Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Hi and Robb, I am sorry to welcome you to this group. I know y'all are devastated with this monster news. Don't panic you still have living to do. I know when you are first told this diagnosis it is like the end of the world.. It is not. This group is a bunch of wonderful loving, caring, praying people who have all been where you are. " WE GET IT. " this is the place to come to get questions answered and let it all out. How was your Diagnosis made? ie CT, x-ray, OLB ??? God Bless you. we will be praying for you. Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back Faith looks up. " Hi everyone, my name is and my husband Robb has just been told he has IPF. We are both very scared and have no idea what to expect. On Thursday we go to Madison University to see a specialist who works with IPF. We already have a page and a half of questions for him. Is there anything specialwe should be asking him? Thanks for your help in advance it is much appreciated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Robb had a Lung Biopsy done and that is how they confirmed it. We don't know what stage he is at, if this does have stages. I have been doing some research on line and reading alot about it. I know we will know more after Thursday. So many questions to ask, so many worries. I think this will be good place to talk with people. We are off to the doctors office now to get all his files and exrays and lab reports to take tomorrow. Thanks for responding and I will let you know what happens Thursday. > > Hi everyone, my name is and my husband Robb has just been told he > has IPF. We are both very scared and have no idea what to expect. On > Thursday we go to Madison University to see a specialist who works with > IPF. We already have a page and a half of questions for him. Is there > anything specialwe should be asking him? Thanks for your help in > advance it is much appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Robb had a Lung Biopsy done and that is how they confirmed it. We don't know what stage he is at, if this does have stages. I have been doing some research on line and reading alot about it. I know we will know more after Thursday. So many questions to ask, so many worries. I think this will be good place to talk with people. We are off to the doctors office now to get all his files and exrays and lab reports to take tomorrow. Thanks for responding and I will let you know what happens Thursday. > > Hi everyone, my name is and my husband Robb has just been told he > has IPF. We are both very scared and have no idea what to expect. On > Thursday we go to Madison University to see a specialist who works with > IPF. We already have a page and a half of questions for him. Is there > anything specialwe should be asking him? Thanks for your help in > advance it is much appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 keep a copy of everything.. records can be very important. You will be seeing different Dr.'s and they will want copies so you need them. If he suggests prednisone get ALL the reasons and discuss it thoroughly. Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back Faith looks up. " Robb had a Lung Biopsy done and that is how they confirmed it. We don't know what stage he is at, if this does have stages. I have been doing some research on line and reading alot about it. I know we will know more after Thursday. So many questions to ask, so many worries. I think this will be good place to talk with people. We are off to the doctors office now to get all his files and exrays and lab reports to take tomorrow. Thanks for responding and I will let you know what happens Thursday. > > Hi everyone, my name is and my husband Robb has just been told he > has IPF. We are both very scared and have no idea what to expect. On > Thursday we go to Madison University to see a specialist who works with > IPF. We already have a page and a half of questions for him. Is there > anything specialwe should be asking him? Thanks for your help in > advance it is much appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 keep a copy of everything.. records can be very important. You will be seeing different Dr.'s and they will want copies so you need them. If he suggests prednisone get ALL the reasons and discuss it thoroughly. Love and Prayers, Peggy ipf Florida " Worry looks around, Sorry looks back Faith looks up. " Robb had a Lung Biopsy done and that is how they confirmed it. We don't know what stage he is at, if this does have stages. I have been doing some research on line and reading alot about it. I know we will know more after Thursday. So many questions to ask, so many worries. I think this will be good place to talk with people. We are off to the doctors office now to get all his files and exrays and lab reports to take tomorrow. Thanks for responding and I will let you know what happens Thursday. > > Hi everyone, my name is and my husband Robb has just been told he > has IPF. We are both very scared and have no idea what to expect. On > Thursday we go to Madison University to see a specialist who works with > IPF. We already have a page and a half of questions for him. Is there > anything specialwe should be asking him? Thanks for your help in > advance it is much appreciated. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 I think keeping copies of all records, labs etc. is excellent advice. It's my biggest pet peeve about my local docs. My docs are great, but their offices can be a pain in the you-know-what. I'm always trying to track down labs etc. for NIH and it usually takes four to five phone calls etc. They always say, "You can drop by and pick that up..." But, I don't drive, so no, I can't just "drop by..." Grrrrr.... Now, even if I have to wait all afternoon, if it's a test that the results will come back the same day, I don't leave. I'll go get a bite to eat across from the hospital etc. and then come back and sit and wait for the test results. I know of one HPS'er who scanned all his records onto a memory stick - when he has to go to the ER (he has a lot of bleeding issues) - he just hands them the memory stick with everything on it. Hermansky-Pudlak Syndrome/PF 06 www.heatherkirkwood.blogspot.com > >> > Hi everyone, my name is and my husband Robb has just been> told he> > has IPF. We are both very scared and have no idea what to expect. On> > Thursday we go to Madison University to see a specialist who works> with> > IPF. We already have a page and a half of questions for him. Is> there> > anything specialwe should be asking him? Thanks for your help in> > advance it is much appreciated.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 , The memory stick is an excellent suggestion. That's what I've done and it hangs off my key ring so if I'm out of the house all my medical records are with me! I also wear a Medic-Alert bracelet. I'm careful because I do frequent road trips by myself and I want emergency personell to have easy access to all my info so I get correct treament. Thanks! Beth in NY Fibrotic NSIP 06/06 "At the evening of life we shall be judged on our love." St of the Cross Re: New to all of this I think keeping copies of all records, labs etc. is excellent advice. It's my biggest pet peeve about my local docs. My docs are great, but their offices can be a pain in the you-know-what. I'm always trying to track down labs etc. for NIH and it usually takes four to five phone calls etc. They always say, "You can drop by and pick that up..." But, I don't drive, so no, I can't just "drop by..." Grrrrr.... Now, even if I have to wait all afternoon, if it's a test that the results will come back the same day, I don't leave. I'll go get a bite to eat across from the hospital etc. and then come back and sit and wait for the test results. I know of one HPS'er who scanned all his records onto a memory stick - when he has to go to the ER (he has a lot of bleeding issues) - he just hands them the memory stick with everything on it. Hermansky-Pudlak Syndrome/PF 06 www.heatherkirkwood .blogspot. com > >> > Hi everyone, my name is and my husband Robb has just been> told he> > has IPF. We are both very scared and have no idea what to expect. On> > Thursday we go to Madison University to see a specialist who works> with> > IPF. We already have a page and a half of questions for him. Is> there> > anything specialwe should be asking him? Thanks for your help in> > advance it is much appreciated.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 , The memory stick is an excellent suggestion. That's what I've done and it hangs off my key ring so if I'm out of the house all my medical records are with me! I also wear a Medic-Alert bracelet. I'm careful because I do frequent road trips by myself and I want emergency personell to have easy access to all my info so I get correct treament. Thanks! Beth in NY Fibrotic NSIP 06/06 "At the evening of life we shall be judged on our love." St of the Cross Re: New to all of this I think keeping copies of all records, labs etc. is excellent advice. It's my biggest pet peeve about my local docs. My docs are great, but their offices can be a pain in the you-know-what. I'm always trying to track down labs etc. for NIH and it usually takes four to five phone calls etc. They always say, "You can drop by and pick that up..." But, I don't drive, so no, I can't just "drop by..." Grrrrr.... Now, even if I have to wait all afternoon, if it's a test that the results will come back the same day, I don't leave. I'll go get a bite to eat across from the hospital etc. and then come back and sit and wait for the test results. I know of one HPS'er who scanned all his records onto a memory stick - when he has to go to the ER (he has a lot of bleeding issues) - he just hands them the memory stick with everything on it. Hermansky-Pudlak Syndrome/PF 06 www.heatherkirkwood .blogspot. com > >> > Hi everyone, my name is and my husband Robb has just been> told he> > has IPF. We are both very scared and have no idea what to expect. On> > Thursday we go to Madison University to see a specialist who works> with> > IPF. We already have a page and a half of questions for him. Is> there> > anything specialwe should be asking him? Thanks for your help in> > advance it is much appreciated.> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 Hi Here are a few site that might help you http://www.pulmonaryfibrosis.org/patient.pdf http://www.coalitionforpf.org/AboutUs/resources.asp http://www.gethealthyagain.com/pulmonaryfibrosis.html http://www.pilotforipf.org/ This last site is a good search for articles, more than you can ever read http://findarticles.com/p/search?qt=pulmonary+fibrosis & qf=free & qta=1 & tb=art & x=0 & y=0 P UIP 8/00 PH 4/07 ILL camper1993 wrote: Hi everyone, my name is and my husband Robb has just been told he has IPF. We are both very scared and have no idea what to expect. On Thursday we go to Madison University to see a specialist who works with IPF. We already have a page and a half of questions for him. Is there anything specialwe should be asking him? Thanks for your help in advance it is much appreciated. 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 15, 2007 Report Share Posted August 15, 2007 Hi Here are a few site that might help you http://www.pulmonaryfibrosis.org/patient.pdf http://www.coalitionforpf.org/AboutUs/resources.asp http://www.gethealthyagain.com/pulmonaryfibrosis.html http://www.pilotforipf.org/ This last site is a good search for articles, more than you can ever read http://findarticles.com/p/search?qt=pulmonary+fibrosis & qf=free & qta=1 & tb=art & x=0 & y=0 P UIP 8/00 PH 4/07 ILL camper1993 wrote: Hi everyone, my name is and my husband Robb has just been told he has IPF. We are both very scared and have no idea what to expect. On Thursday we go to Madison University to see a specialist who works with IPF. We already have a page and a half of questions for him. Is there anything specialwe should be asking him? Thanks for your help in advance it is much appreciated. 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 15, 2007 Report Share Posted August 15, 2007 Hi Here are a few site that might help you http://www.pulmonaryfibrosis.org/patient.pdf http://www.coalitionforpf.org/AboutUs/resources.asp http://www.gethealthyagain.com/pulmonaryfibrosis.html http://www.pilotforipf.org/ This last site is a good search for articles, more than you can ever read http://findarticles.com/p/search?qt=pulmonary+fibrosis & qf=free & qta=1 & tb=art & x=0 & y=0 P UIP 8/00 PH 4/07 ILL camper1993 wrote: Hi everyone, my name is and my husband Robb has just been told he has IPF. We are both very scared and have no idea what to expect. On Thursday we go to Madison University to see a specialist who works with IPF. We already have a page and a half of questions for him. Is there anything specialwe should be asking him? Thanks for your help in advance it is much appreciated. 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 15, 2007 Report Share Posted August 15, 2007 I just want to say thank you to everyone who has responded already, I have been having Robb read everything and he had tears in his eyes tonight about how everyone talks with each other and shares so much info and feelings. We are simple people and just want to get by in life. We care about our family and friends and now we have a new family here on the site. I know I need to go to bed and get some rest for tomorrow but am having a hard time settling down tonight. My yellow lab (Hiram) lays by Robb all the time and he knows that something is wrong. Robb always takes him everywhere and throws his ball but he is still weak after the biopsy. Thank you again from the bottom of mt heart and I will let you know what is happening when we get home tomorrow. A friend in need is a friend indeed...friends are like diamonds rare but true. > > > > > > Hi everyone, my name is and my husband Robb has just been > > told he > > > has IPF. We are both very scared and have no idea what to expect. On > > > Thursday we go to Madison University to see a specialist who works > > with > > > IPF. We already have a page and a half of questions for him. Is > > there > > > anything specialwe should be asking him? Thanks for your help in > > > advance it is much appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 I just want to say thank you to everyone who has responded already, I have been having Robb read everything and he had tears in his eyes tonight about how everyone talks with each other and shares so much info and feelings. We are simple people and just want to get by in life. We care about our family and friends and now we have a new family here on the site. I know I need to go to bed and get some rest for tomorrow but am having a hard time settling down tonight. My yellow lab (Hiram) lays by Robb all the time and he knows that something is wrong. Robb always takes him everywhere and throws his ball but he is still weak after the biopsy. Thank you again from the bottom of mt heart and I will let you know what is happening when we get home tomorrow. A friend in need is a friend indeed...friends are like diamonds rare but true. > > > > > > Hi everyone, my name is and my husband Robb has just been > > told he > > > has IPF. We are both very scared and have no idea what to expect. On > > > Thursday we go to Madison University to see a specialist who works > > with > > > IPF. We already have a page and a half of questions for him. Is > > there > > > anything specialwe should be asking him? Thanks for your help in > > > advance it is much appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2007 Report Share Posted August 15, 2007 I just want to say thank you to everyone who has responded already, I have been having Robb read everything and he had tears in his eyes tonight about how everyone talks with each other and shares so much info and feelings. We are simple people and just want to get by in life. We care about our family and friends and now we have a new family here on the site. I know I need to go to bed and get some rest for tomorrow but am having a hard time settling down tonight. My yellow lab (Hiram) lays by Robb all the time and he knows that something is wrong. Robb always takes him everywhere and throws his ball but he is still weak after the biopsy. Thank you again from the bottom of mt heart and I will let you know what is happening when we get home tomorrow. A friend in need is a friend indeed...friends are like diamonds rare but true. > > > > > > Hi everyone, my name is and my husband Robb has just been > > told he > > > has IPF. We are both very scared and have no idea what to expect. On > > > Thursday we go to Madison University to see a specialist who works > > with > > > IPF. We already have a page and a half of questions for him. Is > > there > > > anything specialwe should be asking him? Thanks for your help in > > > advance it is much appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
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