Guest guest Posted November 12, 2009 Report Share Posted November 12, 2009 http://www.pulmonaryfibrosis.org/patient.pdfThis is a good read for the newbe's P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts'Subject: So confusedTo: Breathe-Support Date: Thursday, November 12, 2009, 11:19 PM I've been looking at the posts on this site and I have to admit that some of the things I have read scare me. I haven't gotten on before because in a way I felt like this wasn't me and in all honesty I don't have a true diagnosis(I went to the ER on the 23rd and they found Pulmonary Nodules, the ER Dr. said it was Pulmonary Fibrosis). See now this is were the confusion comes in... the hospital called me to set up my appointment with the Pulmonary Clinic, but they wouldn't see me till I was seen by the Cancer Center. Had to get another CT scan (since the one from the ER was for back and abdominal pain, they saw my lungs on review, but the report was not for my lungs, so hence the 2nd CT scan...already feel the tail chasing). The results per the Dr @ the Cancer Center are that I have 4 nodules the largest being only 4mm's, to small to biopsy, nothing more to do except re-do CT scan in 6 months to see if it grows (he said that they usually re-do in a year but since I have had 3 other cancers; cervical, throat and breast all w/i 19 years, I'm 49; they will scan me in 6 months). Now they are setting me up with the Pulmonary Clinic. There has been a lot going on already; this time last year I was on a Heart Monitor because I had heart palputations, nothing found there. Breathing study, okay for the most part... fatigue (sometimes I get so little sleep that it is hard to get up to go to work), shortness of breath, light headed, muscle aches, but the worst is the cough... it seems I cough ALL the time, it is very annoying... I get asked all the time if I'm okay... do I need a cough drop, water, you name it I've been asked. Okay,this last week has been hell... thinking OMG another CANCER...NO! But during my waiting for my Dr's appt I have been reading this sites notes and researching this dis-ease and I don't know which is the lesser, not that either is a good thing. I don't know what is going to happen now. How does one really find out? What test do they do? For some stupid reason I think I could of handled a cancer diagnosis better than this dis-ease, maybe that's because I know what to expect and now I have no clue... I am sorry that this is so long... but there is so much going on in my head and they say to "let it out to get it out". I'm scared to talk to my family because I'm afraid they will see just how scared I am, they aren't used to that. They have only seen me fight and I'm afraid this is bigger than anything I have faced before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 wow you have a lot going on and a right to be scared waiting for the answer can be really difficult it's ok to let your family know that you are scared they may understand, or they may not understand but you need to get things off of your chest the pulmonary clinic will evaluate you high resolution cat scan, pulmonary function test, six minute walk are among the ongoing testing i forget what else was done prior to my diagnosis and yes, i found this pulmonary fibrosis to be very scary but there is no expiration date stamped on your behind there are people on this board who were diagnosed 13 years ago even though there is no known cure, some forms of the disease are responsive to treatment and we continue to live our lives with new "normals" most of us use supplemental oxygen, some go to rehab, take various medicines, more naps, some people still work Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: So confusedTo: Breathe-Support Date: Friday, November 13, 2009, 12:19 AM I've been looking at the posts on this site and I have to admit that some of the things I have read scare me. I haven't gotten on before because in a way I felt like this wasn't me and in all honesty I don't have a true diagnosis(I went to the ER on the 23rd and they found Pulmonary Nodules, the ER Dr. said it was Pulmonary Fibrosis). See now this is were the confusion comes in... the hospital called me to set up my appointment with the Pulmonary Clinic, but they wouldn't see me till I was seen by the Cancer Center. Had to get another CT scan (since the one from the ER was for back and abdominal pain, they saw my lungs on review, but the report was not for my lungs, so hence the 2nd CT scan...already feel the tail chasing). The results per the Dr @ the Cancer Center are that I have 4 nodules the largest being only 4mm's, to small to biopsy, nothing more to do except re-do CT scan in 6 months to see if it grows (he said that they usually re-do in a year but since I have had 3 other cancers; cervical, throat and breast all w/i 19 years, I'm 49; they will scan me in 6 months). Now they are setting me up with the Pulmonary Clinic. There has been a lot going on already; this time last year I was on a Heart Monitor because I had heart palputations, nothing found there. Breathing study, okay for the most part... fatigue (sometimes I get so little sleep that it is hard to get up to go to work), shortness of breath, light headed, muscle aches, but the worst is the cough... it seems I cough ALL the time, it is very annoying... I get asked all the time if I'm okay... do I need a cough drop, water, you name it I've been asked.Okay,this last week has been hell... thinking OMG another CANCER...NO!But during my waiting for my Dr's appt I have been reading this sites notes and researching this dis-ease and I don't know which is the lesser, not that either is a good thing.I don't know what is going to happen now. How does one really find out? What test do they do? For some stupid reason I think I could of handled a cancer diagnosis better than this dis-ease, maybe that's because I know what to expect and now I have no clue... I am sorry that this is so long... but there is so much going on in my head and they say to "let it out to get it out". I'm scared to talk to my family because I'm afraid they will see just how scared I am, they aren't used to that. They have only seen me fight and I'm afraid this is bigger than anything I have faced before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 i really like the way you provide links to important sites thank you Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: So confusedTo: Breathe-Support Date: Friday, November 13, 2009, 2:24 AM http://www.pulmonar yfibrosis. org/patient. pdfThis is a good read for the newbe's P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 10 LPM 8/04, PH 3/06, ILL yo 61REMEMBER : All of you on Prednisone'stressed' spelled backwards is 'desserts' From: debra <debzkey (AT) yahoo (DOT) com>Subject: So confusedTo: Breathe-Support@ yahoogroups. comDate: Thursday, November 12, 2009, 11:19 PM I've been looking at the posts on this site and I have to admit that some of the things I have read scare me. I haven't gotten on before because in a way I felt like this wasn't me and in all honesty I don't have a true diagnosis(I went to the ER on the 23rd and they found Pulmonary Nodules, the ER Dr. said it was Pulmonary Fibrosis). See now this is were the confusion comes in... the hospital called me to set up my appointment with the Pulmonary Clinic, but they wouldn't see me till I was seen by the Cancer Center. Had to get another CT scan (since the one from the ER was for back and abdominal pain, they saw my lungs on review, but the report was not for my lungs, so hence the 2nd CT scan...already feel the tail chasing). The results per the Dr @ the Cancer Center are that I have 4 nodules the largest being only 4mm's, to small to biopsy, nothing more to do except re-do CT scan in 6 months to see if it grows (he said that they usually re-do in a year but since I have had 3 other cancers; cervical, throat and breast all w/i 19 years, I'm 49; they will scan me in 6 months). Now they are setting me up with the Pulmonary Clinic. There has been a lot going on already; this time last year I was on a Heart Monitor because I had heart palputations, nothing found there. Breathing study, okay for the most part... fatigue (sometimes I get so little sleep that it is hard to get up to go to work), shortness of breath, light headed, muscle aches, but the worst is the cough... it seems I cough ALL the time, it is very annoying... I get asked all the time if I'm okay... do I need a cough drop, water, you name it I've been asked.Okay,this last week has been hell... thinking OMG another CANCER...NO!But during my waiting for my Dr's appt I have been reading this sites notes and researching this dis-ease and I don't know which is the lesser, not that either is a good thing.I don't know what is going to happen now. How does one really find out? What test do they do? For some stupid reason I think I could of handled a cancer diagnosis better than this dis-ease, maybe that's because I know what to expect and now I have no clue... I am sorry that this is so long... but there is so much going on in my head and they say to "let it out to get it out". I'm scared to talk to my family because I'm afraid they will see just how scared I am, they aren't used to that. They have only seen me fight and I'm afraid this is bigger than anything I have faced before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 Debra, I'm sorry that you are going through this difficult time and all the confusion that goes along with it. I hope that we can provide some help and a bit of clarity so you can figure out what is going on in your lungs. I would think that the most logical thing to do is get yourself in to see a pulmonologist as soon as possible. Best case scenario is for you to be seen at a teaching hospital with specialists in interstitial lung disease. I would not put too much stock in what the ER doc said but you definitely want to follow up on his comment. Most of us have been diagnosed with pulmonary fibrosis after having a high resolution ct scan (HRCT). This is infinitely more accurate than an ordinary ct scan. You should probably have a pulmonary function test, a 6 minute walk, arterial blood gas and possibly and echocardiogram. The first question I would have for a pulmonologist would be, 'Why did the ER doctor state that I have pulmonary fibrosis? You need to know what led him to say that. He must have had a reason and that reason needs to be followed up. Please don't panic. There is nothing to be gained that way. What you need is information and a firm diagnosis. Only then is it possible to know how to proceed. Please let us know how you are doing and what your outcome is. We're here to help in any way we can! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Fri, November 13, 2009 12:19:46 AMSubject: So confused I've been looking at the posts on this site and I have to admit that some of the things I have read scare me. I haven't gotten on before because in a way I felt like this wasn't me and in all honesty I don't have a true diagnosis(I went to the ER on the 23rd and they found Pulmonary Nodules, the ER Dr. said it was Pulmonary Fibrosis). See now this is were the confusion comes in... the hospital called me to set up my appointment with the Pulmonary Clinic, but they wouldn't see me till I was seen by the Cancer Center. Had to get another CT scan (since the one from the ER was for back and abdominal pain, they saw my lungs on review, but the report was not for my lungs, so hence the 2nd CT scan...already feel the tail chasing). The results per the Dr @ the Cancer Center are that I have 4 nodules the largest being only 4mm's, to small to biopsy, nothing more to do except re-do CT scan in 6 months to see if it grows (he said that they usually re-do in a year but since I have had 3 other cancers; cervical, throat and breast all w/i 19 years, I'm 49; they will scan me in 6 months). Now they are setting me up with the Pulmonary Clinic. There has been a lot going on already; this time last year I was on a Heart Monitor because I had heart palputations, nothing found there. Breathing study, okay for the most part... fatigue (sometimes I get so little sleep that it is hard to get up to go to work), shortness of breath, light headed, muscle aches, but the worst is the cough... it seems I cough ALL the time, it is very annoying... I get asked all the time if I'm okay... do I need a cough drop, water, you name it I've been asked.Okay,this last week has been hell... thinking OMG another CANCER...NO!But during my waiting for my Dr's appt I have been reading this sites notes and researching this dis-ease and I don't know which is the lesser, not that either is a good thing.I don't know what is going to happen now. How does one really find out? What test do they do? For some stupid reason I think I could of handled a cancer diagnosis better than this dis-ease, maybe that's because I know what to expect and now I have no clue... I am sorry that this is so long... but there is so much going on in my head and they say to "let it out to get it out". I'm scared to talk to my family because I'm afraid they will see just how scared I am, they aren't used to that. They have only seen me fight and I'm afraid this is bigger than anything I have faced before. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 13, 2009 Report Share Posted November 13, 2009 Debra,As a BC survivor myself I do understand how you feel when you say you almost wish it was another cancer diagnosis. You know about cancer, you know it can be beaten, PF is such a 'Excuse me' kind of thing. I got both diagnosis in 2002 and the cancer bothered me much less than the PF because I knew cancer survivors and I had seen my mother die from IPF. Beth is right, you first need a firm diagnosis. I don't understand when they say it is too small to biopsy? 4mm might be too small for a pf biopsy but I thought a needle biopsy for cancer could be done on that size. But I am no doctor. Either way you are a fighter and a survivor. I figured if I could beat cancer then no way was this disease gonna break me. I will go out kicking and screaming as they say. Attitude counts so you know you need to keep smiling. One day at a time.....Dyane phoenix ipf 02>> I've been looking at the posts on this site and I have to admit that some of the things I have read scare me. I haven't gotten on before because in a way I felt like this wasn't me and in all honesty I don't have a true diagnosis(I went to the ER on the 23rd and they found Pulmonary Nodules, the ER Dr. said it was Pulmonary Fibrosis). See now this is were the confusion comes in... the hospital called me to set up my appointment with the Pulmonary Clinic, but they wouldn't see me till I was seen by the Cancer Center. Had to get another CT scan (since the one from the ER was for back and abdominal pain, they saw my lungs on review, but the report was not for my lungs, so hence the 2nd CT scan...already feel the tail chasing). The results per the Dr @ the Cancer Center are that I have 4 nodules the largest being only 4mm's, to small to biopsy, nothing more to do except re-do CT scan in 6 months to see if it grows (he said that they usually re-do in a year but since I have had 3 other cancers; cervical, throat and breast all w/i 19 years, I'm 49; they will scan me in 6 months). Now they are setting me up with the Pulmonary Clinic. > There has been a lot going on already; this time last year I was on a Heart Monitor because I had heart palputations, nothing found there. Breathing study, okay for the most part... fatigue (sometimes I get so little sleep that it is hard to get up to go to work), shortness of breath, light headed, muscle aches, but the worst is the cough... it seems I cough ALL the time, it is very annoying... I get asked all the time if I'm okay... do I need a cough drop, water, you name it I've been asked.> Okay,this last week has been hell... thinking OMG another CANCER...NO!> But during my waiting for my Dr's appt I have been reading this sites notes and researching this dis-ease and I don't know which is the lesser, not that either is a good thing.> I don't know what is going to happen now. How does one really find out? What test do they do? For some stupid reason I think I could of handled a cancer diagnosis better than this dis-ease, maybe that's because I know what to expect and now I have no clue... I am sorry that this is so long... but there is so much going on in my head and they say to "let it out to get it out". I'm scared to talk to my family because I'm afraid they will see just how scared I am, they aren't used to that. They have only seen me fight and I'm afraid this is bigger than anything I have faced before.> Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.