Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Joyce: I was wondering if you would mind answering a couple of questions for me regarding PH? Before you started any medication and before you saw someone for a diagnosis, did you have a lot of pressure in the middle of your chest? Were some days worse than others? Today, I cannot walk 10 feet on 6 liters without my sats dropping to 83 and heart rate going to 130. Did you experience this as well? My doctor got in touch with the pulmo yesterday and I have an appointment with him next Thursday. I sure am glad that it was such a short wait. Diane IPF June 07New Brunswick, Canada Looking for the perfect gift? Give the gift of Flickr! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Diane, that is a definite. Some days are definately better than others. Also the pressure. Some days are worse than others. Sometimes I think it has a lot to do with the weather. K IllinoisDiane wrote: Joyce: I was wondering if you would mind answering a couple of questions for me regarding PH? Before you started any medication and before you saw someone for a diagnosis, did you have a lot of pressure in the middle of your chest? Were some days worse than others? Today, I cannot walk 10 feet on 6 liters without my sats dropping to 83 and heart rate going to 130. Did you experience this as well? My doctor got in touch with the pulmo yesterday and I have an appointment with him next Thursday. I sure am glad that it was such a short wait. Diane IPF June 07New Brunswick, Canada Looking for the perfect gift? Give the gift of Flickr! K Central Il Hubby ipf- 2006 As for me and my house, we will serve the Lord 14 Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Diane Sure wish you could get to a doctor sooner as that could be so many things. I don't know when your last echocardiogram was but if not very recent you should definitely have one. It might give an indication of the start of PH and best to catch it early. The only way to be certain is a catheter which they would do if any indication on the echo. PH is sneaky and can intrude on us with signs or without any obvious signs that point directly to it. But, with any sudden drop best to check for it, pneumonia, and other complications. > > Joyce: > I was wondering if you would mind answering a couple of questions for me regarding PH? Before you started any medication and before you saw someone for a diagnosis, did you have a lot of pressure in the middle of your chest? Were some days worse than others? Today, I cannot walk 10 feet on 6 liters without my sats dropping to 83 and heart rate going to 130. Did you experience this as well? My doctor got in touch with the pulmo yesterday and I have an appointment with him next Thursday. I sure am glad that it was such a short wait. > Diane > IPF June 07 > New Brunswick, Canada > > > __________________________________________________________________ > Ask a question on any topic and get answers from real people. Go to Yahoo! Answers and share what you know at http://ca.answers.yahoo.com > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 Joyce: I am trying but my concentrator only goes up to 8. On 8, if I walk slowly, they will stay 88/89. I have just been trying to be fairly still and not over-exert for the time being. Diane IPF June 07New Brunswick, Canada Re: Questions Diane, Are you adjusting your 02 to keep your saturation above 90? Until you can see the pulmo, it is the only thing you can do to protect the rest of you. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > > >> > > Joyce:> > > I was wondering if you would mind answering a couple of questions> for> > me regarding PH? Before you started any medication and before you saw> > someone for a diagnosis, did you have a lot of pressure in the middle> of> > your chest? Were some days worse than others? Today, I cannot walk 10> > feet on 6 liters without my sats dropping to 83 and heart rate going> to> > 130. Did you experience this as well? My doctor got in touch with the> > pulmo yesterday and I have an appointment with him next Thursday. I> sure> > am glad that it was such a short wait.> > > Diane > > > IPF June 07> > > New Brunswick, Canada> > >> > >> > > ____________ _________ _________ _________ _________ _________ _> > > Ask a question on any topic and get answers from real people.. Go to> > Yahoo! Answers and share what you know at http://ca.answers. yahoo.com> > >> >> >> >> >> > ____________ _________ _________ _________ _________ _________ _> > Ask a question on any topic and get answers from real people. Go to> Yahoo! Answers and share what you know at http://ca.answers. yahoo.com> >> > > > > ____________ _________ _________ _________ _________ _________ _________> Looking for the perfect gift? Give the gift of Flickr! > > http://www.flickr. com/gift/> Ask a question on any topic and get answers from real people. Go to Yahoo! Answers. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 Diane, Have the doctor prescribe a concentrator that goes higher. You could also go on liquid, which is no noise and no electric bill. I use 5 big tanks a week, but we put them in the garage and drilled a hole to the inside. The doc said that the liquid was a greater concentration of 02 than the concentrator. I like it! Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16> > > >> > > > Joyce:> > > > I was wondering if you would mind answering a couple of questions> > for> > > me regarding PH? Before you started any medication and before you saw> > > someone for a diagnosis, did you have a lot of pressure in the middle> > of> > > your chest? Were some days worse than others? Today, I cannot walk 10> > > feet on 6 liters without my sats dropping to 83 and heart rate going> > to> > > 130. Did you experience this as well? My doctor got in touch with the> > > pulmo yesterday and I have an appointment with him next Thursday. I> > sure> > > am glad that it was such a short wait.> > > > Diane > > > > IPF June 07> > > > New Brunswick, Canada> > > >> > > >> > > > ____________ _________ _________ _________ _________ _________ _> > > > Ask a question on any topic and get answers from real people.. Go to> > > Yahoo! Answers and share what you know at http://ca.answers. yahoo.com> > > >> > >> > >> > >> > >> > > ____________ _________ _________ _________ _________ _________ _> > > Ask a question on any topic and get answers from real people.. Go to> > Yahoo! Answers and share what you know at http://ca.answers. yahoo.com> > >> > > > > > > > > > ____________ _________ _________ _________ _________ _________ _________> > Looking for the perfect gift? Give the gift of Flickr! > > > > http://www.flickr. com/gift/> >> > > > __________________________________________________________________> Instant Messaging, free SMS, sharing photos and more.... Try the new Yahoo! Canada Messenger at http://ca.beta.messenger.yahoo.com/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Jack, I'll just add to what Irene posted: NSIP is Non-specific interstitial pneumonitis, one of the over 200 forms of pulmonary fibrosis IPF is Idiopathic Pulmonary Fibrosis another form of fibrosis POC is a Portable Oxygen Concentrator. Inogen is one brand of POC AI is auto immune. Some of us have an auto immune disease which is thought to be the causative agent for the fibrosis in our lungs CPAP stands for Continuous Positive Airway Pressure. Some of us who suffer from sleep apnea have to use CPAP equipment at night to force air and/or oxygen into our lungs. I'm not sure why some posts you open have no message. How frequently is it happening? Sometimes we all might hit the send button too quickly and that would be one cause of an empty post. Hope that helps! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Questions Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Thanks, Irene. It is a help. Knowing them makes me realize that the meanings should have been self-evident. I plead overwork, underhealthy, old age, a general feeling of ennui and what do I care. LOL Jack Questions Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Thanks, Beth. You and Irene have been a big help. This is part of my continuing education on fibrosis. I want to be knowledgeable enough to spar with the pulmonologist. He doesn't appear to know anywhere near what the folks of this group do. Jack Questions Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 You're Welcome Jack. I'm one of the youngest on the group, I was diagnosed with PF 03/07, it was caused by the Methotrexate medication, which I take for my Crohn's Disease. Irene ---- Original Message ---- To: Breathe-Support Sent: Mon, 26 May 2008 11:46 am Subject: Re: Questions Thanks, Irene. It is a help. Knowing them makes me realize that the meanings should have been self-evident. I plead overwork, underhealthy, old age, a general feeling of ennui and what do I care. LOL Jack Questions Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Meet the new AOL.ca. Free radio, music, videos, news & entertainment – with a Canadian perspective. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2008 Report Share Posted May 27, 2008 Re: Questions okay, Jack, for what I know I hope this helps. VATS is video assisted thoracic surgery, i.e., lung biopsy. of which I had one and it diagnosis which stage of IPF you have. SATS are your oxygen saturation, which level of oxygen you are breathing on room air. PFTs are pulmonary function tests, which test how well your lungs are functioning. CPAP is used for sleep apnea and is a machine to help you breathe better while you sleep. AI is aortic insufficencey. RA is rheumatoid arthritiis. and DX is diagnosis. I hope this helps and I wish I could help more. Please don't leave the group. We all want to help. Caro 2/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Over the course of several months of reading posts, I have tried to decipher the many acronyms that are used, but not all of them. For some time I couldn't understand why so many of you had an SOB in your family, but eventually (several months), being of quick mind, I decided it meant Shortness of Breath. I hope I'm correct. Following are some I am too dull to figure out: 1. VATS & VATS surgery 2. HRCTS 3. NSIP vs IPF 4. SATS ( I think statistics but usually I see that as STATS, like in baseball) 5. PFTS 6. RLS 7. Inogen POC 8. CPAP 9. AI 10. RA 11. DX A final question: many of the posts I open have no message. I picked up that for some the message is limited to the subject line. Is the lack of a message a mistake in transmitting or am I missing something associated with opening the post? Jack IPF 6/05 - USP 5/08 P PM (Polymositis) 12/98, UIP 8/00, o2 24/7 8/04, PH 3/06, ILL yo 59 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.