Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Peggy & Gwynnie... I'm going to post both of you together before I sign off for tonight. >>>Peggy, Yes, Rosebud is big, we put her in the back seat of the car and other than shorter legs she was as tall in the seat as a human. Thanks for your prayers in the morning. I'm really looking forward to better vision. Later we'll do the left eye. I may be able to see all the way to Florida! >>>Gwynnie! I'm so glad you're home even though tired. Now that you are a double-lister your chances are 'gooder' now and I'm glad you had family with you for support. Nothing like your own bed though is there. You will jump every time the phone rings. You did the footwork, now God will do the rest. How far will you travel when you get "the call" and is there a family member with a bag packed too? I wonder about you and Leanne. There must be some anxiety over a lung tx but does it give you more peace and optimism knowing you are ready to go? Tx is not on my plans...I'm too old and too heavy. I don't think I would opt to have it done anyway. Rest well, eat well and stay in touch. warm hugs. Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! New member here> > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on> Thursday...however have been experiencing strong symptoms and begging> the Dr's. to take me seriously for the past 5 months. I live in an> extremely small town in N.B., Canada, so to get scheduled for tests> and procedures, it seems like you have to wait an eternity! *sigh* I> have a very complicated medical history and so I at least know that my> PF is NOT the IPF variety, as I know mine is related to my autoimmune> disease. In 2001, when I was 28, I was diagnosed with the autoimmune> disease, Polymyositis and I also tested positive for the anti JO-1> antibody. Apparently this antibody means that you have a very high> chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome> and Raynauds Phenomenon during this time. Immediately prior to> getting diagnosed with the above, I had 2 blood clots in my left leg> and 3 blood clots in my lungs, therefore, I am now taking Warfarin for> life. I've also had Asthma since childhood. That's my medical history> in a nutshell. Over the past 5 months, I haven't been able to breathe> doing the simplest of tasks, such as bathing (that's the worst!),> getting dressed or changed, and sometimes even brushing my teeth or> washing my face. I have this intense burning in my chest when I> inhale and it just about kills me to yawn, because of that burning> sensation (all my Dr.'s would do is lecture me about GERD when I> talked to them about this but I knew it had nothing to do with GERD> since my GERD is very well controlled. It was finally a CT Scan that> I had done 2 weeks ago that apparently confirmed my PF diagnosis and> apparently I am at the "early stage". I have seen my Pulmonologist> once previous to having my CT Scan done and I will see him again but I> am waiting to have a 2nd set of Pulmonary Function test performed> (along with blood gases), as well as an Echocardiogram done. When my> GP told me my diagnosis on Thursday, she basically told me the news as> if she were diagnosing me with the common cold. It was very matter of> fact (and dare I say chipper?) and she sent me out the door. Of> course I didn't know what it was she was talking about so I was> absolutely fine then and there but once I got home and did some> research and let the news register, I got REALLY upset at the way she> told me. We've had an awesome relationship over the past 15 years and> I just can't believe that she wouldn't have more sympathy than that!!?> To be perfectly honest, I'm feeling quite hopeless. Is this as bad as> I think it is?? I know you all are in the same boat as I am and> probably have had to deal with all the ugliness this disease brings> for far too long and I'm so sorry I had to find you this way!! > However, I desperately need your support right now and all the advice> that you have to offer. Thankyou!> > Dawn, 34, married, mother of 2 girls, ages 11 & 9> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2008 Report Share Posted February 3, 2008 Sher: Oh I just love you took Rosebud with you. Bet everyone loved her and thats just so cute. And, I know somehow it was comforting. Has your husband figured out her role in the family yet? > > > > Dawn.... I haven't been posting for a small while and pop in to > check on members who are " dealing " with heavy health issues. One of > our members (Joyce) is currently in the hospital and very ill... > > I have to take a wee break from the sadness of what we can face here > on this board. > > I was Dx (diagnosed) IPF 3-06 and have remained fairly stable. I'll > be 70 this year and deal w/other chronic health problems like most of us. > > You have been through a lot and you are quickly getting an education > about our disease. You will learn more from this board. > > We're all sorry to meet " this way " but it isn't long until we wonder > how we could manage without each other! > > I read your disappointment about your long-standing Dr. Is there a > chance she was dealing with her own feelings? It has to be hard to > tell a patient with which one has had " an awesome relationship " such > staggering news. Don't throw the baby out with the bath water. Talk to > her. I know you will be glad you did. You two have a history together > but you will no doubt be seeing a pulmonologist regularly. > > There are many other younger moms on the board, they will be posting > you. > > God bless. > > Mama-Sher, 69; IPF, 3-06, OR. > > Don't fret about tomorrow, God is already there! > > New member here > > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on > > Thursday...however have been experiencing strong symptoms and begging > > the Dr's. to take me seriously for the past 5 months. I live in an > > extremely small town in N.B., Canada, so to get scheduled for tests > > and procedures, it seems like you have to wait an eternity! *sigh* I > > have a very complicated medical history and so I at least know that my > > PF is NOT the IPF variety, as I know mine is related to my autoimmune > > disease. In 2001, when I was 28, I was diagnosed with the autoimmune > > disease, Polymyositis and I also tested positive for the anti JO-1 > > antibody. Apparently this antibody means that you have a very high > > chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome > > and Raynauds Phenomenon during this time. Immediately prior to > > getting diagnosed with the above, I had 2 blood clots in my left leg > > and 3 blood clots in my lungs, therefore, I am now taking Warfarin for > > life. I've also had Asthma since childhood. That's my medical history > > in a nutshell. Over the past 5 months, I haven't been able to breathe > > doing the simplest of tasks, such as bathing (that's the worst!), > > getting dressed or changed, and sometimes even brushing my teeth or > > washing my face. I have this intense burning in my chest when I > > inhale and it just about kills me to yawn, because of that burning > > sensation (all my Dr.'s would do is lecture me about GERD when I > > talked to them about this but I knew it had nothing to do with GERD > > since my GERD is very well controlled. It was finally a CT Scan that > > I had done 2 weeks ago that apparently confirmed my PF diagnosis and > > apparently I am at the " early stage " . I have seen my Pulmonologist > > once previous to having my CT Scan done and I will see him again but I > > am waiting to have a 2nd set of Pulmonary Function test performed > > (along with blood gases), as well as an Echocardiogram done. When my > > GP told me my diagnosis on Thursday, she basically told me the news as > > if she were diagnosing me with the common cold. It was very matter of > > fact (and dare I say chipper?) and she sent me out the door. Of > > course I didn't know what it was she was talking about so I was > > absolutely fine then and there but once I got home and did some > > research and let the news register, I got REALLY upset at the way she > > told me. We've had an awesome relationship over the past 15 years and > > I just can't believe that she wouldn't have more sympathy than that!!? > > To be perfectly honest, I'm feeling quite hopeless. Is this as bad as > > I think it is?? I know you all are in the same boat as I am and > > probably have had to deal with all the ugliness this disease brings > > for far too long and I'm so sorry I had to find you this way!! > > However, I desperately need your support right now and all the advice > > that you have to offer. Thankyou! > > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2008 Report Share Posted February 4, 2008 Bruce... Oh I wish I had thought to take her with me! What a hoot! I meant we put her in the back seat when we brought her home. lol Mama-Sher, 69; IPF, 3-06, OR.Don't fret about tomorrow, God is already there! New member here> > > > > > Hello. My name is Dawn, I'm 34, and was just diagnosed with PF on> > Thursday...however have been experiencing strong symptoms and begging> > the Dr's. to take me seriously for the past 5 months. I live in an> > extremely small town in N.B., Canada, so to get scheduled for tests> > and procedures, it seems like you have to wait an eternity! *sigh* I> > have a very complicated medical history and so I at least know that my> > PF is NOT the IPF variety, as I know mine is related to my autoimmune> > disease. In 2001, when I was 28, I was diagnosed with the autoimmune> > disease, Polymyositis and I also tested positive for the anti JO-1> > antibody. Apparently this antibody means that you have a very high> > chance at getting an ILD. I was also diagnosed with Sjogrens Syndrome> > and Raynauds Phenomenon during this time. Immediately prior to> > getting diagnosed with the above, I had 2 blood clots in my left leg> > and 3 blood clots in my lungs, therefore, I am now taking Warfarin for> > life. I've also had Asthma since childhood. That's my medical history> > in a nutshell. Over the past 5 months, I haven't been able to breathe> > doing the simplest of tasks, such as bathing (that's the worst!),> > getting dressed or changed, and sometimes even brushing my teeth or> > washing my face. I have this intense burning in my chest when I> > inhale and it just about kills me to yawn, because of that burning> > sensation (all my Dr.'s would do is lecture me about GERD when I> > talked to them about this but I knew it had nothing to do with GERD> > since my GERD is very well controlled. It was finally a CT Scan that> > I had done 2 weeks ago that apparently confirmed my PF diagnosis and> > apparently I am at the "early stage". I have seen my Pulmonologist> > once previous to having my CT Scan done and I will see him again but I> > am waiting to have a 2nd set of Pulmonary Function test performed> > (along with blood gases), as well as an Echocardiogram done. When my> > GP told me my diagnosis on Thursday, she basically told me the news as> > if she were diagnosing me with the common cold. It was very matter of> > fact (and dare I say chipper?) and she sent me out the door. Of> > course I didn't know what it was she was talking about so I was> > absolutely fine then and there but once I got home and did some> > research and let the news register, I got REALLY upset at the way she> > told me. We've had an awesome relationship over the past 15 years and> > I just can't believe that she wouldn't have more sympathy than that!!?> > To be perfectly honest, I'm feeling quite hopeless. Is this as bad as> > I think it is?? I know you all are in the same boat as I am and> > probably have had to deal with all the ugliness this disease brings> > for far too long and I'm so sorry I had to find you this way!! > > However, I desperately need your support right now and all the advice> > that you have to offer. Thankyou!> > > > Dawn, 34, married, mother of 2 girls, ages 11 & 9> >> Quote Link to comment Share on other sites More sharing options...
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