Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Hi Mike! I am glad to see your post! I am on VA healthcare and I have IPF.. I am going for my first BIG physical on the 16th. My IPF was discovered on an x-ray at an Agent Orange exam. I will let you know as much as you would like after my exam at the VA pulmonary clinic. Like you, I am hoping that they know what to do with an IPF patient. So far I am greatly impressed with the VA - They have been very good to me. I am a Vietnam vet (age 65) and am in priority group 6. I also pay a copay but no big deal - There is no premium and only $15. to see a Dr. or $50. for a specialist. Perscriptions are $8. I have been to emergeny several times with no additional charge. I'm very happy with my care. They treat veterans like royalty. I receive care at Mather in Sacamento, California. As far as disability benefits go I'll know more in a month or so. Please tell me about yourself and let's stay in touch - Again, I'm glad you posted! Ken Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 10:20 PM I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Ken Has yours been confirmed by CT? Have they indicated what type of ILD? I ask because X-Ray is not generally the means of diagnosis. X-Ray can often eliminate other conditions which cause symptoms similar to Interstitial Lung Diseases, such as collapsed lung and COPD. But as a positive confirmation, I would not accept it. And, as to which type or form, I think more would be needed. > > > From: Mango man mangomaninparadise@... > Subject: Re: Veterans Benefits > To: Breathe-Support > Date: Sunday, March 8, 2009, 10:20 PM > > > > > > > > > > > > I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate > your experiences? > > Mike > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Ken Has yours been confirmed by CT? Have they indicated what type of ILD? I ask because X-Ray is not generally the means of diagnosis. X-Ray can often eliminate other conditions which cause symptoms similar to Interstitial Lung Diseases, such as collapsed lung and COPD. But as a positive confirmation, I would not accept it. And, as to which type or form, I think more would be needed. > > > From: Mango man mangomaninparadise@... > Subject: Re: Veterans Benefits > To: Breathe-Support > Date: Sunday, March 8, 2009, 10:20 PM > > > > > > > > > > > > I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate > your experiences? > > Mike > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Thank you for your email! No, I have not had a CT. I do have a copy of my medical records and they say Interstitial Lung Disease. At my last appointment I asked the doctor three times if my chart actually used the words: Pulmonary Fibrosis and each time he said yes. I have never smoked or been around very many smokers while they smoked. To the best of my memory I have not been exposed to any unusual contaminates. I have a 45 minutes appointment with a pulmonary clinic on the 16th. I did not ask for this appointment (I was referred by a ccardioogist following a heart episode) and don't know what to expect but if they give me a clean bill of health I won't have to email you, you will hear me shouting with joy! Thank you very much for giving me hope! Ken My doctor did tell me that I couldn't fly until the testing was completed. Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 11:44 PM KenHas yours been confirmed by CT? Have they indicated what type of ILD?I ask because X-Ray is not generally the means of diagnosis. X-Ray canoften eliminate other conditions which cause symptoms similar toInterstitial Lung Diseases, such as collapsed lung and COPD. But as apositive confirmation, I would not accept it. And, as to which type orform, I think more would be needed.>>> From: Mango man mangomaninparadise@ ...> Subject: Re: Veterans Benefits> To: Breathe-Support@ yahoogroups. com> Date: Sunday, March 8, 2009, 10:20 PM>>>>>>>>>>>> I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come underattack over the years for their less than professional treatment of ourveterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c)for my net worth (for the moment) is at a level high enough to requiresI have co-pays for my doctors visits and medications. I currently amcovered by a Blue Cross/Blue Shield plan which would then become mysecondary to the VA. I am quite skeptical that they would be able todeal with something like IPF but I have been told there have specializedcenters around the country that work closely with major teachinghospitals to include even the IPF Net. I am wondering if any of you onthis network currently receive your care through the VeteransAdministration? If you do, could you relate> your experiences?>> Mike> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Thank you for your email! No, I have not had a CT. I do have a copy of my medical records and they say Interstitial Lung Disease. At my last appointment I asked the doctor three times if my chart actually used the words: Pulmonary Fibrosis and each time he said yes. I have never smoked or been around very many smokers while they smoked. To the best of my memory I have not been exposed to any unusual contaminates. I have a 45 minutes appointment with a pulmonary clinic on the 16th. I did not ask for this appointment (I was referred by a ccardioogist following a heart episode) and don't know what to expect but if they give me a clean bill of health I won't have to email you, you will hear me shouting with joy! Thank you very much for giving me hope! Ken My doctor did tell me that I couldn't fly until the testing was completed. Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 11:44 PM KenHas yours been confirmed by CT? Have they indicated what type of ILD?I ask because X-Ray is not generally the means of diagnosis. X-Ray canoften eliminate other conditions which cause symptoms similar toInterstitial Lung Diseases, such as collapsed lung and COPD. But as apositive confirmation, I would not accept it. And, as to which type orform, I think more would be needed.>>> From: Mango man mangomaninparadise@ ...> Subject: Re: Veterans Benefits> To: Breathe-Support@ yahoogroups. com> Date: Sunday, March 8, 2009, 10:20 PM>>>>>>>>>>>> I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come underattack over the years for their less than professional treatment of ourveterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c)for my net worth (for the moment) is at a level high enough to requiresI have co-pays for my doctors visits and medications. I currently amcovered by a Blue Cross/Blue Shield plan which would then become mysecondary to the VA. I am quite skeptical that they would be able todeal with something like IPF but I have been told there have specializedcenters around the country that work closely with major teachinghospitals to include even the IPF Net. I am wondering if any of you onthis network currently receive your care through the VeteransAdministration? If you do, could you relate> your experiences?>> Mike> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Ken At the very minimum you need a High Resolution CT....and make sure its a HRCT as opposed to a plain one. This is much too important to you not to be very sure of the diagnosis. > > > > > > From: Mango man mangomaninparadise@ ... > > Subject: Re: Veterans Benefits > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, March 8, 2009, 10:20 PM > > > > > > > > > > > > > > > > > > > > > > > > I have been directed by other veterans to apply for medical benefits. > I was hesitant at first for the VA Hospitals and clinics have come under > attack over the years for their less than professional treatment of our > veterans. But I went ahead and applied to see whether I would qualify. > As it turns out, I am entitled to medical coverage (Priority Group 7c) > for my net worth (for the moment) is at a level high enough to requires > I have co-pays for my doctors visits and medications. I currently am > covered by a Blue Cross/Blue Shield plan which would then become my > secondary to the VA. I am quite skeptical that they would be able to > deal with something like IPF but I have been told there have specialized > centers around the country that work closely with major teaching > hospitals to include even the IPF Net. I am wondering if any of you on > this network currently receive your care through the Veterans > Administration? If you do, could you relate > > your experiences? > > > > Mike > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Ken At the very minimum you need a High Resolution CT....and make sure its a HRCT as opposed to a plain one. This is much too important to you not to be very sure of the diagnosis. > > > > > > From: Mango man mangomaninparadise@ ... > > Subject: Re: Veterans Benefits > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, March 8, 2009, 10:20 PM > > > > > > > > > > > > > > > > > > > > > > > > I have been directed by other veterans to apply for medical benefits. > I was hesitant at first for the VA Hospitals and clinics have come under > attack over the years for their less than professional treatment of our > veterans. But I went ahead and applied to see whether I would qualify. > As it turns out, I am entitled to medical coverage (Priority Group 7c) > for my net worth (for the moment) is at a level high enough to requires > I have co-pays for my doctors visits and medications. I currently am > covered by a Blue Cross/Blue Shield plan which would then become my > secondary to the VA. I am quite skeptical that they would be able to > deal with something like IPF but I have been told there have specialized > centers around the country that work closely with major teaching > hospitals to include even the IPF Net. I am wondering if any of you on > this network currently receive your care through the Veterans > Administration? If you do, could you relate > > your experiences? > > > > Mike > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2009 Report Share Posted March 8, 2009 Again, thank you! I will ask (insist) on one. Several doctors told me I have Pulmonary Fibrosis - I wonder why they would do this. Maybe at my 16th appointment at the PFT clinic all these things will be done - HOPE SO! There is so much help and information on this board! Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Monday, March 9, 2009, 4:43 AM KenAt the very minimum you need a High Resolution CT....and make sure its aHRCT as opposed to a plain one. This is much too important to you not tobe very sure of the diagnosis.> >> >> > From: Mango man mangomaninparadise@ ...> > Subject: Re: Veterans Benefits> > To: Breathe-Support@ yahoogroups. com> > Date: Sunday, March 8, 2009, 10:20 PM> >> >> >> >> >> >> >> >> >> >> >> > I have been directed by other veterans to apply for medicalbenefits.> I was hesitant at first for the VA Hospitals and clinics have comeunder> attack over the years for their less than professional treatment ofour> veterans. But I went ahead and applied to see whether I would qualify.> As it turns out, I am entitled to medical coverage (Priority Group 7c)> for my net worth (for the moment) is at a level high enough torequires> I have co-pays for my doctors visits and medications. I currently am> covered by a Blue Cross/Blue Shield plan which would then become my> secondary to the VA. I am quite skeptical that they would be able to> deal with something like IPF but I have been told there havespecialized> centers around the country that work closely with major teaching> hospitals to include even the IPF Net. I am wondering if any of you on> this network currently receive your care through the Veterans> Administration? If you do, could you relate> > your experiences?> >> > Mike> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Bruce, I looked up my medical records again and there it is: "Interstitial Lung Disease" but I totally agree - I WANT undeniable proof! I apologize; all this has been about me and my condition. Please tell me your journey! Did you seek medical help because of symptoms or was it discovered during a routine exam? How long have you had PF and what are your symptoms now? How invasive is an open lung biopsy and what is the recovery period? Etc. Would you happen to know what abbreviation is used on a medical report for blood/oxygen levels? I have all these letters and scores on my report but no idea how to read them. Thanks, Bruce! Ken Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Monday, March 9, 2009, 1:37 PM KenYou may well have it but I just wouldn't be comfortable personally witha determination only from an X-Ray. As you were part of a special groupbeing tested, perhaps that was among the things they anticipatedfinding, whereas in most of our cases it is not what they expected tosee. Also, you need to know if they can detect what form of the disease.Get copies of all results and interpretations and charts. Many of us hadPF diagnosed from CT's but had biopsies to determine the form. Some evenhad to have the biopsies to determine it was PF or something else.> > >> > >> > > From: Mango man mangomaninparadise@ ...> > > Subject: Re: Veterans Benefits> > > To: Breathe-Support@ yahoogroups. com> > > Date: Sunday, March 8, 2009, 10:20 PM> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > I have been directed by other veterans to apply for medical> benefits.> > I was hesitant at first for the VA Hospitals and clinics have come> under> > attack over the years for their less than professional treatment of> our> > veterans. But I went ahead and applied to see whether I wouldqualify.> > As it turns out, I am entitled to medical coverage (Priority Group7c)> > for my net worth (for the moment) is at a level high enough to> requires> > I have co-pays for my doctors visits and medications. I currently am> > covered by a Blue Cross/Blue Shield plan which would then become my> > secondary to the VA. I am quite skeptical that they would be able to> > deal with something like IPF but I have been told there have> specialized> > centers around the country that work closely with major teaching> > hospitals to include even the IPF Net. I am wondering if any of youon> > this network currently receive your care through the Veterans> > Administration? If you do, could you relate> > > your experiences?> > >> > > Mike> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Bruce, I looked up my medical records again and there it is: "Interstitial Lung Disease" but I totally agree - I want UNDENIABLE proof! I apologize; all this has been about me and my condition. Please tell me your journey! Did you seek medical help because of symptoms or was it discovered during a routine exam? How long have you had PF and what are your symptoms now? How invasive is an open lung biopsy and what is the recovery period? Etc. Would you happen to know what abbreviation is used on a medical report for blood/oxygen levels? I have all these letter and scores on my report but no idea how to read them. Thanks, Bruce! Ken Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Monday, March 9, 2009, 1:37 PM KenYou may well have it but I just wouldn't be comfortable personally witha determination only from an X-Ray. As you were part of a special groupbeing tested, perhaps that was among the things they anticipatedfinding, whereas in most of our cases it is not what they expected tosee. Also, you need to know if they can detect what form of the disease.Get copies of all results and interpretations and charts. Many of us hadPF diagnosed from CT's but had biopsies to determine the form. Some evenhad to have the biopsies to determine it was PF or something else.> > >> > >> > > From: Mango man mangomaninparadise@ ...> > > Subject: Re: Veterans Benefits> > > To: Breathe-Support@ yahoogroups. com> > > Date: Sunday, March 8, 2009, 10:20 PM> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > I have been directed by other veterans to apply for medical> benefits.> > I was hesitant at first for the VA Hospitals and clinics have come> under> > attack over the years for their less than professional treatment of> our> > veterans. But I went ahead and applied to see whether I wouldqualify.> > As it turns out, I am entitled to medical coverage (Priority Group7c)> > for my net worth (for the moment) is at a level high enough to> requires> > I have co-pays for my doctors visits and medications. I currently am> > covered by a Blue Cross/Blue Shield plan which would then become my> > secondary to the VA. I am quite skeptical that they would be able to> > deal with something like IPF but I have been told there have> specialized> > centers around the country that work closely with major teaching> > hospitals to include even the IPF Net. I am wondering if any of youon> > this network currently receive your care through the Veterans> > Administration? If you do, could you relate> > > your experiences?> > >> > > Mike> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Bruce, I looked up my medical records again and there it is: "Interstitial Lung Disease" but I totally agree - I want UNDENIABLE proof! I apologize; all this has been about me and my condition. Please tell me your journey! Did you seek medical help because of symptoms or was it discovered during a routine exam? How long have you had PF and what are your symptoms now? How invasive is an open lung biopsy and what is the recovery period? Etc. Would you happen to know what abbreviation is used on a medical report for blood/oxygen levels? I have all these letter and scores on my report but no idea how to read them. Thanks, Bruce! Ken Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Monday, March 9, 2009, 1:37 PM KenYou may well have it but I just wouldn't be comfortable personally witha determination only from an X-Ray. As you were part of a special groupbeing tested, perhaps that was among the things they anticipatedfinding, whereas in most of our cases it is not what they expected tosee. Also, you need to know if they can detect what form of the disease.Get copies of all results and interpretations and charts. Many of us hadPF diagnosed from CT's but had biopsies to determine the form. Some evenhad to have the biopsies to determine it was PF or something else.> > >> > >> > > From: Mango man mangomaninparadise@ ...> > > Subject: Re: Veterans Benefits> > > To: Breathe-Support@ yahoogroups. com> > > Date: Sunday, March 8, 2009, 10:20 PM> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > >> > > I have been directed by other veterans to apply for medical> benefits.> > I was hesitant at first for the VA Hospitals and clinics have come> under> > attack over the years for their less than professional treatment of> our> > veterans. But I went ahead and applied to see whether I wouldqualify.> > As it turns out, I am entitled to medical coverage (Priority Group7c)> > for my net worth (for the moment) is at a level high enough to> requires> > I have co-pays for my doctors visits and medications. I currently am> > covered by a Blue Cross/Blue Shield plan which would then become my> > secondary to the VA. I am quite skeptical that they would be able to> > deal with something like IPF but I have been told there have> specialized> > centers around the country that work closely with major teaching> > hospitals to include even the IPF Net. I am wondering if any of youon> > this network currently receive your care through the Veterans> > Administration? If you do, could you relate> > > your experiences?> > >> > > Mike> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Ken My journey started like many. As it turns out I had CT's two months earlier which clearly indicated Interstitial Lung Disease. The problem was that they were so busy concentrating on enlarged lymph nodes that the doctors didn't notice the ILD. Now, I was getting a thorough examination and I insisted there was something wrong other than me being old and out of shape. My mental health counselor had long insisted there was a physical issue not being discovered but we kept looking the neurological route. However, three times I had experienced a shortness of breath so severe I thought I'd never get my breath back. They were putting a monitor in my car, taking it out, and carrying something into my apartment. I know now that those three times I probably dropped down into the 60's or 50's. At the end of my exam my primary, still not truly believing there was a problem, had me do a six minute walk. When I finished and the nurse told him how low I dropped, he said that wasn't what he would have expected and immediately made me an appointment with the pulmonologist. Now, on top of the CT's, I did have a VATs (lung biopsy). My CT's have been reviewed by many doctors and my VATS slides by three different pathologists. I am confirmed, with no uncertainty by any of them, to have Usual Interstitial Pneumonitis (UIP). Because the cause is unknown, it is IPF (Idiopathic Pulmonary Fibrosis). I had my diagnosis locally and then confirmed and done in greater detail at the University of Chicago. I've been on oxygen since the day of diagnosis. My life is and has been great however. I've lived like never before, recognizing that this might be the last year I can do things. I've traveled and met people. As to the symptoms there are many things I can't do. Lifting, carrying, bending over to do something are things just too strenuous for me. I also can't go as long during a day. I don't have a full day of energy, but I sure can enjoy a lot in several hours and then rest. VATS is an invasive surgery. It's something to carefully think about if it's recommended. Some have no trouble and are home in a couple of days and feel like it was nothing. Others have moderate pain after. Others have severe complications requiring hospitalization for longer or again after, but then recover. Unless you had an ABG (Arterial Blood Gas), you have no blood tests to show your oxygen. You would know if you had that because they would have taken blood from your artery rather than a vein. The easiest way of evaluating your oxygen levels is a simple oximeter and walking with it on your finger. A six minute walk is quite standard. The other tests you should have are Pulmonary Function Tests (PFT's). These will measure the current levels of your lung capabilities. -Support , Ken Raphael wrote: > > Bruce, > > I looked up my medical records again and there it is: " Interstitial Lung Disease " but I totally agree - I WANT undeniable proof! > > I apologize; all this has been about me and my condition. Please tell me your journey! Did you seek medical help because of symptoms or was it discovered during a routine exam? How long have you had PF and what are your symptoms now? How invasive is an open lung biopsy and what is the recovery period? Etc. > > Would you happen to know what abbreviation is used on a medical report for blood/oxygen levels? I have all these letters and scores on my report but no idea how to read them. > > Thanks, Bruce! > Ken > > > > > From: Bruce Moreland brucemoreland@... > Subject: Re: Veterans Benefits > To: Breathe-Support > Date: Monday, March 9, 2009, 1:37 PM > > > > > > > > Ken > > You may well have it but I just wouldn't be comfortable personally with > a determination only from an X-Ray. As you were part of a special group > being tested, perhaps that was among the things they anticipated > finding, whereas in most of our cases it is not what they expected to > see. Also, you need to know if they can detect what form of the disease. > Get copies of all results and interpretations and charts. Many of us had > PF diagnosed from CT's but had biopsies to determine the form. Some even > had to have the biopsies to determine it was PF or something else. > > > > > > > > > > > > > > From: Mango man mangomaninparadise@ ... > > > > Subject: Re: Veterans Benefits > > > > To: Breathe-Support@ yahoogroups. com > > > > Date: Sunday, March 8, 2009, 10:20 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been directed by other veterans to apply for medical > > benefits. > > > I was hesitant at first for the VA Hospitals and clinics have come > > under > > > attack over the years for their less than professional treatment of > > our > > > veterans. But I went ahead and applied to see whether I would > qualify. > > > As it turns out, I am entitled to medical coverage (Priority Group > 7c) > > > for my net worth (for the moment) is at a level high enough to > > requires > > > I have co-pays for my doctors visits and medications. I currently am > > > covered by a Blue Cross/Blue Shield plan which would then become my > > > secondary to the VA. I am quite skeptical that they would be able to > > > deal with something like IPF but I have been told there have > > specialized > > > centers around the country that work closely with major teaching > > > hospitals to include even the IPF Net. I am wondering if any of you > on > > > this network currently receive your care through the Veterans > > > Administration? If you do, could you relate > > > > your experiences? > > > > > > > > Mike > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Ken My journey started like many. As it turns out I had CT's two months earlier which clearly indicated Interstitial Lung Disease. The problem was that they were so busy concentrating on enlarged lymph nodes that the doctors didn't notice the ILD. Now, I was getting a thorough examination and I insisted there was something wrong other than me being old and out of shape. My mental health counselor had long insisted there was a physical issue not being discovered but we kept looking the neurological route. However, three times I had experienced a shortness of breath so severe I thought I'd never get my breath back. They were putting a monitor in my car, taking it out, and carrying something into my apartment. I know now that those three times I probably dropped down into the 60's or 50's. At the end of my exam my primary, still not truly believing there was a problem, had me do a six minute walk. When I finished and the nurse told him how low I dropped, he said that wasn't what he would have expected and immediately made me an appointment with the pulmonologist. Now, on top of the CT's, I did have a VATs (lung biopsy). My CT's have been reviewed by many doctors and my VATS slides by three different pathologists. I am confirmed, with no uncertainty by any of them, to have Usual Interstitial Pneumonitis (UIP). Because the cause is unknown, it is IPF (Idiopathic Pulmonary Fibrosis). I had my diagnosis locally and then confirmed and done in greater detail at the University of Chicago. I've been on oxygen since the day of diagnosis. My life is and has been great however. I've lived like never before, recognizing that this might be the last year I can do things. I've traveled and met people. As to the symptoms there are many things I can't do. Lifting, carrying, bending over to do something are things just too strenuous for me. I also can't go as long during a day. I don't have a full day of energy, but I sure can enjoy a lot in several hours and then rest. VATS is an invasive surgery. It's something to carefully think about if it's recommended. Some have no trouble and are home in a couple of days and feel like it was nothing. Others have moderate pain after. Others have severe complications requiring hospitalization for longer or again after, but then recover. Unless you had an ABG (Arterial Blood Gas), you have no blood tests to show your oxygen. You would know if you had that because they would have taken blood from your artery rather than a vein. The easiest way of evaluating your oxygen levels is a simple oximeter and walking with it on your finger. A six minute walk is quite standard. The other tests you should have are Pulmonary Function Tests (PFT's). These will measure the current levels of your lung capabilities. -Support , Ken Raphael wrote: > > Bruce, > > I looked up my medical records again and there it is: " Interstitial Lung Disease " but I totally agree - I WANT undeniable proof! > > I apologize; all this has been about me and my condition. Please tell me your journey! Did you seek medical help because of symptoms or was it discovered during a routine exam? How long have you had PF and what are your symptoms now? How invasive is an open lung biopsy and what is the recovery period? Etc. > > Would you happen to know what abbreviation is used on a medical report for blood/oxygen levels? I have all these letters and scores on my report but no idea how to read them. > > Thanks, Bruce! > Ken > > > > > From: Bruce Moreland brucemoreland@... > Subject: Re: Veterans Benefits > To: Breathe-Support > Date: Monday, March 9, 2009, 1:37 PM > > > > > > > > Ken > > You may well have it but I just wouldn't be comfortable personally with > a determination only from an X-Ray. As you were part of a special group > being tested, perhaps that was among the things they anticipated > finding, whereas in most of our cases it is not what they expected to > see. Also, you need to know if they can detect what form of the disease. > Get copies of all results and interpretations and charts. Many of us had > PF diagnosed from CT's but had biopsies to determine the form. Some even > had to have the biopsies to determine it was PF or something else. > > > > > > > > > > > > > > From: Mango man mangomaninparadise@ ... > > > > Subject: Re: Veterans Benefits > > > > To: Breathe-Support@ yahoogroups. com > > > > Date: Sunday, March 8, 2009, 10:20 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been directed by other veterans to apply for medical > > benefits. > > > I was hesitant at first for the VA Hospitals and clinics have come > > under > > > attack over the years for their less than professional treatment of > > our > > > veterans. But I went ahead and applied to see whether I would > qualify. > > > As it turns out, I am entitled to medical coverage (Priority Group > 7c) > > > for my net worth (for the moment) is at a level high enough to > > requires > > > I have co-pays for my doctors visits and medications. I currently am > > > covered by a Blue Cross/Blue Shield plan which would then become my > > > secondary to the VA. I am quite skeptical that they would be able to > > > deal with something like IPF but I have been told there have > > specialized > > > centers around the country that work closely with major teaching > > > hospitals to include even the IPF Net. I am wondering if any of you > on > > > this network currently receive your care through the Veterans > > > Administration? If you do, could you relate > > > > your experiences? > > > > > > > > Mike > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Dear Bruce, I am genuinely taken back by what you have and are experiencing. I feel inadequate to even respond to what you are going through. Your attitude is commendable! Thank you for taking the time to share. For me, what helps the most, is hearing what someone, like yourself, is going through on a daily basis. A new friend, Ken R. PS I did some research a few minutes ago on the Internet to find out what a PFT Clinic is. Will I see a pulmonologist or technician at the clinic? I assume this is one of the first steps in the diagnosis/treatment process. Thanks again!>>> From: Bruce Moreland brucemoreland@ ...> Subject: Re: Veterans Benefits> To: Breathe-Support@ yahoogroups. com> Date: Monday, March 9, 2009, 1:37 PM>>>>>>>> Ken>> You may well have it but I just wouldn't be comfortable personallywith> a determination only from an X-Ray. As you were part of a specialgroup> being tested, perhaps that was among the things they anticipated> finding, whereas in most of our cases it is not what they expected to> see. Also, you need to know if they can detect what form of thedisease.> Get copies of all results and interpretations and charts. Many of ushad> PF diagnosed from CT's but had biopsies to determine the form. Someeven> had to have the biopsies to determine it was PF or something else.>> > > > >> > > >> > > > From: Mango man mangomaninparadise@ ...> > > > Subject: Re: Veterans Benefits> > > > To: Breathe-Support@ yahoogroups. com> > > > Date: Sunday, March 8, 2009, 10:20 PM> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > >> > > > I have been directed by other veterans to apply for medical> > benefits.> > > I was hesitant at first for the VA Hospitals and clinics have come> > under> > > attack over the years for their less than professional treatmentof> > our> > > veterans. But I went ahead and applied to see whether I would> qualify.> > > As it turns out, I am entitled to medical coverage (Priority Group> 7c)> > > for my net worth (for the moment) is at a level high enough to> > requires> > > I have co-pays for my doctors visits and medications. I currentlyam> > > covered by a Blue Cross/Blue Shield plan which would then becomemy> > > secondary to the VA. I am quite skeptical that they would be ableto> > > deal with something like IPF but I have been told there have> > specialized> > > centers around the country that work closely with major teaching> > > hospitals to include even the IPF Net. I am wondering if any ofyou> on> > > this network currently receive your care through the Veterans> > > Administration? If you do, could you relate> > > > your experiences?> > > >> > > > Mike> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2009 Report Share Posted March 9, 2009 Ken Technician will do the PFT's but doctor will discuss them with you. > > > > > > > > > > > > > > > From: Mango man mangomaninparadise@ ... > > > > > Subject: Re: Veterans Benefits > > > > > To: Breathe-Support@ yahoogroups. com > > > > > Date: Sunday, March 8, 2009, 10:20 PM > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > I have been directed by other veterans to apply for medical > > > benefits. > > > > I was hesitant at first for the VA Hospitals and clinics have come > > > under > > > > attack over the years for their less than professional treatment > of > > > our > > > > veterans. But I went ahead and applied to see whether I would > > qualify. > > > > As it turns out, I am entitled to medical coverage (Priority Group > > 7c) > > > > for my net worth (for the moment) is at a level high enough to > > > requires > > > > I have co-pays for my doctors visits and medications. I currently > am > > > > covered by a Blue Cross/Blue Shield plan which would then become > my > > > > secondary to the VA. I am quite skeptical that they would be able > to > > > > deal with something like IPF but I have been told there have > > > specialized > > > > centers around the country that work closely with major teaching > > > > hospitals to include even the IPF Net. I am wondering if any of > you > > on > > > > this network currently receive your care through the Veterans > > > > Administration? If you do, could you relate > > > > > your experiences? > > > > > > > > > > Mike > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Mike i don't know the specific details my ex is a vet and has ALS the VA does help with some of his needs don't know which needs when he retired after his diagnosis, he was able to collect social security disabilty and went on medicare right away the 2 year waiting period for patients with ALS had been waived around the time of his diagnosis his current wife suggested that I contact the VA since we were married at the time he was in the army but i am not qualified for any help because of the divorce Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 6:20 PM I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Mike i don't know the specific details my ex is a vet and has ALS the VA does help with some of his needs don't know which needs when he retired after his diagnosis, he was able to collect social security disabilty and went on medicare right away the 2 year waiting period for patients with ALS had been waived around the time of his diagnosis his current wife suggested that I contact the VA since we were married at the time he was in the army but i am not qualified for any help because of the divorce Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 6:20 PM I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Mike i don't know the specific details my ex is a vet and has ALS the VA does help with some of his needs don't know which needs when he retired after his diagnosis, he was able to collect social security disabilty and went on medicare right away the 2 year waiting period for patients with ALS had been waived around the time of his diagnosis his current wife suggested that I contact the VA since we were married at the time he was in the army but i am not qualified for any help because of the divorce Pink Joyce IPF 3/06 Pennsylvania Donate Life Listed 1/09 www.transplantfund.org--- Subject: Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 6:20 PM I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Pink...do you still have your Cobra ins card? Is that still active? So many things have changed...my former husband was killed by a drunk driver and I had Cobra for years and years...until I remarried. But I THINK, if Rich should die I could reinstate Cobra. Former husband was a navy officer and the ins was great back 20 some years ago. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 6:20 PM I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Pink...do you still have your Cobra ins card? Is that still active? So many things have changed...my former husband was killed by a drunk driver and I had Cobra for years and years...until I remarried. But I THINK, if Rich should die I could reinstate Cobra. Former husband was a navy officer and the ins was great back 20 some years ago. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 6:20 PM I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2009 Report Share Posted March 10, 2009 Pink...do you still have your Cobra ins card? Is that still active? So many things have changed...my former husband was killed by a drunk driver and I had Cobra for years and years...until I remarried. But I THINK, if Rich should die I could reinstate Cobra. Former husband was a navy officer and the ins was great back 20 some years ago. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Veterans BenefitsTo: Breathe-Support Date: Sunday, March 8, 2009, 6:20 PM I have been directed by other veterans to apply for medical benefits. I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans. But I went ahead and applied to see whether I would qualify. As it turns out, I am entitled to medical coverage (Priority Group 7c) for my net worth (for the moment) is at a level high enough to requires I have co-pays for my doctors visits and medications. I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA. I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals to include even the IPF Net. I am wondering if any of you on this network currently receive your care through the Veterans Administration? If you do, could you relate your experiences? Mike Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2009 Report Share Posted March 11, 2009 Hi Ken Yes the North Chicago, Illinois VA did the X-ray where they found a growth tumor in my right lung so they then did an HRCT to get a better look at it and found that in addition to emphysema they believed that I had IPF. They set me up with an open lung biopsy at the Milwaukee, Wisconsin VA to have the open lung biopsy and to have the tumor removed from my right lung at the same time. That's when I was diagnosed with IPF for sure. I was put on oxygen in May of 2008. I'm 10% disabled due to Tinnitus and I'm low income so I only pay $8.00 co-pay for my meds. The VA has treated me very well. Any more questions Please Ask. Tom > > > > I have been directed by other veterans to apply for medical benefits.� I was hesitant at first for the VA Hospitals and clinics have come under attack over the years for their less than professional treatment of our veterans.� But I went ahead and applied to see whether I would qualify.� As it turns out, I am entitled to medical coverage (Priority Group 7c)�for my net worth (for the moment) is at a level�high enough to�requires I have co-pays for my doctors visits and medications.� I currently am covered by a Blue Cross/Blue Shield plan which would then become my secondary to the VA.� I am quite skeptical that they would be able to deal with something like IPF but I have been told there have specialized centers around the country that work closely with major teaching hospitals�to include�even the IPF Net.� I am wondering if any of you on this network currently receive your care through the Veterans Administration?� If you do, could you > relate > > your experiences? > > � > > Mike� > > > Quote Link to comment Share on other sites More sharing options...
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