Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 I graduated Northeast High School in 1965 Temple in 1983 and 1984Beaver in 1994 Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Tuesday, June 2, 2009, 11:22 PM Adrienne, Go OWLSMy son and d-i-l live in West Mount Airy...right on Lincoln Driveand Mt Pleasant !I grew up in West Oak Lane at Fayette and Vernon road!About three blocks from what used to be Temple Stadium!I graduated from Temple a very long time ago...1965!We could start our own support group....there are 4 of us living not too far away from each other.Joyce lives in Langhorn, Patti lives in Cherry Hill, I live in Blue Bell and you live in Mt Airy.We're really only 45 minutes at the most from any one of us! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Adrienne Bishop wrote: Hi , I live in the West Mt. Airy section of Philly and go to Temple. I have lived here all my life other than my college years. I have many friends who went to Girls High School, but I went to the other GHS (Germantown High School). It is a shame that there are not more support groups for IPF. Maybe if we complain enough there will be more. Take care!! From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 I graduated Northeast High School in 1965 Temple in 1983 and 1984Beaver in 1994 Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Tuesday, June 2, 2009, 11:22 PM Adrienne, Go OWLSMy son and d-i-l live in West Mount Airy...right on Lincoln Driveand Mt Pleasant !I grew up in West Oak Lane at Fayette and Vernon road!About three blocks from what used to be Temple Stadium!I graduated from Temple a very long time ago...1965!We could start our own support group....there are 4 of us living not too far away from each other.Joyce lives in Langhorn, Patti lives in Cherry Hill, I live in Blue Bell and you live in Mt Airy.We're really only 45 minutes at the most from any one of us! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Adrienne Bishop wrote: Hi , I live in the West Mt. Airy section of Philly and go to Temple. I have lived here all my life other than my college years. I have many friends who went to Girls High School, but I went to the other GHS (Germantown High School). It is a shame that there are not more support groups for IPF. Maybe if we complain enough there will be more. Take care!! From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Penn just upped the transplant age limit to 70 where is Montgomery Hospital? that's a new one to me Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Wednesday, June 3, 2009, 12:01 AM Adrienne, I go to The U of P Lung Center...Dr. Horace Delisser MD, I am not a candidate for transplant because he says that I'm not sick enough and I'm 65+I'll take the " not sick enough" reason !!!! the 65+ I can't do anything about anyway.I have been stable with my form of PF ( NSIP) since diagnosis Summer of 2005..Prednisoneand Imuran, Mepron and so-o-o-o many more drugs to counteract the side effects of them.But I am stable !!!!I also use a more local pulmonologist at Montgomery Hospital because I can get to him faster( 10 MINUTES)and he's more available if I need attention quickly...Dr. Delisser teaches, does research at NIH andonly sees patients twice monthly on Mondays!!! I email him and call his clinical nurse with questions andhave all my major testing ( PFT's, HRCT. and echo-cardiogram and 6 minute walk) done at Penn. The localdoc keeps me healthy..sort of! I did spend 3 miserable days in the hospital in March with acute bronchitis thatno one( my GP and the local pulmo) could get under control without mega doses of steroids and anti-biotics! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Zion wrote: Adrienne, Go OWLSMy son and d-i-l live in West Mount Airy...right on Lincoln Driveand Mt Pleasant !I grew up in West Oak Lane at Fayette and Vernon road!About three blocks from what used to be Temple Stadium!I graduated from Temple a very long time ago...1965!We could start our own support group....there are 4 of us living not too far away from each other.Joyce lives in Langhorn, Patti lives in Cherry Hill, I live in Blue Bell and you live in Mt Airy.We're really only 45 minutes at the most from any one of us! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Adrienne Bishop wrote: Hi , I live in the West Mt. Airy section of Philly and go to Temple. I have lived here all my life other than my college years. I have many friends who went to Girls High School, but I went to the other GHS (Germantown High School). It is a shame that there are not more support groups for IPF. Maybe if we complain enough there will be more. Take care!! From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Penn just upped the transplant age limit to 70 where is Montgomery Hospital? that's a new one to me Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support Date: Wednesday, June 3, 2009, 12:01 AM Adrienne, I go to The U of P Lung Center...Dr. Horace Delisser MD, I am not a candidate for transplant because he says that I'm not sick enough and I'm 65+I'll take the " not sick enough" reason !!!! the 65+ I can't do anything about anyway.I have been stable with my form of PF ( NSIP) since diagnosis Summer of 2005..Prednisoneand Imuran, Mepron and so-o-o-o many more drugs to counteract the side effects of them.But I am stable !!!!I also use a more local pulmonologist at Montgomery Hospital because I can get to him faster( 10 MINUTES)and he's more available if I need attention quickly...Dr. Delisser teaches, does research at NIH andonly sees patients twice monthly on Mondays!!! I email him and call his clinical nurse with questions andhave all my major testing ( PFT's, HRCT. and echo-cardiogram and 6 minute walk) done at Penn. The localdoc keeps me healthy..sort of! I did spend 3 miserable days in the hospital in March with acute bronchitis thatno one( my GP and the local pulmo) could get under control without mega doses of steroids and anti-biotics! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Zion wrote: Adrienne, Go OWLSMy son and d-i-l live in West Mount Airy...right on Lincoln Driveand Mt Pleasant !I grew up in West Oak Lane at Fayette and Vernon road!About three blocks from what used to be Temple Stadium!I graduated from Temple a very long time ago...1965!We could start our own support group....there are 4 of us living not too far away from each other.Joyce lives in Langhorn, Patti lives in Cherry Hill, I live in Blue Bell and you live in Mt Airy.We're really only 45 minutes at the most from any one of us! Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion†Bob Marley Vinca Minor-periwinkle is my flower Adrienne Bishop wrote: Hi , I live in the West Mt. Airy section of Philly and go to Temple. I have lived here all my life other than my college years. I have many friends who went to Girls High School, but I went to the other GHS (Germantown High School). It is a shame that there are not more support groups for IPF. Maybe if we complain enough there will be more. Take care!! From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009  Joyce, You really are younger than me!!!I graduated Temple in 65!!! I got my MA in 1972 from Glassboro ( now Rowen) during and after Adam and Andi were born. and we lived in Cherry Hill at the time.The Reading team from Temple ( Marjorie et all had moved from Temple to Glassboro) Montgomery Hospital is now part of the Einstein/Jefferson network and is Norristown. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Joyce T Rosenberg wrote: Penn just upped the transplant age limit to 70  where is Montgomery Hospital? that's a new one to me Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com> Subject: Support Groups at Penn or Temple Lung Center To: Breathe-Support@ yahoogroups. . com Date: Sunday, May 31, 2009, 2:47 PM  I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009  Joyce, You really are younger than me!!!I graduated Temple in 65!!! I got my MA in 1972 from Glassboro ( now Rowen) during and after Adam and Andi were born. and we lived in Cherry Hill at the time.The Reading team from Temple ( Marjorie et all had moved from Temple to Glassboro) Montgomery Hospital is now part of the Einstein/Jefferson network and is Norristown. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Joyce T Rosenberg wrote: Penn just upped the transplant age limit to 70  where is Montgomery Hospital? that's a new one to me Pink Joyce (IPF 3/06)  IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com> Subject: Support Groups at Penn or Temple Lung Center To: Breathe-Support@ yahoogroups. . com Date: Sunday, May 31, 2009, 2:47 PM  I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Joyce, That is kind of you to think I might be a college student. It takes me back. I've been out of school for many many years. When I mentioned Temple I meant Temple's Lung Center. From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Heh, not too bad an idea.. so i finally found my way home.. computer even the other day giving me trouble. well, don't forget us meeting for lunch, dinner on a weekend just let me know when and where.. talk later . have temple and all my docs; cardiologist,thoracic surgeon, lung (my Friend ha ha) and then social worker and nutritionist. long afternoon and i appear to continue to hold fluid.. just what i need more weight to carry around. Patti ipf 7/06, PH 2/07,raynauds '99, scleroderma From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Heh, not too bad an idea.. so i finally found my way home.. computer even the other day giving me trouble. well, don't forget us meeting for lunch, dinner on a weekend just let me know when and where.. talk later . have temple and all my docs; cardiologist,thoracic surgeon, lung (my Friend ha ha) and then social worker and nutritionist. long afternoon and i appear to continue to hold fluid.. just what i need more weight to carry around. Patti ipf 7/06, PH 2/07,raynauds '99, scleroderma From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 3, 2009 Report Share Posted June 3, 2009 Patti,It's good to see you posting again.  I am also having water retention issues!!!Have they been able to figure out why? My GP does not think my water weight ( midriff and legs are the worst) is due to the mega doses of steroids while I was in the Hospital. I've had some relief by taking Bumex( diuretic) but I'm not going to be able to take it daily...it's too strong for me to use as a daily med. and the HCTZ did nothing! Any ideas from your docs? I'm doing my best with watching salt  and was told to watch carbs too ( especially the white carbs) I'm trying! Yes...let's try to do a week-end lunch soon. Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Patti Friend wrote: Heh, not too bad an idea.. so i finally found my way home.. computer even the other day giving me trouble. well, don't forget us meeting for lunch, dinner on a weekend just let me know when and where.. talk later . have temple and all my docs; cardiologist,thoracic surgeon, lung (my Friend ha ha) and then social worker and nutritionist. long afternoon and i appear to continue to hold fluid.. just what i need more weight to carry around. Patti ipf 7/06, PH 2/07,raynauds '99, scleroderma From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com> Subject: Support Groups at Penn or Temple Lung Center To: Breathe-Support@ yahoogroups. . com Date: Sunday, May 31, 2009, 2:47 PM  I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Hi , the edema started when i first went to Florida last May. very severe. In Feb. occurred where i gained 10 pounds overnight, wheezing,shortness of breath increased and both feet quite swollen.. they admitted me do major work up thinking they were going to have to put me on active list; they thought Pulm. HTN worsened, had increased jugular vein distention. No clots, etc. So increased lasix to 80mg daily. then my Primary doc saw me as temple thought Norvasc was causing issue so stopped that. so my primary increased me to 80 in am and 40 in afternoon. Now this started on Monday. NO wheezing but productive cough.. Cardiologist says heart good it is my lung.. No one has a clear understanding why this is happened. Back on Norvasc (didn't change anything when stopped) and still with 120mg lasix daily. probably going to need to do bumex or zaroxyln in between. See temple docs today.. Me i think humidity just goes into my feet and actually i get abdominal swelling also.. so . i do watch sodium intake, stay away from processed food as much as possible. sorry for being so long winded.. Good to hear from you will be happy when we get together.. my computer at home won't let me send all the time laptop.. need to get my reg. PC running.. Funny i was going to throw this out to anyone who can tell me about what can be otherwise causing the water gain. even happens just when sleeping... Patti, ipf7/06,raynauds '91, scleroderma, Pulm HTN 2'07 From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Patti, The edema can be a real puzzle sometimes. I'm assuming they've checked the obvious and looked closely at your renal function? There is definitely fluid exchange that takes place during respiration but this seems like an awful lot of edema to be related directly to decreased lung function. It's good to know your heart is ok, perhaps a consult with a nephrologist? I don't understand it any better than you do. I mean one would think with the amount and variety of diuretics that you are taking that you would be dry as a bone and weigh about 14 ounces. The human body is a mystery! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Thursday, June 4, 2009 8:20:27 AMSubject: Re: Support Groups at Penn or Temple Lung Center Hi , the edema started when i first went to Florida last May. very severe. In Feb. occurred where i gained 10 pounds overnight, wheezing,shortness of breath increased and both feet quite swollen.. they admitted me do major work up thinking they were going to have to put me on active list; they thought Pulm. HTN worsened, had increased jugular vein distention. No clots, etc. So increased lasix to 80mg daily. then my Primary doc saw me as temple thought Norvasc was causing issue so stopped that. so my primary increased me to 80 in am and 40 in afternoon. Now this started on Monday. NO wheezing but productive cough.. Cardiologist says heart good it is my lung.. No one has a clear understanding why this is happened. Back on Norvasc (didn't change anything when stopped) and still with 120mg lasix daily. probably going to need to do bumex or zaroxyln in between. See temple docs today.. Me i think humidity just goes into my feet and actually i get abdominal swelling also.. so . i do watch sodium intake, stay away from processed food as much as possible. sorry for being so long winded.. Good to hear from you will be happy when we get together.. my computer at home won't let me send all the time laptop.. need to get my reg. PC running.. Funny i was going to throw this out to anyone who can tell me about what can be otherwise causing the water gain. even happens just when sleeping... Patti, ipf7/06,raynauds '91, scleroderma, Pulm HTN 2'07 From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com>Subject: Support Groups at Penn or Temple Lung CenterTo: Breathe-Support@ yahoogroups. . comDate: Sunday, May 31, 2009, 2:47 PM I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 4, 2009 Report Share Posted June 4, 2009 Patti, I can't take Lasix...too much sulfa in that drug for me!!! They have ruled out heart and kidney function..so now what? Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild†PH/10/07 and Reynaud’s too!! No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara     “I’m gonna be iron like a lion in Zionâ€Â Bob Marley Vinca Minor-periwinkle is my flower   Patti Friend wrote: Hi , the edema started when i first went to Florida last May. very severe. In Feb. occurred where i gained 10 pounds overnight, wheezing,shortness of breath increased and both feet quite swollen.. they admitted me do major work up thinking they were going to have to put me on active list; they thought Pulm. HTN worsened, had increased jugular vein distention.  No clots, etc. So increased lasix to 80mg daily. then my Primary doc saw me as temple thought Norvasc was causing issue so stopped that. so my primary increased me to 80 in am and 40 in afternoon. Now this started on Monday. NO wheezing but productive cough.. Cardiologist says heart good it is my lung.. No one has a clear understanding why this is happened. Back on Norvasc (didn't change anything when stopped) and still with 120mg lasix daily. probably going to need to do bumex or zaroxyln in between. See temple docs today.. Me i think humidity just goes into my feet and actually i get abdominal swelling also.. so . i do watch sodium intake, stay away from processed food as much as possible. sorry for being so long winded.. Good to hear from you will be happy when we get together.. my computer at home won't let me send all the time laptop.. need to get my reg. PC running..  Funny i was going to throw this out to anyone who can tell me about what can be otherwise causing the water gain. even happens just when sleeping... Patti, ipf7/06,raynauds '91, scleroderma, Pulm HTN 2'07 From: Adrienne Bishop <eggie5909 (AT) yahoo (DOT) com> Subject: Support Groups at Penn or Temple Lung Center To: Breathe-Support@ yahoogroups. . com Date: Sunday, May 31, 2009, 2:47 PM  I was curious if anyone knows if Penn or Temple has any support groups that meet on any type of regular basis (i.e. Monthly, Quarterly)? And if so is there a contact person? Thank you Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2009 Report Share Posted June 6, 2009 -I was told " that sometimes it is more of a cosmetic issue " .. LOL my breathing changes and my weight changes before i even think to look at my feet..also, it shows up in my abdomen.. so i am not getting it.. i know with me what it isnt and it is even what is called dependent edema when your feet are down all day.. i am sleeping and wake up with it and it just increases... Also, watching sodium intake and processed food.. shame i just love food for the old taste i remember and the fact it is comfort at times.. lol..Guess we stuck... patti -- In Breathe-Support , Zion wrote: > > *Patti*, I can't take Lasix...too much sulfa in that drug for me!!! > They have ruled out heart and kidney function..so now what? > > > Z 65, fibriotic NSIP/05/PA > > > And “mild†PH/10/07 and Reynaud’s too!! > > No, NSIP was not self-inflicted…I never smoked! > > Potter, reader,carousel lover and MomMom to Darah and Sara > > “*I’m gonna be iron like a lion in Zion†Bob Marley* > > *Vinca Minor-periwinkle is my flower* > > > > > > > > > > Patti Friend wrote: > > > > > > Hi , the edema started when i first went to Florida last May. > > very severe. In Feb. occurred where i gained 10 pounds overnight, > > wheezing,shortness of breath increased and both feet quite swollen.. > > they admitted me do major work up thinking they were going to have to > > put me on active list; they thought Pulm. HTN worsened, had increased > > jugular vein distention. No clots, etc. So increased lasix to 80mg > > daily. then my Primary doc saw me as temple thought Norvasc was > > causing issue so stopped that. so my primary increased me to 80 in am > > and 40 in afternoon. Now this started on Monday. NO wheezing but > > productive cough.. Cardiologist says heart good it is my lung.. No one > > has a clear understanding why this is happened. Back on Norvasc > > (didn't change anything when stopped) and still with 120mg lasix > > daily. probably going to need to do bumex or zaroxyln in between. See > > temple docs today.. Me i think humidity just goes into my feet and > > actually i get abdominal swelling also.. so . i do watch sodium > > intake, stay away from processed food as much as possible. sorry for > > being so long winded.. Good to hear from you will be happy when we > > get together.. my computer at home won't let me send all the time > > laptop.. need to get my reg. PC running.. > > > > Funny i was going to throw this out to anyone who can tell me about > > what can be otherwise causing the water gain. even happens just when > > sleeping... Patti, ipf7/06,raynauds '91, scleroderma, Pulm HTN 2'07 > > > > > >>>>>> > >>>>>> > >>>>>> From: Adrienne Bishop > >>>>>> Subject: Support Groups > >>>>>> at Penn or Temple Lung Center > >>>>>> To: Breathe-Support@ yahoogroups. . com > >>>>>> Date: Sunday, May 31, 2009, 2:47 PM > >>>>>> > >>>>>> I was curious if anyone knows if Penn or > >>>>>> Temple has any support groups that meet > >>>>>> on any type of regular basis (i.e. > >>>>>> Monthly, Quarterly)? And if so is there > >>>>>> a contact person? > >>>>>> Thank you > >>>>>> > >>>>>> > >>>>>> > >>>>>> > >>>>> > >>> > >> > > > > > Quote Link to comment Share on other sites More sharing options...
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