Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 MB ... oh this is indeed good news. You will sleep well tonight! Thanks God. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Still stable That's the news we all hope for. PFT essentially unchanged. Echo well within normal limits and no crackles to be heard this time around. So I am proclaimed stable and sent on my way. I'm tired and happy. I asked for and was given a prescription for another round of pulmonary rehab. I haven't been in nearly 3 years. I know how much it helped me last time and I'm confident it will help me this time around also. I go back again in September. I have an upper GI scheduled in early September and then another visit to Dr. on, PFT and this time an HRCT just cause I haven't had one in awhile. These visits aren't alot of fun but it's good to find out I'm still stable and can continue to live my life the way I like to. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Beth, I'm curious why you had an ECHO. I'm new to this IPF and have only had CT's, PFT's, 6MWT's. Are there other tests I should be requesting. I don't have any other pulmonary or coronary problems, but would like to know should I be requesting more of my doctor? Thanks, Adrienne Subject: Still stableTo: Breathe-Support Date: Monday, June 22, 2009, 7:48 PM That's the news we all hope for. PFT essentially unchanged. Echo well within normal limits and no crackles to be heard this time around.. So I am proclaimed stable and sent on my way. I'm tired and happy. I asked for and was given a prescription for another round of pulmonary rehab. I haven't been in nearly 3 years. I know how much it helped me last time and I'm confident it will help me this time around also. I go back again in September. I have an upper GI scheduled in early September and then another visit to Dr. on, PFT and this time an HRCT just cause I haven't had one in awhile. These visits aren't alot of fun but it's good to find out I'm still stable and can continue to live my life the way I like to. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Adrienne, That's a perfectly valid question. I wouldn't have known the answer a couple of years ago so don't feel like this is all stuff you should already know. No one was born knowing this stuff. Most doctors who specialize in interstitial lung disease recommend regular echocardiograms as part of normal care. At Duke the typical patient with some kind of fibrosis has an echo once a year to check for pulmonary hypertension. PH is one of the most common complications of many kinds of lung disease but especially restrictive lung disease. Our hearts have to work much harder than they should to get blood through our stiffening lungs. This causes pressure in our pulmonary arteries to increase and can eventually lead to right sided heart failure. I have an echo twice a year because at the time of my original diagnosis three years ago I was in congestive heart failure. My disease had progressed to a point where my heart was unable to pump adequately to sustain my life. I am very lucky to still be here. My heart recovered once my lung disease was under better control (thank you prednisone) and I've not had any cardiac problems since. But I will continue to have echos twice a year to catch anything before it gets too severe. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, June 22, 2009 5:36:50 PMSubject: Re: Still stable Beth, I'm curious why you had an ECHO. I'm new to this IPF and have only had CT's, PFT's, 6MWT's. Are there other tests I should be requesting. I don't have any other pulmonary or coronary problems, but would like to know should I be requesting more of my doctor? Thanks, Adrienne From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Still stableTo: Breathe-Support@ yahoogroups. comDate: Monday, June 22, 2009, 7:48 PM That's the news we all hope for. PFT essentially unchanged. Echo well within normal limits and no crackles to be heard this time around.. So I am proclaimed stable and sent on my way. I'm tired and happy. I asked for and was given a prescription for another round of pulmonary rehab. I haven't been in nearly 3 years. I know how much it helped me last time and I'm confident it will help me this time around also. I go back again in September. I have an upper GI scheduled in early September and then another visit to Dr. on, PFT and this time an HRCT just cause I haven't had one in awhile. These visits aren't alot of fun but it's good to find out I'm still stable and can continue to live my life the way I like to. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 24, 2009 Report Share Posted June 24, 2009 Adrienne have you been to pulmonary rehab? if not, ask your doctor about that too Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: Still stableTo: Breathe-Support Date: Tuesday, June 23, 2009, 4:51 PM Thanks Beth, When I see my doc next month I will ask him about the ECHO. . From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Still stableTo: Breathe-Support@ yahoogroups. comDate: Monday, June 22, 2009, 7:48 PM That's the news we all hope for. PFT essentially unchanged. Echo well within normal limits and no crackles to be heard this time around.. So I am proclaimed stable and sent on my way. I'm tired and happy. I asked for and was given a prescription for another round of pulmonary rehab. I haven't been in nearly 3 years. I know how much it helped me last time and I'm confident it will help me this time around also. I go back again in September. I have an upper GI scheduled in early September and then another visit to Dr. on, PFT and this time an HRCT just cause I haven't had one in awhile. These visits aren't alot of fun but it's good to find out I'm still stable and can continue to live my life the way I like to. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 27, 2009 Report Share Posted June 27, 2009 Hi , Thanks for the info. My rehab place does not have a maintenance program. I was told they would like to have one, but of course the problem is where to find the money. Adrienne Subject: Re: Still stableTo: Breathe-Support Date: Thursday, June 25, 2009, 9:34 PM Adrienne,The place I go to said that if you're hospitalized or enough time has gone by, ins. will cover again. Also, after rehab there's a maintenance program that's $25 per month. You go 3X per week. You never know. Your place might have something similar. It's worth checking into.Nan 49, MASSlist started '82PF '08Asthma '09> > > From: Beth <mbmurtha (AT) yahoo (DOT) com>> Subject: Still stable> To: Breathe-Support@ yahoogroups. com> Date: Monday, June 22, 2009, 7:48 PM> > > > > > > > That's the news we all hope for. PFT essentially unchanged. Echo well within normal limits and no crackles to be heard this time around... So I am proclaimed stable and sent on my way. I'm tired and happy. I asked for and was given a prescription for another round of pulmonary rehab. I haven't been in nearly 3 years. I know how much it helped me last time and I'm confident it will help me this time around also. > I go back again in September. I have an upper GI scheduled in early September and then another visit to Dr. on, PFT and this time an HRCT just cause I haven't had one in awhile. > These visits aren't alot of fun but it's good to find out I'm still stable and can continue to live my life the way I like to.> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
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