Guest guest Posted February 24, 2009 Report Share Posted February 24, 2009 Hi Ginny, We have a precious member Lou that sees a Dr. Haddad he actually goes to her house.I wonder if it is the same Doc. She is in Richmond alsoI am not sure if I answered you about the longevity with this disease but only God knows for sure. I and a few others are five years and still kicking. I am 66 and think I have had this monster living with me for 10 years or so when I think back.Anyhow try not to look at death but cram as much life in as you can. Grab the ol'02 and go.God Bless you on your journey. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Thank you Beth for replying to my questions. I was diagnosed with Idiopathic PF by Dr. Haddad, Pulmonary Specialist at MCV Hospital in Richmond, VA. He actually diagnosed me in June of last year by doing a Catscan with contrast and sent me also to get a very long breathing test in another dept. at the hospital, but I did not believe it until I went through the same tests again 2 weeks ago. He showed me the Catscan on his computer. He said there was honeycombs and showed me these little back things that looked like bunches of small grapes on the edges of three sides of my lungs. I asked him if I was at the beginning of the disease or the middle or the end stages, he said the beginning.I have been on oxygen for over two years for COPD for when I sleep at night or when I have to use it about every 3 months around the clock when my lungs get infected. I'm 65 and my first time having to use oxygen around the clock for a whole two months was when I was 45 yrs. old.. Since then I have been hospitalized 13 times for lung problems over the past 20 years. But like I said this is the first time I've been diagnosed with the PF. I do trust God and am at peace about dying. I have cleaned up the wreckage of my past and there is no one I owe any amends to and I tell everyone daily that I love them. The only fear is that I know my 4 children (who are all in their 40's) will hurt so bad when I'm gone. Also I have 10 grandchildren, 6 of them over 20 years old and I am very close to them. I also have 5 great-grandkids.Once again, thank you Beth so very much for sharing with me. It means a lot. God Bless you, Ginny--- On Tue, 2/24/09, Beth <mbmurtha (AT) yahoo (DOT) com> wrote:From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support Date: Tuesday, February 24, 2009, 12:52 PMHi Ginny, welcome to Breathe Support! I'm sorry that you had reason to look for a group like this but since you did, I'm glad you found us. My name is Beth and I was diagnosed with pulmonary fibrosis in June of 06. It is a very overwhelming and frightening diagnosis. The questions you ask are the ones we've all had and there are not alot of easy answers. Your long term prognosis depends entirely on what type of pf you've been diagnosed with. There are over 200 different interstitial lung disease that cause pulmonary fibrosis. For instance I have NSIP (non-specific interstitial pneumonitis) that was likely caused by an auto immune connective tissue disease, dermatomyositis in my case. My long term prognosis very much depends on the ability to control my dermatomyositis. I've been fortunate in that I've been stable since I was diagnosed. Have the doctors given you any information on your diagnosis other than to say you have PF? How were you diagnosed? One thing I would suggest and something that many in this group have found helpful is to get yourself to a university medical center with specialists in interstitial lung disease. Living in Richmond you are only about 150 miles from Duke in Durham, NC. There is much to be gained from being evaluated at someplace like Duke, information and insight about our disease are at the top of the list.As to the oximeter question. Many have purchased the one at this link. http://www.portable nebs.com/ choiceoximeter. htmWhatever oximeter you choose to purchase, just make sure you get one that is FDA approved for medical use and not one that is intended for use in sports or aviation. You want as much accuracy as possible.I hope this helps a bit, please continue to ask questions. There is lots of information and support available here. We all 'get it' in a way that no one else can! BethModeratorFibrotic NSIP 06/06 Dermatomyositis 11/08From: Ginny <ginnymurphy93@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Tuesday, February 24, 2009 3:22:13 AMSubject: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Thanks Peggy, I do grab that ol oxygen shoulder tank and go whenever I'm not bedridden. I'm going to write Beth and see if Dr. Haddad is the same one I see - I hope so as we can compare notes LOL. Ginny From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 12:52 PM Hi Ginny, welcome to Breathe Support! I'm sorry that you had reason to look for a group like this but since you did, I'm glad you found us. My name is Beth and I was diagnosed with pulmonary fibrosis in June of 06. It is a very overwhelming and frightening diagnosis. The questions you ask are the ones we've all had and there are not alot of easy answers. Your long term prognosis depends entirely on what type of pf you've been diagnosed with. There are over 200 different interstitial lung disease that cause pulmonary fibrosis. For instance I have NSIP (non-specific interstitial pneumonitis) that was likely caused by an auto immune connective tissue disease, dermatomyositis in my case. My long term prognosis very much depends on the ability to control my dermatomyositis. I've been fortunate in that I've been stable since I was diagnosed. Have the doctors given you any information on your diagnosis other than to say you have PF? How were you diagnosed? One thing I would suggest and something that many in this group have found helpful is to get yourself to a university medical center with specialists in interstitial lung disease. Living in Richmond you are only about 150 miles from Duke in Durham, NC. There is much to be gained from being evaluated at someplace like Duke, information and insight about our disease are at the top of the list. As to the oximeter question. Many have purchased the one at this link. http://www.portable nebs.com/ choiceoximeter. htm Whatever oximeter you choose to purchase, just make sure you get one that is FDA approved for medical use and not one that is intended for use in sports or aviation. You want as much accuracy as possible. I hope this helps a bit, please continue to ask questions. There is lots of information and support available here. We all 'get it' in a way that no one else can! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Ginny <ginnymurphy93@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Tuesday, February 24, 2009 3:22:13 AMSubject: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease? Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2009 Report Share Posted February 25, 2009 Ginny, It's Lou that has been a patient of Dr. Haddad, not me. She's only on the board from time to time these days. She's under the care of Hospice and is at the end stage of this lousy disease. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Wednesday, February 25, 2009 6:27:20 PMSubject: Re: Ginny Thanks Peggy, I do grab that ol oxygen shoulder tank and go whenever I'm not bedridden. I'm going to write Beth and see if Dr. Haddad is the same one I see - I hope so as we can compare notes LOL. Ginny From: Beth <mbmurtha (AT) yahoo (DOT) com>Subject: Re: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease?To: Breathe-Support@ yahoogroups. comDate: Tuesday, February 24, 2009, 12:52 PM Hi Ginny, welcome to Breathe Support! I'm sorry that you had reason to look for a group like this but since you did, I'm glad you found us. My name is Beth and I was diagnosed with pulmonary fibrosis in June of 06. It is a very overwhelming and frightening diagnosis. The questions you ask are the ones we've all had and there are not alot of easy answers. Your long term prognosis depends entirely on what type of pf you've been diagnosed with. There are over 200 different interstitial lung disease that cause pulmonary fibrosis. For instance I have NSIP (non-specific interstitial pneumonitis) that was likely caused by an auto immune connective tissue disease, dermatomyositis in my case. My long term prognosis very much depends on the ability to control my dermatomyositis. I've been fortunate in that I've been stable since I was diagnosed. Have the doctors given you any information on your diagnosis other than to say you have PF? How were you diagnosed? One thing I would suggest and something that many in this group have found helpful is to get yourself to a university medical center with specialists in interstitial lung disease. Living in Richmond you are only about 150 miles from Duke in Durham, NC. There is much to be gained from being evaluated at someplace like Duke, information and insight about our disease are at the top of the list. As to the oximeter question. Many have purchased the one at this link. http://www.portable nebs.com/ choiceoximeter. htm Whatever oximeter you choose to purchase, just make sure you get one that is FDA approved for medical use and not one that is intended for use in sports or aviation. You want as much accuracy as possible. I hope this helps a bit, please continue to ask questions. There is lots of information and support available here. We all 'get it' in a way that no one else can! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 From: Ginny <ginnymurphy93@ yahoo.com>To: breathe-support@ yahoogroups. comSent: Tuesday, February 24, 2009 3:22:13 AMSubject: New PF woman/age 65/diagnosed 6/2008/What is average life span with this disease? Hi, Ginny here, from Richmond, VA. Just found this PF site and have questions. Where do I go to buy an oximeter? Also, I read somewhere on the PF Foundation site that the average span of years to live once you are diagnosed is 4 to 6 years, is this correct? Thanks for any info. you can share with me. Sincerely, Ginny Quote Link to comment Share on other sites More sharing options...
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