Guest guest Posted December 12, 2001 Report Share Posted December 12, 2001 Tarah, Your concerns are quite natural and, yes, there are others (teenagers) who are going through what you are going through. A couple of them post here regularly. The problems with your eyes is called nystagmus and is a common problem (unfortunately) with chiari. Keep us posted on your progress and don't hesitate to ask any questions you might have. There are some great people on here Luv & irises, from MT Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2002 Report Share Posted February 3, 2002 I had my surgery july 31 2001 and I tried to go back to work in dec only working 4 hour day's that did not last long I was back off work buy jan 15, I have bad pain in my right side of my body and seems like it is going further down. My doctor sent me to another doctor for a second opinion and he pretty much said the same thing that they don't know why I swell and they think that damage is in my spinal column (from this cyst) pretty much said that I will not be able to work and will have to take physical thearpy, and meds. I don't know how I feel about this. My right side is starting to get stiff. Is this the best that they can do with people like me at 26 can this happen. I am stil getting used to being different but not sure if I like it. I did not know if there were other alternatives. I don't like that they cannot fix it. Maybe I am being harsh, I don't know. I have alot of things that bother me and with not knowing much about chiari except that I have it. Just wnt some input. Thanks I think I need to vent. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 --- sunshinexx110 wrote: > I had my surgery july 31 2001 and I tried to go back > to work in dec > only working 4 hour day's that did not last long I > was back off work > buy jan 15, I have bad pain in my right side of my > body and seems > like it is going further down. > > My doctor sent me to another doctor for a second > opinion and he > pretty much said the same thing that they don't know > why I swell and > they think that damage is in my spinal column (from > this cyst) pretty > much said that I will not be able to work and will > have to take > physical thearpy, and meds. I don't know how I feel > about this. My > right side is starting to get stiff. > > Is this the best that they can do with people like > me at 26 can this > happen. Hi! I was told the same thing.Damage from the syrinx.That's not the answer I want to hear.I continue to progress.I also started to get sick after going back to work. I am going to the chiari center in a few weeks.Not only am I physically challenged but my mind is not what it was.I feel like I have alzheimers or something. I forget everything.Can't talk right and have a terrible time spelling.I used to win every spelling bee. My legs and feet burn.I'm having problems on my left side which I never had before.So if it's permanent damage what's going on thaty is causing all these new symptoms?I intend to find out.I will keep you in my prayers. Gentle hugs, Lee ===== " Make yourself a blessing to someone.Your kind smile or pat on the back might pull someone back from the edge. " Carmellia Elliot http://www.restministries.org chronicpaindevotionals __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 4, 2002 Report Share Posted February 4, 2002 You are so right. Acceptance I think is the hardest part of chiari especially when you have been like you and me who ddi things for ourselves if at all possible. I used to drive my hubby's furniture movers truck. It can hold a whole 2 story house so that gives you some idea of the size of it. I still hold my heavy haulage licence but when it is time to renew my licnce I don't think that the Dept. of Transport is going to give it to me. I hav't driven the truck for a few years now and the car very rarely but I don't want to give u my licence as it seems to be the last bit of independence. Soryy to rant on. warm regards Ann in Brisbane Australia Cheryl Sousa wrote: > Good morning, " sunshine " , > > For all it's worth, I understand where you are coming from. I'm 27, and > have gone from a normal life, to one of daily pain, precaution, and anxiety. > I was strong, healthy, full of life. Now, I could not work if I wanted to. > I cannot lift a milk jug to pour it for the kids without cringing. We're > getting ready to buy a house, and the most energy I have to put into it is > circling ads in the paper. After that, I am ready for a nap. > I understand your frustration dealing with doctors. It is not easy to > be told that life as you once knew it is over, without your consent, and now > you'll have to change. Personally, I am a very independant minded person. > If something needs to be done, I do it. And If I cannot do it, then I > research about it until I know enough about it so I can fix/do it. And only > then after do I give up. Take the milk situation. Instead of asking my > husband to do it, I'll do it. And if I cannot bear it, I start buying half > gallons.. my monetary stinginess does NOT overwhelm my pride. But, when > all is said and done, I KNOW I have to change. I don't like it. Not one > bit. But, not accepting it drove me into depression and daily if not twice > daily anxiety attacks.. I'm on a daily antidepressant, and I have other > meds when I have an attack.. I HATE taking meds. But again, it's one of > those changes that I forced myself into .. " ok, Cheryl, I know you're gonna > hate swallowing this pill. But if you do, not only will it make it easier > to accept the things that are happening to you, it might make you want to > see the sun come up tomorrow. It might give you that drive to keep going > despite all the sh-t that's on your plate. " And it worked. I am not saying > you should be on Celexa or anything.. Acceptance is the hardest part. But > once I accepted what was happening, and realized that I was in control.. > not the doctor, not the insurance company, me!.. well, it changed my whole > outlook. > I hope my story helps. You call yourself sunshine. That star can radiate > once again.. if only you let it. > > Peace, this beautiful morning. > > Cheryl Sousa > acm 1 20 mm, syr. c5-t1, and I am calling right now to get that surgery > date. > Questions > > > I had my surgery july 31 2001 and I tried to go back to work in dec > > only working 4 hour day's that did not last long I was back off work > > buy jan 15, I have bad pain in my right side of my body and seems > > like it is going further down. > > > > My doctor sent me to another doctor for a second opinion and he > > pretty much said the same thing that they don't know why I swell and > > they think that damage is in my spinal column (from this cyst) pretty > > much said that I will not be able to work and will have to take > > physical thearpy, and meds. I don't know how I feel about this. My > > right side is starting to get stiff. > > > > Is this the best that they can do with people like me at 26 can this > > happen. I am stil getting used to being different but not sure if I > > like it. I did not know if there were other alternatives. I don't > > like that they cannot fix it. Maybe I am being harsh, I don't > > know. I have alot of things that bother me and with not knowing much > > about chiari except that I have it. Just wnt some input. Thanks I > > think I need to vent. > > > > > > Help section: http://www.yahoogroups.com/help/ > > > > NOTE: NCC refers to posts with No Chiari Content > > > > To Unsubscribe Yourself: chiari-unsubscribeYahoogroups > > > > WACMA Home: www.pressenter.com/~wacma > > > > WACMA List: www.eGroups.com/group/chiari > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Hi Bruce: I did go to the local hospital and had the cardiogram, x-ray and various blood tests. There is no sign of infection and the cardiogram was fine. I don't think that there is any immediate danger but it is worrisome becuse of the sudden and drastic change. Diane IPF June 07New Brunswick, Canada Re: Questions DianeSure wish you could get to a doctor sooner as that could be so manythings. I don't know when your last echocardiogram was but if not veryrecent you should definitely have one. It might give an indication ofthe start of PH and best to catch it early. The only way to be certainis 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 obvioussigns that point directly to it. But, with any sudden drop best to checkfor it, pneumonia, and other complications.>> Joyce:> I was wondering if you would mind answering a couple of questions forme regarding PH? Before you started any medication and before you sawsomeone for a diagnosis, did you have a lot of pressure in the middle ofyour chest? Were some days worse than others? Today, I cannot walk 10feet on 6 liters without my sats dropping to 83 and heart rate going to130. Did you experience this as well? My doctor got in touch with thepulmo yesterday and I have an appointment with him next Thursday. I suream 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 toYahoo! 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. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Diane Well, i'm glad at least you're seeing your pulmo next week. How do you feel otherwise? > > > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 I am very SOB so doing a lot of reading. I think the less exertion right now the better. I guess this too shall pass. Diane IPF June 07New Brunswick, Canada Re: Questions DianeWell, i'm glad at least you're seeing your pulmo next week. How do youfeel otherwise?> >> > Joyce:> > I was wondering if you would mind answering a couple of questionsfor> 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 middleof> 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 goingto> 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. Isure> 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 toYahoo! Answers and share what you know at http://ca.answers. yahoo.com> All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Diane, Yes, I had chest pain. My oxygen saturation would drop upon exertion and I would have gripping chest pain. It would be worse if the plummet went into the 60's or below. And, yes my heart rate soared. I actually asked for an echocardiagram because I read that these were the signs of Pulmonary Hypertension. My CT scan showed enlargement of the right coronary artery and the echo showed the same. Then, they did a cath which confirmed it. My doc gave me nitro glycerin for the chest pain. Both long acting and fast acting. It helped a lot. But, since I have been on Flolan the chest pain is gone. Thank God! It is so good that you are alert and taking your oximeter readings. I had to argue with my pulmonologist to even get one. I will never understand that. Without it, how do you know when to increase 02? Let me know what you find out from the doc. God's blessings, Diane. 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2008 Report Share Posted May 8, 2008 Thanks, Joyce, for the info. I will let you know what happens next week. Diane IPF June 07New Brunswick, Canada Re: Questions Diane, Yes, I had chest pain. My oxygen saturation would drop upon exertion and I would have gripping chest pain. It would be worse if the plummet went into the 60's or below. And, yes my heart rate soared. I actually asked for an echocardiagram because I read that these were the signs of Pulmonary Hypertension. My CT scan showed enlargement of the right coronary artery and the echo showed the same. Then, they did a cath which confirmed it. My doc gave me nitro glycerin for the chest pain. Both long acting and fast acting. It helped a lot. But, since I have been on Flolan the chest pain is gone. Thank God! It is so good that you are alert and taking your oximeter readings. I had to argue with my pulmonologist to even get one. I will never understand that. Without it, how do you know when to increase 02? Let me know what you find out from the doc. God's blessings, Diane. 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> All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2008 Report Share Posted May 9, 2008 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/> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2008 Report Share Posted May 10, 2008 Hi Diane, Butting in for a point that I didn't know about our concentrators. I have recently had to increase to 6 to 8L.Walking and the PT told me when you need 8 on a machine DO NOT GO OVER THE LINE. you will only get air not 02.Before I got this high flow one, we would turn it up as high as we could and couldn't understand why I needed more. Now the only problem is having enough bottles with me. The high flow constant flow uses the tanks up VERY quickly.So we are into more experimenting. My low point is 91, 92, my body begins to scream. So be very careful that you are getting enough. Take Care of you. God Bless. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." 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: QuestionsDiane,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 10, 2008 Report Share Posted May 10, 2008 Boy that was clear as mud.. if your concentrator only goes to 8L don't go over the red line. It is best to go to the bottom of the 8 line. Now thats better I think. Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up." Hi Diane, Butting in for a point that I didn't know about our concentrators. I have recently had to increase to 6 to 8L.Walking and the PT told me when you need 8 on a machine DO NOT GO OVER THE LINE. you will only get air not 02.Before I got this high flow one, we would turn it up as high as we could and couldn't understand why I needed more. Now the only problem is having enough bottles with me. The high flow constant flow uses the tanks up VERY quickly.So we are into more experimenting. My low point is 91, 92, my body begins to scream. So be very careful that you are getting enough. Take Care of you. God Bless.Love and Prayers, PeggyIPF  2004,  Florida"Worry looks around, Sorry looks back,  Faith looks up."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: QuestionsDiane,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 athttp://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 10, 2008 Report Share Posted May 10, 2008 Diane/Peggy At those levels I even more strongly recommend a liter meter. They are inexpensive and a great way to keep an eye on the amount of oxygen really flowing. Also, your concentrator should have a warning sensor and alarm if the percent of oxygen gets below a certain point so the flow of just air and not oxygen should set that off. If it doesn't have the sensor I'd ask for one with. Last don't settle for any level of concentrator that isn't adequate. If you need 10, get 10. If you need more, get it. Did you know that just like liquid oxygen reservoirs it is possible even to connect two concentrators to even increase the flow more? However, up to ten liters shouldn't require anything more than a 10 lpm concentrator. > > > > > > > > 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 10, 2008 Report Share Posted May 10, 2008 Thanks, Peggy, for the heads up. 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 athttp://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. All new Yahoo! Mail - Get a sneak peak at messages with a handy reading pane. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2008 Report Share Posted May 11, 2008 Bruce/Joyce/Peggy: Thank you all for your input. I do have a liquid tank but, up until now, have only used it to fill the small portable for quick trips around town. I also have the concentrator, E tanks and M6 tanks. After, I see the doctor on Thursday and get his feedback, I will contact the O2 supplier and get their suggestions. They have been excellent in supplying me with spares, backups and "just in case" equipment. I think by Thursday, I will have coughed up both lungs. I hope the ladies had a pleasant Mother's Day. Mine was super but I am glad it is over. Diane IPF June 07New Brunswick, Canada Re: Questions Diane/PeggyAt those levels I even more strongly recommend a liter meter. They areinexpensive and a great way to keep an eye on the amount of oxygenreally flowing. Also, your concentrator should have a warning sensor andalarm if the percent of oxygen gets below a certain point so the flow ofjust air and not oxygen should set that off. If it doesn't have thesensor I'd ask for one with. Last don't settle for any level ofconcentrator that isn't adequate. If you need 10, get 10. If you needmore, get it. Did you know that just like liquid oxygen reservoirs it ispossible even to connect two concentrators to even increase the flowmore? However, up to ten liters shouldn't require anything more than a10 lpm concentrator.> > > >> > > > Joyce:> > > > I was wondering if you would mind answering a couple ofquestions> > 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. Goto> > 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.> Be smarter than spam. See how smart SpamGuard is at giving junk email the boot with the All-new Yahoo! Mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 Jack, Here is a link that defines many medical abbreviations that we use and that the medical community also uses. Hope this helps. Joyce. http://www.copd-international.com/library/Medabbreviations.htm >> 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 --- In Breathe-Support , Irene wroteIrene > Irene, Your post caught my eye because of the methotrexate. I was given this medication in April of 06 for my RA. Then in May I was tken off it because I came down with pneumonia. I was placex back on the mkethotrexate in August, had a PFT in October and nmy pulmonologist took me off it because my PFT results came back alot worse thn before. Long story short I was dx'd in April of 2007 with PF. Shands has said there are many things that cause PF......but it makes one wonder. Take care and have an easy breathing day. Kathy Fl PF 4/07 > 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 26, 2008 Report Share Posted May 26, 2008 VATS = Video Assisted Thorasic Surgery …at least that’s what I remember being told when I had mine for my lung biopsy. Steve…aka Knip IPF 12/07 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 http://noairtogo.tripod.com/gloss.htm#AAlist of acronyms PJack Marshall wrote: 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...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 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...
Guest guest Posted May 26, 2008 Report Share Posted May 26, 2008 1. VATS = Video Assisted Thoracic Surgery 2. HRCTS = High Resolution Computed Tomography Scan (or CAT scan) 3. NSIP vs. IPF = Non-Specific Interstitial Pneumonia vs. Idiopathic Pulmonary Fibrosis 4. SATS = oxygen saturation level 5. PFTs = Pulmonary Function Test(s) 6. RLS = Restless Leg Syndrome 7. Inogen POC = Inogen is a brand name. POC = portable oxygen concentrator. 8. CPAP = Continuous Positive Airway Pressure 9. AI = hmmmm...i don't know? auto-immune? 10. RA = Rheumatoid Arthritis 11. DX = diagnosis I believe these are the right answers, but I wouldn't swear to it. These are just the things I have learned since diagnosis. God Bless, Tina IPF 04/07 PH 11/07 Ohio > 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...
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