Guest guest Posted August 29, 2005 Report Share Posted August 29, 2005 Pat, I just read your post and saw that was admitted. How is he doing and have they found out what is wrong with him? Please let us know and I hope is is doing better very soon. Take care, Jodi R. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 1, 2005 Report Share Posted September 1, 2005 Pat, We're thinking of all of 's family and wish him a speedy recovery! Dayna _____ From: RSS-Support [mailto:RSS-Support ] On Behalf Of pcpets Sent: Thursday, September 01, 2005 4:27 PM To: RSS-Support Subject: Re: not a happy day - Chrissy Hey Chrissy, I'm so sorry to hear that you have to stay longer. I know how we felt when B was there, and we were anxious to get home. Just know that it's for the best, and when this is all behind you, it won't seem as bad as it does now. You're both in my thoughts and prayers. Hopefully this whole ordeal will end soon! HUGS!!! Pat (g-ma to , RSS, 3 yrs 8 months old, 24.5#, 34 " , G-tube, GHT) PS - just got out of the hospital Tuesday, and he's heading back to the ER as I type! He vomiting, so that usually means a 48-72 hour stay at minimum. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 21, 2005 Report Share Posted October 21, 2005 Hi Pat Do you know if the grow chart CD from the convention calculates weight/height ratio? I keep meaning to do Adam's and I am always too busy (LOL). I just got the CD a couple of weeks ago and haven't looked at it yet. Let me know if you can. Thanks! Deb Qestions about GH and caloric catch-up - Reah Hi Reah! Welcome to the RSS list serve! It's filled with a lot of wonderful, informative, and supportive friends. Hopefully, we'll be able to answer some of your questions. Dr Harbison, an endo at Mount Sinai in NYC, is considered by many, to be the #1 expert on RSS in the US. She generally wants our kids to reside somewhere close to the 15% line on the weight-for-height chart (the weight-for-stature (measured standing) and the weight-for-length (measured laying down) charts are the same things) This web site http://www.cdc.gov/nchs/about/major/nhanes/growthcharts/charts.htm has all the different growth charts. You would just want to make sure that you pick the one appropriate to your child's gender and age. When I checked the weight-for-length chart, girls age Birth-36 months, it looks like your daughter is just below the 3rd % line, so that's not too bad, I've seen worse, but she definitely needs to put on some weight. The problem with starting GH before the child has completed their caloric catch-up, is that GH increases the child growth velocity by 1.5-2 times it's non-GH rate. If the child is not calorically replete, it's no only harder for them to catch up, but it hard for them to keep up, and as Dr H is very fond of saying " kids don't grow on air " . To get the best out of the GH you're using, your daughter needs to be able to keep up calorically. As far as feeding clinics go, I haven't found one that does not treat poor eating as a behavioral problem, instead of a metabolic problem. Many factors can cause our kids not to eat well. Things like delayed gastric emptying, and silent reflux make it downright uncomfortable for our kids to ingest food. Once a pattern is established, such as the child eats and suffers from painful reflux, the child quickly associates the pain with eating, and chooses not to eat. These problems can go by undetected for years!! My g-son, 's reflux went undiagnosed for over 8 months, and created such a severe oral aversion that he required the placement of a g-tube, and is still, at almost 4 years old, unable/unwilling to eat enough orally to sustain him. I didn't see any reflux meds as part of your daughter's regimen. Do you use either an H2A (Zantac, Pepcid) or a PPI (Prevacid, Prilosec) as part of your daughter's daily medications?? Periactin can cause, or increase existing reflux, but this problem is far outweighed by the benefits of weight gain. There are several kids on the list serve that have used Periactin for years with no ill effects. I hope this brings some enlightenment. Feel free to keep asking questions, and we'll all try to answer them! And again, Welcome!! Pat (g-ma to , RSS, 3 yrs 10 months old, 25#, 34.6 " , G-tube, GHT) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2006 Report Share Posted January 4, 2006 I forgot Maddy is on continuos feeds 20 hours a day. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Pat, I wish I were there to give you a hug and tell you I DO understand. I gained 70 pounds in 7 or 8 weeks. Thanks pred. ;( I am also sick and tired of being sick and tired.. I am pretty sure your memory problems are also pred. I craved sweets like you would not believe. Still don't turn down a good piece of pie or cake. ;)But the biggest and best decision I have ever made (with the help of my hubby) is to be happy every day. Sometimes it is hard but I usually can find a smile somewhere. Just know we all do GET IT and are here for you to rand ALL YOU WANT... And I think I am the wrong one to ask about diet.Love & PrayersPeggy, IPF 2004 Hi Pink Joyce,Where would I find the info on "You On A Diet". I've gained 40 lbs since I have been on prednisone. My doctor told me it's not the prednisone, that I have to control my eating habits. It's really hard though, because prednisone makes me want to eat. I feel so horrible - I'm sure I would feel so much better if I could loose weight.Someone mentioned Bronchiectasis. I recently got my medical reports from my Dr. because I plan to go to the NJPH in Denver, and I read in the report that I have bronchiectasis. They have never mentioned that to me. I also have asthma, and my primary physician had me on Symbicort and oral albuterol. My pulmonary Dr. told me that those meds were not doing anything for me. I'm on prednisone and NAC. Also, Hydrocodone for cough, and oxygen of course.I'm so disgusted with the disease, the doctors, feeling horrible and everything. My memory is getting so bad, and I just want to give up. I know I'm being so negative, and I don't want to be this way, but I'm tired. Wow, this is an awful email, and I just wanted to know where I could find the info on the diet. If you could let me know, please.Thanks,Pat From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Dr. OzTo: Breathe-Support@ yahoogroups. comDate: Monday, December 14, 2009, 10:23 PM Tell him I just started his diet plan, You on a Diet! In order to lose the weight I need to lose to get listed for my Lung Transplant. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Mon, December 14, 2009 8:51:20 AMSubject: Dr. Oz Just want you to know that i have started writing to the Dr. Oz show about pulmonary fibrosis. I would like to see this monster of a disease discussed on his show, thereby increasing public awareness.. Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 Peggy I do the same thing you do.........but I don't gain weight...I am now ths same I was in collage........185 and am 6ft tall........ <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Wed, December 16, 2009 11:07:49 AMSubject: Re: Pat Pat, I wish I were there to give you a hug and tell you I DO understand. I gained 70 pounds in 7 or 8 weeks. Thanks pred. ;( I am also sick and tired of being sick and tired.. I am pretty sure your memory problems are also pred. I craved sweets like you would not believe. Still don't turn down a good piece of pie or cake. But the biggest and best decision I have ever made (with the help of my hubby) is to be happy every day. Sometimes it is hard but I usually can find a smile somewhere. Just know we all do GET IT and are here for you to rand ALL YOU WANT... And I think I am the wrong one to ask about diet. Love & Prayers Peggy, IPF 2004 Hi Pink Joyce, Where would I find the info on "You On A Diet". I've gained 40 lbs since I have been on prednisone. My doctor told me it's not the prednisone, that I have to control my eating habits. It's really hard though, because prednisone makes me want to eat. I feel so horrible - I'm sure I would feel so much better if I could loose weight. Someone mentioned Bronchiectasis. I recently got my medical reports from my Dr. because I plan to go to the NJPH in Denver, and I read in the report that I have bronchiectasis. They have never mentioned that to me. I also have asthma, and my primary physician had me on Symbicort and oral albuterol. My pulmonary Dr. told me that those meds were not doing anything for me. I'm on prednisone and NAC. Also, Hydrocodone for cough, and oxygen of course. I'm so disgusted with the disease, the doctors, feeling horrible and everything. My memory is getting so bad, and I just want to give up. I know I'm being so negative, and I don't want to be this way, but I'm tired. Wow, this is an awful email, and I just wanted to know where I could find the info on the diet. If you could let me know, please. Thanks, Pat From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Dr. OzTo: Breathe-Support@ yahoogroups. comDate: Monday, December 14, 2009, 10:23 PM Tell him I just started his diet plan, You on a Diet! In order to lose the weight I need to lose to get listed for my Lung Transplant. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Mon, December 14, 2009 8:51:20 AMSubject: Dr. Oz Just want you to know that i have started writing to the Dr. Oz show about pulmonary fibrosis. I would like to see this monster of a disease discussed on his show, thereby increasing public awareness.. Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 OH SHOOT , I'm 5'3 and 5'3 around.. LOL I'm 200 fluffy happy pounds ;D Love & PrayersPeggy, IPF 2004 Peggy I do the same thing you do.........but I don't gain weight...I am now ths same I was in collage........185 and am 6ft tall........ <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> From: Peggy <pac1773 (AT) centurylink (DOT) net>To: Breathe-Support Sent: Wed, December 16, 2009 11:07:49 AMSubject: Re: Pat Pat, I wish I were there to give you a hug and tell you I DO understand. I gained 70 pounds in 7 or 8 weeks. Thanks pred. ;( I am also sick and tired of being sick and tired.. I am pretty sure your memory problems are also pred. I craved sweets like you would not believe. Still don't turn down a good piece of pie or cake. But the biggest and best decision I have ever made (with the help of my hubby) is to be happy every day. Sometimes it is hard but I usually can find a smile somewhere. Just know we all do GET IT and are here for you to rand ALL YOU WANT... And I think I am the wrong one to ask about diet. Love & Prayers Peggy, IPF 2004 Hi Pink Joyce, Where would I find the info on "You On A Diet". I've gained 40 lbs since I have been on prednisone. My doctor told me it's not the prednisone, that I have to control my eating habits. It's really hard though, because prednisone makes me want to eat. I feel so horrible - I'm sure I would feel so much better if I could loose weight. Someone mentioned Bronchiectasis. I recently got my medical reports from my Dr. because I plan to go to the NJPH in Denver, and I read in the report that I have bronchiectasis. They have never mentioned that to me. I also have asthma, and my primary physician had me on Symbicort and oral albuterol. My pulmonary Dr. told me that those meds were not doing anything for me. I'm on prednisone and NAC. Also, Hydrocodone for cough, and oxygen of course. I'm so disgusted with the disease, the doctors, feeling horrible and everything. My memory is getting so bad, and I just want to give up. I know I'm being so negative, and I don't want to be this way, but I'm tired. Wow, this is an awful email, and I just wanted to know where I could find the info on the diet. If you could let me know, please. Thanks, Pat From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Dr. OzTo: Breathe-Support@ yahoogroups. comDate: Monday, December 14, 2009, 10:23 PM Tell him I just started his diet plan, You on a Diet! In order to lose the weight I need to lose to get listed for my Lung Transplant. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Mon, December 14, 2009 8:51:20 AMSubject: Dr. Oz Just want you to know that i have started writing to the Dr. Oz show about pulmonary fibrosis. I would like to see this monster of a disease discussed on his show, thereby increasing public awareness.. Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 And I'd love to hug you <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http://us.i1.yimg.com/us.yimg.com/i/mesg/tsmileys2/50.gif"></FONT> To: Breathe-Support Sent: Wed, December 16, 2009 5:21:25 PMSubject: Re: Re: Pat OH SHOOT , I'm 5'3 and 5'3 around.. LOL I'm 200 fluffy happy pounds ;D Love & Prayers Peggy, IPF 2004 Peggy I do the same thing you do.........but I don't gain weight...I am now ths same I was in collage..... ...185 and am 6ft tall........ <FONT face="comic sans ms" color=#40007f size=3> Soulliere & nbsp; <IMG src="http:// us.i1.yimg. com/us.yimg. com/i/mesg/ tsmileys2/ 50.gif"></FONT> From: Peggy <pac1773@centurylink .net>To: Breathe-Support@ yahoogroups. comSent: Wed, December 16, 2009 11:07:49 AMSubject: Re: Pat Pat, I wish I were there to give you a hug and tell you I DO understand. I gained 70 pounds in 7 or 8 weeks. Thanks pred. ;( I am also sick and tired of being sick and tired.. I am pretty sure your memory problems are also pred. I craved sweets like you would not believe. Still don't turn down a good piece of pie or cake. But the biggest and best decision I have ever made (with the help of my hubby) is to be happy every day. Sometimes it is hard but I usually can find a smile somewhere. Just know we all do GET IT and are here for you to rand ALL YOU WANT... And I think I am the wrong one to ask about diet. Love & Prayers Peggy, IPF 2004 Hi Pink Joyce, Where would I find the info on "You On A Diet". I've gained 40 lbs since I have been on prednisone. My doctor told me it's not the prednisone, that I have to control my eating habits. It's really hard though, because prednisone makes me want to eat. I feel so horrible - I'm sure I would feel so much better if I could loose weight. Someone mentioned Bronchiectasis. I recently got my medical reports from my Dr. because I plan to go to the NJPH in Denver, and I read in the report that I have bronchiectasis. They have never mentioned that to me. I also have asthma, and my primary physician had me on Symbicort and oral albuterol. My pulmonary Dr. told me that those meds were not doing anything for me. I'm on prednisone and NAC. Also, Hydrocodone for cough, and oxygen of course. I'm so disgusted with the disease, the doctors, feeling horrible and everything. My memory is getting so bad, and I just want to give up. I know I'm being so negative, and I don't want to be this way, but I'm tired. Wow, this is an awful email, and I just wanted to know where I could find the info on the diet. If you could let me know, please. Thanks, Pat From: worth <hope2thend (AT) yahoo (DOT) com>Subject: Re: Dr. OzTo: Breathe-Support@ yahoogroups. comDate: Monday, December 14, 2009, 10:23 PM Tell him I just started his diet plan, You on a Diet! In order to lose the weight I need to lose to get listed for my Lung Transplant. C_53_Familial IPF_5/09, Washington HOPE doesn't disappoint! From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Mon, December 14, 2009 8:51:20 AMSubject: Dr. Oz Just want you to know that i have started writing to the Dr. Oz show about pulmonary fibrosis. I would like to see this monster of a disease discussed on his show, thereby increasing public awareness.. Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund. org Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2009 Report Share Posted December 16, 2009 , And this is why women hate men when they are on a diet. Women who are on prednisone and who have gotten fluffy do not want to hear you haven't gained any weight! LOL Dyane Phoenix > >>> > >>> > >>>>From: worth hope2thend (AT) yahoo (DOT) com> > >>>>Subject: Re: Dr. Oz > >>>>To: Breathe-Support@ yahoogroups. com > >>>>Date: Monday, December 14, 2009, 10:23 PM > >>>> > >>>> > >>>> > >>>>Tell him I just started his diet plan, You on a Diet! In order to lose the weight I need to lose to get listed for my Lung Transplant. > >>>> > >>>>C_53_Familial IPF_5/09, Washington > >>>>HOPE doesn't disappoint! > >>>> > >>>> > >>>> > >>>> > >>>> > >>>> > ________________________________ > From: Joyce T Rosenberg <pinkrockybeach@ yahoo.com> > >>>>To: breathe-support@ yahoogroups. com > >>>>Sent: Mon, December 14, 2009 8:51:20 AM > >>>>Subject: Dr. Oz > >>>> > >>>> > >>>>Just want you to know that i have started writing to the Dr. Oz show about pulmonary fibrosis. I would like to see this monster of a disease discussed on his show, thereby increasing public awareness.. > >>>> > >>>> > >>>>Pink Joyce R (IPF 3/06)  IFA 5/09 Pennsylvania > >>>>Donate Life Listed 1/09 Inactive 4/09 > >>>>www.transplantfund. org > >>>> > >>>> > >>> > >> > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Pat.... it occurred to me as I read your post that if it's possible, go EARLY ENOUGH to be able to sit in the lobby first to calm to coughing and then go into a 'main room'....do you think that would work for you? MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Sher Sent: Saturday, January 30, 2010 3:02 PM To: Breathe-Support Subject: Re: (unknown) BJ..... we just got home from Seattle and I saw Dr. Raghu. This man is so precious and kind he brings tears to my eyes! So caring about the 'stuff' that stresses me... So.....he wants another sleep study done...IN THE LAB. He wanted this last time but my local pulmodude over rode him (that kinda po'd me) and ordered the overnight at home. So....I saw a Fellow (woman) who zoomed right in on the sleep apnea. She is fairly positive that my breathing problems/cognition changes have to do with sleep apnea/lack of O2. He is going to put me on PREDNISONE for 3 months. Yuck! I don't really want to do this but.....we'll trial it for 3 months and then may try Viagra for the PH. But the COST of Viagra is like a down pmt on a house! every month.... But that's where I am today. Sleep study and Prednisone. SOB is getting worse so it's time to do something, although the SATS don't drop drastically. My 6MW dropped to 90.... I go back in May again. Rates will go up at the INN but I'm calling on Monday and requesting a rate adjustment 'cause we are there regularly. Hugs to you. MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Wednesday, January 27, 2010 5:34 PM To: Breathe-Support Subject: Re: (unknown) Sher, When I lived on the coast I had wavy hair and I didn't have to have perms. I hate them. At least I don't have to pay for them. Thank you for the compliment. Yes, it is what it is. Isn't tomorrow your appointment at the UW? Are you at the inn or are you going to set out early in the morning. My April appointment is at 11:30. It takes us about 7 hours to get there but I can stay at my daughter's in Gig Harbor and go from there so I won't have to rent a room.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren's,Fibromyalgia Idaho From: Sher <bofus6 (AT) verizon (DOT) net>Subject: Re: (unknown)To: Breathe-Support Date: Wednesday, January 27, 2010, 10:57 AM BJ.... I'm letting my hair grow naturally too. White or whatever color shows itself! I'm tired of the constant coloring. I gave up perms years ago. My 'fried and dye' routine I called it. Actually, it doesn't look too bad. I'm not totally white but oh well if I turn a 'white-head' . Your hair is lovely BJ and I know meds makes a huge difference in the quality of our hair. It is what it is, huh friend! MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,.Don't fret about tomorrow, God is already there! From: Beverley Joy Sent: Tuesday, January 26, 2010 9:37 PM To: Breathe-Support@ yahoogroups. com Subject: Re: (unknown) I like my white hair. I earned everyone of them and coloring is too much anymore.Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho- No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2010 Report Share Posted February 1, 2010 Sher, I did go early. I was there 30 minutes before the show sarted, so I has plenty of time to stop coughing. Thank you for replying. > > > > Subject: Re: (unknown) > To: Breathe-Support > Date: Wednesday, January 27, 2010, 10:57 AM > > > > > BJ.... I'm letting my hair grow naturally too. White or whatever color shows itself! > I'm tired of the constant coloring. I gave up perms years ago. My 'fried and dye' routine I called it. Actually, it doesn't look too bad. I'm not totally white but oh well if I turn a 'white-head' . > Your hair is lovely BJ and I know meds makes a huge difference in the quality of our hair. > It is what it is, huh friend! > MamaSher; IPF 2006; Cellular NSIP, PH, 2009, OR,. > Don't fret about tomorrow, God is already there! > > > > From: Beverley Joy > Sent: Tuesday, January 26, 2010 9:37 PM > To: Breathe-Support@ yahoogroups. com > Subject: Re: (unknown) > > > I like my white hair. I earned everyone of them and coloring is too much anymore. > > Beverley Joy,71,PF, Chronic HP, birds and mold 1-09,Sjogren' s,Fibromyalgia Idaho > > - > > > > > > > -------------------------------------------------------------------------------- > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 > > > > > > -------------------------------------------------------------------------------- > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2658 - Release Date: 01/30/10 11:35:00 > Quote Link to comment Share on other sites More sharing options...
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