Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Congratulations, we look forward to hearing more about your journey and are in our prayers. Best Wishes, Shauna smsnugglebunny wrote: I am a new memeber, I live in Greensburg, Indiana and I will be having my surgary in Michigan. Because of my insurance I need a hospital of excellance and Indiana at the time did not have one, St. s is one in Indiana. I will be having my surgary at Spectrum Health Hospital at the Blodgett Campus. My Surgant is Wayne VanderKolk. I had my first visit with him in May and I have already had my scope done by him as well. I really like Wayne, I had him laughing, and using my funny made up words that I put in place of a word that I can't recall. He is the first Dr. that I have been to that has made me feel at ease with. My surgary is scheduled for July 6th and I am a bundle of nerves. I hope I still feel the same way after the surgary about my Dr. Oh, I will be staying with my mother while in MI. Good Luck to everyone! Take Care, God Bless! Love, Snugglebunny --------------------------------- Yahoo! Messenger with Voice. PC-to-Phone calls for ridiculously low rates. --------------------------------- Want to be your own boss? Learn how on Yahoo! Small Business. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Welcome and congrats on your surgery date!! I look forward to hearing how it goes. Mine is august 8th. in Bristol, Indiana Pre-op Lap Roux En Y Surgery date August, 08 2006 @ 0730! LOL Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2006 Report Share Posted June 20, 2006 Welcome & Good luck to you! I live in Greensburg,PA. I will be having surgery this friday so we will be able to compare note with each other! Surgery Date 06/23/06 > > I am a new memeber, I live in Greensburg, Indiana and I will be having > my surgary in Michigan. Because of my insurance I need a hospital of > excellance and Indiana at the time did not have one, St. s is > one in Indiana. I will be having my surgary at Spectrum Health > Hospital at the Blodgett Campus. My Surgant is Wayne VanderKolk. I > had my first visit with him in May and I have already had my scope > done by him as well. I really like Wayne, I had him laughing, and > using my funny made up words that I put in place of a word that I > can't recall. He is the first Dr. that I have been to that has made > me feel at ease with. My surgary is scheduled for July 6th and I am a > bundle of nerves. I hope I still feel the same way after the surgary > about my Dr. Oh, I will be staying with my mother while in MI. > Good Luck to everyone! > Take Care, God Bless! > Love, > Snugglebunny > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Welcome to the group Nikki. No need to be nervous. All will be well. It'll be over before you know it & you'll be on the losing side!! :-) I'm 1 week post-op & doing great!!! 1 week post op 380/354/160 nikki wrote: > Hello everyone, I haven't had the surgery yet. I am scheduled to have > it on August 7th, 2006. The date is getting closer and I am getting > more nervous. > > > > > > > > > > We are a very active support group. > If the email becomes overwhelming, > please change your setting to NO EMAIL! > Please contact Group Creator > Robyn@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 Welcome to the group Nikki. No need to be nervous. All will be well. It'll be over before you know it & you'll be on the losing side!! :-) I'm 1 week post-op & doing great!!! 1 week post op 380/354/160 nikki wrote: > Hello everyone, I haven't had the surgery yet. I am scheduled to have > it on August 7th, 2006. The date is getting closer and I am getting > more nervous. > > > > > > > > > > We are a very active support group. > If the email becomes overwhelming, > please change your setting to NO EMAIL! > Please contact Group Creator > Robyn@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Welcome Nikki, This group is an awesome source of information we have people from a few days out to several years out and everything inbetween. You have any questions don't hesitate to ask. Being nervous is a natural reaction but you will be fine. Namaste, Marilynn Open RNY 24 Jan 06 Dr. Haque 290/195 60 pounds to go > > Hello everyone, I haven't had the surgery yet. I am scheduled to have > it on August 7th, 2006. The date is getting closer and I am getting > more nervous. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Welcome Nikki! The date will be here before you know it! Good luck to you. I was very nervous too but everything turned out all right. surgery 6/23/06 298/???/135 > > Hello everyone, I haven't had the surgery yet. I am scheduled to have > it on August 7th, 2006. The date is getting closer and I am getting > more nervous. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hello, everyone. I am new to the group and this whole thing. About a week ago, I confirmed with my doctor that I have IPF and his response was that we'd just do another CT in 4 - 6 months and that if nothing had changed, we'd just " forget about it. " I told him that everything I had read was not good about this fibrosis and his response was, " it's just pulmonary. " After much Googling, I was put in touch with a great nurse who was able to get me in to see a Pulmonology Disease Specialist at Emory this upcoming Friday, May 30th, because I have honestly been freaking out. Does IPF always get worse or can it just stagnate? That is a question that I haven't found a good enough answer in my research. The really scary thing is the lifespan after diagnosis. Can someone please help me to understand if this primary care doctor is taking this too lightly and I'm just overreacting, or is this what I think it is. Thank you for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 I didn't catch your name but I can answer a few of your questions. First of all, yes I think your doctor is taking this too lightly. You are right to see a specialist. This disease can be dormant for a time and then boom you are terribly sick. I have only been dealing with it for close to 5 years now, but didn't get an actual diagnosis until January of this year. Don't fear the 2 to 4 year prognosis. We have some members of this group who were diagnosed 10+ years ago. After diagnosis, the best advice I can give is you have to take care of yourself as best as possible if you want to prolong your life. I don't know how much help I have been, but I am glad to have you in the group, even though I am sad for your reason for being here. I didn't catch your name, but welcome to the group. You will find many answers here.CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: New to the GroupTo: Breathe-Support Date: Saturday, May 24, 2008, 2:06 PM Hello, everyone. I am new to the group and this whole thing. About a week ago, I confirmed with my doctor that I have IPF and his response was that we'd just do another CT in 4 - 6 months and that if nothing had changed, we'd just "forget about it." I told him that everything I had read was not good about this fibrosis and his response was, "it's just pulmonary." After much Googling, I was put in touch with a great nurse who was able to get me in to see a Pulmonology Disease Specialist at Emory this upcoming Friday, May 30th, because I have honestly been freaking out.Does IPF always get worse or can it just stagnate? That is a question that I haven't found a good enough answer in my research. The really scary thing is the lifespan after diagnosis.Can someone please help me to understand if this primary care doctor is taking this too lightly and I'm just overreacting, or is this what I think it is.Thank you for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Thank you for my first response! I'm Alana. When I originally signed up, I didn't know how everyone was logging on, so I just changed my profile to reflect my name. Georgiapeachbiker is because I live in Georgia & ride a motorcycle! I have so many more questions than answers and am looking forward to hearing from everyone & meeting my new doctor on Friday. > > From: georgiapeachbiker alanamunday@... > Subject: New to the Group > To: Breathe-Support > Date: Saturday, May 24, 2008, 2:06 PM > > > > > > > Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just " forget about it. " I told him that everything I > had read was not good about this fibrosis and his response was, " it's > just pulmonary. " After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out. > Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis. > Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is. > Thank you for your help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi "New to the Group" If there was a doctor on this earth who responded to IPF in such a way he should have his license taken away! You are so smart to seek immediate help. You are smarter, still, to select a facility like Emory. You should get all your questions answered there. Begin your list of questions and take it with you. Whatever testing or reports are generated....get copies. This disease NEVER goes away. It can become stable and some of us have had long survival times, but you treat it as though it is your worst enemy....because it is. Let us know how your Emory visit goes. And....don't ever go near that doctor again! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just "forget about it." I told him that everything I > had read was not good about this fibrosis and his response was, "it's > just pulmonary." After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out.> Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis.> Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is.> Thank you for your help.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi georgia....welcome to our family here on the board. It's always sad when a newbie joins us but this is the best place to be for one who has been dx (diagnosed) with IPF or any of the more than 200 strains. Here you will find answers to all your questions and don't be hesitant to ask them. My personal opinion is yes, if you were dx w/IPF your pcp is taking this too lightly....we here on the board find many drs. just don't know enough about this disease....even pulmonologists disagree with treatment. Good you are going to Emory! And soon too. You will find lots more info. there. Unfortunately, if you do indeed have IPF or strain of....there currently is no treatment and no cure. We understand how "freaked out" you are. We all have been there. I was dx 3-06 and have been fairly stable since. Some here were dx 10 -14 years ago. Take a deep breath and know you are not alone! I hope you have good family support. Are you married, kids, in what state do you live? Keep coming back, you'll get acquainted with us real soon. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New to the Group Hello, everyone. I am new to the group and this whole thing. About a week ago, I confirmed with my doctor that I have IPF and his response was that we'd just do another CT in 4 - 6 months and that if nothing had changed, we'd just "forget about it." I told him that everything I had read was not good about this fibrosis and his response was, "it's just pulmonary." After much Googling, I was put in touch with a great nurse who was able to get me in to see a Pulmonology Disease Specialist at Emory this upcoming Friday, May 30th, because I have honestly been freaking out.Does IPF always get worse or can it just stagnate? That is a question that I haven't found a good enough answer in my research. The really scary thing is the lifespan after diagnosis.Can someone please help me to understand if this primary care doctor is taking this too lightly and I'm just overreacting, or is this what I think it is.Thank you for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi, Mama-Sher! Thank you for the welcome! I have a great husband of nearly 25 years. No kids, but 3 Norweign Elkhounds & a Norweign Forest cat. I will say that I have tried to shield my husband from my emotional rollercoaster this week. He just worries so much. I have wonderful friends, whom I love dearly, who have listened to me all week long. They're great. Looks like I've got a whole bunch more friends out here, too! > > Hi georgia....welcome to our family here on the board. It's always sad when a newbie joins us but this is the best place to be for one who has been dx (diagnosed) with IPF or any of the more than 200 strains. Here you will find answers to all your questions and don't be hesitant to ask them. > My personal opinion is yes, if you were dx w/IPF your pcp is taking this too lightly....we here on the board find many drs. just don't know enough about this disease....even pulmonologists disagree with treatment. > Good you are going to Emory! And soon too. You will find lots more info. there. > Unfortunately, if you do indeed have IPF or strain of....there currently is no treatment and no cure. We understand how " freaked out " you are. We all have been there. > I was dx 3-06 and have been fairly stable since. Some here were dx 10 -14 years ago. Take a deep breath and know you are not alone! > I hope you have good family support. Are you married, kids, in what state do you live? > Keep coming back, you'll get acquainted with us real soon. > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > Don't fret about tomorrow, God is already there! > > New to the Group > > > Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just " forget about it. " I told him that everything I > had read was not good about this fibrosis and his response was, " it's > just pulmonary. " After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out. > Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis. > Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is. > Thank you for your help. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Alana.....nice name. My granddaughter's middle name is Alyce. I like both. You ride a bike. Joe and Joanie have bikes too. They will respond soon. Sometimes posts are missed. So glad you have wonderful friends for support and yes, you now have more! We have a little 10# Doxie. I love cats but we don't have one right now. I'll be signing off soon, my granddaughter is visiting for the weekend. Again, welcome and let us know what the dr says. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New to the Group> > > Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just "forget about it." I told him that everything I > had read was not good about this fibrosis and his response was, "it's > just pulmonary." After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out.> Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis.> Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is.> Thank you for your help.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi there Georgiapeachbiker! I go to Emory to see Dr. . He is awesome! If you are in the early stages of IPF you may qualify for a study. I am in a study. Go back and read all the postings, links, etc. and you will learn much. Let us know about your doctor appointment on May 30th. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl >> Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just "forget about it." I told him that everything I > had read was not good about this fibrosis and his response was, "it's > just pulmonary." After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out.> Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis.> Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is.> Thank you for your help.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 J/J you are so lucky....newbie Alana is not tooooo far away...go to the same dr! You will get to meet sooner than later. I can't help but wonder why this disease is so prevalent farther east? Mid-West. Out here in the PNW there are few w/this disease. Hmmmmmm. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New to the Group Hello, everyone. I am new to the group and this whole thing. About a week ago, I confirmed with my doctor that I have IPF and his response was that we'd just do another CT in 4 - 6 months and that if nothing had changed, we'd just "forget about it." I told him that everything I had read was not good about this fibrosis and his response was, "it's just pulmonary." After much Googling, I was put in touch with a great nurse who was able to get me in to see a Pulmonology Disease Specialist at Emory this upcoming Friday, May 30th, because I have honestly been freaking out.Does IPF always get worse or can it just stagnate? That is a question that I haven't found a good enough answer in my research. The really scary thing is the lifespan after diagnosis.Can someone please help me to understand if this primary care doctor is taking this too lightly and I'm just overreacting, or is this what I think it is.Thank you for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hello Georgia, You are not freaking out for nothing. The pcp doc is like a lot of doctors---unable to help with this trecherous disease. They don't know what to do and it is frustrating for them to not be able to help their patients. There are some who will try their best and then there are those who say, "Go home and take cough medicine, it's just the fibrosis". That is what ours said to us. Don was diagnosed in 2006 and that is what the doctors told us. When in reality there is not much they know about the disease. . I certainly understand your panic. Hang around here and we will teach you a lot with our discussions. K IllinoisSher Bauman wrote: Alana.....nice name. My granddaughter's middle name is Alyce. I like both. You ride a bike. Joe and Joanie have bikes too. They will respond soon. Sometimes posts are missed. So glad you have wonderful friends for support and yes, you now have more! We have a little 10# Doxie. I love cats but we don't have one right now. I'll be signing off soon, my granddaughter is visiting for the weekend. Again, welcome and let us know what the dr says. Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! New to the Group> > > Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just "forget about it." I told him that everything I > had read was not good about this fibrosis and his response was, "it's > just pulmonary." After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out.> Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis.> Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is.> Thank you for your help.> K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi Alana, Welcome to the board!! I'm Beth and I live in Durham in North Carolina about 10 minutes or so from Duke. What your doctor said to you is unconscionable. It's just infuriating. I'm so glad that you're seeing a specialist at Emory. Try to stay calm, as Peggy always says, you have no expiration date tatooed on your bum. I was diagnosed two years ago and I'm stable and am working hard to remain that way. Lots of questions will be answered at Emory but trust me there will always be new questions. Take good care of you and avoid stress. Make yourself your first priority! Again, though I'm sorry you have reason to be here, welcome! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive New to the Group Hello, everyone. I am new to the group and this whole thing. About a week ago, I confirmed with my doctor that I have IPF and his response was that we'd just do another CT in 4 - 6 months and that if nothing had changed, we'd just "forget about it." I told him that everything I had read was not good about this fibrosis and his response was, "it's just pulmonary." After much Googling, I was put in touch with a great nurse who was able to get me in to see a Pulmonology Disease Specialist at Emory this upcoming Friday, May 30th, because I have honestly been freaking out.Does IPF always get worse or can it just stagnate? That is a question that I haven't found a good enough answer in my research. The really scary thing is the lifespan after diagnosis.Can someone please help me to understand if this primary care doctor is taking this too lightly and I'm just overreacting, or is this what I think it is.Thank you for your help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Hi Alana, Welcome to the board. I'm Irene and I live in Toronto (Canada). I was diagnosed last year in March/07 with PF. After being rushed to ER with high blood pressure, difficulty breathing and an overnight stay in hospital. My PF was caused due to the Methotrexate, which I take for my Crohn's Disease. At the moment I'm pretty stable, sometimes my oxygen levels fall to 88%. My new lung dr will be monitoring me very closely. I have good and bad days. My last PFT's (Pulmonary Function Test) results my DLCO was 73%. Also in Jan/08, I was diagnosed with bilaterally sub segmental (both lungs) mild atelectasis. As I was told dr's need to be extra careful when giving me IV fluids or me needing to drink fluids because those fluids can build up in my lungs and can cause pneumonia. I'm glad to hear you're getting a second opinion very soon, it's very important! Irene Raynaud's Disease 09/07 PF 03/07 Crohn's Disease 03/95 ---- Original Message ---- To: Breathe-Support Sent: Sat, 24 May 2008 9:16 pm Subject: Re: New to the Group Hi Alana, Welcome to the board!! I'm Beth and I live in Durham in North Carolina about 10 minutes or so from Duke. What your doctor said to you is unconscionable. It's just infuriating. I'm so glad that you're seeing a specialist at Emory. Try to stay calm, as Peggy always says, you have no expiration date tatooed on your bum. I was diagnosed two years ago and I'm stable and am working hard to remain that way. Lots of questions will be answered at Emory but trust me there will always be new questions. Take good care of you and avoid stress. Make yourself your first priority! Again, though I'm sorry you have reason to be here, welcome! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive New to the Group Hello, everyone. I am new to the group and this whole thing. About a week ago, I confirmed with my doctor that I have IPF and his response was that we'd just do another CT in 4 - 6 months and that if nothing had changed, we'd just "forget about it." I told him that everything I had read was not good about this fibrosis and his response was, "it's just pulmonary." After much Googling, I was put in touch with a great nurse who was able to get me in to see a Pulmonology Disease Specialist at Emory this upcoming Friday, May 30th, because I have honestly been freaking out. Does IPF always get worse or can it just stagnate? That is a question that I haven't found a good enough answer in my research. The really scary thing is the lifespan after diagnosis. Can someone please help me to understand if this primary care doctor is taking this too lightly and I'm just overreacting, or is this what I think it is. Thank you for your help. Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 24, 2008 Report Share Posted May 24, 2008 Alana, You are so welcome to our "air family". Sorry that you needed to find us. Yes, your PCP is taking the diagnosis too lightly...how could anything about lungs be a "just". We all get it...we've been as scared and confused as you are. You are amongst friends here. Ask all the question, rant and rave, and share humor too. Your husband is probably in shock as all our spouses have been. I've been married 42 years ( 43 in July), 3 grown and married kids, two gorgeous grand daughters, no pets at the moment. We here are of many different ages , backgrounds ,education, occupations and interests. We have this miserable PF as our common denominator. Through this group I have found support through many bad patches and they have shared my positive moments too. We are like a family. No judgements just support. We try to sign off with our name, Diagnosis, State and anything else we wish to give some identity to our posts. Again, welcome newbie. Z fibriotic NSIP/05 Z 64, fibriotic NSIP/o5/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 Alana wrote: Hi, Mama-Sher! Thank you for the welcome! I have a great husband of nearly 25 years. No kids, but 3 Norweign Elkhounds & a Norweign Forest cat. I will say that I have tried to shield my husband from my emotional rollercoaster this week. He just worries so much. I have wonderful friends, whom I love dearly, who have listened to me all week long. They're great. Looks like I've got a whole bunch more friends out here, too! > > Hi georgia....welcome to our family here on the board. It's always sad when a newbie joins us but this is the best place to be for one who has been dx (diagnosed) with IPF or any of the more than 200 strains. Here you will find answers to all your questions and don't be hesitant to ask them. > My personal opinion is yes, if you were dx w/IPF your pcp is taking this too lightly....we here on the board find many drs. just don't know enough about this disease....even pulmonologists disagree with treatment. > Good you are going to Emory! And soon too. You will find lots more info. there. > Unfortunately, if you do indeed have IPF or strain of....there currently is no treatment and no cure. We understand how "freaked out" you are. We all have been there. > I was dx 3-06 and have been fairly stable since. Some here were dx 10 -14 years ago. Take a deep breath and know you are not alone! > I hope you have good family support. Are you married, kids, in what state do you live? > Keep coming back, you'll get acquainted with us real soon. > Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. > Don't fret about tomorrow, God is already there! > > New to the Group > > > Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just "forget about it." I told him that everything I > had read was not good about this fibrosis and his response was, "it's > just pulmonary." After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out. > Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis. > Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is. > Thank you for your help. > No virus found in this incoming message. Checked by AVG. Version: 8.0.100 / Virus Database: 269.24.1/1464 - Release Date: 5/24/2008 8:56 AM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 25, 2008 Report Share Posted May 25, 2008 Hi Alana Welcome to our corner of the internet, but I'm sorry you had to find us. I am one of those who have had PF for many years. I'm sure this has already been said, but it sounds like your doc is taking it a bit too lightly, but this might be his way of stopping you from worrying about it. Yes you will have periods of stability, and you will need to learn how to look after yourself to make the most of these periods. Find an exercise program that works for you within the confines of the PF. Make steps to remain at or get to a BMI of under 30. If you are told you need oxygen, take it. Yes the canula and the tubing is inconvenient, yes the jet pack is cumbersome, but my quality of life has increased dramatically for being on it. I look forward to reading more of your posts Love Ze (38) Dermatomyositis, Pulmonary Fibrosis (prop NSIP) etc for years, Pulmonary Hypertension 2008>> Hello, everyone. I am new to the group and this whole thing. About a > week ago, I confirmed with my doctor that I have IPF and his response > was that we'd just do another CT in 4 - 6 months and that if nothing > had changed, we'd just "forget about it." I told him that everything I > had read was not good about this fibrosis and his response was, "it's > just pulmonary." After much Googling, I was put in touch with a great > nurse who was able to get me in to see a Pulmonology Disease Specialist > at Emory this upcoming Friday, May 30th, because I have honestly been > freaking out.> Does IPF always get worse or can it just stagnate? That is a question > that I haven't found a good enough answer in my research. > The really scary thing is the lifespan after diagnosis.> Can someone please help me to understand if this primary care doctor is > taking this too lightly and I'm just overreacting, or is this what I > think it is.> Thank you for your help.> Quote Link to comment Share on other sites More sharing options...
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