Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Leanne, Good luck with the weight thing. It took me over a year to lose weight. I am 5ft. 4in. and at one time weighed 200lbs. I went to weight watchers and it helped tremendously. It also helped my breathing. I know that it is hard to be motivated when you are tired, but I'll be here cheering you on!!! Tillman PF/Hermansky Pudlak Syndrome 2002 www.myspace.com/karenshpskorner _________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network IncMy NC phone: or NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 surgeon meeting Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.19/955 - Release Date: 8/15/2007 4:55 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Leanne, Good luck with the weight thing. It took me over a year to lose weight. I am 5ft. 4in. and at one time weighed 200lbs. I went to weight watchers and it helped tremendously. It also helped my breathing. I know that it is hard to be motivated when you are tired, but I'll be here cheering you on!!! Tillman PF/Hermansky Pudlak Syndrome 2002 www.myspace.com/karenshpskorner _________________________________________________ Tillman Regional Coordinator Mid Atlantic USAHermansky-Pudlak Syndrome Network IncMy NC phone: or NY home office 1. / fax * HPS is a genetic disorder that is characterized by albinism, visual impairment, and a bleeding problem.Some genetic mutations can include colitis and pulmonary fibrosis.* http://www.hpsnetwork.org One South Road Oyster Bay, NY 11771 surgeon meeting Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. No virus found in this incoming message.Checked by AVG Free Edition. Version: 7.5.476 / Virus Database: 269.11.19/955 - Release Date: 8/15/2007 4:55 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Leanne, How frustrating! I'm glad the biopsy was normal but I wonder what is going on with your heart?? Maybe it's too much stress? Hmmmm? It always amazes me when as sick as I am, someone says I'm "not sick enough" for transplant. Keep reminding myself that's a good thing! Selfishly of course I'd rather you got to come to Chatanooga. It will be that much more fun with you there!! I'll be prayin as always sweetpea! Beth in NY Fibrotic NSIP 06/06 "At the evening of life we shall be judged on our love." St of the Cross surgeon meeting Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga! !!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Hi Hon, That is what has happened my last two visits. My Tx Dr said " don't make an appointment,just call when you have lost the weight. " FOFL.. like thats gonna happen.. so I have decided just not go back..I read that Shands transplants until the age of 65.. So if I knew exactly what to expect down the road I don't think I would go back at all. I know what my pft's would only show my breathing isn't good (well duh) why bother?. " I HATE THIS DISEASE! " Enough of me. So did they give you any information on what happens next? Just wait or wait? Walk your fanny off, duct tape your mouth..I need to sew my mouth shut.. I have decided to just be happy until I'm not ! how's that.. I love you and know it wont be long until you are breathin easy. Now Chatanooga is a NEW happy again.. Oh I do hope it all happens just like I dream it will. I'm ready to pack.. Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back, Faith looks up. " Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 16, 2007 Report Share Posted August 16, 2007 Hi Hon, That is what has happened my last two visits. My Tx Dr said " don't make an appointment,just call when you have lost the weight. " FOFL.. like thats gonna happen.. so I have decided just not go back..I read that Shands transplants until the age of 65.. So if I knew exactly what to expect down the road I don't think I would go back at all. I know what my pft's would only show my breathing isn't good (well duh) why bother?. " I HATE THIS DISEASE! " Enough of me. So did they give you any information on what happens next? Just wait or wait? Walk your fanny off, duct tape your mouth..I need to sew my mouth shut.. I have decided to just be happy until I'm not ! how's that.. I love you and know it wont be long until you are breathin easy. Now Chatanooga is a NEW happy again.. Oh I do hope it all happens just like I dream it will. I'm ready to pack.. Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back, Faith looks up. " Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 Leanne, My husband's cardio reccommended he drink 8 oz of pure concord grape juice for his heart after his heart failure. His heart function went from 13% up to 40%. don't know if this will help, but it sure can't hurt to try. A HP/COPD 6/06TN Leanne Storch wrote: Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 Thanks for the info. . I am going to get some for too. How are You? Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back, Faith looks up. " Leanne, My husband's cardio reccommended he drink 8 oz of pure concord grape juice for his heart after his heart failure. His heart function went from 13% up to 40%. don't know if this will help, but it sure can't hurt to try. A HP/COPD 6/06TN Leanne Storch wrote: Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 Thanks for the info. . I am going to get some for too. How are You? Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back, Faith looks up. " Leanne, My husband's cardio reccommended he drink 8 oz of pure concord grape juice for his heart after his heart failure. His heart function went from 13% up to 40%. don't know if this will help, but it sure can't hurt to try. A HP/COPD 6/06TN Leanne Storch wrote: Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 Thanks for the info. . I am going to get some for too. How are You? Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back, Faith looks up. " Leanne, My husband's cardio reccommended he drink 8 oz of pure concord grape juice for his heart after his heart failure. His heart function went from 13% up to 40%. don't know if this will help, but it sure can't hurt to try. A HP/COPD 6/06TN Leanne Storch wrote: Hi everyone, Thanks for everyone's concern about today's meeting. It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted. Leanne Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online. Boardwalk for $500? In 2007? Ha! Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 , My hubby swears by grape juice. He started drinking it and doesn't have to use reflux meds any more. What they don't tell you on t.v. is that grape juice is every bit as good for you as red wine. So no need to get sauced up to help your heart. Besides that most of us are on meds that say no alcohol. P posted a site once about different fruit juices and what they did for the body. I have it somewhere but ????? Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> Hi everyone,> > Thanks for everyone's concern about today's meeting. > > It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. > > So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted.> > Leanne> > > ---------------------------------> Building a website is a piece of cake. > Yahoo! Small Business gives you all the tools to get online. > > > > > ---------------------------------> Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 , My hubby swears by grape juice. He started drinking it and doesn't have to use reflux meds any more. What they don't tell you on t.v. is that grape juice is every bit as good for you as red wine. So no need to get sauced up to help your heart. Besides that most of us are on meds that say no alcohol. P posted a site once about different fruit juices and what they did for the body. I have it somewhere but ????? Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> Hi everyone,> > Thanks for everyone's concern about today's meeting. > > It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. > > So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted.> > Leanne> > > ---------------------------------> Building a website is a piece of cake. > Yahoo! Small Business gives you all the tools to get online. > > > > > ---------------------------------> Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 18, 2007 Report Share Posted August 18, 2007 , My hubby swears by grape juice. He started drinking it and doesn't have to use reflux meds any more. What they don't tell you on t.v. is that grape juice is every bit as good for you as red wine. So no need to get sauced up to help your heart. Besides that most of us are on meds that say no alcohol. P posted a site once about different fruit juices and what they did for the body. I have it somewhere but ????? Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> Hi everyone,> > Thanks for everyone's concern about today's meeting. > > It was short and sweet. The doc basically said I don't want to see you until you lose more weight. I was a little upset because my husband took time off to make this meeting and we didn't really discuss anything. It does sound as if I will not be listed this month or anytime real soon. I'm so confused. The result of my heart biopsy was normal which is a good thing, but there is some concern as my heart is functioning below normal and they don't know why. I know within my heart that I'm not sick enough and this will buy me more time to get down to fighting weight. > > So, the other good news is I think I may be able to go to Chattanooga!!!!!!! I have a call into my lung transplant coordinator to make sure it won't be a problem. I'll keep you posted.> > Leanne> > > ---------------------------------> Building a website is a piece of cake. > Yahoo! Small Business gives you all the tools to get online. > > > > > ---------------------------------> Boardwalk for $500? In 2007? Ha! > Play Monopoly Here and Now (it's updated for today's economy) at Yahoo! Games.> Quote Link to comment Share on other sites More sharing options...
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