Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Thanks Joyce thats the problem the ho-hum part that isnt sitting well with me. And to find a doctor that speacilized in Interstitial Lung Disease is the other challenge. They either have very little information about the specific doctors or seem to fall within the categories you stated. Sandie I will add my city I thought I already had that in there. > > > > > > > > > > > > Hello All, > > > > > > > > > > > > I am in a much better place today so thank you all for your > > > > > > compassion and kindness through these last few days! > > > > > > > > > > > > Onward….. > > > > > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > > > basically " thanks for putting your trust in us and blah blah > > > and > > > > > that > > > > > > we can see you in January of 2008 " . I know that's what the > > > Mayo > > > > > > originally told the referral specialist at the clinic when > > she > > > > > called > > > > > > two weeks ago but she said no that was too long and that I > > need > > > > to > > > > > be > > > > > > seen before that. I received this letter just 2 days after > > > > seeing > > > > > > the internist in which he told me they would be calling me in > > a > > > > > week > > > > > > or so to setup the appointment. I called the referral person > > > at > > > > > the > > > > > > clinic when I received the letter and left her a message > > about > > > > the > > > > > > letter I got from the Mayo and about what the doctor at the > > > > clinic > > > > > > told me 2 days earlier. If she could just check out with the > > > > > doctor > > > > > > and let me know am I to expect a call in the next few weeks > > > from > > > > > the > > > > > > Mayo or am I waiting for January???? > > > > > > > > > > > > As of today I hadn't heard from anyone. So reading 's > > > email > > > > > to > > > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > > > literally but it has been very hard to work or accomplish any > > > > > actual > > > > > > work in the last few weeks) this is my life not theirs so > > they > > > > need > > > > > > to get with the program here. Since my faith in doctors has > > > > > > literally been thrown out the window these last 2 years I > > > didn't > > > > > have > > > > > > much faith in this internist who told me the " KEY " word > > > > is " minimal > > > > > > honeycombing " because everything I read said that part of > > the > > > > lung > > > > > > is already gone! Me the nice person I am tried to give them > > > the > > > > > > benefit of the doubt so I waited. > > > > > > > > > > > > Well today I called this internists office spoke to one of > > the > > > > > nurses > > > > > > about the mixed messages I was getting from them and the Mayo > > > > > clinic > > > > > > and what am I supposed to be doing/waiting for because I > > > haven't > > > > > > received a call from her office or the Mayo. She read > > through > > > > the > > > > > > notes and stated well " I don't know what is going on; the > > Dr's > > > > > notes > > > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > > > would > > > > > > be calling you so I will have to go talk to the doctor and > > find > > > > out > > > > > > what is going on and call you back because I really don't > > know > > > > what > > > > > > is going on now! " > > > > > > > > > > > > Just exactly what I thought these last 2 years has been > > nothing > > > > but > > > > > > HELL for me with doctors ever since I switched and I knew > > > better > > > > > > because my health history has been so complicated and gets > > more > > > > and > > > > > > more complicated as each month goes on. They just don't > > care! > > > I > > > > > > have an appointment with my original family doctor that I had > > > for > > > > > the > > > > > > last 10-20 years (it was her chief medical director who was > > my > > > > > doctor > > > > > > before her) so she knew my history before she finished her > > > > > residency > > > > > > and took me on when my doctor left the clinic. > > > > > > > > > > > > But she switched clinics because the clinic where she was at > > > and > > > > > > where I went to became a federal clinic and not sure what all > > > > that > > > > > > was about besides teaching but apparently she didn't like it > > > and > > > > > > left. This left me hanging. Well I had enough of this crap > > and > > > > > these > > > > > > doctors sitting around thinking it's a sinus infection, it's > > a > > > > > virus, > > > > > > this or that and NOT referring me. I went out on my own to > > get > > > > the > > > > > > internist appointment for Petes sake my own RA doc didn't > > even > > > > > refer > > > > > > me or find that I have PF! > > > > > > > > > > > > So PF is IPF and just because I have it doesn't tell what > > kind > > > I > > > > > have > > > > > > or what it's caused from right? And when this doctors office > > > > calls > > > > > > back and says its in January for the Mayo clinic even though > > > they > > > > > > didn't give me a date, do I wait or say no way I want to be > > > > > referred > > > > > > to a lung doc? Which I don't need a referral for my > > insurance > > > > its > > > > > > open access. So do I just say I am finding my own or what do > > > you > > > > > all > > > > > > recommend? > > > > > > > > > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call > > me > > > > back > > > > > > they will be hearing from me! > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Thanks Joyce thats the problem the ho-hum part that isnt sitting well with me. And to find a doctor that speacilized in Interstitial Lung Disease is the other challenge. They either have very little information about the specific doctors or seem to fall within the categories you stated. Sandie I will add my city I thought I already had that in there. > > > > > > > > > > > > Hello All, > > > > > > > > > > > > I am in a much better place today so thank you all for your > > > > > > compassion and kindness through these last few days! > > > > > > > > > > > > Onward….. > > > > > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > > > basically " thanks for putting your trust in us and blah blah > > > and > > > > > that > > > > > > we can see you in January of 2008 " . I know that's what the > > > Mayo > > > > > > originally told the referral specialist at the clinic when > > she > > > > > called > > > > > > two weeks ago but she said no that was too long and that I > > need > > > > to > > > > > be > > > > > > seen before that. I received this letter just 2 days after > > > > seeing > > > > > > the internist in which he told me they would be calling me in > > a > > > > > week > > > > > > or so to setup the appointment. I called the referral person > > > at > > > > > the > > > > > > clinic when I received the letter and left her a message > > about > > > > the > > > > > > letter I got from the Mayo and about what the doctor at the > > > > clinic > > > > > > told me 2 days earlier. If she could just check out with the > > > > > doctor > > > > > > and let me know am I to expect a call in the next few weeks > > > from > > > > > the > > > > > > Mayo or am I waiting for January???? > > > > > > > > > > > > As of today I hadn't heard from anyone. So reading 's > > > email > > > > > to > > > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > > > literally but it has been very hard to work or accomplish any > > > > > actual > > > > > > work in the last few weeks) this is my life not theirs so > > they > > > > need > > > > > > to get with the program here. Since my faith in doctors has > > > > > > literally been thrown out the window these last 2 years I > > > didn't > > > > > have > > > > > > much faith in this internist who told me the " KEY " word > > > > is " minimal > > > > > > honeycombing " because everything I read said that part of > > the > > > > lung > > > > > > is already gone! Me the nice person I am tried to give them > > > the > > > > > > benefit of the doubt so I waited. > > > > > > > > > > > > Well today I called this internists office spoke to one of > > the > > > > > nurses > > > > > > about the mixed messages I was getting from them and the Mayo > > > > > clinic > > > > > > and what am I supposed to be doing/waiting for because I > > > haven't > > > > > > received a call from her office or the Mayo. She read > > through > > > > the > > > > > > notes and stated well " I don't know what is going on; the > > Dr's > > > > > notes > > > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > > > would > > > > > > be calling you so I will have to go talk to the doctor and > > find > > > > out > > > > > > what is going on and call you back because I really don't > > know > > > > what > > > > > > is going on now! " > > > > > > > > > > > > Just exactly what I thought these last 2 years has been > > nothing > > > > but > > > > > > HELL for me with doctors ever since I switched and I knew > > > better > > > > > > because my health history has been so complicated and gets > > more > > > > and > > > > > > more complicated as each month goes on. They just don't > > care! > > > I > > > > > > have an appointment with my original family doctor that I had > > > for > > > > > the > > > > > > last 10-20 years (it was her chief medical director who was > > my > > > > > doctor > > > > > > before her) so she knew my history before she finished her > > > > > residency > > > > > > and took me on when my doctor left the clinic. > > > > > > > > > > > > But she switched clinics because the clinic where she was at > > > and > > > > > > where I went to became a federal clinic and not sure what all > > > > that > > > > > > was about besides teaching but apparently she didn't like it > > > and > > > > > > left. This left me hanging. Well I had enough of this crap > > and > > > > > these > > > > > > doctors sitting around thinking it's a sinus infection, it's > > a > > > > > virus, > > > > > > this or that and NOT referring me. I went out on my own to > > get > > > > the > > > > > > internist appointment for Petes sake my own RA doc didn't > > even > > > > > refer > > > > > > me or find that I have PF! > > > > > > > > > > > > So PF is IPF and just because I have it doesn't tell what > > kind > > > I > > > > > have > > > > > > or what it's caused from right? And when this doctors office > > > > calls > > > > > > back and says its in January for the Mayo clinic even though > > > they > > > > > > didn't give me a date, do I wait or say no way I want to be > > > > > referred > > > > > > to a lung doc? Which I don't need a referral for my > > insurance > > > > its > > > > > > open access. So do I just say I am finding my own or what do > > > you > > > > > all > > > > > > recommend? > > > > > > > > > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call > > me > > > > back > > > > > > they will be hearing from me! > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Thanks Joyce thats the problem the ho-hum part that isnt sitting well with me. And to find a doctor that speacilized in Interstitial Lung Disease is the other challenge. They either have very little information about the specific doctors or seem to fall within the categories you stated. Sandie I will add my city I thought I already had that in there. > > > > > > > > > > > > Hello All, > > > > > > > > > > > > I am in a much better place today so thank you all for your > > > > > > compassion and kindness through these last few days! > > > > > > > > > > > > Onward….. > > > > > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > > > basically " thanks for putting your trust in us and blah blah > > > and > > > > > that > > > > > > we can see you in January of 2008 " . I know that's what the > > > Mayo > > > > > > originally told the referral specialist at the clinic when > > she > > > > > called > > > > > > two weeks ago but she said no that was too long and that I > > need > > > > to > > > > > be > > > > > > seen before that. I received this letter just 2 days after > > > > seeing > > > > > > the internist in which he told me they would be calling me in > > a > > > > > week > > > > > > or so to setup the appointment. I called the referral person > > > at > > > > > the > > > > > > clinic when I received the letter and left her a message > > about > > > > the > > > > > > letter I got from the Mayo and about what the doctor at the > > > > clinic > > > > > > told me 2 days earlier. If she could just check out with the > > > > > doctor > > > > > > and let me know am I to expect a call in the next few weeks > > > from > > > > > the > > > > > > Mayo or am I waiting for January???? > > > > > > > > > > > > As of today I hadn't heard from anyone. So reading 's > > > email > > > > > to > > > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > > > literally but it has been very hard to work or accomplish any > > > > > actual > > > > > > work in the last few weeks) this is my life not theirs so > > they > > > > need > > > > > > to get with the program here. Since my faith in doctors has > > > > > > literally been thrown out the window these last 2 years I > > > didn't > > > > > have > > > > > > much faith in this internist who told me the " KEY " word > > > > is " minimal > > > > > > honeycombing " because everything I read said that part of > > the > > > > lung > > > > > > is already gone! Me the nice person I am tried to give them > > > the > > > > > > benefit of the doubt so I waited. > > > > > > > > > > > > Well today I called this internists office spoke to one of > > the > > > > > nurses > > > > > > about the mixed messages I was getting from them and the Mayo > > > > > clinic > > > > > > and what am I supposed to be doing/waiting for because I > > > haven't > > > > > > received a call from her office or the Mayo. She read > > through > > > > the > > > > > > notes and stated well " I don't know what is going on; the > > Dr's > > > > > notes > > > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > > > would > > > > > > be calling you so I will have to go talk to the doctor and > > find > > > > out > > > > > > what is going on and call you back because I really don't > > know > > > > what > > > > > > is going on now! " > > > > > > > > > > > > Just exactly what I thought these last 2 years has been > > nothing > > > > but > > > > > > HELL for me with doctors ever since I switched and I knew > > > better > > > > > > because my health history has been so complicated and gets > > more > > > > and > > > > > > more complicated as each month goes on. They just don't > > care! > > > I > > > > > > have an appointment with my original family doctor that I had > > > for > > > > > the > > > > > > last 10-20 years (it was her chief medical director who was > > my > > > > > doctor > > > > > > before her) so she knew my history before she finished her > > > > > residency > > > > > > and took me on when my doctor left the clinic. > > > > > > > > > > > > But she switched clinics because the clinic where she was at > > > and > > > > > > where I went to became a federal clinic and not sure what all > > > > that > > > > > > was about besides teaching but apparently she didn't like it > > > and > > > > > > left. This left me hanging. Well I had enough of this crap > > and > > > > > these > > > > > > doctors sitting around thinking it's a sinus infection, it's > > a > > > > > virus, > > > > > > this or that and NOT referring me. I went out on my own to > > get > > > > the > > > > > > internist appointment for Petes sake my own RA doc didn't > > even > > > > > refer > > > > > > me or find that I have PF! > > > > > > > > > > > > So PF is IPF and just because I have it doesn't tell what > > kind > > > I > > > > > have > > > > > > or what it's caused from right? And when this doctors office > > > > calls > > > > > > back and says its in January for the Mayo clinic even though > > > they > > > > > > didn't give me a date, do I wait or say no way I want to be > > > > > referred > > > > > > to a lung doc? Which I don't need a referral for my > > insurance > > > > its > > > > > > open access. So do I just say I am finding my own or what do > > > you > > > > > all > > > > > > recommend? > > > > > > > > > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call > > me > > > > back > > > > > > they will be hearing from me! > > > > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 I did add my information to the database portion, but I live in Somerset, WI which is closer to the Twin Cities Metro Area then any where else in WI. Its just across the Minnesota border. Sandie > > > > > > > > Hello All, > > > > > > > > I am in a much better place today so thank you all for your > > > > compassion and kindness through these last few days! > > > > > > > > Onward….. > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > basically " thanks for putting your trust in us and blah blah and > > > that > > > > we can see you in January of 2008 " . I know that's what the Mayo > > > > originally told the referral specialist at the clinic when she > > > called > > > > two weeks ago but she said no that was too long and that I need > > to > > > be > > > > seen before that. I received this letter just 2 days after > > seeing > > > > the internist in which he told me they would be calling me in a > > > week > > > > or so to setup the appointment. I called the referral person at > > > the > > > > clinic when I received the letter and left her a message about > > the > > > > letter I got from the Mayo and about what the doctor at the > > clinic > > > > told me 2 days earlier. If she could just check out with the > > > doctor > > > > and let me know am I to expect a call in the next few weeks from > > > the > > > > Mayo or am I waiting for January???? > > > > > > > > As of today I hadn't heard from anyone. So reading 's email > > > to > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > literally but it has been very hard to work or accomplish any > > > actual > > > > work in the last few weeks) this is my life not theirs so they > > need > > > > to get with the program here. Since my faith in doctors has > > > > literally been thrown out the window these last 2 years I didn't > > > have > > > > much faith in this internist who told me the " KEY " word > > is " minimal > > > > honeycombing " because everything I read said that part of the > > lung > > > > is already gone! Me the nice person I am tried to give them the > > > > benefit of the doubt so I waited. > > > > > > > > Well today I called this internists office spoke to one of the > > > nurses > > > > about the mixed messages I was getting from them and the Mayo > > > clinic > > > > and what am I supposed to be doing/waiting for because I haven't > > > > received a call from her office or the Mayo. She read through > > the > > > > notes and stated well " I don't know what is going on; the Dr's > > > notes > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > would > > > > be calling you so I will have to go talk to the doctor and find > > out > > > > what is going on and call you back because I really don't know > > what > > > > is going on now! " > > > > > > > > Just exactly what I thought these last 2 years has been nothing > > but > > > > HELL for me with doctors ever since I switched and I knew better > > > > because my health history has been so complicated and gets more > > and > > > > more complicated as each month goes on. They just don't care! I > > > > have an appointment with my original family doctor that I had for > > > the > > > > last 10-20 years (it was her chief medical director who was my > > > doctor > > > > before her) so she knew my history before she finished her > > > residency > > > > and took me on when my doctor left the clinic. > > > > > > > > But she switched clinics because the clinic where she was at and > > > > where I went to became a federal clinic and not sure what all > > that > > > > was about besides teaching but apparently she didn't like it and > > > > left. This left me hanging. Well I had enough of this crap and > > > these > > > > doctors sitting around thinking it's a sinus infection, it's a > > > virus, > > > > this or that and NOT referring me. I went out on my own to get > > the > > > > internist appointment for Petes sake my own RA doc didn't even > > > refer > > > > me or find that I have PF! > > > > > > > > So PF is IPF and just because I have it doesn't tell what kind I > > > have > > > > or what it's caused from right? And when this doctors office > > calls > > > > back and says its in January for the Mayo clinic even though they > > > > didn't give me a date, do I wait or say no way I want to be > > > referred > > > > to a lung doc? Which I don't need a referral for my insurance > > its > > > > open access. So do I just say I am finding my own or what do you > > > all > > > > recommend? > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call me > > back > > > > they will be hearing from me! > > > > > > > > > > > > Sandie > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Sandie, I am going to do some research and will get back to you. ette > > > > > > Hello All, > > > > > > I am in a much better place today so thank you all for your > > > compassion and kindness through these last few days! > > > > > > Onward….. > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > basically " thanks for putting your trust in us and blah blah and > > that > > > we can see you in January of 2008 " . I know that's what the Mayo > > > originally told the referral specialist at the clinic when she > > called > > > two weeks ago but she said no that was too long and that I need > to > > be > > > seen before that. I received this letter just 2 days after > seeing > > > the internist in which he told me they would be calling me in a > > week > > > or so to setup the appointment. I called the referral person at > > the > > > clinic when I received the letter and left her a message about > the > > > letter I got from the Mayo and about what the doctor at the > clinic > > > told me 2 days earlier. If she could just check out with the > > doctor > > > and let me know am I to expect a call in the next few weeks from > > the > > > Mayo or am I waiting for January???? > > > > > > As of today I hadn't heard from anyone. So reading 's email > > to > > > Joe I thought well no sense sitting her waiting anymore (not > > > literally but it has been very hard to work or accomplish any > > actual > > > work in the last few weeks) this is my life not theirs so they > need > > > to get with the program here. Since my faith in doctors has > > > literally been thrown out the window these last 2 years I didn't > > have > > > much faith in this internist who told me the " KEY " word > is " minimal > > > honeycombing " because everything I read said that part of the > lung > > > is already gone! Me the nice person I am tried to give them the > > > benefit of the doubt so I waited. > > > > > > Well today I called this internists office spoke to one of the > > nurses > > > about the mixed messages I was getting from them and the Mayo > > clinic > > > and what am I supposed to be doing/waiting for because I haven't > > > received a call from her office or the Mayo. She read through > the > > > notes and stated well " I don't know what is going on; the Dr's > > notes > > > say he spoke to the RA doc on the 9th of October and the Mayo > would > > > be calling you so I will have to go talk to the doctor and find > out > > > what is going on and call you back because I really don't know > what > > > is going on now! " > > > > > > Just exactly what I thought these last 2 years has been nothing > but > > > HELL for me with doctors ever since I switched and I knew better > > > because my health history has been so complicated and gets more > and > > > more complicated as each month goes on. They just don't care! I > > > have an appointment with my original family doctor that I had for > > the > > > last 10-20 years (it was her chief medical director who was my > > doctor > > > before her) so she knew my history before she finished her > > residency > > > and took me on when my doctor left the clinic. > > > > > > But she switched clinics because the clinic where she was at and > > > where I went to became a federal clinic and not sure what all > that > > > was about besides teaching but apparently she didn't like it and > > > left. This left me hanging. Well I had enough of this crap and > > these > > > doctors sitting around thinking it's a sinus infection, it's a > > virus, > > > this or that and NOT referring me. I went out on my own to get > the > > > internist appointment for Petes sake my own RA doc didn't even > > refer > > > me or find that I have PF! > > > > > > So PF is IPF and just because I have it doesn't tell what kind I > > have > > > or what it's caused from right? And when this doctors office > calls > > > back and says its in January for the Mayo clinic even though they > > > didn't give me a date, do I wait or say no way I want to be > > referred > > > to a lung doc? Which I don't need a referral for my insurance > its > > > open access. So do I just say I am finding my own or what do you > > all > > > recommend? > > > > > > > > > > > > So I will give them until this afternoon if they don't call me > back > > > they will be hearing from me! > > > > > > > > > Sandie > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Thanks Joyce for the Public Service announcement. Much appreciated. Anyone who is in need of a good pulmonologist, we have a listing of docs across the country. Just give me a call in the office @ . Leanne Joyce wrote: Sandie and ette.....and other newbies. Call Leanne at the Pulmonary Fibrosis Foundation, give her your location and she may have a doctor's name for you. Her phone number is on the Database under Contacts and also on the Home page. If you feel comfortable doing so, state your city and state here and some of us will know of good fibrosis doctors. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Hello All, > > > > > > I am in a much better place today so thank you all for your > > > compassion and kindness through these last few days!> > > > > > Onward….. > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > basically "thanks for putting your trust in us and blah blah and > > that > > > we can see you in January of 2008". I know that's what the Mayo > > > originally told the referral specialist at the clinic when she > > called > > > two weeks ago but she said no that was too long and that I need > to > > be > > > seen before that. I received this letter just 2 days after > seeing > > > the internist in which he told me they would be calling me in a > > week > > > or so to setup the appointment. I called the referral person at > > the > > > clinic when I received the letter and left her a message about > the > > > letter I got from the Mayo and about what the doctor at the > clinic > > > told me 2 days earlier. If she could just check out with the > > doctor > > > and let me know am I to expect a call in the next few weeks from > > the > > > Mayo or am I waiting for January???? > > > > > > As of today I hadn't heard from anyone. So reading 's email > > to > > > Joe I thought well no sense sitting her waiting anymore (not > > > literally but it has been very hard to work or accomplish any > > actual > > > work in the last few weeks) this is my life not theirs so they > need > > > to get with the program here. Since my faith in doctors has > > > literally been thrown out the window these last 2 years I didn't > > have > > > much faith in this internist who told me the "KEY" word > is "minimal > > > honeycombing" because everything I read said that part of the > lung > > > is already gone! Me the nice person I am tried to give them the > > > benefit of the doubt so I waited. > > > > > > Well today I called this internists office spoke to one of the > > nurses > > > about the mixed messages I was getting from them and the Mayo > > clinic > > > and what am I supposed to be doing/waiting for because I haven't > > > received a call from her office or the Mayo. She read through > the > > > notes and stated well "I don't know what is going on; the Dr's > > notes > > > say he spoke to the RA doc on the 9th of October and the Mayo > would > > > be calling you so I will have to go talk to the doctor and find > out > > > what is going on and call you back because I really don't know > what > > > is going on now!"> > > > > > Just exactly what I thought these last 2 years has been nothing > but > > > HELL for me with doctors ever since I switched and I knew better > > > because my health history has been so complicated and gets more > and > > > more complicated as each month goes on. They just don't care! I > > > have an appointment with my original family doctor that I had for > > the > > > last 10-20 years (it was her chief medical director who was my > > doctor > > > before her) so she knew my history before she finished her > > residency > > > and took me on when my doctor left the clinic. > > > > > > But she switched clinics because the clinic where she was at and > > > where I went to became a federal clinic and not sure what all > that > > > was about besides teaching but apparently she didn't like it and > > > left. This left me hanging. Well I had enough of this crap and > > these > > > doctors sitting around thinking it's a sinus infection, it's a > > virus, > > > this or that and NOT referring me. I went out on my own to get > the > > > internist appointment for Petes sake my own RA doc didn't even > > refer > > > me or find that I have PF! > > > > > > So PF is IPF and just because I have it doesn't tell what kind I > > have > > > or what it's caused from right? And when this doctors office > calls > > > back and says its in January for the Mayo clinic even though they > > > didn't give me a date, do I wait or say no way I want to be > > referred > > > to a lung doc? Which I don't need a referral for my insurance > its > > > open access. So do I just say I am finding my own or what do you > > all > > > recommend?> > > > > > > > > > > > So I will give them until this afternoon if they don't call me > back > > > they will be hearing from me!> > > > > > > > > Sandie> > >> >> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 24, 2007 Report Share Posted October 24, 2007 Thanks Joyce for the Public Service announcement. Much appreciated. Anyone who is in need of a good pulmonologist, we have a listing of docs across the country. Just give me a call in the office @ . Leanne Joyce wrote: Sandie and ette.....and other newbies. Call Leanne at the Pulmonary Fibrosis Foundation, give her your location and she may have a doctor's name for you. Her phone number is on the Database under Contacts and also on the Home page. If you feel comfortable doing so, state your city and state here and some of us will know of good fibrosis doctors. Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.> > >> > > Hello All, > > > > > > I am in a much better place today so thank you all for your > > > compassion and kindness through these last few days!> > > > > > Onward….. > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > basically "thanks for putting your trust in us and blah blah and > > that > > > we can see you in January of 2008". I know that's what the Mayo > > > originally told the referral specialist at the clinic when she > > called > > > two weeks ago but she said no that was too long and that I need > to > > be > > > seen before that. I received this letter just 2 days after > seeing > > > the internist in which he told me they would be calling me in a > > week > > > or so to setup the appointment. I called the referral person at > > the > > > clinic when I received the letter and left her a message about > the > > > letter I got from the Mayo and about what the doctor at the > clinic > > > told me 2 days earlier. If she could just check out with the > > doctor > > > and let me know am I to expect a call in the next few weeks from > > the > > > Mayo or am I waiting for January???? > > > > > > As of today I hadn't heard from anyone. So reading 's email > > to > > > Joe I thought well no sense sitting her waiting anymore (not > > > literally but it has been very hard to work or accomplish any > > actual > > > work in the last few weeks) this is my life not theirs so they > need > > > to get with the program here. Since my faith in doctors has > > > literally been thrown out the window these last 2 years I didn't > > have > > > much faith in this internist who told me the "KEY" word > is "minimal > > > honeycombing" because everything I read said that part of the > lung > > > is already gone! Me the nice person I am tried to give them the > > > benefit of the doubt so I waited. > > > > > > Well today I called this internists office spoke to one of the > > nurses > > > about the mixed messages I was getting from them and the Mayo > > clinic > > > and what am I supposed to be doing/waiting for because I haven't > > > received a call from her office or the Mayo. She read through > the > > > notes and stated well "I don't know what is going on; the Dr's > > notes > > > say he spoke to the RA doc on the 9th of October and the Mayo > would > > > be calling you so I will have to go talk to the doctor and find > out > > > what is going on and call you back because I really don't know > what > > > is going on now!"> > > > > > Just exactly what I thought these last 2 years has been nothing > but > > > HELL for me with doctors ever since I switched and I knew better > > > because my health history has been so complicated and gets more > and > > > more complicated as each month goes on. They just don't care! I > > > have an appointment with my original family doctor that I had for > > the > > > last 10-20 years (it was her chief medical director who was my > > doctor > > > before her) so she knew my history before she finished her > > residency > > > and took me on when my doctor left the clinic. > > > > > > But she switched clinics because the clinic where she was at and > > > where I went to became a federal clinic and not sure what all > that > > > was about besides teaching but apparently she didn't like it and > > > left. This left me hanging. Well I had enough of this crap and > > these > > > doctors sitting around thinking it's a sinus infection, it's a > > virus, > > > this or that and NOT referring me. I went out on my own to get > the > > > internist appointment for Petes sake my own RA doc didn't even > > refer > > > me or find that I have PF! > > > > > > So PF is IPF and just because I have it doesn't tell what kind I > > have > > > or what it's caused from right? And when this doctors office > calls > > > back and says its in January for the Mayo clinic even though they > > > didn't give me a date, do I wait or say no way I want to be > > referred > > > to a lung doc? Which I don't need a referral for my insurance > its > > > open access. So do I just say I am finding my own or what do you > > all > > > recommend?> > > > > > > > > > > > So I will give them until this afternoon if they don't call me > back > > > they will be hearing from me!> > > > > > > > > Sandie> > >> >> __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Thanks ette! > > > > > > > > Hello All, > > > > > > > > I am in a much better place today so thank you all for your > > > > compassion and kindness through these last few days! > > > > > > > > Onward….. > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > basically " thanks for putting your trust in us and blah blah > and > > > that > > > > we can see you in January of 2008 " . I know that's what the > Mayo > > > > originally told the referral specialist at the clinic when she > > > called > > > > two weeks ago but she said no that was too long and that I need > > to > > > be > > > > seen before that. I received this letter just 2 days after > > seeing > > > > the internist in which he told me they would be calling me in a > > > week > > > > or so to setup the appointment. I called the referral person > at > > > the > > > > clinic when I received the letter and left her a message about > > the > > > > letter I got from the Mayo and about what the doctor at the > > clinic > > > > told me 2 days earlier. If she could just check out with the > > > doctor > > > > and let me know am I to expect a call in the next few weeks > from > > > the > > > > Mayo or am I waiting for January???? > > > > > > > > As of today I hadn't heard from anyone. So reading 's > email > > > to > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > literally but it has been very hard to work or accomplish any > > > actual > > > > work in the last few weeks) this is my life not theirs so they > > need > > > > to get with the program here. Since my faith in doctors has > > > > literally been thrown out the window these last 2 years I > didn't > > > have > > > > much faith in this internist who told me the " KEY " word > > is " minimal > > > > honeycombing " because everything I read said that part of the > > lung > > > > is already gone! Me the nice person I am tried to give them > the > > > > benefit of the doubt so I waited. > > > > > > > > Well today I called this internists office spoke to one of the > > > nurses > > > > about the mixed messages I was getting from them and the Mayo > > > clinic > > > > and what am I supposed to be doing/waiting for because I > haven't > > > > received a call from her office or the Mayo. She read through > > the > > > > notes and stated well " I don't know what is going on; the Dr's > > > notes > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > would > > > > be calling you so I will have to go talk to the doctor and find > > out > > > > what is going on and call you back because I really don't know > > what > > > > is going on now! " > > > > > > > > Just exactly what I thought these last 2 years has been nothing > > but > > > > HELL for me with doctors ever since I switched and I knew > better > > > > because my health history has been so complicated and gets more > > and > > > > more complicated as each month goes on. They just don't care! > I > > > > have an appointment with my original family doctor that I had > for > > > the > > > > last 10-20 years (it was her chief medical director who was my > > > doctor > > > > before her) so she knew my history before she finished her > > > residency > > > > and took me on when my doctor left the clinic. > > > > > > > > But she switched clinics because the clinic where she was at > and > > > > where I went to became a federal clinic and not sure what all > > that > > > > was about besides teaching but apparently she didn't like it > and > > > > left. This left me hanging. Well I had enough of this crap and > > > these > > > > doctors sitting around thinking it's a sinus infection, it's a > > > virus, > > > > this or that and NOT referring me. I went out on my own to get > > the > > > > internist appointment for Petes sake my own RA doc didn't even > > > refer > > > > me or find that I have PF! > > > > > > > > So PF is IPF and just because I have it doesn't tell what kind > I > > > have > > > > or what it's caused from right? And when this doctors office > > calls > > > > back and says its in January for the Mayo clinic even though > they > > > > didn't give me a date, do I wait or say no way I want to be > > > referred > > > > to a lung doc? Which I don't need a referral for my insurance > > its > > > > open access. So do I just say I am finding my own or what do > you > > > all > > > > recommend? > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call me > > back > > > > they will be hearing from me! > > > > > > > > > > > > Sandie > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Thanks ette! > > > > > > > > Hello All, > > > > > > > > I am in a much better place today so thank you all for your > > > > compassion and kindness through these last few days! > > > > > > > > Onward….. > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > basically " thanks for putting your trust in us and blah blah > and > > > that > > > > we can see you in January of 2008 " . I know that's what the > Mayo > > > > originally told the referral specialist at the clinic when she > > > called > > > > two weeks ago but she said no that was too long and that I need > > to > > > be > > > > seen before that. I received this letter just 2 days after > > seeing > > > > the internist in which he told me they would be calling me in a > > > week > > > > or so to setup the appointment. I called the referral person > at > > > the > > > > clinic when I received the letter and left her a message about > > the > > > > letter I got from the Mayo and about what the doctor at the > > clinic > > > > told me 2 days earlier. If she could just check out with the > > > doctor > > > > and let me know am I to expect a call in the next few weeks > from > > > the > > > > Mayo or am I waiting for January???? > > > > > > > > As of today I hadn't heard from anyone. So reading 's > email > > > to > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > literally but it has been very hard to work or accomplish any > > > actual > > > > work in the last few weeks) this is my life not theirs so they > > need > > > > to get with the program here. Since my faith in doctors has > > > > literally been thrown out the window these last 2 years I > didn't > > > have > > > > much faith in this internist who told me the " KEY " word > > is " minimal > > > > honeycombing " because everything I read said that part of the > > lung > > > > is already gone! Me the nice person I am tried to give them > the > > > > benefit of the doubt so I waited. > > > > > > > > Well today I called this internists office spoke to one of the > > > nurses > > > > about the mixed messages I was getting from them and the Mayo > > > clinic > > > > and what am I supposed to be doing/waiting for because I > haven't > > > > received a call from her office or the Mayo. She read through > > the > > > > notes and stated well " I don't know what is going on; the Dr's > > > notes > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > would > > > > be calling you so I will have to go talk to the doctor and find > > out > > > > what is going on and call you back because I really don't know > > what > > > > is going on now! " > > > > > > > > Just exactly what I thought these last 2 years has been nothing > > but > > > > HELL for me with doctors ever since I switched and I knew > better > > > > because my health history has been so complicated and gets more > > and > > > > more complicated as each month goes on. They just don't care! > I > > > > have an appointment with my original family doctor that I had > for > > > the > > > > last 10-20 years (it was her chief medical director who was my > > > doctor > > > > before her) so she knew my history before she finished her > > > residency > > > > and took me on when my doctor left the clinic. > > > > > > > > But she switched clinics because the clinic where she was at > and > > > > where I went to became a federal clinic and not sure what all > > that > > > > was about besides teaching but apparently she didn't like it > and > > > > left. This left me hanging. Well I had enough of this crap and > > > these > > > > doctors sitting around thinking it's a sinus infection, it's a > > > virus, > > > > this or that and NOT referring me. I went out on my own to get > > the > > > > internist appointment for Petes sake my own RA doc didn't even > > > refer > > > > me or find that I have PF! > > > > > > > > So PF is IPF and just because I have it doesn't tell what kind > I > > > have > > > > or what it's caused from right? And when this doctors office > > calls > > > > back and says its in January for the Mayo clinic even though > they > > > > didn't give me a date, do I wait or say no way I want to be > > > referred > > > > to a lung doc? Which I don't need a referral for my insurance > > its > > > > open access. So do I just say I am finding my own or what do > you > > > all > > > > recommend? > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call me > > back > > > > they will be hearing from me! > > > > > > > > > > > > Sandie > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Thanks ette! > > > > > > > > Hello All, > > > > > > > > I am in a much better place today so thank you all for your > > > > compassion and kindness through these last few days! > > > > > > > > Onward….. > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > basically " thanks for putting your trust in us and blah blah > and > > > that > > > > we can see you in January of 2008 " . I know that's what the > Mayo > > > > originally told the referral specialist at the clinic when she > > > called > > > > two weeks ago but she said no that was too long and that I need > > to > > > be > > > > seen before that. I received this letter just 2 days after > > seeing > > > > the internist in which he told me they would be calling me in a > > > week > > > > or so to setup the appointment. I called the referral person > at > > > the > > > > clinic when I received the letter and left her a message about > > the > > > > letter I got from the Mayo and about what the doctor at the > > clinic > > > > told me 2 days earlier. If she could just check out with the > > > doctor > > > > and let me know am I to expect a call in the next few weeks > from > > > the > > > > Mayo or am I waiting for January???? > > > > > > > > As of today I hadn't heard from anyone. So reading 's > email > > > to > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > literally but it has been very hard to work or accomplish any > > > actual > > > > work in the last few weeks) this is my life not theirs so they > > need > > > > to get with the program here. Since my faith in doctors has > > > > literally been thrown out the window these last 2 years I > didn't > > > have > > > > much faith in this internist who told me the " KEY " word > > is " minimal > > > > honeycombing " because everything I read said that part of the > > lung > > > > is already gone! Me the nice person I am tried to give them > the > > > > benefit of the doubt so I waited. > > > > > > > > Well today I called this internists office spoke to one of the > > > nurses > > > > about the mixed messages I was getting from them and the Mayo > > > clinic > > > > and what am I supposed to be doing/waiting for because I > haven't > > > > received a call from her office or the Mayo. She read through > > the > > > > notes and stated well " I don't know what is going on; the Dr's > > > notes > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > would > > > > be calling you so I will have to go talk to the doctor and find > > out > > > > what is going on and call you back because I really don't know > > what > > > > is going on now! " > > > > > > > > Just exactly what I thought these last 2 years has been nothing > > but > > > > HELL for me with doctors ever since I switched and I knew > better > > > > because my health history has been so complicated and gets more > > and > > > > more complicated as each month goes on. They just don't care! > I > > > > have an appointment with my original family doctor that I had > for > > > the > > > > last 10-20 years (it was her chief medical director who was my > > > doctor > > > > before her) so she knew my history before she finished her > > > residency > > > > and took me on when my doctor left the clinic. > > > > > > > > But she switched clinics because the clinic where she was at > and > > > > where I went to became a federal clinic and not sure what all > > that > > > > was about besides teaching but apparently she didn't like it > and > > > > left. This left me hanging. Well I had enough of this crap and > > > these > > > > doctors sitting around thinking it's a sinus infection, it's a > > > virus, > > > > this or that and NOT referring me. I went out on my own to get > > the > > > > internist appointment for Petes sake my own RA doc didn't even > > > refer > > > > me or find that I have PF! > > > > > > > > So PF is IPF and just because I have it doesn't tell what kind > I > > > have > > > > or what it's caused from right? And when this doctors office > > calls > > > > back and says its in January for the Mayo clinic even though > they > > > > didn't give me a date, do I wait or say no way I want to be > > > referred > > > > to a lung doc? Which I don't need a referral for my insurance > > its > > > > open access. So do I just say I am finding my own or what do > you > > > all > > > > recommend? > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call me > > back > > > > they will be hearing from me! > > > > > > > > > > > > Sandie > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 25, 2007 Report Share Posted October 25, 2007 Sandie, No problem. But the proper link is: http://www.phassociation.org/Find_A_Doctor/ I tried it and the one I sent had spaces. Sorry for any mixup. Be blessed. ette > > > > > > > > > > Hello All, > > > > > > > > > > I am in a much better place today so thank you all for your > > > > > compassion and kindness through these last few days! > > > > > > > > > > Onward….. > > > > > > > > > > Two weeks ago I got a letter from the Mayo Clinic that said > > > > > basically " thanks for putting your trust in us and blah blah > > and > > > > that > > > > > we can see you in January of 2008 " . I know that's what the > > Mayo > > > > > originally told the referral specialist at the clinic when > she > > > > called > > > > > two weeks ago but she said no that was too long and that I > need > > > to > > > > be > > > > > seen before that. I received this letter just 2 days after > > > seeing > > > > > the internist in which he told me they would be calling me in > a > > > > week > > > > > or so to setup the appointment. I called the referral person > > at > > > > the > > > > > clinic when I received the letter and left her a message > about > > > the > > > > > letter I got from the Mayo and about what the doctor at the > > > clinic > > > > > told me 2 days earlier. If she could just check out with the > > > > doctor > > > > > and let me know am I to expect a call in the next few weeks > > from > > > > the > > > > > Mayo or am I waiting for January???? > > > > > > > > > > As of today I hadn't heard from anyone. So reading 's > > email > > > > to > > > > > Joe I thought well no sense sitting her waiting anymore (not > > > > > literally but it has been very hard to work or accomplish any > > > > actual > > > > > work in the last few weeks) this is my life not theirs so > they > > > need > > > > > to get with the program here. Since my faith in doctors has > > > > > literally been thrown out the window these last 2 years I > > didn't > > > > have > > > > > much faith in this internist who told me the " KEY " word > > > is " minimal > > > > > honeycombing " because everything I read said that part of > the > > > lung > > > > > is already gone! Me the nice person I am tried to give them > > the > > > > > benefit of the doubt so I waited. > > > > > > > > > > Well today I called this internists office spoke to one of > the > > > > nurses > > > > > about the mixed messages I was getting from them and the Mayo > > > > clinic > > > > > and what am I supposed to be doing/waiting for because I > > haven't > > > > > received a call from her office or the Mayo. She read > through > > > the > > > > > notes and stated well " I don't know what is going on; the > Dr's > > > > notes > > > > > say he spoke to the RA doc on the 9th of October and the Mayo > > > would > > > > > be calling you so I will have to go talk to the doctor and > find > > > out > > > > > what is going on and call you back because I really don't > know > > > what > > > > > is going on now! " > > > > > > > > > > Just exactly what I thought these last 2 years has been > nothing > > > but > > > > > HELL for me with doctors ever since I switched and I knew > > better > > > > > because my health history has been so complicated and gets > more > > > and > > > > > more complicated as each month goes on. They just don't > care! > > I > > > > > have an appointment with my original family doctor that I had > > for > > > > the > > > > > last 10-20 years (it was her chief medical director who was > my > > > > doctor > > > > > before her) so she knew my history before she finished her > > > > residency > > > > > and took me on when my doctor left the clinic. > > > > > > > > > > But she switched clinics because the clinic where she was at > > and > > > > > where I went to became a federal clinic and not sure what all > > > that > > > > > was about besides teaching but apparently she didn't like it > > and > > > > > left. This left me hanging. Well I had enough of this crap > and > > > > these > > > > > doctors sitting around thinking it's a sinus infection, it's > a > > > > virus, > > > > > this or that and NOT referring me. I went out on my own to > get > > > the > > > > > internist appointment for Petes sake my own RA doc didn't > even > > > > refer > > > > > me or find that I have PF! > > > > > > > > > > So PF is IPF and just because I have it doesn't tell what > kind > > I > > > > have > > > > > or what it's caused from right? And when this doctors office > > > calls > > > > > back and says its in January for the Mayo clinic even though > > they > > > > > didn't give me a date, do I wait or say no way I want to be > > > > referred > > > > > to a lung doc? Which I don't need a referral for my > insurance > > > its > > > > > open access. So do I just say I am finding my own or what do > > you > > > > all > > > > > recommend? > > > > > > > > > > > > > > > > > > > > So I will give them until this afternoon if they don't call > me > > > back > > > > > they will be hearing from me! > > > > > > > > > > > > > > > Sandie > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.