Guest guest Posted December 19, 2000 Report Share Posted December 19, 2000 In a message dated 12/19/00 8:54:06 AM Eastern Standard Time, john.codling@... writes: > All just received this. > > Not much in the way of new news but I believe its of a positive > nature. > > To the moderators do you want me to keep posting this news when I > can find it.?? > > > > > > , thanks for posting. I think this is quite useful as it saves people the time to look up this info themselves. Also, a survey of this nature is helpful in terms of giving one the sense that one is not missing out on something. And maybe if we read enough of this stuff we can all become cardiologists! Victor Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 All As promised I have been intouch with Endocardial Solutions. This is the company that offer 3d mapping for AF. I promised Mr. Schuld that I received any information from them I would post this for our members but would not add any comments or recommendations. This I have done with the exception of scrubbing the Drs name and email that he gave me in the UK. I have also had to scrub two GIF files simply as my company forbids me passing on personal mails and a GIF files is a sure way of getting caught. I hope you all understand and this mail below is of some use to you all. Good Luck Regards In the meantime, I've placed a few movies on the web that you might find interesting. ftp://fuzz.mayo.edu/pub/coding You can dowload these by clicking on them. These movies are taken from two AF cases. Both show a three-dimensional map of the left atrium of the heart and illustrate the electrical conduction within the chamber. In the Afib1.avi movie, the conduction spreads first from the right atrium of the heart (you can see it emerge in the map on the left side--the view of the chamber is similar to looking at the left side of the patient's chest) and flows through the right atrium to the bottom of the chamber, where the electricity is conducted to the left ventricule. That's how it should normally look. In the second part of the movie, you can see the start of AF. In many studies, AF has been show to emerge from a " focus " or ectopic area near the pulmonary veins. (The pulmonary veins bring freshly-oxygenated blood from the lungs.) You'll see both the right superior and left superior pulmonary veins on the map--RSPV and LSPV. Physicians are using our system to map these focal AF sites as they emerge from the pulmonary veins. [This has been published several times. I'll try to forward these publications on to you.] In the second part of this movie, you can see the electrical activity break out, not from the left side of the chamber, but right out of the left superior pulmonary vein. When it emerges like this, it's called a PAC--or premature atrial complex. The goal of these heart specialists, or electrophysiologists, is to find the focus or PAC and eliminate it with a catheter ablation procedure. If you can map and ablate the PAC, you eliminate the arrhythmia. The second movie shows a similar electrical pattern AF. The arrhythmia is started from a single spot in the right superior pulmonary vein. The advantage of our system is that it records 1200 images per second during the arrhythmia. The old method of cardiac mapping is to put in a number of catheters and hope to spot the source of the arrhythmia by looking at waveforms. The method using our system captures even rapid arrhythmias. The physicians don't have to have their catheters in exactly the right place. They can record the arrhythmia and see the heart conduction on a three-dimensional map. I'm including two pictures here: one showing the variation in pulmonary veins (which makes conventional mapping difficult) and another showing the tissue structure of these veins. Part of the problem with pulmonary veins is that during human embryonic development, they may be created with bits of electrical tissue (as you find in the heart) instead of pure vascular tissue. This conductive tissue can give rise to AF later in life. Hope this helps. Let me know if you have any questions about what I've been babbling on about. kind regards, Joe Schuld Marketing Communications Mgr. Endocardial Solutions 1350 Energy Lane, Suite 110 St. MN 55108 651 523-6989 651 523-6990 (fax) jschuld@... 651 238-1049 (mobile) ********************************************************************** This message may contain information which is confidential or privileged. If you are not the intended recipient, please advise the sender immediately by reply e-mail and delete this message and any attachments without retaining a copy. ********************************************************************** Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 >All As promised I have been intouch with Endocardial Solutions. This is the >company that offer 3d mapping for AF. I promised Mr. Schuld that I received >any information from them I would post this for our members but would not >add any comments or recommendations. This I have done with the exception of >scrubbing the Drs name and email that he gave me in the UK. I have also had >to scrub two GIF files simply as my company forbids me passing on personal >mails and a GIF files is a sure way of getting caught. > >I hope you all understand and this mail below is of some use to you all. > >Good Luck > >Regards > This is fascinating stuff and will surely increase the knowledge the docs get of the heart in action. For anyone who is squeamish and worried about looking at the movies there is nothing gory in them! The movies are a little large though, so anyone with a slow connection may want to think twice. The sizes are... AF2.avi is 2.9 Mb afib1.avi is 7.2 Mb what a great contact - well done that man! cheers -- D Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 In a message dated 2/1/01 11:41:48 AM Eastern Standard Time, john.codling@... writes: > I tried to view the films but was unable to get them to respond. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2001 Report Share Posted February 1, 2001 I put the two omitted gif pictures in the Files section on the web page. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2001 Report Share Posted February 2, 2001 Just want to say thanks to Codling for all the great sites he has posted recently and for his having made contact with Endocardial Solutions. Good job! Sandy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2001 Report Share Posted February 2, 2001 Agreed with Sandy! Thanks for Codling's work for us all. Willa Re: News > Just want to say thanks to Codling for all the great sites he has > posted recently and for his having made contact with Endocardial Solutions. > Good job! Sandy > > > > Web Page /group/AFIBsupport > Afibbers Database- http://www.dialsolutions.com/af > To Unsubscribe send an email to: AFIBsupport-unsubscribeegroups > Daily digest mode: Send a blank message to AFIBsupport-digestegroups > Individual emails: Send a blank message to AFIBsupport-normalegroups > Read on web only: Send a blank message to AFIBsupport-nomailegroups > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 11, 2001 Report Share Posted February 11, 2001 All some news that might be interesting. ...\..\catalogue/default.cfm <../../catalogue/default.cfm> ...\..\catalogue/default.cfm <../../catalogue/default.cfm> ...\..\browse/default.cfm <../../browse/default.cfm> ..\..\browse/default.cfm <../../browse/default.cfm> ..\..\journals/default.cfm <../../journals/default.cfm> ..\..\journals/default.cfm <../../journals/default.cfm> ..\..\contacts/default.cfm <../../contacts/default.cfm> ..\..\contacts/default.cfm <../../contacts/default.cfm> ..\..\help/default.cfm <../../help/default.cfm> ...\..\help/default.cfm <../../help/default.cfm> ..\..\ealert/default.cfm <../../ealert/default.cfm> ..\..\ealert/default.cfm <../../ealert/default.cfm> * Journal Home <default.cfm> * Aims & Scope <as.cfm> * Sample Copy Online <sample.cfm> * Latest Issue <latest.cfm> * Previous Issues <previous.cfm> * Search Issues <search.cfm> * Table of Contents Service <alert.cfm> * Full Text Online <ideal.cfm> * Subscribe <subscribe.cfm?brand=1> * Editorial Board <board.cfm> * Instructions to Authors <authinfo.cfm> * Society Information <socy.cfm> * Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Joyce...I guess God knows what he is doing...it's hard for me to remember that everything is just the way it's supposed to be; let go and let God; one day at a time....I say these things over and over to remind me I'm not in charge. I too have other chronic conditions but not as serious as yours. I pray for you Joyce. I hope your vacation is pleasant for you! My daughter, Lysa and I, are going to the beach next week and I can hardly wait. The two of us do this every year and now it is especially meaningful. I wish I had a magic wand I could wave over all of us....Hugs and love, Sher ipf 5-06 News Well, Boys and Girls....my answer was NO! I got my letter today and they decided that I had too many other medical problems to proceed with transplant plans. I was positive for antiphospholipid syndrome, (have always been) which is a Lupus related blood clotting disorder. I had tested negative the last time so that is why the evaluation even took place. Then thier bloodwork came up positive. They also stated the newly found coronary artery disease and 16 other conditions. So, I am back in the hands of God....same place I have been all along. Please remember me in your prayers. I am especially concerned with my larynx condition. I would have to go off Plavix to have biopsy and that would be suicide. Or I can let it go, never talk again, and possibly be ignoring cancer. Aaaargh!!! I am leaving all that up to the docs. I am not capable of making a decision like that! Just a little numb today. Some days it is hard to keep thinking positive. I am so glad that we are planning this vacation.......I need a break and some HAPPY! Just another little irritant....they said in the list of reasons that I was Obese! I have lost down from 222 to 153 and have been feeling so skinny. HA! now, to find out I am still obese. I could show them Obese!!! Hugs, Joyce PF 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Peggy 09/04 ipf Well, Boys and Girls....my answer was NO! I got my letter today and they decided that I had too many other medical problems to proceed with transplant plans. I was positive for antiphospholipid syndrome, (have always been) which is a Lupus related blood clotting disorder. I had tested negative the last time so that is why the evaluation even took place. Then thier bloodwork came up positive. They also stated the newly found coronary artery disease and 16 other conditions. So, I am back in the hands of God....same place I have been all along. Please remember me in your prayers. I am especially concerned with my larynx condition. I would have to go off Plavix to have biopsy and that would be suicide. Or I can let it go, never talk again, and possibly be ignoring cancer. Aaaargh!!! I am leaving all that up to the docs. I am not capable of making a decision like that! Just a little numb today. Some days it is hard to keep thinking positive. I am so glad that we are planning this vacation.......I need a break and some HAPPY! Just another little irritant....they said in the list of reasons that I was Obese! I have lost down from 222 to 153 and have been feeling so skinny. HA! now, to find out I am still obese. I could show them Obese!!! Hugs, Joyce PF 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2006 Report Share Posted July 15, 2006 Dearest Joyce, I kinda wish I was over the decision part. One way or the other. I hate that for you, since you had yourself ready for the new lung and went through all you did. But if they had not done the tests you would be in a mess with your artery. You know went off plavix for almost a year. He now takes an aspirin a day. His cath. was fine so maybe they can get you off the plavix for long enough to do get the biopsy. God knows the answers we'll have to put this in his hands. I most definitely will be praying. Which Dr will care for your larynx? WOW I'm a little numb too. I think you've got quite a few Doctors scratching their collective heads. But I believe the report of the Lord. He is our strength and our guide. God Bless you my friend and Sister in the Lord. Now The Dr that said you are obese has an eating disorder. I would give my first born to be that little.(maybe not) Think of it this way. Your bones skin & stuff weigh 50 Lbs. we all know your Heart is a good 100 lbs. so where does he get obese from.. I know your lookin hot... HAHAHA I sound like a teenager or Paris Hilton . I think we need a current picture. That is what my goal 150 to 160. I'll be happy.. I'm a healthy American that believes we should have some meat on our bones. If that is obese then I'll get the same letter. I'm 202. But we have a beautiful day today. I hope our Heavenly Father wraps his arms around you and comforts you.. He is the same yesterday TODAY and forever. Love and Prayers, ...Peggy 09/04 ipf Well, Boys and Girls....my answer was NO! I got my letter today and they decided that I had too many other medical problems to proceed with transplant plans. I was positive for antiphospholipid syndrome, (have always been) which is a Lupus related blood clotting disorder. I had tested negative the last time so that is why the evaluation even took place. Then thier bloodwork came up positive. They also stated the newly found coronary artery disease and 16 other conditions. So, I am back in the hands of God....same place I have been all along. Please remember me in your prayers. I am especially concerned with my larynx condition. I would have to go off Plavix to have biopsy and that would be suicide. Or I can let it go, never talk again, and possibly be ignoring cancer. Aaaargh!!! I am leaving all that up to the docs. I am not capable of making a decision like that! Just a little numb today. Some days it is hard to keep thinking positive. I am so glad that we are planning this vacation.......I need a break and some HAPPY! Just another little irritant....they said in the list of reasons that I was Obese! I have lost down from 222 to 153 and have been feeling so skinny. HA! now, to find out I am still obese. I could show them Obese!!! Hugs, Joyce PF 1997 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Fred, Who gave you this diagnosis? Was it the same pumonary doctor that diagnosed fibrosis? What is wrong that there can not be acurate diagnosis of lung disease? Did you have biopsy early on? Even with biopsy people have been misdiagnosed! I am happy for you. Now with your new heart and a new diagnosis which is not soooo bad, you can make plans with your family. I pray that your life is improving. Very glad about the asbestos thing!! Hugs, Joyce PF 1997> >> >>> >> >>> >> >> Well, Boys and Girls....my answer was NO! I got my letter today> >> >and> >> >> they decided that I had too many other medical problems to> >proceed> >> >with> >> >> transplant plans.> >> >>> >> >> I was positive for antiphospholipid syndrome, (have always been)> >> >which> >> >> is a Lupus related blood clotting disorder. I had tested> >negative> >> >the> >> >> last time so that is why the evaluation even took place. Then> >> >thier> >> >> bloodwork came up positive.> >> >>> >> >> They also stated the newly found coronary artery disease and 16> >> >other> >> >> conditions. So, I am back in the hands of God....same place I> >have> >> >> >> >been> >> >> all along.> >> >>> >> >> Please remember me in your prayers. I am especially concerned> >with> >> >> >> >my> >> >> larynx condition. I would have to go off Plavix to have biopsy> >and> >> >> >> >that> >> >> would be suicide. Or I can let it go, never talk again, and> >> >possibly be> >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the> >> >docs. I> >> >> am not capable of making a decision like that!> >> >>> >> >> Just a little numb today. Some days it is hard to keep thinking> >> >> positive. I am so glad that we are planning this> >vacation.......I> >> >need> >> >> a break and some HAPPY!> >> >>> >> >> Just another little irritant....they said in the list of reasons> >> >that I> >> >> was Obese! I have lost down from 222 to 153 and have been> >feeling> >> >so> >> >> skinny. HA! now, to find out I am still obese. I could show them> >> >> Obese!!! [/:)]> >> >>> >> >> Hugs,> >> >>> >> >> Joyce PF 1997> >> >>> >> >> >> >> >> >> >> >> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Sher, I have been going through this for nine years.....and many more years with all the lupus stuff. Believe me, when this lung diagnosis was as new to me as yours is to you, I was not so brave. It takes some time to aclimate yourself and get accustomed to a new lifestyle....like being tethered to a tank. You have come through things in your life that would have destroyed me. Don't ever compare my strength to yours. I pale in the comparison! Hugs, Joyce 1997> > >>> > >> > > >> Well, Boys and Girls....my answer was NO! I got my letter today> > >and> > >> they decided that I had too many other medical problems to proceed > > >with> > >> transplant plans.> > >> > > >> I was positive for antiphospholipid syndrome, (have always been) > > >which> > >> is a Lupus related blood clotting disorder. I had tested negative > > >the> > >> last time so that is why the evaluation even took place. Then> > >thier> > >> bloodwork came up positive.> > >> > > >> They also stated the newly found coronary artery disease and 16 > > >other> > >> conditions. So, I am back in the hands of God....same place I have> > >> > >been> > >> all along.> > >> > > >> Please remember me in your prayers. I am especially concerned with> > >> > >my> > >> larynx condition. I would have to go off Plavix to have biopsy and> > >> > >that> > >> would be suicide. Or I can let it go, never talk again, and > > >possibly be> > >> ignoring cancer. Aaaargh!!! I am leaving all that up to the > > >docs. I> > >> am not capable of making a decision like that!> > >> > > >> Just a little numb today. Some days it is hard to keep thinking> > >> positive. I am so glad that we are planning this vacation.......I > > >need> > >> a break and some HAPPY!> > >> > > >> Just another little irritant....they said in the list of reasons > > >that I> > >> was Obese! I have lost down from 222 to 153 and have been feeling > > >so> > >> skinny. HA! now, to find out I am still obese. I could show them> > >> Obese!!! [/:)]> > >> > > >> Hugs,> > >> > > >> Joyce PF 1997> > >>> > >> > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Joyce...yes I know, we dare not compare. We have all had trials. I think God knows I may not endure what you do. He promises not to test us beyond. It's true, I have weathered my personal trials but there again, God knew I could do it. I have been supportive to those who cross my path just as you are supportive to those of us who cross your path. I do so admire you. Love, Sher Re: News Sher, I have been going through this for nine years.....and many more years with all the lupus stuff. Believe me, when this lung diagnosis was as new to me as yours is to you, I was not so brave. It takes some time to aclimate yourself and get accustomed to a new lifestyle....like being tethered to a tank. You have come through things in your life that would have destroyed me. Don't ever compare my strength to yours. I pale in the comparison! Hugs, Joyce 1997> > >>> > >> > > >> Well, Boys and Girls....my answer was NO! I got my letter today> > >and> > >> they decided that I had too many other medical problems to proceed > > >with> > >> transplant plans.> > >> > > >> I was positive for antiphospholipid syndrome, (have always been) > > >which> > >> is a Lupus related blood clotting disorder. I had tested negative > > >the> > >> last time so that is why the evaluation even took place. Then> > >thier> > >> bloodwork came up positive.> > >> > > >> They also stated the newly found coronary artery disease and 16 > > >other> > >> conditions. So, I am back in the hands of God....same place I have> > >> > >been> > >> all along.> > >> > > >> Please remember me in your prayers. I am especially concerned with> > >> > >my> > >> larynx condition. I would have to go off Plavix to have biopsy and> > >> > >that> > >> would be suicide. Or I can let it go, never talk again, and > > >possibly be> > >> ignoring cancer. Aaaargh!!! I am leaving all that up to the > > >docs. I> > >> am not capable of making a decision like that!> > >> > > >> Just a little numb today. Some days it is hard to keep thinking> > >> positive. I am so glad that we are planning this vacation.......I > > >need> > >> a break and some HAPPY!> > >> > > >> Just another little irritant....they said in the list of reasons > > >that I> > >> was Obese! I have lost down from 222 to 153 and have been feeling > > >so> > >> skinny. HA! now, to find out I am still obese. I could show them> > >> Obese!!! [/:)]> > >> > > >> Hugs,> > >> > > >> Joyce PF 1997> > >>> > >> > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Joyce, I forgot to add I am familiar with Lupus. My grandmother and mother both had it. My blood labs show I have no auto-immune diseases. How grateful I am for that news. In fact I think it was Lupus that caused my mother's death. We were not close so I don't remember back to 1983. Sher ipf 5-06 Re: News Sher, I have been going through this for nine years.....and many more years with all the lupus stuff. Believe me, when this lung diagnosis was as new to me as yours is to you, I was not so brave. It takes some time to aclimate yourself and get accustomed to a new lifestyle....like being tethered to a tank. You have come through things in your life that would have destroyed me. Don't ever compare my strength to yours. I pale in the comparison! Hugs, Joyce 1997> > >>> > >> > > >> Well, Boys and Girls....my answer was NO! I got my letter today> > >and> > >> they decided that I had too many other medical problems to proceed > > >with> > >> transplant plans.> > >> > > >> I was positive for antiphospholipid syndrome, (have always been) > > >which> > >> is a Lupus related blood clotting disorder. I had tested negative > > >the> > >> last time so that is why the evaluation even took place. Then> > >thier> > >> bloodwork came up positive.> > >> > > >> They also stated the newly found coronary artery disease and 16 > > >other> > >> conditions. So, I am back in the hands of God....same place I have> > >> > >been> > >> all along.> > >> > > >> Please remember me in your prayers. I am especially concerned with> > >> > >my> > >> larynx condition. I would have to go off Plavix to have biopsy and> > >> > >that> > >> would be suicide. Or I can let it go, never talk again, and > > >possibly be> > >> ignoring cancer. Aaaargh!!! I am leaving all that up to the > > >docs. I> > >> am not capable of making a decision like that!> > >> > > >> Just a little numb today. Some days it is hard to keep thinking> > >> positive. I am so glad that we are planning this vacation.......I > > >need> > >> a break and some HAPPY!> > >> > > >> Just another little irritant....they said in the list of reasons > > >that I> > >> was Obese! I have lost down from 222 to 153 and have been feeling > > >so> > >> skinny. HA! now, to find out I am still obese. I could show them> > >> Obese!!! [/:)]> > >> > > >> Hugs,> > >> > > >> Joyce PF 1997> > >>> > >> > >> > >> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 I don't know, but I'll find out. Phred ---- Original Message ---- From: lovepuppy49@... To: Breathe-Support Subject: RE: Re: News Date: Mon, 17 Jul 2006 09:56:34 -0700 (PDT) >Phred, are the drs able to treat you now, and how is your >prognosis.It seems like here a few of us who have gone thru the >misdiagnosis this year. > > HP 6/06 > >phredta11bl@... wrote: > Well, Joyce, it seems I have bronchiolitis NOT ipf! Doesn't >seem to >have any trace of asbestos in my xrays. It makes me feel better but, >am NOT sure if it is ethical for any scholarship for Lani. > >Phred > >---- Original Message ---- >From: joycedalton29@... >To: Breathe-Support >Subject: RE: Re: News >Date: Mon, 17 Jul 2006 13:48:24 -0000 > >> >>Fred, >> >>Thanks for caring. Actually, the Antiphospholipid Syndrome, >>anticardiolipin antibody, and Lupus anticoagulant has always been >>positive until last December when they tested negative. The tests at >> Jewish were all positive. It would be suicide to try >>transplant. >>I have already had a stroke (with seizure disorder as a result) and >>blood clots in my legs. >> >>They also found that my ribs had been broken...which I knew (ouch) >>That >>means osteoporosis (steroids) and no doc wants to saw through >>powerdery >>bones! >> >>There are many complications because of life long connective tissue >>including Lupus. Even though take complicated cases, I was >>off >>the scale. The coronary artery disease that they found there is >>another >>important reason why they said no. >> >>I am glad that I went. The stent probably saved my life. My docs >>here >>now can confer with the best docs in the land. They got so much >>valuable information and hopefully will be able to extend my life a >>little longer. >> >>I am not going to lie down and die. They are going to find my cold >>dead >>body at the Mall. I push, push, push myself. It has worked for nine >>years. God gave me THIS day and I am going to use it. I refuse to >>sit >>down and quit. Sometimes I am sick and I do sit down....even lay >>down....but I will not quit!!!! >> >>You are not the only stubborn member of our group!!! >> >>Hugs, >> >>Joyce PF 1997 >> >>> >> >>> >> >>> >> Well, Boys and Girls....my answer was NO! I got my letter today >>> >and >>> >> they decided that I had too many other medical problems to >>proceed >>> >with >>> >> transplant plans. >>> >> >>> >> I was positive for antiphospholipid syndrome, (have always >been) >>> >which >>> >> is a Lupus related blood clotting disorder. I had tested >>negative >>> >the >>> >> last time so that is why the evaluation even took place. Then >>> >thier >>> >> bloodwork came up positive. >>> >> >>> >> They also stated the newly found coronary artery disease and 16 >>> >other >>> >> conditions. So, I am back in the hands of God....same place I >>have >>> > >>> >been >>> >> all along. >>> >> >>> >> Please remember me in your prayers. I am especially concerned >>with >>> > >>> >my >>> >> larynx condition. I would have to go off Plavix to have biopsy >>and >>> > >>> >that >>> >> would be suicide. Or I can let it go, never talk again, and >>> >possibly be >>> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the >>> >docs. I >>> >> am not capable of making a decision like that! >>> >> >>> >> Just a little numb today. Some days it is hard to keep thinking >>> >> positive. I am so glad that we are planning this >>vacation.......I >>> >need >>> >> a break and some HAPPY! >>> >> >>> >> Just another little irritant....they said in the list of >reasons >>> >that I >>> >> was Obese! I have lost down from 222 to 153 and have been >>feeling >>> >so >>> >> skinny. HA! now, to find out I am still obese. I could show >them >>> >> Obese!!! [/:)] >>> >> >>> >> Hugs, >>> >> >>> >> Joyce PF 1997 >>> >> >>> > >>> > >>> > >>> > >>> > >>> >> >> > > > > > > >--------------------------------- >Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and >30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Thanks ... right now I'm dealing with a hospital who can't add or subtract, threatened water turnoff, house damage from defective fridge, screwed up satellite, warning light on in the car that'll cost $178 ... more of same, :<( !!! Phred ---- Original Message ---- From: bofus@... To: Breathe-Support Subject: Re: Re: News Date: Mon, 17 Jul 2006 10:21:00 -0700 >Phred...I'm glad when I hear one does not have ipf! Perhaps this will >ease your life some. Sher ipf 5-06 > RE: Re: News > Date: Mon, 17 Jul 2006 13:48:24 -0000 > > > > >Fred, > > > >Thanks for caring. Actually, the Antiphospholipid Syndrome, > >anticardiolipin antibody, and Lupus anticoagulant has always >been > >positive until last December when they tested negative. The >tests at > > Jewish were all positive. It would be suicide to try > >transplant. > >I have already had a stroke (with seizure disorder as a result) >and > >blood clots in my legs. > > > >They also found that my ribs had been broken...which I knew >(ouch) > >That > >means osteoporosis (steroids) and no doc wants to saw through > >powerdery > >bones! > > > >There are many complications because of life long connective >tissue > >including Lupus. Even though take complicated cases, I >was > >off > >the scale. The coronary artery disease that they found there is > >another > >important reason why they said no. > > > >I am glad that I went. The stent probably saved my life. My docs > >here > >now can confer with the best docs in the land. They got so much > >valuable information and hopefully will be able to extend my >life a > >little longer. > > > >I am not going to lie down and die. They are going to find my >cold > >dead > >body at the Mall. I push, push, push myself. It has worked for >nine > >years. God gave me THIS day and I am going to use it. I refuse >to > >sit > >down and quit. Sometimes I am sick and I do sit down....even lay > >down....but I will not quit!!!! > > > >You are not the only stubborn member of our group!!! > > > >Hugs, > > > >Joyce PF 1997 > > > >> >> > >> >> > >> >> Well, Boys and Girls....my answer was NO! I got my letter >today > >> >and > >> >> they decided that I had too many other medical problems to > >proceed > >> >with > >> >> transplant plans. > >> >> > >> >> I was positive for antiphospholipid syndrome, (have always >been) > >> >which > >> >> is a Lupus related blood clotting disorder. I had tested > >negative > >> >the > >> >> last time so that is why the evaluation even took place. >Then > >> >thier > >> >> bloodwork came up positive. > >> >> > >> >> They also stated the newly found coronary artery disease >and 16 > >> >other > >> >> conditions. So, I am back in the hands of God....same place >I > >have > >> > > >> >been > >> >> all along. > >> >> > >> >> Please remember me in your prayers. I am especially >concerned > >with > >> > > >> >my > >> >> larynx condition. I would have to go off Plavix to have >biopsy > >and > >> > > >> >that > >> >> would be suicide. Or I can let it go, never talk again, and > >> >possibly be > >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the > >> >docs. I > >> >> am not capable of making a decision like that! > >> >> > >> >> Just a little numb today. Some days it is hard to keep >thinking > >> >> positive. I am so glad that we are planning this > >vacation.......I > >> >need > >> >> a break and some HAPPY! > >> >> > >> >> Just another little irritant....they said in the list of >reasons > >> >that I > >> >> was Obese! I have lost down from 222 to 153 and have been > >feeling > >> >so > >> >> skinny. HA! now, to find out I am still obese. I could show >them > >> >> Obese!!! [/:)] > >> >> > >> >> Hugs, > >> >> > >> >> Joyce PF 1997 > >> >> > >> > > >> > > >> > > >> > > >> > > >> > > > > > > > > > > >--------------------------------------------------------------------- >--------- > Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and >30+ countries) for 2¢/min or less. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Yabbut, wat da f. is bronchiolitis??? Phred ---- Original Message ---- From: pac1773@... To: Breathe-Support Subject: Re: Re: News Date: Mon, 17 Jul 2006 14:16:20 -0400 >YAHOO, Wow Fred you must be dancing all over the place.. >CONGRADULATION !!! >I can not imagine hearing that.. I can only imagine..Go do stuff.. >Peggy 09/04 ipf > >> Well, Joyce, it seems I have bronchiolitis NOT ipf! Doesn't seem to >> have any trace of asbestos in my xrays. It makes me feel better >but, >> am NOT sure if it is ethical for any scholarship for Lani. >> >> Phred >> >> ---- Original Message ---- >> From: joycedalton29@... >> To: Breathe-Support >> Subject: RE: Re: News >> Date: Mon, 17 Jul 2006 13:48:24 -0000 >> >>> >>> Fred, >>> >>> Thanks for caring. Actually, the Antiphospholipid Syndrome, >>> anticardiolipin antibody, and Lupus anticoagulant has always been >>> positive until last December when they tested negative. The tests >at >>> Jewish were all positive. It would be suicide to try >>> transplant. >>> I have already had a stroke (with seizure disorder as a result) >and >>> blood clots in my legs. >>> >>> They also found that my ribs had been broken...which I knew (ouch) >>> That >>> means osteoporosis (steroids) and no doc wants to saw through >>> powerdery >>> bones! >>> >>> There are many complications because of life long connective >tissue >>> including Lupus. Even though take complicated cases, I was >>> off >>> the scale. The coronary artery disease that they found there is >>> another >>> important reason why they said no. >>> >>> I am glad that I went. The stent probably saved my life. My docs >>> here >>> now can confer with the best docs in the land. They got so much >>> valuable information and hopefully will be able to extend my life >a >>> little longer. >>> >>> I am not going to lie down and die. They are going to find my >cold >>> dead >>> body at the Mall. I push, push, push myself. It has worked for >nine >>> years. God gave me THIS day and I am going to use it. I refuse >to >>> sit >>> down and quit. Sometimes I am sick and I do sit down....even lay >>> down....but I will not quit!!!! >>> >>> You are not the only stubborn member of our group!!! >>> >>> Hugs, >>> >>> Joyce PF 1997 >>> >>>>>> >>>>>> >>>>>> Well, Boys and Girls....my answer was NO! I got my letter today >>>>> and >>>>>> they decided that I had too many other medical problems to >>> proceed >>>>> with >>>>>> transplant plans. >>>>>> >>>>>> I was positive for antiphospholipid syndrome, (have always >been) >>>>> which >>>>>> is a Lupus related blood clotting disorder. I had tested >>> negative >>>>> the >>>>>> last time so that is why the evaluation even took place. Then >>>>> thier >>>>>> bloodwork came up positive. >>>>>> >>>>>> They also stated the newly found coronary artery disease and 16 >>>>> other >>>>>> conditions. So, I am back in the hands of God....same place I >>> have >>>>> >>>>> been >>>>>> all along. >>>>>> >>>>>> Please remember me in your prayers. I am especially concerned >>> with >>>>> >>>>> my >>>>>> larynx condition. I would have to go off Plavix to have biopsy >>> and >>>>> >>>>> that >>>>>> would be suicide. Or I can let it go, never talk again, and >>>>> possibly be >>>>>> ignoring cancer. Aaaargh!!! I am leaving all that up to the >>>>> docs. I >>>>>> am not capable of making a decision like that! >>>>>> >>>>>> Just a little numb today. Some days it is hard to keep thinking >>>>>> positive. I am so glad that we are planning this >>> vacation.......I >>>>> need >>>>>> a break and some HAPPY! >>>>>> >>>>>> Just another little irritant....they said in the list of >reasons >>>>> that I >>>>>> was Obese! I have lost down from 222 to 153 and have been >>> feeling >>>>> so >>>>>> skinny. HA! now, to find out I am still obese. I could show >them >>>>>> Obese!!! [/:)] >>>>>> >>>>>> Hugs, >>>>>> >>>>>> Joyce PF 1997 >>>>>> >>>>> >>>>> >>>>> >>>>> >>>>> >>>> >>> >>> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 biosy was done during the heart surgery and sent to the Mayo Clinic. Phred ---- Original Message ---- From: joycedalton29@... To: Breathe-Support Subject: RE: Re: News Date: Mon, 17 Jul 2006 18:38:55 -0000 > >Fred, > >Who gave you this diagnosis? Was it the same pumonary doctor that >diagnosed fibrosis? What is wrong that there can not be acurate >diagnosis of lung disease? Did you have biopsy early on? Even with >biopsy people have been misdiagnosed! > >I am happy for you. Now with your new heart and a new diagnosis >which >is not soooo bad, you can make plans with your family. I pray that >your >life is improving. Very glad about the asbestos thing!! > >Hugs, > >Joyce PF 1997 > >> >> >> >> >> >> >> >> >> Well, Boys and Girls....my answer was NO! I got my letter >today >> >> >and >> >> >> they decided that I had too many other medical problems to >> >proceed >> >> >with >> >> >> transplant plans. >> >> >> >> >> >> I was positive for antiphospholipid syndrome, (have always >been) >> >> >which >> >> >> is a Lupus related blood clotting disorder. I had tested >> >negative >> >> >the >> >> >> last time so that is why the evaluation even took place. Then >> >> >thier >> >> >> bloodwork came up positive. >> >> >> >> >> >> They also stated the newly found coronary artery disease and >16 >> >> >other >> >> >> conditions. So, I am back in the hands of God....same place I >> >have >> >> > >> >> >been >> >> >> all along. >> >> >> >> >> >> Please remember me in your prayers. I am especially concerned >> >with >> >> > >> >> >my >> >> >> larynx condition. I would have to go off Plavix to have >biopsy >> >and >> >> > >> >> >that >> >> >> would be suicide. Or I can let it go, never talk again, and >> >> >possibly be >> >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the >> >> >docs. I >> >> >> am not capable of making a decision like that! >> >> >> >> >> >> Just a little numb today. Some days it is hard to keep >thinking >> >> >> positive. I am so glad that we are planning this >> >vacation.......I >> >> >need >> >> >> a break and some HAPPY! >> >> >> >> >> >> Just another little irritant....they said in the list of >reasons >> >> >that I >> >> >> was Obese! I have lost down from 222 to 153 and have been >> >feeling >> >> >so >> >> >> skinny. HA! now, to find out I am still obese. I could show >them >> >> >> Obese!!! [/:)] >> >> >> >> >> >> Hugs, >> >> >> >> >> >> Joyce PF 1997 >> >> >> >> >> > >> >> > >> >> > >> >> > >> >> > >> >> >> > >> > >> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Look on line.. It's an infection of the small tubes inside the lungs... I'll trade.. is that your diagnosis? If so you are GREATLY BLESSED..It usually is in children 6 months to 3 years old.. sounds about right.. Quit ya cussin child.. " YABUT NOTHIN " !!!!! Peggy 09/04 ipf > Yabbut, wat da f. is bronchiolitis??? > > Phred > > ---- Original Message ---- > From: pac1773@... > To: Breathe-Support > Subject: Re: Re: News > Date: Mon, 17 Jul 2006 14:16:20 -0400 > >> YAHOO, Wow Fred you must be dancing all over the place.. >> CONGRADULATION !!! >> I can not imagine hearing that.. I can only imagine..Go do stuff.. >> Peggy 09/04 ipf >> >>> Well, Joyce, it seems I have bronchiolitis NOT ipf! Doesn't seem to >>> have any trace of asbestos in my xrays. It makes me feel better >> but, >>> am NOT sure if it is ethical for any scholarship for Lani. >>> >>> Phred >>> >>> ---- Original Message ---- >>> From: joycedalton29@... >>> To: Breathe-Support >>> Subject: RE: Re: News >>> Date: Mon, 17 Jul 2006 13:48:24 -0000 >>> >>>> >>>> Fred, >>>> >>>> Thanks for caring. Actually, the Antiphospholipid Syndrome, >>>> anticardiolipin antibody, and Lupus anticoagulant has always been >>>> positive until last December when they tested negative. The tests >> at >>>> Jewish were all positive. It would be suicide to try >>>> transplant. >>>> I have already had a stroke (with seizure disorder as a result) >> and >>>> blood clots in my legs. >>>> >>>> They also found that my ribs had been broken...which I knew (ouch) >>>> That >>>> means osteoporosis (steroids) and no doc wants to saw through >>>> powerdery >>>> bones! >>>> >>>> There are many complications because of life long connective >> tissue >>>> including Lupus. Even though take complicated cases, I was >>>> off >>>> the scale. The coronary artery disease that they found there is >>>> another >>>> important reason why they said no. >>>> >>>> I am glad that I went. The stent probably saved my life. My docs >>>> here >>>> now can confer with the best docs in the land. They got so much >>>> valuable information and hopefully will be able to extend my life >> a >>>> little longer. >>>> >>>> I am not going to lie down and die. They are going to find my >> cold >>>> dead >>>> body at the Mall. I push, push, push myself. It has worked for >> nine >>>> years. God gave me THIS day and I am going to use it. I refuse >> to >>>> sit >>>> down and quit. Sometimes I am sick and I do sit down....even lay >>>> down....but I will not quit!!!! >>>> >>>> You are not the only stubborn member of our group!!! >>>> >>>> Hugs, >>>> >>>> Joyce PF 1997 >>>> >>>>>>> >>>>>>> >>>>>>> Well, Boys and Girls....my answer was NO! I got my letter today >>>>>> and >>>>>>> they decided that I had too many other medical problems to >>>> proceed >>>>>> with >>>>>>> transplant plans. >>>>>>> >>>>>>> I was positive for antiphospholipid syndrome, (have always >> been) >>>>>> which >>>>>>> is a Lupus related blood clotting disorder. I had tested >>>> negative >>>>>> the >>>>>>> last time so that is why the evaluation even took place. Then >>>>>> thier >>>>>>> bloodwork came up positive. >>>>>>> >>>>>>> They also stated the newly found coronary artery disease and 16 >>>>>> other >>>>>>> conditions. So, I am back in the hands of God....same place I >>>> have >>>>>> >>>>>> been >>>>>>> all along. >>>>>>> >>>>>>> Please remember me in your prayers. I am especially concerned >>>> with >>>>>> >>>>>> my >>>>>>> larynx condition. I would have to go off Plavix to have biopsy >>>> and >>>>>> >>>>>> that >>>>>>> would be suicide. Or I can let it go, never talk again, and >>>>>> possibly be >>>>>>> ignoring cancer. Aaaargh!!! I am leaving all that up to the >>>>>> docs. I >>>>>>> am not capable of making a decision like that! >>>>>>> >>>>>>> Just a little numb today. Some days it is hard to keep thinking >>>>>>> positive. I am so glad that we are planning this >>>> vacation.......I >>>>>> need >>>>>>> a break and some HAPPY! >>>>>>> >>>>>>> Just another little irritant....they said in the list of >> reasons >>>>>> that I >>>>>>> was Obese! I have lost down from 222 to 153 and have been >>>> feeling >>>>>> so >>>>>>> skinny. HA! now, to find out I am still obese. I could show >> them >>>>>>> Obese!!! [/:)] >>>>>>> >>>>>>> Hugs, >>>>>>> >>>>>>> Joyce PF 1997 >>>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>>> >>>>> >>>> >>>> >>> >>> >>> >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Fred, You can't get much better than the Mayo Clinic. Is that who diagnosed bron> >> >> >>> >> >> >>> >> >> >> Well, Boys and Girls....my answer was NO! I got my letter> >today> >> >> >and> >> >> >> they decided that I had too many other medical problems to> >> >proceed> >> >> >with> >> >> >> transplant plans.> >> >> >>> >> >> >> I was positive for antiphospholipid syndrome, (have always> >been)> >> >> >which> >> >> >> is a Lupus related blood clotting disorder. I had tested> >> >negative> >> >> >the> >> >> >> last time so that is why the evaluation even took place. Then> >> >> >thier> >> >> >> bloodwork came up positive.> >> >> >>> >> >> >> They also stated the newly found coronary artery disease and> >16> >> >> >other> >> >> >> conditions. So, I am back in the hands of God....same place I> >> >have> >> >> >> >> >> >been> >> >> >> all along.> >> >> >>> >> >> >> Please remember me in your prayers. I am especially concerned> >> >with> >> >> >> >> >> >my> >> >> >> larynx condition. I would have to go off Plavix to have> >biopsy> >> >and> >> >> >> >> >> >that> >> >> >> would be suicide. Or I can let it go, never talk again, and> >> >> >possibly be> >> >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the> >> >> >docs. I> >> >> >> am not capable of making a decision like that!> >> >> >>> >> >> >> Just a little numb today. Some days it is hard to keep> >thinking> >> >> >> positive. I am so glad that we are planning this> >> >vacation.......I> >> >> >need> >> >> >> a break and some HAPPY!> >> >> >>> >> >> >> Just another little irritant....they said in the list of> >reasons> >> >> >that I> >> >> >> was Obese! I have lost down from 222 to 153 and have been> >> >feeling> >> >> >so> >> >> >> skinny. HA! now, to find out I am still obese. I could show> >them> >> >> >> Obese!!! [/:)]> >> >> >>> >> >> >> Hugs,> >> >> >>> >> >> >> Joyce PF 1997> >> >> >>> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >> >>> >> >> >> >> >>> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Fred, I did finish the last post, but some of it got lost. I am the only one that loses part of my message when sending. Weird. I thought I was losing my mind! Anyway here are a couple of articles that probably would help: http://www.mayoclinic.com/health/bronchiolitis-obliterans/AN00307 http://www.emedicine.com/radio/topic117.htm from Wikipedia: Bronchiolitis obliterans is a lung disease characterized by fixed airway obstruction. Inflammation and scarring occur in the airways of the lung, resulting in severe shortness of breath and dry cough. These symptoms do not go away during weekends or vacations. Bronchiolitis obliterans is often misdiagnosed as asthma, bronchitis, emphysema, or pneumonia. Chest X-rays and diffusing capacity of the lung (DLCO) are usually normal, but spirometry tests show fixed airway obstructions. This disease is irreversible and severe cases have often been placed on lung transplant waiting lists. Hope this helps.....there are soooooo many lung diseases that probably look just alike on the CT scans and X rays. Hugs, Joyce PF 1997> > >> >> >>> > >> >> >>> > >> >> >> Well, Boys and Girls....my answer was NO! I got my letter> > >today> > >> >> >and> > >> >> >> they decided that I had too many other medical problems to> > >> >proceed> > >> >> >with> > >> >> >> transplant plans.> > >> >> >>> > >> >> >> I was positive for antiphospholipid syndrome, (have always> > >been)> > >> >> >which> > >> >> >> is a Lupus related blood clotting disorder. I had tested> > >> >negative> > >> >> >the> > >> >> >> last time so that is why the evaluation even took place. Then> > >> >> >thier> > >> >> >> bloodwork came up positive.> > >> >> >>> > >> >> >> They also stated the newly found coronary artery disease and> > >16> > >> >> >other> > >> >> >> conditions. So, I am back in the hands of God....same place I> > >> >have> > >> >> >> > >> >> >been> > >> >> >> all along.> > >> >> >>> > >> >> >> Please remember me in your prayers. I am especially concerned> > >> >with> > >> >> >> > >> >> >my> > >> >> >> larynx condition. I would have to go off Plavix to have> > >biopsy> > >> >and> > >> >> >> > >> >> >that> > >> >> >> would be suicide. Or I can let it go, never talk again, and> > >> >> >possibly be> > >> >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the> > >> >> >docs. I> > >> >> >> am not capable of making a decision like that!> > >> >> >>> > >> >> >> Just a little numb today. Some days it is hard to keep> > >thinking> > >> >> >> positive. I am so glad that we are planning this> > >> >vacation.......I> > >> >> >need> > >> >> >> a break and some HAPPY!> > >> >> >>> > >> >> >> Just another little irritant....they said in the list of> > >reasons> > >> >> >that I> > >> >> >> was Obese! I have lost down from 222 to 153 and have been> > >> >feeling> > >> >> >so> > >> >> >> skinny. HA! now, to find out I am still obese. I could show> > >them> > >> >> >> Obese!!! [/:)]> > >> >> >>> > >> >> >> Hugs,> > >> >> >>> > >> >> >> Joyce PF 1997> > >> >> >>> > >> >> >> > >> >> >> > >> >> >> > >> >> >> > >> >> >> > >> >>> > >> >> > >> >> > >>> > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Hi Phred, Glad to hear of your diagnosis. Much better prognosis and I am so excited for you, but I would still like to set up the account for Lani. Citibank is looking into the legal and will let me know this week. When my oldest son was Lani's age my husband had heart failure and the first of what would end up being 4 bypass surgeries. He was just 38 years old and it was touch and go in the hospital for awhile. It was so hard on my kids. I was gone at the hospital all the time (Jim was in for 4 months straight and then off and on for the next three years) and for the first time I had to think about working. I went back to school and a wonderful man at my husband's work paid for all of my books. Without his help I would not have become a teacher and I would not have been able to support my 6 children. When you wrote about Lani I felt it was a great time to pass back the blessing I got 15 years ago. I realize you are not a "poverty case" but I also know first hand the stress of hospital, doctor bills and the cost of just driving back and forth to appointments. If you don't feel good about the scholarship I'll understand, BUT I am hoping you will allow us to bless Lani as many of us have been blessed. Take care and not too much wine with the celebrating-phredta11bl@... wrote: Well, Joyce, it seems I have bronchiolitis NOT ipf! Doesn't seem to have any trace of asbestos in my xrays. It makes me feel better but, am NOT sure if it is ethical for any scholarship for Lani. Phred ---- Original Message ---- From: joycedalton29aol To: Breathe-Support Subject: RE: Re: News Date: Mon, 17 Jul 2006 13:48:24 -0000 > >Fred, > >Thanks for caring. Actually, the Antiphospholipid Syndrome, >anticardiolipin antibody, and Lupus anticoagulant has always been >positive until last December when they tested negative. The tests at > Jewish were all positive. It would be suicide to try >transplant. >I have already had a stroke (with seizure disorder as a result) and >blood clots in my legs. > >They also found that my ribs had been broken...which I knew (ouch) >That >means osteoporosis (steroids) and no doc wants to saw through >powerdery >bones! > >There are many complications because of life long connective tissue >including Lupus. Even though take complicated cases, I was >off >the scale. The coronary artery disease that they found there is >another >important reason why they said no. > >I am glad that I went. The stent probably saved my life. My docs >here >now can confer with the best docs in the land. They got so much >valuable information and hopefully will be able to extend my life a >little longer. > >I am not going to lie down and die. They are going to find my cold >dead >body at the Mall. I push, push, push myself. It has worked for nine >years. God gave me THIS day and I am going to use it. I refuse to >sit >down and quit. Sometimes I am sick and I do sit down....even lay >down....but I will not quit!!!! > >You are not the only stubborn member of our group!!! > >Hugs, > >Joyce PF 1997 > >> >> >> >> >> >> Well, Boys and Girls....my answer was NO! I got my letter today >> >and >> >> they decided that I had too many other medical problems to >proceed >> >with >> >> transplant plans. >> >> >> >> I was positive for antiphospholipid syndrome, (have always been) >> >which >> >> is a Lupus related blood clotting disorder. I had tested >negative >> >the >> >> last time so that is why the evaluation even took place. Then >> >thier >> >> bloodwork came up positive. >> >> >> >> They also stated the newly found coronary artery disease and 16 >> >other >> >> conditions. So, I am back in the hands of God....same place I >have >> > >> >been >> >> all along. >> >> >> >> Please remember me in your prayers. I am especially concerned >with >> > >> >my >> >> larynx condition. I would have to go off Plavix to have biopsy >and >> > >> >that >> >> would be suicide. Or I can let it go, never talk again, and >> >possibly be >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the >> >docs. I >> >> am not capable of making a decision like that! >> >> >> >> Just a little numb today. Some days it is hard to keep thinking >> >> positive. I am so glad that we are planning this >vacation.......I >> >need >> >> a break and some HAPPY! >> >> >> >> Just another little irritant....they said in the list of reasons >> >that I >> >> was Obese! I have lost down from 222 to 153 and have been >feeling >> >so >> >> skinny. HA! now, to find out I am still obese. I could show them >> >> Obese!!! [/:)] >> >> >> >> Hugs, >> >> >> >> Joyce PF 1997 >> >> >> > >> > >> > >> > >> > >> > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 Whoops! Well I guess a reprieve from ipf didn't help to ease your life some. Sorry. Sher RE: Re: News> Date: Mon, 17 Jul 2006 13:48:24 -0000>> >> >Fred,> >> >Thanks for caring. Actually, the Antiphospholipid Syndrome,> >anticardiolipin antibody, and Lupus anticoagulant has always>been> >positive until last December when they tested negative. The>tests at> > Jewish were all positive. It would be suicide to try> >transplant.> >I have already had a stroke (with seizure disorder as a result)>and> >blood clots in my legs.> >> >They also found that my ribs had been broken...which I knew>(ouch) > >That> >means osteoporosis (steroids) and no doc wants to saw through> >powerdery> >bones!> >> >There are many complications because of life long connective>tissue> >including Lupus. Even though take complicated cases, I>was> >off> >the scale. The coronary artery disease that they found there is> >another> >important reason why they said no.> >> >I am glad that I went. The stent probably saved my life. My docs> >here> >now can confer with the best docs in the land. They got so much> >valuable information and hopefully will be able to extend my>life a> >little longer.> >> >I am not going to lie down and die. They are going to find my>cold> >dead> >body at the Mall. I push, push, push myself. It has worked for>nine> >years. God gave me THIS day and I am going to use it. I refuse>to> >sit> >down and quit. Sometimes I am sick and I do sit down....even lay> >down....but I will not quit!!!!> >> >You are not the only stubborn member of our group!!!> >> >Hugs,> >> >Joyce PF 1997> >> >> >>> >> >>> >> >> Well, Boys and Girls....my answer was NO! I got my letter>today> >> >and> >> >> they decided that I had too many other medical problems to> >proceed> >> >with> >> >> transplant plans.> >> >>> >> >> I was positive for antiphospholipid syndrome, (have always>been)> >> >which> >> >> is a Lupus related blood clotting disorder. I had tested> >negative> >> >the> >> >> last time so that is why the evaluation even took place.>Then> >> >thier> >> >> bloodwork came up positive.> >> >>> >> >> They also stated the newly found coronary artery disease>and 16> >> >other> >> >> conditions. So, I am back in the hands of God....same place>I> >have> >> >> >> >been> >> >> all along.> >> >>> >> >> Please remember me in your prayers. I am especially>concerned> >with> >> >> >> >my> >> >> larynx condition. I would have to go off Plavix to have>biopsy> >and> >> >> >> >that> >> >> would be suicide. Or I can let it go, never talk again, and> >> >possibly be> >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to the> >> >docs. I> >> >> am not capable of making a decision like that!> >> >>> >> >> Just a little numb today. Some days it is hard to keep>thinking> >> >> positive. I am so glad that we are planning this> >vacation.......I> >> >need> >> >> a break and some HAPPY!> >> >>> >> >> Just another little irritant....they said in the list of>reasons> >> >that I> >> >> was Obese! I have lost down from 222 to 153 and have been> >feeling> >> >so> >> >> skinny. HA! now, to find out I am still obese. I could show>them> >> >> Obese!!! [/:)]> >> >>> >> >> Hugs,> >> >>> >> >> Joyce PF 1997> >> >>> >> >> >> >> >> >> >> >> >> >> >>> >> >>>>>>>>---------------------------------------------------------->---------> Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and>30+ countries) for 2¢/min or less.>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 17, 2006 Report Share Posted July 17, 2006 .... d'accord, the branch in AZ. Phred ---- Original Message ---- From: joycedalton29@... To: Breathe-Support Subject: RE: Re: News Date: Tue, 18 Jul 2006 01:02:55 -0000 > >Fred, > >You can't get much better than the Mayo Clinic. Is that who >diagnosed >bron > >> >> >> >> >> >> >> >> >> >> >> >> Well, Boys and Girls....my answer was NO! I got my letter >> >today >> >> >> >and >> >> >> >> they decided that I had too many other medical problems to >> >> >proceed >> >> >> >with >> >> >> >> transplant plans. >> >> >> >> >> >> >> >> I was positive for antiphospholipid syndrome, (have always >> >been) >> >> >> >which >> >> >> >> is a Lupus related blood clotting disorder. I had tested >> >> >negative >> >> >> >the >> >> >> >> last time so that is why the evaluation even took place. >Then >> >> >> >thier >> >> >> >> bloodwork came up positive. >> >> >> >> >> >> >> >> They also stated the newly found coronary artery disease >and >> >16 >> >> >> >other >> >> >> >> conditions. So, I am back in the hands of God....same >place I >> >> >have >> >> >> > >> >> >> >been >> >> >> >> all along. >> >> >> >> >> >> >> >> Please remember me in your prayers. I am especially >concerned >> >> >with >> >> >> > >> >> >> >my >> >> >> >> larynx condition. I would have to go off Plavix to have >> >biopsy >> >> >and >> >> >> > >> >> >> >that >> >> >> >> would be suicide. Or I can let it go, never talk again, >and >> >> >> >possibly be >> >> >> >> ignoring cancer. Aaaargh!!! I am leaving all that up to >the >> >> >> >docs. I >> >> >> >> am not capable of making a decision like that! >> >> >> >> >> >> >> >> Just a little numb today. Some days it is hard to keep >> >thinking >> >> >> >> positive. I am so glad that we are planning this >> >> >vacation.......I >> >> >> >need >> >> >> >> a break and some HAPPY! >> >> >> >> >> >> >> >> Just another little irritant....they said in the list of >> >reasons >> >> >> >that I >> >> >> >> was Obese! I have lost down from 222 to 153 and have been >> >> >feeling >> >> >> >so >> >> >> >> skinny. HA! now, to find out I am still obese. I could >show >> >them >> >> >> >> Obese!!! [/:)] >> >> >> >> >> >> >> >> Hugs, >> >> >> >> >> >> >> >> Joyce PF 1997 >> >> >> >> >> >> >> > >> >> >> > >> >> >> > >> >> >> > >> >> >> > >> >> >> >> >> > >> >> > >> >> >> > >> > >> > > Quote Link to comment Share on other sites More sharing options...
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