNG I just get so very excited for them. I pray and worry ( now that surly isn't supposed to happen together) Everyone on this board is just so precious to me. I know God has a plan for each one.I really never seriously considered it for me. Anyhow the weight issue is one most of us have to deal with. I admire your efforts. Hang in there and do the best you can.We won't even get into what that much weight gain does to your wardrobe and physic. Another time. LOLGod Bless. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." 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  Boy, weight issues! I am diabetic and need to lose 60 lbs and can't seem todo itat all. Itry and try but to no avail! I don't even know how to go about losing it! Iam always so hungry and I eat because I just eat. I would love tolose weight. Joyce Rudy AZ IPF 11-08 Re: Hi , Please don't feel like you are alone in this fat fight... I was diagnosed in June 2004, IPF I had pneumonia and was put on 60 mg. of prednisone per day. I gained 70 pounds in 8 weeks. I went to 230 and had every horrible symptom prednisone can throw at us. I won't list them I am sure you have some if not all of them. The first visit I had with the transplant �Dr. �he told me they wouldn't even consider me at my weight, loose to 170 then call for an appointment.. Well I had such a craving for sweets and carbs. I know there was no way I was going to be able to do it. PLUS I couldn't walk� enough to exercise�successfully. So I did loose about the 30 to 40 pounds but found about 20 I guess.� I was pretty sure I was not going for a transplant. I am 66 now and still have a quality of life I don't want to go through all the things the�marvelous�people here do that have the operation. I have had many many surgerys and just am donewith that. We each have to choose for ourselves.� When I hear someone is going for a NEW LUNG I just get so very excited for them. I pray and worry ( now that surly isn't supposed to happen together) Everyone on this board is�just so precious to me. I know God has a plan for each one. I really never seriously considered it for me.� Anyhow the weight issue is one most of us have to deal with. I admire your efforts. Hang in there and do the best you can. We won't even get into what that much weight gain does to your wardrobe and physic. Another time. LOL God Bless. Love & Prayers, Peggy Florida, �IPF/UIP 2004 "I believe that friends are quiet angels�who lift us to our feet,� when our wings�have trouble remembering how to fly."� 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 -joyce jump in with us... my plan is to start eating vegetables and fruit again.. online there is a glycemic index which tells you the best foods to eat to help you lose weight and help maintain the proper carbs especially with diabetes.. That is where you need to be careful.. Too many carbs or protein isnt that great.. patti nj - In Breathe-Support , " JOYCE RUDY " wrote: > > Boy, weight issues! I am diabetic and need to lose 60 lbs and can't seem todo itat all. Itry and try but to no avail! I don't even know how to go about losing it! Iam always so hungry and I eat because I just eat. I would love tolose weight. Joyce Rudy AZ IPF 11- 08 > Re: > > > Hi , Please don't feel like you are alone in this fat fight... I was diagnosed in June 2004, IPF I had pneumonia and was put on 60 mg. of prednisone per day. I gained 70 pounds in 8 weeks. I went to 230 and had every horrible symptom prednisone can throw at us. I won't list them I am sure you have some if not all of them. The first visit I had with the transplant �Dr. �he told me they wouldn't even consider me at my weight, loose to 170 then call for an appointment.. Well > I had such a craving for sweets and carbs. I know there was no way I was going to be able to do it. PLUS I couldn't walk� > enough to exercise�successfully. So I did loose about the 30 to 40 pounds but found about 20 I guess.� > I was pretty sure I was not going for a transplant. I am 66 now and still have a quality of life I don't want to go through > all the things the�marvelous�people here do that have the operation. I have had many many surgerys and just am donewith that. We each have to choose for ourselves.� > When I hear someone is going for a NEW LUNG I just get so very excited for them. I pray and worry ( now that surly isn't supposed to happen together) Everyone on this board is�just so precious to me. I know God has a plan for each one. > I really never seriously considered it for me.� > Anyhow the weight issue is one most of us have to deal with. I admire your efforts. Hang in there and do the best you can. > We won't even get into what that much weight gain does to your wardrobe and physic. Another time. LOL > God Bless. > > > > Love & Prayers, Peggy > Florida, �IPF/UIP 2004 > > > " I believe that friends are quiet angels�who lift us to our feet,� > when our wings�have trouble remembering how to fly. " � > > > > > > > > > > > > > > > > > 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 16, 2009 Report Share Posted February 16, 2009 just took diabetic classes at local hospital excellent course goal for me is 150 grams carbs per day since watching carbs due to glucose levels and recent stomach viruses, i am down about 10 pounds not paying much attention to glycemic index just read that the higher the GI, the faster the sugar high goes up and then comes down. need to eat foods with lower GI or eat high GI Foods with other foods as part of a meal to "neutralize" their effect [not sure if that is the proper term, just my interpretation] Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: To: Breathe-Support Date: Monday, February 16, 2009, 12:19 AM -joyce jump in with us... my plan is to start eating vegetables and fruit again.. online there is a glycemic index which tells you the best foods to eat to help you lose weight and help maintain the proper carbs especially with diabetes.. That is where you need to be careful.. Too many carbs or protein isnt that great.. patti nj- In Breathe-Support@ yahoogroups. com, "JOYCE RUDY" <greycharlie@ ...> wrote:>> Boy, weight issues! I am diabetic and need to lose 60 lbs and can't seem todo itat all. Itry and try but to no avail! I don't even know how to go about losing it! Iam always so hungry and I eat because I just eat. I would love tolose weight. Joyce Rudy AZ IPF 11-08> Re: > > > Hi , Please don't feel like you are alone in this fat fight... I was diagnosed in June 2004, IPF I had pneumonia and was put on 60 mg. of prednisone per day. I gained 70 pounds in 8 weeks. I went to 230 and had every horrible symptom prednisone can throw at us. I won't list them I am sure you have some if not all of them. The first visit I had with the transplant �Dr. �he told me they wouldn't even consider me at my weight, loose to 170 then call for an appointment. . Well> I had such a craving for sweets and carbs. I know there was no way I was going to be able to do it. PLUS I couldn't walk�> enough to exercise�successfully. So I did loose about the 30 to 40 pounds but found about 20 I guess.�> I was pretty sure I was not going for a transplant. I am 66 now and still have a quality of life I don't want to go through> all the things the�marvelous�people here do that have the operation. I have had many many surgerys and just am donewith that. We each have to choose for ourselves.�> When I hear someone is going for a NEW LUNG I just get so very excited for them. I pray and worry ( now that surly isn't supposed to happen together) Everyone on this board is�just so precious to me. I know God has a plan for each one.> I really never seriously considered it for me.�> Anyhow the weight issue is one most of us have to deal with. I admire your efforts. Hang in there and do the best you can.> We won't even get into what that much weight gain does to your wardrobe and physic. Another time. LOL> God Bless.> > > > Love & Prayers, Peggy> Florida, �IPF/UIP 2004> > > "I believe that friends are quiet angels�who lift us to our feet,�> when our wings�have trouble remembering how to fly."�> > > > > > > > > > > > > > > > > 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 16, 2009 Report Share Posted February 16, 2009 Patti- I will jump in with you guys..and go back to trying to follow my diavetic diet ridgedly. I am allowed 30 carbs permeal and 15 for a snack..and then there are the portions...lately I have been eating 2 portions instead of one. Not good! So I Gave up...but if you guys can do it I c an do it! I will do it! Joyce rudy Re: > > > Hi , Please don't feel like you are alone in this fat fight... I was diagnosed in June 2004, IPF I had pneumonia and was put on 60 mg. of prednisone per day. I gained 70 pounds in 8 weeks. I went to 230 and had every horrible symptom prednisone can throw at us. I won't list them I am sure you have some if not all of them. The first visit I had with the transplant �Dr. �he told me they wouldn't even consider me at my weight, loose to 170 then call for an appointment.. Well> I had such a craving for sweets and carbs. I know there was no way I was going to be able to do it. PLUS I couldn't walk�> enough to exercise�successfully. So I did loose about the 30 to 40 pounds but found about 20 I guess.�> I was pretty sure I was not going for a transplant. I am 66 now and still have a quality of life I don't want to go through> all the things the�marvelous�people here do that have the operation. I have had many many surgerys and just am donewith that. We each have to choose for ourselves.�> When I hear someone is going for a NEW LUNG I just get so very excited for them. I pray and worry ( now that surly isn't supposed to happen together) Everyone on this board is�just so precious to me. I know God has a plan for each one.> I really never seriously considered it for me.�> Anyhow the weight issue is one most of us have to deal with. I admire your efforts. Hang in there and do the best you can.> We won't even get into what that much weight gain does to your wardrobe and physic. Another time. LOL> God Bless.> > > > Love & Prayers, Peggy> Florida, �IPF/UIP 2004> > > "I believe that friends are quiet angels�who lift us to our feet,�> when our wings�have trouble remembering how to fly."�> > > > > > > > > > > > > > > > > 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 16, 2009 Report Share Posted February 16, 2009  Peggy...what is this picture? It's so big I can't see it... MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! How cute is this.. Patty adopted MB.. Patty does NOT pay attention to anyone.. Love & Prayers, Peggy Florida, �IPF/UIP 2004 "I believe that friends are quiet angels�who lift us to our feet,� when our wings�have trouble remembering how to fly."� Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 16, 2009 Report Share Posted February 16, 2009 Peggy....these pictures are tooooooo dear and darling for words! Ahhhhhhhh. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Here it is Sher... sorry I had the other on my desk top and didn't reduce it... OOPSI'll just add the little one too.. the newbies haven't seen them. Beth and Patty, Abby at 6 months of age.. I think her mask is gone now. DCFC0057 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2009 Report Share Posted February 17, 2009 WOW, MB I'd LOVE you to scan that nutrition info for me! TA MUCHLY! I've learnt so much this last year, researching about nutrition... checking up on myths & realities... I really need to understand to make changes... I discovered ALL Aussie's should be looking to increase their Selenium intake 'cos our ancient soils are seriously deficient in that mineral...6 Brazil Nuts per day takes care of that... I have them with my morn' coffee instead of a Biccie! It's totally AMAZING how our bodies work... Frozen Fruit/Veges come in way in front of tinned stuff 'cos they don't get 'interfered' with usually...tinned food gets so much added, its really not funny! Good for emergencies though...no need for refrigeration.. my pantry has emergency stock in case of floods etc! I buy Frozen Salmon from Norway 'cos it's caught in the Ocean rather than Tasmanian Salmon that gets farmed... I know people who work in the Fish Farming Industry & the stories they tell of the hormones /antibiotics that get fed to the fish is hair-rasing! Does anyone know if tinned Salmon/Tuna from Canada & Alaska is wild caught or farmed????????? I buy Milk that comes from a Specialist Farm Co-op that is small & where the milk isn't mixed together from farms all over the state! As a kid we always got our milk from 1 Farmer... I hate the all- in-together thing! My father was an Inspector of Labour & Food Industry... I KNOW that sourcing good food is important! He banned my mother from using particular food suppliers/cafes etc. She was NOT allowed to food shop on Mondays because Dad said the food was always kept over from Friday/Saturday trading! Meat Pies from our School Tuckshop were on the Banned List 'cos Dad knew the State of the Bakery they came from..... how we LOVED to sneak away with one of THOSE naughty pies! Maybe I'm 'channelling' my Dad... he'd be surely impressed! Cheers, GIO > >> > Jack,> > Dr. Weil's website has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> > http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > > > I realize that this may be controversial to some people. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I'm doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Jack Marshall mrshlljck@ .> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 4:04:42 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info> > on what it consists of?> > Jack> > 79/IPF - UIP/dx06/05 Maine > > > > > > > > > > ____________ _________ _________ __> > From: Beth mbmurtha (AT) yahoo (DOT) com>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 2:35:19 PM> > Subject: Re: Re: Support to Lose Weight> > > > > > Sue,> > I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > > > Beth in North Carolina> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > "May you never take one single breath for granted"> > > > > > > > > > ____________ _________ _________ __> > From: Sue Dassel sdassel (AT) verizon (DOT) net>> > To: Breathe-Support@ yahoogroups. com> > Sent: Tuesday, February 17, 2009 10:17:40 AM> > Subject: Re: Support to Lose Weight> > > > > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy. My last PFT done> > here locally was not very good from the diffusion standpoint –only 19% of predicted—but the lung volume and other tests were not bad at all. Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> > I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary.> > I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> > There, I got it off my chest. Any suggestions/ recommendations would be welcome.> > Sue D.> > 62 yr old, Fibrotic NSIP dx 9/07, VA> > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 & Beth I had a good day diet wise although I did not get around to breakfast until I had been up a little over four hours. At 3pm I had 2 poached eggs with 2 slices multigrain toast with flax seed. I did put real butter on my toast and a dab in each egg cup already sprayed with pam. (not more than 1t total) I have been told by my nutritionist to spread my food out over six small meals. That works for me because if I eat too much at once I have trouble breathing. Along the way I had a banana, 1/2 C almonds, and about 12oz grapes. I didn't have any raw veggies that I could eat and was too tired to steam any. I also had a 60 calorie Jello pudding cup with many odd ingredients and splenda for my sweet. I looked up Dr Weil's diet. I am good with the fruits and veggies. I have been told to avoid anything 'white' pasta, potatoes, rice, flour... I like garbanzo beans eaten out of hand after being rinsed well and added to salads and Lima beans either fresh or frozen. I have switched to olive and canola oils, keep unprocessed nuts on hand, splurge on avocados and have breads with seeds added.. we catch our salmon as it returns from the ocean. I do not care for salmon so mine is cooked with lemon verbena, dill, and lots of lemon or lime juice. I get the little individual serving size frozen soy beans in packets ready to microwave. They are in the shell and take time to snack on. Freeze dried soy beans are food out of hand and topping salads. I will definitely eat more than the recommended 1-2 servings per week of dairy, eggs, poultry, meat or cheese. I think I will skip the tea, supplements, wine and chocolate. I make a heart healthy roots and tubers soup that includes many good vegetables that I eat several times a day until it is gone. It is a large recipe that includes one of each vegetable; the recipe can not be cut down and it doesn't freeze well. Costco has a frozen vegetable mix that is high in fiber. I have the ingredients for the soup but not the energy to peel and chop the veggies, nor do I have the energy to go out for my frozen mixed veggies. In our very short growing season I have my own organic fruits, veggies and honey but haven't felt like putting anything up the last few years. I will freeze and dry this year! Margaret To: Breathe-Support Sent: Tuesday, February 17, 2009 5:01:33 PMSubject: , I'm just really starting to learn about all this stuff. I've only just skimmed the surface till now but going to this nutritionist at Duke is really opening my eyes to how much better I can be doing for myself. It helps me to cast it in a positive light, instead of thinking of all the foods I shouldn't eat, I instead feel practically overwhelmed at all the stuff I'm supposed to eat. Apparently berries are very rich in anti-oxidants and have anti-inflammatory properties. Who knew? So why wouldn't I want a bowl of mixed berries after dinner? It's easy to buy a bag of frozen berries, or many other kinds of frozen fruit let them defrost for a half hour. I've always gotten hung up on wanting everything to be fresh and organic. That is still the ideal but if that's not possible then frozen is fine. Fortunately I like things like sweet potatoes, and practically every kind of vegetable you can throw at me. Garlic, onions, leeks,chives are all beautiful things in my book I'm getting used to nuts being on the ok list. I've always avoided them because of the calories and fat content. It's that type of fat that I want in my diet though. Having a much bigger breakfast than I'm used to is a big adjustment for me, as is getting more whole grains in my diet. It's a challenge but I'm working on it. One thing that's been easy to do is add the flax seed. It's such a nutrient rich food and it's so easy to add to lots of different things. None of this is any help to you but I'll update you as I learn more. If you want I can scan a couple of the handouts my nutritionist gave me and email them to you. Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "May you never take one single breath for granted" From: <gina.francis@ bigpond.com>To: Breathe-Support@ yahoogroups. comSent: Tuesday, February 17, 2009 8:30:45 PMSubject: Re: Support to Lose Weight Hi MB... that just looks SENSIBLE to me! I still have to learn more ways to include legumes in my cooking... any great easy recipes would be appreciated! I do make my own Hummous which I store oin little cobtainbers in the Freezer to use every day instead of butter on my wholemeal bread.. Hummous makes the rest of the Salad stuff taste really good! Soy products aren't my faves either...occasional ly but not every day as Dr Weil suggests! I can't stress enough how important it is to have lots of different COLOURED veges each day... each colour represents different vitamins /minerals... it's no good having 5 serves of 1 TYPE of vege.... Any practical suggestions gratefully received... GIO >> Jack,> Dr. Weil's website has alot of information on an anti-inflammatory diet. Here is a link to his food pyramid:> http://www.drweil. com/drw/u/ ART02995/ Dr-Weil-Anti- Inflammatory- Food-Pyramid. html> > I realize that this may be controversial to some people.. I'm not saying anyone should make the same changes I have, just sharing what I've been working on diet wise. I feel very comfortable with this partly because I'm working with a nutritionist at Duke who is completely familiar with my medical situation and my history and more importantly I'm doing this with the blessing and encouragement of both my pulmonologist and my rheumatologist at Duke.> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "May you never take one single breath for granted"> > > > > ____________ _________ _________ __> From: Jack Marshall mrshlljck@.. .> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, February 17, 2009 4:04:42 PM> Subject: Re: Re: Support to Lose Weight> > > MB, I've never heard of an anti-inflammatory diet, but I am very interested in one. Can you share info> on what it consists of?> Jack> 79/IPF - UIP/dx06/05 Maine > > > > > ____________ _________ _________ __> From: Beth mbmurtha (AT) yahoo (DOT) com>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, February 17, 2009 2:35:19 PM> Subject: Re: Re: Support to Lose Weight> > > Sue,> I struggle with the same issue that you've all been talking about. I need to lose around the same amount as you do in order to go any further with transplant. Fortunately I am still considered way to healthy (I find that somewhat amusing) to be considered for transplant, overweight or not. But I also realize that could change at any time. > My nsip seems to have been caused by the dermatomyositis which means that theoretically controlling my auto-immune condition helps to prevent worsening of my lung condition. Can't count on that obviously. Who do you see at Duke? I see Lake on, he has told me that life expectancy with nsip (both fibrotic and cellular) varies tremendously from stats similar to IPF as you said to literally decades of stability. It may ultimately depend on what caused it. > > What I'm doing right now is radically different from anything else I've ever done. I've begun working with a nutritionist from the Duke Center for Living and have begun eating an 'anti-inflammation' diet. I'm not at all focusing on losing weight (though I am) it's more about choosing to eat foods that can help my body be as healthy as possible. I don't know how this will work for me over the long haul but I'm giving it a go cause what I've done up till now hasn't gotten me anything but aggravation.> > Beth in North Carolina> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> > "May you never take one single breath for granted"> > > > > ____________ _________ _________ __> From: Sue Dassel sdassel (AT) verizon (DOT) net>> To: Breathe-Support@ yahoogroups. com> Sent: Tuesday, February 17, 2009 10:17:40 AM> Subject: Re: Support to Lose Weight> > > Hi friends: I'd like to jump in here. I have always had a weight problem and have also been on Cellcept (3000 mg / day) and prednisone (now down to 5 mg) for the past 15 months. I gained about 25 lbs and now need to lose 100 lbs to be considered for a transplant at Duke. That 100 lbs might as well be 1000 lbs. I am looking into a lap band or bypass and would be approved from an ins. Standpoint, but before being considered Ihave to get an EKG, and a recent PFT, a psychologist eval and some other test. I am in the process of getting this info together. My pulmodoc at Duke has hesitantly said he would approve of this procedure for me. My local pulmodoc told me it's almost impossible to lose weight on prednisone and I don't want to go through a lap band procedure if I'm only going to lose a small amount of weight. The other thing he told me was that fibrotic NSIP is very close to IPF in terms of life expectancy. My last PFT done> here locally was not very good from the diffusion standpoint –only 19% of predicted—but the lung volume and other tests were not bad at all. Doc said there may be a variation in equipment from here to Duke so I guess my test in March will tell more.> I am going back to Duke in March, and I have a feeling he is going to change the meds and probably up the prednisone. I am really in a quandary.> I know part of my eating is psychological and the thought of a diet when dealing with this terminal disease is almost too much for me to handle. I don't want to feel deprived. It's not that I eat much in quantity because I feel terrible if I have overeaten, I just make the wrong choices so I don't feel deprived.> There, I got it off my chest. Any suggestions/ recommendations would be welcome.> Sue D.> 62 yr old, Fibrotic NSIP dx 9/07, VA> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 HEY GANG A QUICK NOTE ABOUT SOY: SOY IS THE MOST MUCOUS PRODUCING FOOD YOU CAN EAT AND SHOULD BE AVOIDED AT ALL COSTS!!! Suzi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 HEY GANG A QUICK NOTE ABOUT SOY: SOY IS THE MOST MUCOUS PRODUCING FOOD YOU CAN EAT AND SHOULD BE AVOIDED AT ALL COSTS!!! Suzi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 hi was actually told Joyce that cutting the carbs down would be a good thing for meals and i at this time have it written down but not at my finger tips.. the other thing is like most will tell you that 6 small meals is better for metabolism, and for breathing.. felt so roly poly and sick felt like i ate so much.. 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...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 hi was actually told Joyce that cutting the carbs down would be a good thing for meals and i at this time have it written down but not at my finger tips.. the other thing is like most will tell you that 6 small meals is better for metabolism, and for breathing.. felt so roly poly and sick felt like i ate so much.. 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...
Guest guest Posted February 18, 2009 Report Share Posted February 18, 2009 hi was actually told Joyce that cutting the carbs down would be a good thing for meals and i at this time have it written down but not at my finger tips.. the other thing is like most will tell you that 6 small meals is better for metabolism, and for breathing.. felt so roly poly and sick felt like i ate so much.. 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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