Guest guest Posted September 26, 2002 Report Share Posted September 26, 2002 J, I'd ask for FT4, FT3, and if you've not had them, TSI and TRab tests--I think those are the antibodies we need tested, but I'm not an expert, just another patient like you. Ft4 is what I find most helpful, and the TSI every 6 months to see whether I'm heading towards remission. FT3 is helpful to make sure things aren't out of whack, but in my experience, if it's in line with the ft4 (this is ALL assuming you're on ATD's or in remission, and not post-RAI or surgery), you don't need it too often. Good luck tomorrow! Terry > > Reply-To: graves_support > Date: Fri, 27 Sep 2002 02:04:59 -0000 > To: graves_support > Subject: Questions > > Hi Everyone!! > Im sorry I havent posted for awhile ~ Ive been so busy. > I have my appt with my new doctor tomorrow and I just wanted to ask > you guys what you think I should ask him about or what bloodwork I > should have him run. > Remember my endo has only ran the tsh test for the past 15 years.... > Thank you so much for any advice you can offer! > J > > > > ------------------------------------- > The Graves' list is intended for informational purposes only and is not > intended to replace expert medical care. > Please consult your doctor before changing or trying new treatments. > ---------------------------------------- > DISCLAIMER > > Advertisments placed on this yahoo groups list do not have the endorsement of > the listowner. I have no input as to what ads are attached to emails. > ------------------------------------------------------------------------------ > -------- > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Bev, My heart just breaks for you. First and most important... You are not going to die tomorrow..You can still live a full life--just a little different. For your boat. take plenty of tanks, long hoses.As long as you can secure the tanks I don't see why you couldn't do anything you want. The University would be THE place you want to go. IPF is a disease that needs a specialist inPulmonary Fibrosis. There are many (over 200) different fibrosis' . There isn't a treatment for IPF. Some give prednisone and or imuran but they haven't been proven to help with this monster. The side effects were not worth it for me. I wish I had known then what I know now. I don't think you should worry about funerals right now. You have a lot of living to do. GO GIRL, LIVE.Here on this board we try to help each other with tips and encouragement. Anything you question ASK.There are no dumb questions. Someone will always be here to help.I also have IPF. I was diagnosed almost five years ago. June of 2004. Don't feel your alone in this fight.God Bless you with strength and peace. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." I just joined this group a couple of days ago. I have had to go todaily digest because I also belong to a fibromyalgia support group andthe amount of posts is overwhelming. I looked at some of the picturesto see if there was anyone near me. I live in Idaho near theWashington border and I didn't find anyone. I did find Walt from OakHarbor, Wa. Walt, I do have some questions for you. I was justdiagnosed with IPF a few weeks ago so all of this full time oxygen andhow to get the most out of life with it is new to me. One of the mainthings that I do, or did, whichever the case may be is spend from afew days to a couple of weeks each month on a sailboat that is mooredat the Oak Harbor Marina. I haven't been there since the oxygen. Iknow that I would be alright at the dock hooked up to shore power butis there any way that I can go out on the water for extended periods?I have a granddaughter on Island and I have been going to visither by boat. I would like to at least stay out for a week. Do you haveany ideas? I have to sell my house and move back to the coast where my childrenand grandchildren are. I also found the IPF center at the UniversityHospital. My doctor here would like me to stay here so he can treatme. It will be 3 months before he can tell if the treatment isworking. Staying here is just not an option for me. I have to be backaround my children now and I need the money from the house to takecare of my funeral arrangements. Can any of you tell me about thesecenters and what they do? Do they treat patients there or are theyjust for study of this awful disease? Sorry this is so long. Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 > > Bev, My heart just breaks for you. First and most important... You > are not going to die tomorrow.. > You can still live a full life--just a little different. For your > boat. take plenty of tanks, long hoses. > As long as you can secure the tanks I don't see why you couldn't do > anything you want. > > The University would be THE place you want to go. IPF is a disease > that needs a specialist in > Pulmonary Fibrosis. There are many (over 200) different fibrosis' . > There isn't a treatment for IPF. Some give prednisone and or imuran > but they haven't been proven to help with this monster. The side > effects were not worth it for me. I wish I had known then what I know > now. > > I don't think you should worry about funerals right now. You have a > lot of living to do. GO GIRL, LIVE. > Here on this board we try to help each other with tips and > encouragement. Anything you question ASK. > There are no dumb questions. Someone will always be here to help. > > I also have IPF. I was diagnosed almost five years ago. June of 2004. > Don't feel your alone in this fight. > God Bless you with strength and peace. > > Love & Prayers, Peggy > Florida, IPF/UIP 2004 > > " I believe that friends are quiet angels who lift us to our feet, > when our wings have trouble remembering how to fly. " > > Thank you. Your post does make me feel better. Where I live the doctors are bad. I am going to a pulmonary specialist in Spokane,wa. but the local doctors here failed to diagnose this with an earlier chest x-ray When I got bad enough to be put in the local hospital they said that it was curable and they thought that they had me cured. Shows how much they know. Last year one of them failed to diagnose a perforated appendix. I was within two days of dying when I went to another doctor and was sent to Spokane for emergency surgery. So my lungs are very bad now. I still intend to live as much as I can for as long as I can. What about the portable concentrators? My doctor said that I should ask my oxygen provider about an Inogen machine. I was told that I can't have one of those for home use. Medicare won't pay for them. He said that they cost $6,000. They are 4 thousand on the internet. I thought that when I sell my house I might be able to buy one. I'm also curious about disability. I don't know what the requirements are for that but I thought that I might get more help with medical expenses at least. I am just full of questions. Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Bev A University Center with an ILD center, such as the 16 Centers of Excellence can deal with so many of your questions and help you understand. As to treatments, I didn't see if you posted how you were diagnosed and what form of PF they believe as well as any other conditions. Those are all important as to what treatment may accomplish. You mention time on your boat with oxygen. Liquid would serve you very well there if you didn't want to draw on the generator. As to Inogen, it can't serve your needs asleep anyway as it hasn't got a continuous flow. It would not be a good choice for your only equipment. There are regular concentrators that only weigh 30 pounds or so but most providers don't routinely provide. There are many choices of portable oxygen. When one is diagnosed they try to figure everything out at once, including their whole life. You have to take it a little slower and think " what next " and to me " next " is getting to a pulmonologist at a teaching hospital who can really guide you with information and diagnosis. Until you have that, the rest is based on such shaky information that you could get many misperceptions. > > > > Bev, My heart just breaks for you. First and most important... You > > are not going to die tomorrow.. > > You can still live a full life--just a little different. For your > > boat. take plenty of tanks, long hoses. > > As long as you can secure the tanks I don't see why you couldn't do > > anything you want. > > > > The University would be THE place you want to go. IPF is a disease > > that needs a specialist in > > Pulmonary Fibrosis. There are many (over 200) different fibrosis' . > > There isn't a treatment for IPF. Some give prednisone and or imuran > > but they haven't been proven to help with this monster. The side > > effects were not worth it for me. I wish I had known then what I know > > now. > > > > I don't think you should worry about funerals right now. You have a > > lot of living to do. GO GIRL, LIVE. > > Here on this board we try to help each other with tips and > > encouragement. Anything you question ASK. > > There are no dumb questions. Someone will always be here to help. > > > > I also have IPF. I was diagnosed almost five years ago. June of 2004. > > Don't feel your alone in this fight. > > God Bless you with strength and peace. > > > > Love & Prayers, Peggy > > Florida, IPF/UIP 2004 > > > > " I believe that friends are quiet angels who lift us to our feet, > > when our wings have trouble remembering how to fly. " > > > > > > Thank you. Your post does make me feel better. Where I live the > doctors are bad. I am going to a pulmonary specialist in Spokane,wa. > but the local doctors here failed to diagnose this with an earlier > chest x-ray When I got bad enough to be put in the local hospital they > said that it was curable and they thought that they had me cured. > Shows how much they know. Last year one of them failed to diagnose a > perforated appendix. I was within two days of dying when I went to > another doctor and was sent to Spokane for emergency surgery. So my > lungs are very bad now. I still intend to live as much as I can for as > long as I can. What about the portable concentrators? My doctor said > that I should ask my oxygen provider about an Inogen machine. I was > told that I can't have one of those for home use. Medicare won't pay > for them. He said that they cost $6,000. They are 4 thousand on the > internet. I thought that when I sell my house I might be able to buy > one. I'm also curious about disability. I don't know what the > requirements are for that but I thought that I might get more help > with medical expenses at least. I am just full of questions. Bev > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 > > > Bev > > A University Center with an ILD center, such as the 16 Centers of > Excellence can deal with so many of your questions and help you > understand. As to treatments, I didn't see if you posted how you were > diagnosed and what form of PF they believe as well as any other > conditions. Those are all important as to what treatment may accomplish. > You mention time on your boat with oxygen. Liquid would serve you very > well there if you didn't want to draw on the generator. > > As to Inogen, it can't serve your needs asleep anyway as it hasn't got a > continuous flow. It would not be a good choice for your only equipment. > There are regular concentrators that only weigh 30 pounds or so but most > providers don't routinely provide. There are many choices of portable > oxygen. > > When one is diagnosed they try to figure everything out at once, > including their whole life. You have to take it a little slower and > think " what next " and to me " next " is getting to a pulmonologist at a > teaching hospital who can really guide you with information and > diagnosis. Until you have that, the rest is based on such shaky > information that you could get many misperceptions. > > The center that I am talking about is one of the 16. However I don't live near it yet. I lived on the Washington coast for 40 years. My children and grandchildren are still there. I should never have moved here but I did and that is another story. I live alone and I can't keep my house up. I need to sell and move to an apartment near my children. They are all in the Seattle area though not in Seattle itself. If I can get my house sold I will move back there. I don't own the boat. The owner is a man that I have been dating for over 4 years. I am 70 years old so that limits some of my option too. I didn't know that the Inogen wouldn't be of any use for sleeping. I wasn't planning on having a portable as my only source of oxygen. I will stay on the Medicare provided stuff also. I would like to find a portable source that would allow me to spend nights in hotel rooms or other places where I can't take the large machine. I don't usually travel by air but something with DC that could be used in a car would be good too. I believe that my pulminologist here probably knows what he is doing but since I want to move near where the teaching hospital is anyhow once I get my house sold and get moved I will contact them. What's ILD? I'm getting a lot of abbreviations that are new to me. Bev Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 Bev Regardless of distance the center is worth at least an initial trip. They can do so much in a day to make you feel so much more comfortable. I drove from Dallas to Chicago for mine. As to oxygen overnight and in hotel rooms, there are many choices. Beth and I travel by car often. We use two very different means. She carries a concentrator and lots of gas canisters. I carry a liquid reservoir and my liquid portable. Either way, someone can always help you by carrying the equipment into the hotel. I've met some great employees that way who are more than willing. It's just not a problem. You can actually use a liquid reservoir in your car if you need. However, most would fill their portable from it and use that. With a concentrator you can make one work in a car but that requires an inverter for your auto. Did you mention how the diagnosis was made and what form of PF you have? > > > > > > Bev > > > > A University Center with an ILD center, such as the 16 Centers of > > Excellence can deal with so many of your questions and help you > > understand. As to treatments, I didn't see if you posted how you were > > diagnosed and what form of PF they believe as well as any other > > conditions. Those are all important as to what treatment may accomplish. > > You mention time on your boat with oxygen. Liquid would serve you very > > well there if you didn't want to draw on the generator. > > > > As to Inogen, it can't serve your needs asleep anyway as it hasn't got a > > continuous flow. It would not be a good choice for your only equipment. > > There are regular concentrators that only weigh 30 pounds or so but most > > providers don't routinely provide. There are many choices of portable > > oxygen. > > > > When one is diagnosed they try to figure everything out at once, > > including their whole life. You have to take it a little slower and > > think " what next " and to me " next " is getting to a pulmonologist at a > > teaching hospital who can really guide you with information and > > diagnosis. Until you have that, the rest is based on such shaky > > information that you could get many misperceptions. > > > > > The center that I am talking about is one of the 16. However I don't > live near it yet. I lived on the Washington coast for 40 years. My > children and grandchildren are still there. I should never have moved > here but I did and that is another story. I live alone and I can't > keep my house up. I need to sell and move to an apartment near my > children. They are all in the Seattle area though not in Seattle > itself. If I can get my house sold I will move back there. I don't own > the boat. The owner is a man that I have been dating for over 4 years. > I am 70 years old so that limits some of my option too. I didn't know > that the Inogen wouldn't be of any use for sleeping. I wasn't planning > on having a portable as my only source of oxygen. I will stay on the > Medicare provided stuff also. I would like to find a portable source > that would allow me to spend nights in hotel rooms or other places > where I can't take the large machine. I don't usually travel by air > but something with DC that could be used in a car would be good too. I > believe that my pulminologist here probably knows what he is doing but > since I want to move near where the teaching hospital is anyhow once I > get my house sold and get moved I will contact them. What's ILD? I'm > getting a lot of abbreviations that are new to me. Bev > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2009 Report Share Posted January 31, 2009 > > > Bev > > Regardless of distance the center is worth at least an initial trip. > They can do so much in a day to make you feel so much more comfortable. > I drove from Dallas to Chicago for mine. > > As to oxygen overnight and in hotel rooms, there are many choices. > Beth and I travel by car often. We use two very different means. She > carries a concentrator and lots of gas canisters. I carry a liquid > reservoir and my liquid portable. Either way, someone can always help > you by carrying the equipment into the hotel. I've met some great > employees that way who are more than willing. It's just not a problem. > > You can actually use a liquid reservoir in your car if you need. > However, most would fill their portable from it and use that. With a > concentrator you can make one work in a car but that requires an > inverter for your auto. > > Did you mention how the diagnosis was made and what form of PF you have? > > I went to my doctor one day to go over my meds with her. I told the nurse that I was having a little trouble breathing. She put an oximeter on my finger and I was at 74%. The doctor put me right in the hospital. The small local hospital. The large ones are in Spokane. They said that I had interstitial pneumonitis. They treated me and they thought that I was cured. A few weeks later I went to my cardiologist in Spokane for my yearly checkup. I was having some problems breathing there too so she checked and I was at 83%. He made me an appointment with the pulmonary specialist. Both have offices in the hospital. Then he put me on oxygen and sent me home to meet the oxygen provider before it got too late for him to set me up. That was the first shock. Next I saw the pulmonary doctor. He did breathing tests and ordered a bronch test. He was also going to have the nurse walk the hall with me to see how far I could walk. I took 3 steps to the nurse. She put an oximeter on my finger and said that was enough. It was already so low that they had me put my oxygen back on with no walking. He put me on prednisone and NAC. When he got the results of the biopsy he said that my lungs were really bad. He had ordered the test for pulmonary fibrosis. I apparently have IPF. It is the kind that they don't know the cause. He gave me an appointment for 3 months because he says that it will take that long to see if the treatment is working. I have been planning a trip to the coast since before Christmas. Between the horrible weather and doctor appointments I haven't been able to go. When I get there I will contact the IPF center and talk to them. I might be able to get someone to take me there for an appointment. I tried to sell my house last summer before I knew about this but the market was so bad that no one even looked. It is suppose to be better now but we still have several inches of snow and ice so I will probably have to wait until that is gone to put it up for sale again. Once I am moved I shouldn't have too much trouble getting to the center. I have been a patient in that hospital before for a stent. Thank you to anyone who is giving me advice. I really appreciate it. Bev Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 Bev welcome, sorry you need us, but glad you found us Pink Joyce IPF 3/06 Pennsylvania Donate Life Subject: Re: questionsTo: Breathe-Support Date: Sunday, February 1, 2009, 12:08 AM >> > Bev> > Regardless of distance the center is worth at least an initial trip.> They can do so much in a day to make you feel so much more comfortable.> I drove from Dallas to Chicago for mine.> > As to oxygen overnight and in hotel rooms, there are many choices. > Beth and I travel by car often. We use two very different means. She> carries a concentrator and lots of gas canisters. I carry a liquid> reservoir and my liquid portable. Either way, someone can always help> you by carrying the equipment into the hotel. I've met some great> employees that way who are more than willing. It's just not a problem.> > You can actually use a liquid reservoir in your car if you need.> However, most would fill their portable from it and use that. With a> concentrator you can make one work in a car but that requires an> inverter for your auto.> > Did you mention how the diagnosis was made and what form of PF you have?> > I went to my doctor one day to go over my meds with her. I told thenurse that I was having a little trouble breathing. She put anoximeter on my finger and I was at 74%. The doctor put me right in thehospital. The small local hospital. The large ones are in Spokane.They said that I had interstitial pneumonitis. They treated me andthey thought that I was cured. A few weeks later I went to mycardiologist in Spokane for my yearly checkup. I was having someproblems breathing there too so she checked and I was at 83%. He mademe an appointment with the pulmonary specialist. Both have offices inthe hospital. Then he put me on oxygen and sent me home to meet theoxygen provider before it got too late for him to set me up. That wasthe first shock. Next I saw the pulmonary doctor. He did breathingtests and ordered a bronch test. He was also going to have the nursewalk the hall with me to see how far I could walk. I took 3 steps tothe nurse. She put an oximeter on my finger and said that was enough.It was already so low that they had me put my oxygen back on with nowalking. He put me on prednisone and NAC. When he got the results ofthe biopsy he said that my lungs were really bad. He had ordered thetest for pulmonary fibrosis. I apparently have IPF. It is the kindthat they don't know the cause. He gave me an appointment for 3 monthsbecause he says that it will take that long to see if the treatment isworking. I have been planning a trip to the coast since beforeChristmas. Between the horrible weather and doctor appointments Ihaven't been able to go. When I get there I will contact the IPFcenter and talk to them. I might be able to get someone to take methere for an appointment. I tried to sell my house last summer beforeI knew about this but the market was so bad that no one even looked.It is suppose to be better now but we still have several inches ofsnow and ice so I will probably have to wait until that is gone to putit up for sale again. Once I am moved I shouldn't have too muchtrouble getting to the center. I have been a patient in that hospitalbefore for a stent. Thank you to anyone who is giving me advice. Ireally appreciate it. Bev Joy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 And I'm right in the middle. I think its right for some and wrong for others. I believe in informed decisions. I also think it varies based on how the diagnosis is made and the specifics of the diagnosis. Main thing is that as in many areas there is no right answer, just a right process to go through in making your choices. > > > > Bev, My heart just breaks for you. First and most important... You > > are not going to die tomorrow.. > > You can still live a full life--just a little different. For your > > boat. take plenty of tanks, long hoses. > > As long as you can secure the tanks I don't see why you couldn't do > > anything you want. > > > > The University would be THE place you want to go. IPF is a disease > > that needs a specialist in > > Pulmonary Fibrosis. There are many (over 200) different fibrosis' . > > There isn't a treatment for IPF. Some give prednisone and or imuran > > but they haven't been proven to help with this monster. The side > > effects were not worth it for me. I wish I had known then what I know > > now. > > > > I don't think you should worry about funerals right now. You have a > > lot of living to do. GO GIRL, LIVE. > > Here on this board we try to help each other with tips and > > encouragement. Anything you question ASK. > > There are no dumb questions. Someone will always be here to help. > > > > I also have IPF. I was diagnosed almost five years ago. June of 2004. > > Don't feel your alone in this fight. > > God Bless you with strength and peace. > > > > Love & Prayers, Peggy > > Florida, IPF/UIP 2004 > > > > " I believe that friends are quiet angels who lift us to our feet, > > when our wings have trouble remembering how to fly. " > > > > > > Thank you. Your post does make me feel better. Where I live the > doctors are bad. I am going to a pulmonary specialist in Spokane,wa. > but the local doctors here failed to diagnose this with an earlier > chest x-ray When I got bad enough to be put in the local hospital they > said that it was curable and they thought that they had me cured. > Shows how much they know. Last year one of them failed to diagnose a > perforated appendix. I was within two days of dying when I went to > another doctor and was sent to Spokane for emergency surgery. So my > lungs are very bad now. I still intend to live as much as I can for as > long as I can. What about the portable concentrators? My doctor said > that I should ask my oxygen provider about an Inogen machine. I was > told that I can't have one of those for home use. Medicare won't pay > for them. He said that they cost $6,000. They are 4 thousand on the > internet. I thought that when I sell my house I might be able to buy > one. I'm also curious about disability. I don't know what the > requirements are for that but I thought that I might get more help > with medical expenses at least. I am just full of questions. Bev > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 hi just realizing reading the posts today; it is going on 10 years when the IPF showed up on xray. the changes that have occurred even since the biopsy was done 7/06. the fatigue and at a point that is getting harder to keep struggling to do things. just packing the car with my bag let alone try and carry oxygen out. i say that laying in bed now as too tiring to think to push to go out. I chuckle thinking how strange things are and how others have no idea the struggles every day and every min. making decisions to do things and then to push where WE think we need to push harder.. Sorry, getting more and more frustrated and i am just ending an infection and an exacerbation of ipf.. this weather is not helping at all. i like everyone am just soooooo tired of not being able to just pick up and run.. and it takes tooo long to get ready. sorry, just have been having a rough time.. And then to hear I LOOK GOOD>> when i don't feel so good.. and too healthy for a lung. Am on the waiting list but still too well.. Decided that i need to start taking better care of myself and redirect where i push harder. Eating,spiritually, exercising, using my oxygen as i am suppose. And yes i am thankfulf for my meds but taking 30 a day is just too frustrating especially i am one that never took any meds... oh, well another journey to travel and who knows maybe the mountains wont be so steep, Patti ipf 7'06, NJ > > > > Bev, My heart just breaks for you. First and most important... You > > are not going to die tomorrow.. > > You can still live a full life--just a little different. For your > > boat. take plenty of tanks, long hoses. > > As long as you can secure the tanks I don't see why you couldn't do > > anything you want. > > > > The University would be THE place you want to go. IPF is a disease > > that needs a specialist in > > Pulmonary Fibrosis. There are many (over 200) different fibrosis' . > > There isn't a treatment for IPF. Some give prednisone and or imuran > > but they haven't been proven to help with this monster. The side > > effects were not worth it for me. I wish I had known then what I know > > now. > > > > I don't think you should worry about funerals right now. You have a > > lot of living to do. GO GIRL, LIVE. > > Here on this board we try to help each other with tips and > > encouragement. Anything you question ASK. > > There are no dumb questions. Someone will always be here to help. > > > > I also have IPF. I was diagnosed almost five years ago. June of 2004. > > Don't feel your alone in this fight. > > God Bless you with strength and peace. > > > > Love & Prayers, Peggy > > Florida, IPF/UIP 2004 > > > > " I believe that friends are quiet angels who lift us to our feet, > > when our wings have trouble remembering how to fly. " > > > > > > Thank you. Your post does make me feel better. Where I live the > doctors are bad. I am going to a pulmonary specialist in Spokane,wa. > but the local doctors here failed to diagnose this with an earlier > chest x-ray When I got bad enough to be put in the local hospital they > said that it was curable and they thought that they had me cured. > Shows how much they know. Last year one of them failed to diagnose a > perforated appendix. I was within two days of dying when I went to > another doctor and was sent to Spokane for emergency surgery. So my > lungs are very bad now. I still intend to live as much as I can for as > long as I can. What about the portable concentrators? My doctor said > that I should ask my oxygen provider about an Inogen machine. I was > told that I can't have one of those for home use. Medicare won't pay > for them. He said that they cost $6,000. They are 4 thousand on the > internet. I thought that when I sell my house I might be able to buy > one. I'm also curious about disability. I don't know what the > requirements are for that but I thought that I might get more help > with medical expenses at least. I am just full of questions. Bev > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2009 Report Share Posted February 1, 2009 -don't like the prednisone, have been on routine of 20 mg for over 2 yrs with periods of increase or solumedrol IV.. but it does seem to do its job and then some.. patti nj ipf7'6 -- In Breathe-Support , " Bruce Moreland " wrote: > > > And I'm right in the middle. I think its right for some and wrong for > others. I believe in informed decisions. I also think it varies based on > how the diagnosis is made and the specifics of the diagnosis. Main thing > is that as in many areas there is no right answer, just a right process > to go through in making your choices. > > > > > > > > > Bev, My heart just breaks for you. First and most important... You > > > are not going to die tomorrow.. > > > You can still live a full life--just a little different. For your > > > boat. take plenty of tanks, long hoses. > > > As long as you can secure the tanks I don't see why you couldn't do > > > anything you want. > > > > > > The University would be THE place you want to go. IPF is a disease > > > that needs a specialist in > > > Pulmonary Fibrosis. There are many (over 200) different fibrosis' . > > > There isn't a treatment for IPF. Some give prednisone and or imuran > > > but they haven't been proven to help with this monster. The side > > > effects were not worth it for me. I wish I had known then what I > know > > > now. > > > > > > I don't think you should worry about funerals right now. You have a > > > lot of living to do. GO GIRL, LIVE. > > > Here on this board we try to help each other with tips and > > > encouragement. Anything you question ASK. > > > There are no dumb questions. Someone will always be here to help. > > > > > > I also have IPF. I was diagnosed almost five years ago. June of > 2004. > > > Don't feel your alone in this fight. > > > God Bless you with strength and peace. > > > > > > Love & Prayers, Peggy > > > Florida, IPF/UIP 2004 > > > > > > " I believe that friends are quiet angels who lift us to our feet, > > > when our wings have trouble remembering how to fly. " > > > > > > > > > > Thank you. Your post does make me feel better. Where I live the > > doctors are bad. I am going to a pulmonary specialist in Spokane,wa. > > but the local doctors here failed to diagnose this with an earlier > > chest x-ray When I got bad enough to be put in the local hospital they > > said that it was curable and they thought that they had me cured. > > Shows how much they know. Last year one of them failed to diagnose a > > perforated appendix. I was within two days of dying when I went to > > another doctor and was sent to Spokane for emergency surgery. So my > > lungs are very bad now. I still intend to live as much as I can for as > > long as I can. What about the portable concentrators? My doctor said > > that I should ask my oxygen provider about an Inogen machine. I was > > told that I can't have one of those for home use. Medicare won't pay > > for them. He said that they cost $6,000. They are 4 thousand on the > > internet. I thought that when I sell my house I might be able to buy > > one. I'm also curious about disability. I don't know what the > > requirements are for that but I thought that I might get more help > > with medical expenses at least. I am just full of questions. Bev > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Patty, I can relate to your rough time. Last night my ex was here and I was telling him how hard it is for me to get things done. He just started off on his not having done some of the same things himself. He didn't get that I can't go fast enough to keep up and that I can't do some things without it hurting too much. Someone was saying recently that they sat on the floor to take the clothes out of the dryer. I used to enjoy doing so many things on the floor but I can no longer get up by myself. I am having a very bad time and trying so hard to take care of myself. I just don't know how anymore. I turned my oxygen up and was still breathless when I rolled over to get out of bed, before I was even sitting up or walking. My brain has been without oxygen for too long. I can't push the start button to go, I am just lost in this tangled mess. Maybe we will figure it out. Margaret To: Breathe-Support Sent: Sunday, February 1, 2009 10:01:25 AMSubject: Re: questions hijust realizing reading the posts today; it is going on 10 years when the IPF showed up on xray. the changes that have occurred even since the biopsy was done 7/06. the fatigue and at a point that is getting harder to keep struggling to do things. just packing the car with my bag let alone try and carry oxygen out. i say that laying in bed now as too tiring to think to push to go out. I chuckle thinking how strange things are and how others have no idea the struggles every day and every min. making decisions to do things and then to push where WE think we need to push harder.. Sorry, getting more and more frustrated and i am just ending an infection and an exacerbation of ipf.. this weather is not helping at all. i like everyone am just soooooo tired of not being able to just pick up and run.. and it takes tooo long to get ready. sorry, just have been having a rough time.. And then to hear I LOOK GOOD>> when i don't feel so good.. and too healthy for a lung. Am on the waiting list but still too well..Decided that i need to start taking better care of myself and redirect where i push harder. Eating,spiritually, exercising, using my oxygen as i am suppose. And yes i am thankfulf for my meds but taking 30 a day is just too frustrating especially i am one that never took any meds... oh, well another journey to travel and who knows maybe the mountains wont be so steep, Patti ipf 7'06, NJ> >> > Bev, My heart just breaks for you. First and most important... You > > are not going to die tomorrow..> > You can still live a full life--just a little different. For your > > boat. take plenty of tanks, long hoses.> > As long as you can secure the tanks I don't see why you couldn't do > > anything you want.> > > > The University would be THE place you want to go. IPF is a disease > > that needs a specialist in> > Pulmonary Fibrosis. There are many (over 200) different fibrosis' .> > There isn't a treatment for IPF. Some give prednisone and or imuran > > but they haven't been proven to help with this monster. The side > > effects were not worth it for me. I wish I had known then what I know > > now.> > > > I don't think you should worry about funerals right now. You have a > > lot of living to do. GO GIRL, LIVE.> > Here on this board we try to help each other with tips and > > encouragement. Anything you question ASK.> > There are no dumb questions. Someone will always be here to help.> > > > I also have IPF. I was diagnosed almost five years ago. June of 2004. > > Don't feel your alone in this fight.> > God Bless you with strength and peace.> > > > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> > > > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> > > > > > Thank you. Your post does make me feel better. Where I live the> doctors are bad. I am going to a pulmonary specialist in Spokane,wa.> but the local doctors here failed to diagnose this with an earlier> chest x-ray When I got bad enough to be put in the local hospital they> said that it was curable and they thought that they had me cured.> Shows how much they know. Last year one of them failed to diagnose a> perforated appendix. I was within two days of dying when I went to> another doctor and was sent to Spokane for emergency surgery. So my> lungs are very bad now. I still intend to live as much as I can for as> long as I can. What about the portable concentrators? My doctor said> that I should ask my oxygen provider about an Inogen machine. I was> told that I can't have one of those for home use. Medicare won't pay> for them. He said that they cost $6,000. They are 4 thousand on the> internet. I thought that when I sell my house I might be able to buy> one. I'm also curious about disability. I don't know what the> requirements are for that but I thought that I might get more help> with medical expenses at least. I am just full of questions. Bev> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 and Patti i think we will have to wait for the spring thaw to meet again maybe some of the guys from the central part of the state can meet us too Pink Joyce IPF 3/06 Pennsylvania Donate Life hijust realizing reading the posts today; it is going on 10 years when the IPF showed up on xray. the changes that have occurred even since the biopsy was done 7/06. the fatigue and at a point that is getting harder to keep struggling to do things. just packing the car with my bag let alone try and carry oxygen out. i say that laying in bed now as too tiring to think to push to go out. I chuckle thinking how strange things are and how others have no idea the struggles every day and every min. making decisions to do things and then to push where WE think we need to push harder.. Sorry, getting more and more frustrated and i am just ending an infection and an exacerbation of ipf.. this weather is not helping at all. i like everyone am just soooooo tired of not being able to just pick up and run.. and it takes tooo long to get ready. sorry, just have been having a rough time.. And then to hear I LOOK GOOD>> when i don't feel so good.. and too healthy for a lung. Am on the waiting list but still too well..Decided that i need to start taking better care of myself and redirect where i push harder. Eating,spiritually, exercising, using my oxygen as i am suppose. And yes i am thankfulf for my meds but taking 30 a day is just too frustrating especially i am one that never took any meds... oh, well another journey to travel and who knows maybe the mountains wont be so steep, Patti ipf 7'06, NJ> >> > Bev, My heart just breaks for you. First and most important... You > > are not going to die tomorrow..> > You can still live a full life--just a little different. For your > > boat. take plenty of tanks, long hoses.> > As long as you can secure the tanks I don't see why you couldn't do > > anything you want.> > > > The University would be THE place you want to go. IPF is a disease > > that needs a specialist in> > Pulmonary Fibrosis. There are many (over 200) different fibrosis' .> > There isn't a treatment for IPF. Some give prednisone and or imuran > > but they haven't been proven to help with this monster. The side > > effects were not worth it for me. I wish I had known then what I know > > now.> > > > I don't think you should worry about funerals right now. You have a > > lot of living to do. GO GIRL, LIVE.> > Here on this board we try to help each other with tips and > > encouragement. Anything you question ASK.> > There are no dumb questions. Someone will always be here to help.> > > > I also have IPF. I was diagnosed almost five years ago. June of 2004. > > Don't feel your alone in this fight.> > God Bless you with strength and peace.> > > > Love & Prayers, Peggy> > Florida, IPF/UIP 2004> > > > "I believe that friends are quiet angels who lift us to our feet,> > when our wings have trouble remembering how to fly."> > > > > > Thank you. Your post does make me feel better. Where I live the> doctors are bad. I am going to a pulmonary specialist in Spokane,wa.> but the local doctors here failed to diagnose this with an earlier> chest x-ray When I got bad enough to be put in the local hospital they> said that it was curable and they thought that they had me cured.> Shows how much they know. Last year one of them failed to diagnose a> perforated appendix. I was within two days of dying when I went to> another doctor and was sent to Spokane for emergency surgery. So my> lungs are very bad now. I still intend to live as much as I can for as> long as I can. What about the portable concentrators? My doctor said> that I should ask my oxygen provider about an Inogen machine. I was> told that I can't have one of those for home use. Medicare won't pay> for them. He said that they cost $6,000. They are 4 thousand on the> internet. I thought that when I sell my house I might be able to buy> one. I'm also curious about disability. I don't know what the> requirements are for that but I thought that I might get more help> with medical expenses at least. I am just full of questions. Bev> No virus found in this incoming message. Checked by AVG - http://www.avg. com Version: 8.0.233 / Virus Database: 270.10.16/1928 - Release Date: 1/31/2009 8:03 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 thank you so much for the encouragement. i do have alot to be thankful for but there are times it is sooo tiring. i play this game as i am sitting and all is well and lo and behold i stand and walk and realize i am not dreaming a bad dream this is reality.. i am always such a positive person and there is a reason for everything and what is that saying reason for the season.. ?? just so many other things changing in my body and not sure who to tell.. but this too shall pass.. sorry, my fingers just started typing and the thoughts just poured out.. thank you again, patti,nj > > > > > > > > Bev, My heart just breaks for you. First and most important... > > You > > > > are not going to die tomorrow.. > > > > You can still live a full life--just a little different. For > > your > > > > boat. take plenty of tanks, long hoses. > > > > As long as you can secure the tanks I don't see why you couldn't > > do > > > > anything you want. > > > > > > > > The University would be THE place you want to go. IPF is a > > disease > > > > that needs a specialist in > > > > Pulmonary Fibrosis. There are many (over 200) different > > fibrosis' . > > > > There isn't a treatment for IPF. Some give prednisone and or > > imuran > > > > but they haven't been proven to help with this monster. The side > > > > effects were not worth it for me. I wish I had known then what I > > know > > > > now. > > > > > > > > I don't think you should worry about funerals right now. You > > have a > > > > lot of living to do. GO GIRL, LIVE. > > > > Here on this board we try to help each other with tips and > > > > encouragement. Anything you question ASK. > > > > There are no dumb questions. Someone will always be here to help. > > > > > > > > I also have IPF. I was diagnosed almost five years ago. June of > > 2004. > > > > Don't feel your alone in this fight. > > > > God Bless you with strength and peace. > > > > > > > > Love & Prayers, Peggy > > > > Florida, IPF/UIP 2004 > > > > > > > > " I believe that friends are quiet angels who lift us to our feet, > > > > when our wings have trouble remembering how to fly. " > > > > > > > > > > > > > > Thank you. Your post does make me feel better. Where I live the > > > doctors are bad. I am going to a pulmonary specialist in > > Spokane,wa. > > > but the local doctors here failed to diagnose this with an earlier > > > chest x-ray When I got bad enough to be put in the local hospital > > they > > > said that it was curable and they thought that they had me cured. > > > Shows how much they know. Last year one of them failed to diagnose > > a > > > perforated appendix. I was within two days of dying when I went to > > > another doctor and was sent to Spokane for emergency surgery. So my > > > lungs are very bad now. I still intend to live as much as I can > > for as > > > long as I can. What about the portable concentrators? My doctor > > said > > > that I should ask my oxygen provider about an Inogen machine. I was > > > told that I can't have one of those for home use. Medicare won't > > pay > > > for them. He said that they cost $6,000. They are 4 thousand on the > > > internet. I thought that when I sell my house I might be able to > > buy > > > one. I'm also curious about disability. I don't know what the > > > requirements are for that but I thought that I might get more help > > > with medical expenses at least. I am just full of questions. Bev > > > > > > > > > ----------------------------------------------------------------- ------- > > > > > > No virus found in this incoming message. > > Checked by AVG - http://www.avg.com > > Version: 8.0.233 / Virus Database: 270.10.16/1928 - Release Date: 1/31/2009 8:03 PM > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Patti, Yes that was me you heard laughing at you....is your middle name stubborn? LOL And as for getting up off the floor....fuggeddaboudit as they say in NJ. It ain't happening at least not now. I'm hoping that my hip and shoulder weakness will get better eventually on the Imuran but for now? It ain't even easy anymore to stand up from my recliner. UGH!!!! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Monday, February 2, 2009 9:11:45 PMSubject: Re: questions margareti hear you, bending and goodness gracious to get down on the floor and get up without help.. oh, ya. I am woman (helen reddy) but...we will figure it out and yes i hear Beth chuckling at me.. yes i am getting ready to say "uncle". but this too shall pass.. so sorry,you are experiencing this. i know Joyce and were sharing different ways for me to save energy.. simple things we don't think of .. doing dishes/cooking sitting on a stool. the umbrella stroller to be able to walk the mall etc.. , i guess we need to explore how we can get off the ground when we finally get down there and need to get up.. ha ha.. have a great support group with lots of ideas. keep in touch. patti ipf 7'06,nj > > >> > > Bev, My heart just breaks for you. First and most important... > You > > > are not going to die tomorrow..> > > You can still live a full life--just a little different. For > your > > > boat. take plenty of tanks, long hoses.> > > As long as you can secure the tanks I don't see why you couldn't > do > > > anything you want.> > > > > > The University would be THE place you want to go. IPF is a > disease > > > that needs a specialist in> > > Pulmonary Fibrosis. There are many (over 200) different > fibrosis' .> > > There isn't a treatment for IPF. Some give prednisone and or > imuran > > > but they haven't been proven to help with this monster. The side > > > effects were not worth it for me. I wish I had known then what I > know > > > now.> > > > > > I don't think you should worry about funerals right now. You > have a > > > lot of living to do. GO GIRL, LIVE.> > > Here on this board we try to help each other with tips and > > > encouragement. Anything you question ASK.> > > There are no dumb questions. Someone will always be here to help.> > > > > > I also have IPF. I was diagnosed almost five years ago. June of > 2004. > > > Don't feel your alone in this fight.> > > God Bless you with strength and peace.> > > > > > Love & Prayers, Peggy> > > Florida, IPF/UIP 2004> > > > > > "I believe that friends are quiet angels who lift us to our feet,> > > when our wings have trouble remembering how to fly."> > > > > > > > > > Thank you. Your post does make me feel better. Where I live the> > doctors are bad. I am going to a pulmonary specialist in > Spokane,wa.> > but the local doctors here failed to diagnose this with an earlier> > chest x-ray When I got bad enough to be put in the local hospital > they> > said that it was curable and they thought that they had me cured.> > Shows how much they know. Last year one of them failed to diagnose > a> > perforated appendix. I was within two days of dying when I went to> > another doctor and was sent to Spokane for emergency surgery. So my> > lungs are very bad now. I still intend to live as much as I can > for as> > long as I can. What about the portable concentrators? My doctor > said> > that I should ask my oxygen provider about an Inogen machine. I was> > told that I can't have one of those for home use. Medicare won't > pay> > for them. He said that they cost $6,000. They are 4 thousand on the> > internet. I thought that when I sell my house I might be able to > buy> > one. I'm also curious about disability. I don't know what the> > requirements are for that but I thought that I might get more help> > with medical expenses at least. I am just full of questions. Bev> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Patty. I use a Rubbermaid two step stool to get up when I just absolutely have to get on the floor to sort stuff. One of my projects is caulking all of my counters where I have pulled the putty away pulling myself up. I also have one of the gardening benches that you can sit on or flip to kneel on. My knees can't take kneeling anymore but it is good to drag along as I scoot down my garden row. It is still tough getting whacked by my tank as I reach to weed. I fell in my hedge a foot from the door right after getting my tank. I was like a turtle on it's back flailing around on the spiky hedge in the deep snow with my purse over my arm and bags of groceries all tangled. I finally got on my knees, put one hand on the step and braced on the door casing to pull myself up. The other time it was on the other side of the sidewalk in the deep snow. I thought sure I was going to freeze to death three feet from my front door. I had to get on my feet before I could find my keys and cell phone. I really improved on the tracleer but it took a while for it to kick in. To: Breathe-Support Sent: Monday, February 2, 2009 5:11:45 PMSubject: Re: questions margareti hear you, bending and goodness gracious to get down on the floor and get up without help.. oh, ya. I am woman (helen reddy) but...we will figure it out and yes i hear Beth chuckling at me.. yes i am getting ready to say "uncle". but this too shall pass.. so sorry,you are experiencing this. i know Joyce and were sharing different ways for me to save energy.. simple things we don't think of .. doing dishes/cooking sitting on a stool. the umbrella stroller to be able to walk the mall etc.. , i guess we need to explore how we can get off the ground when we finally get down there and need to get up.. ha ha.. have a great support group with lots of ideas. keep in touch. patti ipf 7'06,nj > > >> > > Bev, My heart just breaks for you. First and most important... > You > > > are not going to die tomorrow..> > > You can still live a full life--just a little different. For > your > > > boat. take plenty of tanks, long hoses.> > > As long as you can secure the tanks I don't see why you couldn't > do > > > anything you want.> > > > > > The University would be THE place you want to go. IPF is a > disease > > > that needs a specialist in> > > Pulmonary Fibrosis. There are many (over 200) different > fibrosis' .> > > There isn't a treatment for IPF. Some give prednisone and or > imuran > > > but they haven't been proven to help with this monster. The side > > > effects were not worth it for me. I wish I had known then what I > know > > > now.> > > > > > I don't think you should worry about funerals right now. You > have a > > > lot of living to do. GO GIRL, LIVE.> > > Here on this board we try to help each other with tips and > > > encouragement. Anything you question ASK.> > > There are no dumb questions. Someone will always be here to help.> > > > > > I also have IPF. I was diagnosed almost five years ago. June of > 2004. > > > Don't feel your alone in this fight.> > > God Bless you with strength and peace.> > > > > > Love & Prayers, Peggy> > > Florida, IPF/UIP 2004> > > > > > "I believe that friends are quiet angels who lift us to our feet,> > > when our wings have trouble remembering how to fly."> > > > > > > > > > Thank you. Your post does make me feel better. Where I live the> > doctors are bad. I am going to a pulmonary specialist in > Spokane,wa.> > but the local doctors here failed to diagnose this with an earlier> > chest x-ray When I got bad enough to be put in the local hospital > they> > said that it was curable and they thought that they had me cured.> > Shows how much they know. Last year one of them failed to diagnose > a> > perforated appendix. I was within two days of dying when I went to> > another doctor and was sent to Spokane for emergency surgery. So my> > lungs are very bad now. I still intend to live as much as I can > for as> > long as I can. What about the portable concentrators? My doctor > said> > that I should ask my oxygen provider about an Inogen machine. I was> > told that I can't have one of those for home use. Medicare won't > pay> > for them. He said that they cost $6,000. They are 4 thousand on the> > internet. I thought that when I sell my house I might be able to > buy> > one. I'm also curious about disability. I don't know what the> > requirements are for that but I thought that I might get more help> > with medical expenses at least. I am just full of questions. Bev> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2009 Report Share Posted February 2, 2009 Margaret, I don't think this tip will help with snow on the ground but I used to put a 25' hose on my E tankthat is in a cart and work in my yard a little. My Motto "Where there is a will there IS a way" lolmy way is getting pretty hard to will these days. But I'll never give up to this monster. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Patty. I use a Rubbermaid two step stool to get up when I just absolutely have to get on the floor to sort stuff. One of my projects is caulking all of my counters where I have pulled the putty away pulling myself up. I also have one of the gardening benches that you can sit on or flip to kneel on. My knees can't take kneeling anymore but it is good to drag along as I scoot down my garden row. It is still tough getting whacked by my tank as I reach to weed. I fell in my hedge a foot from the door right after getting my tank. I was like a turtle on it's back flailing around on the spiky hedge in the deep snow with my purse over my arm and bags of groceries all tangled. I finally got on my knees, put one hand on the step and braced on the door casing to pull myself up. The other time it was on the other side of the sidewalk in the deep snow. I thought sure I was going to freeze to death three feet from my front door. I had to get on my feet before I could find my keys and cell phone. I really improved on the tracleer but it took a while for it to kick in. From: friend.patti <friend.patti (AT) yahoo (DOT) com>To: Breathe-Support Sent: Monday, February 2, 2009 5:11:45 PMSubject: Re: questionsmargareti hear you, bending and goodness gracious to get down on the floor and get up without help.. oh, ya. I am woman (helen reddy) but...we will figure it out and yes i hear Beth chuckling at me.. yes i am getting ready to say "uncle". but this too shall pass.. so sorry,you are experiencing this. i know Joyce and were sharing different ways for me to save energy.. simple things we don't think of .. doing dishes/cooking sitting on a stool. the umbrella strollerto be able to walk the mall etc.. , i guess we need to explore how we can get off the ground when we finally get down there and need to get up.. ha ha.. have a great support group with lots of ideas. keepin touch. patti ipf 7'06,nj > > >> > > Bev, My heart just breaks for you. First and most important... > You > > > are not going to die tomorrow..> > > You can still live a full life--just a little different. For > your > > > boat. take plenty of tanks, long hoses.> > > As long as you can secure the tanks I don't see why you couldn't > do > > > anything you want.> > > > > > The University would be THE place you want to go. IPF is a> disease > > > that needs a specialist in> > > Pulmonary Fibrosis. There are many (over 200) different > fibrosis' .> > > There isn't a treatment for IPF. Some give prednisone and or > imuran > > > but they haven't been proven to help with this monster. Theside > > > effects were not worth it for me. I wish I had known then what I > know > > > now.> > > > > > I don't think you should worry about funerals right now. You > have a > > > lot of living to do. GO GIRL, LIVE.> > > Here on this board we try to help each other with tips and > > > encouragement. Anything you question ASK.> > > There are no dumb questions. Someone will always be here to help.> > > > > > I also have IPF. I was diagnosed almost five years ago. Juneof > 2004. > > > Don't feel your alone in this fight.> > > God Bless you with strength and peace.> > > > > > Love & Prayers, Peggy> > > Florida, IPF/UIP 2004> > > > > > "I believe that friends are quiet angels who lift us to our feet,> > > when our wings have trouble remembering how to fly."> > > > > > > > > > Thank you. Your post does make me feel better. Where I live the> > doctors are bad. I am going to a pulmonary specialist in > Spokane,wa.> > but the local doctors here failed to diagnose this with an earlier> > chest x-ray When I got bad enough to be put in the local hospital > they> > said that it was curable and they thought that they had me cured.> > Shows how much they know. Last year one of them failed to diagnose > a> > perforated appendix. I was within two days of dying when I went to> > another doctor and was sent to Spokane for emergency surgery. So my> > lungs are very bad now. I still intend to live as much as I can > for as> > long as I can. What about the portable concentrators? My doctor > said> > that I should ask my oxygen provider about an Inogen machine. I was> > told that I can't have one of those for home use. Medicare won't > pay> > for them. He said that they cost $6,000. They are 4 thousand on the> > internet. I thought that when I sell my house I might be able to > buy> > one. I'm also curious about disability. I don't know what the> > requirements are for that but I thought that I might get morehelp> > with medical expenses at least. I am just full of questions. Bev> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Thanks Peggy, With my 50ft plus a moisture catcher? and a 7 or 14 foot cannula, I can reach the three flower beds out the front door, taking rest in a lawn chair. I have a set of 3ft garden tools that help me not bend so much while sitting on my little garden bench. I can also go out to my potting bench on the back deck. I have put my Marathon on the ground and scooted it along with me. It is such a pain to move everything along with me every few feet. I can move the compressor out on the side walk and deck in order to reach my north bed, raised veggie beds, raspberries and greenhouse...oh how I wish our spring would get here; it comes about the middle of May or sometimes earlier. We can't walk on the grass until the water from winter break up has dried up. I always start some things from seeds and begonias, dahlias and roses inside before we can plant out on Memorial day. We can plant red potatoes as soon as the ground is workable and have them for the 4th of July...three summers ago I didn't think I would make it to summer. I have always had some kind of flowers in summer even if it was a pot full of daisies on a deck. I do miss many of my Florida, Smoky mountain and California flowers. Margaret To: Breathe-Support Sent: Monday, February 2, 2009 7:45:13 PMSubject: Re: Re: questionsMargaret, I don't think this tip will help with snow on the ground but I used to put a 25' hose on my E tank that is in a cart and work in my yard a little. My Motto "Where there is a will there IS a way" lol my way is getting pretty hard to will these days. But I'll never give up to this monster. Love & Prayers, Peggy Florida, IPF/UIP 2004 "I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Patty. I use a Rubbermaid two step stool to get up when I just absolutely have to get on the floor to sort stuff. One of my projects is caulking all of my counters where I have pulled the putty away pulling myself up. I also have one of the gardening benches that you can sit on or flip to kneel on. My knees can't take kneeling anymore but it is good to drag along as I scoot down my garden row. It is still tough getting whacked by my tank as I reach to weed. I fell in my hedge a foot from the door right after getting my tank. I was like a turtle on it's back flailing around on the spiky hedge in the deep snow with my purse over my arm and bags of groceries all tangled. I finally got on my knees, put one hand on the step and braced on the door casing to pull myself up. The other time it was on the other side of the sidewalk in the deep snow. I thought sure I was going to freeze to death three feet from my front door. I had to get on my feet before I could find my keys and cell phone. I really improved on the tracleer but it took a while for it to kick in. From: friend.patti <friend.patti@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Monday, February 2, 2009 5:11:45 PMSubject: Re: questions margareti hear you, bending and goodness gracious to get down on the floor and get up without help.. oh, ya. I am woman (helen reddy) but...we will figure it out and yes i hear Beth chuckling at me.. yes i am getting ready to say "uncle". but this too shall pass.. so sorry,you are experiencing this. i know Joyce and were sharing different ways for me to save energy.. simple things we don't think of .. doing dishes/cooking sitting on a stool. the umbrella strollerto be able to walk the mall etc.. , i guess we need to explore how we can get off the ground when we finally get down there and need to get up.. ha ha.. have a great support group with lots of ideas. keepin touch. patti ipf 7'06,nj > > >> > > Bev, My heart just breaks for you. First and most important... > You > > > are not going to die tomorrow..> > > You can still live a full life--just a little different. For > your > > > boat. take plenty of tanks, long hoses.> > > As long as you can secure the tanks I don't see why you couldn't > do > > > anything you want.> > > > > > The University would be THE place you want to go. IPF is a> disease > > > that needs a specialist in> > > Pulmonary Fibrosis. There are many (over 200) different > fibrosis' .> > > There isn't a treatment for IPF. Some give prednisone and or > imuran > > > but they haven't been proven to help with this monster. Theside > > > effects were not worth it for me. I wish I had known then what I > know > > > now.> > > > > > I don't think you should worry about funerals right now. You > have a > > > lot of living to do. GO GIRL, LIVE.> > > Here on this board we try to help each other with tips and > > > encouragement. Anything you question ASK.> > > There are no dumb questions. Someone will always be here to help.> > > > > > I also have IPF. I was diagnosed almost five years ago. Juneof > 2004. > > > Don't feel your alone in this fight.> > > God Bless you with strength and peace.> > > > > > Love & Prayers, Peggy> > > Florida, IPF/UIP 2004> > > > > > "I believe that friends are quiet angels who lift us to our feet,> > > when our wings have trouble remembering how to fly."> > > > > > > > > > Thank you. Your post does make me feel better. Where I live the> > doctors are bad. I am going to a pulmonary specialist in > Spokane,wa.> > but the local doctors here failed to diagnose this with an earlier> > chest x-ray When I got bad enough to be put in the local hospital > they> > said that it was curable and they thought that they had me cured.> > Shows how much they know. Last year one of them failed to diagnose > a> > perforated appendix. I was within two days of dying when I went to> > another doctor and was sent to Spokane for emergency surgery. So my> > lungs are very bad now. I still intend to live as much as I can > for as> > long as I can. What about the portable concentrators? My doctor > said> > that I should ask my oxygen provider about an Inogen machine. I was> > told that I can't have one of those for home use. Medicare won't > pay> > for them. He said that they cost $6,000. They are 4 thousand on the> > internet. I thought that when I sell my house I might be able to > buy> > one. I'm also curious about disability. I don't know what the> > requirements are for that but I thought that I might get morehelp> > with medical expenses at least. I am just full of questions. Bev> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 3, 2009 Report Share Posted February 3, 2009 Isn't it amazing how they (docs) give you the news that will drive you to drink, and then tell you that you can't. I swear they plan these things. lol. Later, NSIP/UIP 08 > > Subject: Re: Re: questions > To: Breathe-Support > Date: Monday, February 2, 2009, 12:08 PM > Patti...I can say I know how you feel and somedays, for me, > it's worse than others. Those are the days I stay home > in 'jammies. I simply do not have the " fight " > in me as I did a few years back. > Wish I had some magic elixir I could recommend...hell I > can't even have a stiff drink w so many meds! :>) > Speaking of which, 30 a day does sound like a bunch. > Let's just do today's stuff today and we'll > worry about tomorrow's stuff tomorrow...how's that? > > Love, > > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Re: questions > > > hi > just realizing reading the posts today; it is going on 10 > years when > the IPF showed up on xray. the changes that have occurred > even > since the biopsy was done 7/06. the fatigue and at a > point that is > getting harder to keep struggling to do things. just > packing the car > with my bag let alone try and carry oxygen out. i say > that laying > in bed now as too tiring to think to push to go out. I > chuckle > thinking how strange things are and how others have no > idea the > struggles every day and every min. making decisions to do > things and > then to push where WE think we need to push harder.. > Sorry, getting > more and more frustrated and i am just ending an > infection and an > exacerbation of ipf.. this weather is not helping at all. > i like > everyone am just soooooo tired of not being able to just > pick up and > run.. and it takes tooo long to get ready. sorry, just > have been > having a rough time.. And then to hear I LOOK > GOOD>> when i don't > feel so good.. and too healthy for a lung. Am on the > waiting list > but still too well.. > Decided that i need to start taking better care of myself > and > redirect where i push harder. Eating,spiritually, > exercising, using > my oxygen as i am suppose. And yes i am thankfulf for my > meds but > taking 30 a day is just too frustrating especially i am > one that > never took any meds... oh, well another journey to travel > and who > knows maybe the mountains wont be so steep, Patti ipf > 7'06, NJ > > > > > > > > Bev, My heart just breaks for you. First and > most important... > You > > > are not going to die tomorrow.. > > > You can still live a full life--just a little > different. For > your > > > boat. take plenty of tanks, long hoses. > > > As long as you can secure the tanks I don't > see why you couldn't > do > > > anything you want. > > > > > > The University would be THE place you want to > go. IPF is a > disease > > > that needs a specialist in > > > Pulmonary Fibrosis. There are many (over 200) > different > fibrosis' . > > > There isn't a treatment for IPF. Some give > prednisone and or > imuran > > > but they haven't been proven to help with > this monster. The side > > > effects were not worth it for me. I wish I had > known then what I > know > > > now. > > > > > > I don't think you should worry about > funerals right now. You > have a > > > lot of living to do. GO GIRL, LIVE. > > > Here on this board we try to help each other > with tips and > > > encouragement. Anything you question ASK. > > > There are no dumb questions. Someone will > always be here to help. > > > > > > I also have IPF. I was diagnosed almost five > years ago. June of > 2004. > > > Don't feel your alone in this fight. > > > God Bless you with strength and peace. > > > > > > Love & Prayers, Peggy > > > Florida, IPF/UIP 2004 > > > > > > " I believe that friends are quiet angels > who lift us to our feet, > > > when our wings have trouble remembering how to > fly. " > > > > > > > > > > Thank you. Your post does make me feel better. Where > I live the > > doctors are bad. I am going to a pulmonary > specialist in > Spokane,wa. > > but the local doctors here failed to diagnose this > with an earlier > > chest x-ray When I got bad enough to be put in the > local hospital > they > > said that it was curable and they thought that they > had me cured. > > Shows how much they know. Last year one of them > failed to diagnose > a > > perforated appendix. I was within two days of dying > when I went to > > another doctor and was sent to Spokane for emergency > surgery. So my > > lungs are very bad now. I still intend to live as > much as I can > for as > > long as I can. What about the portable > concentrators? My doctor > said > > that I should ask my oxygen provider about an Inogen > machine. I was > > told that I can't have one of those for home > use. Medicare won't > pay > > for them. He said that they cost $6,000. They are 4 > thousand on the > > internet. I thought that when I sell my house I > might be able to > buy > > one. I'm also curious about disability. I > don't know what the > > requirements are for that but I thought that I might > get more help > > with medical expenses at least. I am just full of > questions. Bev > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2012 Report Share Posted April 1, 2012 A lot of it depends as to why the child is "acting up"...mine tends to really act out when he is getting sick or is not feeling well. Also, is he in an autism supporting school (where they have the adequate staff) to deal with behaviors and related issues? To: "deniselist" <deniseslist >Sent: Saturday, March 31, 2012 4:45:46 PMSubject: Questions Hi Everyone,I have a friend who wanted to inquire about 2 separate issues. The first is about whether or not there now exists a test or markers that help identify autism in a fetus. Someone said they heard that something recently was developed (maybe out of U of M) but they were not sure. Has anyone heard of this? As far as I know, there is no way to detect Autism prior to birth. and secondly... Does anyone know what the school policy is for kids acting out. Can they call parents to pick them up? I thought they were required to work it through with the children in school as picking a child up would only reinforce the behavior. Can anyone advise about the school's legal responsibility? I believe the child is a ese class. Thanks for all your help in advance. Quote Link to comment Share on other sites More sharing options...
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