Guest guest Posted October 23, 2007 Report Share Posted October 23, 2007 Don't wait Sandie. Take the Bull by the horns!! Kay Doctors, arghhh 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 23, 2007 Report Share Posted October 23, 2007 To correct one thing you said - PF is not IPF. Pulmonary Fibrosis is another term for Interstitial Lung Disease and includes over 200 diseases. IPF is Idiopathic Pulmonary Fibrosis which is the most common of those diseases and has specific pathology that distinguishes it from the others. I'd keep pressing but, unfortunately, the January date for Mayo doesn't surprise me. Have you seen a pulmonologist or just internist at this point? What you might consider is seeing someone else or going to a local, less prestigious facility while keeping the Mayo appointment. Then you can either use Mayo as a second opinion or switch in January. Here is similar. Our nearest teaching hospital and closest thing we have to Mayo is typically booking 2-3 months ahead. I'm not familiar with the inner workings of Mayo but it may well be that you will still need a local pulmonologist for more immediate issues and them for major diagnosis and treatment. On May 11, my neurologist made a referral to UTSW and my earliest appointment was August 31. As to doctors not caring, I wouldn't say that. I'd say most care a great deal. On the other hand I know my pulmonologist is overwhelmed with patients and spends little time in the office due to all his critical care. He saw me one night when I was in the hospital at 10 pm. Also, you are the one who has to manage your medical care. Right now you're going back to a doctor you trust (went to for 10-20 years). Also, if you've just seen internists, get to a pulmonologist. Your case does point out the health crisis to come, far beyond what we've seen. Doctors are being crushed by an overall shortage, by insurance companies and by malpractice costs. Look at what your insurer is actually paying based on the negotiated prices. Yes, specialists like Pulmonologists and Surgeons make good money even with malpractice insurance. Good money if you call any money good that requires you to work 75-80 hours per week, spend the remaining time on call, and your only real relationship with your family is that you provide the money for them to enjoy. > > 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 23, 2007 Report Share Posted October 23, 2007 you can correct because I wasn't stating I was asking that's what the question mark was for at the end because I didn't think they were the same but a lot of articles refer to them as being the same or should I say using them interchangeable is a better word. Maybe most doctors care but in the last 2 years I haven't run across many this last stay at the hospital and these doctors were like being cattle hurried through a gate, so I would have to disagree that yes doctors are over worked, which they knew before they got in that business, they are highly paid, maybe don't have a family life which they probably new as well, it's a choice people make and like every career takes some organization and all that. With reference to insurance we pay out premiums that are high and outrageous and high out of pocket expenses. And when patients feel like cattle and hurried in and out, there is an issue there and I don't have the answer how to fix it but that isn't the overall goal I would think of being a doctor. I don't have a lung doc and I haven't seen any one else accept the RA doc for my RA, the ENT doc because the hospital doc thought my infections were due to sinus infections and the internist because I made the appt and found him myself. They called back and stated that January is basically the soonest they can get anyone in and that's pretty good for the Mayo clinic, that I could come back to him and see him in the mean time. Well I said I am not comfortable in that decision because he diagnoses me with PF and then lets me sit and blows it off like it is no big deal, so either he knows little about PF or he is making an assumption on what is causing it and is willing to gamble with my life, she apologized and said she normally doesn't work with this doctor and I could make an appt with him and talk about all this to get referred to some where if I didn't want to wait until January or in the meantime while waiting for January to come. So what do I do? My appt with the long time family doc is on the 26th of October. Not sure what she will do but I am out of options at this point and no I dont have a lung doctor only seen the internist once to order the tests and second time to get results, thats it. Any suggestions? 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 23, 2007 Report Share Posted October 23, 2007 Hang in there girl, most of us have learned to be our own best advocate! Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2007 Report Share Posted October 23, 2007 Hang in there girl, most of us have learned to be our own best advocate! Sher; ipf 3-06; OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 23, 2007 Report Share Posted October 23, 2007 Hi Sandi, If you don't need a referral, do what you ahve to do and contact another doctor/facility. This is ALL ABOUT YOU. Take control of the situation. Had I not done that, I would be dead by now. But God - He gave me notion to make my own appointments. 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 23, 2007 Report Share Posted October 23, 2007 Hi Sandi, If you don't need a referral, do what you ahve to do and contact another doctor/facility. This is ALL ABOUT YOU. Take control of the situation. Had I not done that, I would be dead by now. But God - He gave me notion to make my own appointments. 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 23, 2007 Report Share Posted October 23, 2007 Sandie, Get a pulmonologist ASAP. Tell them what you have been diagnosed with and how you are feeling. It is going to probably take a couple of months with them also. I pray not. Make the call! 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 23, 2007 Report Share Posted October 23, 2007 Sandie, Get a pulmonologist ASAP. Tell them what you have been diagnosed with and how you are feeling. It is going to probably take a couple of months with them also. I pray not. Make the call! 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 23, 2007 Report Share Posted October 23, 2007 One other comment. As you get a pulmonologist, you will probably find he was trained at the Mayo Clinic or another top teaching hospital. So, he can bring with him much of the knowledge from there, just not all the tools and equipment. He'll know what you need done there though. I'm in Dallas, thousands of miles from the Mayo Clinic but indirectly have used it more than once. My neurologist sent blood tests there once. And, now, after my VATS, the local pathologist sent the information to a specialist at the Mayo Clinic to get his conclusion confirmed. So, my biopsy results are locally reviewed and Mayo Clinic reviewed. Now, I'll continue to see a local pulmonologist and for anything more advanced go to UTSW (University of Texas Southwestern Medical School) to review and pursue the possibilities. I'll know exactly what they offer and who to talk to as my pulmonologist was there until June. I also think there is benefit to having a pulmonologist who you trust separate from the teaching hospital. They may have differing views. They may help you balance the choices better. The teaching hospital is more likely to lean toward clinical trials, experimental treatment, and lung transplants all of which may be appropriate, but I believe they are a little skewed because thats where they excel and what they are most proud of. I see UTSW with their proud web pages on the success of their lung transplants and the fact they are among the best. I also know they have counseling to help you evaluate your choices. I do like in addition to that having an independent pulmonologist. Before I had my VATS, I got opinions and information from my pulmonologist, from another in the same building, from the surgeon and I used my primary physician who I trust so much to make me comfortable with what I was seeing and deciding and with my pulmonologist who is in the same practice. He is open and honest enough to say that post VATS and diagnosis I might want a pulmonologist who spends more time in the office as opposed to the hospital, so when he expressed confidence in my pulmonologist at this stage, I could see that as honesty. Maybe I've been fortunate there too, because I've had a primary physician bold enough to take my insurance book and cross through ear surgeons not to use years ago. I then had a second opinion surgeon tell me that the surgeon I was using was the best and spend time further educating me. Ask the questions right and amazing the honesty you will get. So, guess I'll never make it to Mayo Clinic. In January you can tell me about it. However, my blood has made it there and the video of my lung and pathology has been 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 23, 2007 Report Share Posted October 23, 2007 One other comment. As you get a pulmonologist, you will probably find he was trained at the Mayo Clinic or another top teaching hospital. So, he can bring with him much of the knowledge from there, just not all the tools and equipment. He'll know what you need done there though. I'm in Dallas, thousands of miles from the Mayo Clinic but indirectly have used it more than once. My neurologist sent blood tests there once. And, now, after my VATS, the local pathologist sent the information to a specialist at the Mayo Clinic to get his conclusion confirmed. So, my biopsy results are locally reviewed and Mayo Clinic reviewed. Now, I'll continue to see a local pulmonologist and for anything more advanced go to UTSW (University of Texas Southwestern Medical School) to review and pursue the possibilities. I'll know exactly what they offer and who to talk to as my pulmonologist was there until June. I also think there is benefit to having a pulmonologist who you trust separate from the teaching hospital. They may have differing views. They may help you balance the choices better. The teaching hospital is more likely to lean toward clinical trials, experimental treatment, and lung transplants all of which may be appropriate, but I believe they are a little skewed because thats where they excel and what they are most proud of. I see UTSW with their proud web pages on the success of their lung transplants and the fact they are among the best. I also know they have counseling to help you evaluate your choices. I do like in addition to that having an independent pulmonologist. Before I had my VATS, I got opinions and information from my pulmonologist, from another in the same building, from the surgeon and I used my primary physician who I trust so much to make me comfortable with what I was seeing and deciding and with my pulmonologist who is in the same practice. He is open and honest enough to say that post VATS and diagnosis I might want a pulmonologist who spends more time in the office as opposed to the hospital, so when he expressed confidence in my pulmonologist at this stage, I could see that as honesty. Maybe I've been fortunate there too, because I've had a primary physician bold enough to take my insurance book and cross through ear surgeons not to use years ago. I then had a second opinion surgeon tell me that the surgeon I was using was the best and spend time further educating me. Ask the questions right and amazing the honesty you will get. So, guess I'll never make it to Mayo Clinic. In January you can tell me about it. However, my blood has made it there and the video of my lung and pathology has been 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 23, 2007 Report Share Posted October 23, 2007 Sandie - Thought I would mention that I don't think that January for Mayo is the best you can do. My doctor's just called down there last week and I see a pulmologist Oct. 31 -- That has been my experience all the times that I Have gone to Mayo - between 2 to 6 weeks max and generally scheduled sooner .... If you can't get into a pulmologist then schedule with rhuematism... they will refer you to a pulmologist and work you in while there. Just get one appointment... the rest flow from that one... plan on staying at least a week, it may be shorter but could be longer on a first trip. They are very thorough. You can also choose to use the Mayo doc as your main physician with blood tests, etc forwarded to Mayo for decisions - basically you treat locally with the Mayo doc as the lead - but you have to find a local doc who will do that.... Just some suggestions - I have never had to wait more than a few weeks to get into Mayo and you shouldn't either.... If I were you, I would call myself rather than rely on your physicians. Hope this helps. Kristal > > > > > > 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 23, 2007 Report Share Posted October 23, 2007 Thanks Kristal thats what I thought as well with the Mayo. I will call them myself and see what I can do. You maybe an exception because you already see a doctor there so maybe thats why they get you in sooner. I just keep getting the feeling that this doctor isnt making a big deal about it and what I dont get is all of you push getting a lung doc and getting into one ASAP so why doesnt he make a big deal about it? Doesnt that sound odd to anyone? 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 23, 2007 Report Share Posted October 23, 2007 Thanks Kristal thats what I thought as well with the Mayo. I will call them myself and see what I can do. You maybe an exception because you already see a doctor there so maybe thats why they get you in sooner. I just keep getting the feeling that this doctor isnt making a big deal about it and what I dont get is all of you push getting a lung doc and getting into one ASAP so why doesnt he make a big deal about it? Doesnt that sound odd to anyone? 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 23, 2007 Report Share Posted October 23, 2007 Thanks your insite is always so honest and that is truly what we all need I think. January just seems like a long way to go and I am just nervous about all this lung doc and where to go and who to trust I just dont know where to start! 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 23, 2007 Report Share Posted October 23, 2007 Thanks your insite is always so honest and that is truly what we all need I think. January just seems like a long way to go and I am just nervous about all this lung doc and where to go and who to trust I just dont know where to start! 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 Yes, it is a long way away and whether it Mayo or someone else, I wouldn't be willing to wait that long. Unfortunately, the way so many places work, you take away a week in November and two in December and then the 10 actual weeks to January is down to 7. I'd also say look, ask, choose and start somehow and if you don't like where and how you started then change it. With any medical provider we need to make sure we're satisfied with the treatment and the communication and, if not, switch. My only recent change was a Dermatologist who claimed in thirty years he'd never heard of steroids causing mood changes and that was a crazy idea. Of course he also said I wasn't scratching when asleep, which made me ask then why did I wake up bloody when I wasn't when I went to sleep. He's actually in the same practice as 5 other doctors i've seen-Primary, Neurologist, Gastrointologist, Rheumatologist, and Pulmonologist. I'm not sure how he snuck in. > > > > > > > > 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 Yes, it is a long way away and whether it Mayo or someone else, I wouldn't be willing to wait that long. Unfortunately, the way so many places work, you take away a week in November and two in December and then the 10 actual weeks to January is down to 7. I'd also say look, ask, choose and start somehow and if you don't like where and how you started then change it. With any medical provider we need to make sure we're satisfied with the treatment and the communication and, if not, switch. My only recent change was a Dermatologist who claimed in thirty years he'd never heard of steroids causing mood changes and that was a crazy idea. Of course he also said I wasn't scratching when asleep, which made me ask then why did I wake up bloody when I wasn't when I went to sleep. He's actually in the same practice as 5 other doctors i've seen-Primary, Neurologist, Gastrointologist, Rheumatologist, and Pulmonologist. I'm not sure how he snuck in. > > > > > > > > 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 Yes, it is a long way away and whether it Mayo or someone else, I wouldn't be willing to wait that long. Unfortunately, the way so many places work, you take away a week in November and two in December and then the 10 actual weeks to January is down to 7. I'd also say look, ask, choose and start somehow and if you don't like where and how you started then change it. With any medical provider we need to make sure we're satisfied with the treatment and the communication and, if not, switch. My only recent change was a Dermatologist who claimed in thirty years he'd never heard of steroids causing mood changes and that was a crazy idea. Of course he also said I wasn't scratching when asleep, which made me ask then why did I wake up bloody when I wasn't when I went to sleep. He's actually in the same practice as 5 other doctors i've seen-Primary, Neurologist, Gastrointologist, Rheumatologist, and Pulmonologist. I'm not sure how he snuck in. > > > > > > > > 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, Have you seen the pictures of the wildfires in California this week? Treat the diagnosis of Pulmonary Fibrosis like it is a wildfire. It can be just like that or it can move slowly. If you have a doc who is Ho-Hum about this disease.....move right along. Find a doc (if that is possible) who specializes in Interstitial Lung Disease. Most pulmonologists mainly treat COPD.....or cancer. It's you life and future. Take the reigns, girlfriend! 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 Sandie, Have you seen the pictures of the wildfires in California this week? Treat the diagnosis of Pulmonary Fibrosis like it is a wildfire. It can be just like that or it can move slowly. If you have a doc who is Ho-Hum about this disease.....move right along. Find a doc (if that is possible) who specializes in Interstitial Lung Disease. Most pulmonologists mainly treat COPD.....or cancer. It's you life and future. Take the reigns, girlfriend! 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 Sandie, Have you seen the pictures of the wildfires in California this week? Treat the diagnosis of Pulmonary Fibrosis like it is a wildfire. It can be just like that or it can move slowly. If you have a doc who is Ho-Hum about this disease.....move right along. Find a doc (if that is possible) who specializes in Interstitial Lung Disease. Most pulmonologists mainly treat COPD.....or cancer. It's you life and future. Take the reigns, girlfriend! 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 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 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 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...
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