Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much. Merf IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Merf, I'm a tiny bit confused....I'm assuming the doctor has positively diagnosed you with pulmonary fibrosis of some type or another, yes? If so there has to be some scarring in your lungs. That is the definition of pulmonary fibrosis, those words mean lung scarring. I'm hoping that yours is still relatively mild and let's hope it stays that way for a long long time. Most of us find that an oximeter is a very useful tool for gathering information about how our saturations vary under different circumstances and with different types of activity. If at the end of your 6 minute walk your sats were at 90 I'm assuming they have not put you on suplemental O2. If I were you I would purchase an oximeter so that you can see what your sats do when you do something more strenuous than a 6 minute walk. You want to keep them above 90 at all times. If you consistently fall under 90 when doing a particular activity, you are going to want to bring this to your doctors attention. The portable nebs website does have an oximeter that they will ship free to Canada and they charge $109 US. Here is the link:http://www.portablenebs.com/canada-c2.htm It's a relatively small investment that can have big payoff both in information and safety for you. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Saturday, June 20, 2009 3:11:47 PMSubject: Re: Newbie The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much. Merf IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Merf As to the oximeter, they're available as inexpensively as $65 in the US. You probably can't order online for Canadian delivery but I'm sure some can ship to Canada. Here is one for $89CAD, from a Canada distributor. Is it still important for you to have one? Yes, because you do occasionally exert yourself more than on a six minute walk. Especially if you do any exercise, like a treadmill. Now, I'm confused. The very definition of pulmonary fibrosis would be scarring. How were you diagnosed? While your medical care may be very available I would encourage you to be sure your medical facility specializes in Interstitial Lung Diseases. http://www.fact-canada.com/Sportstat/COPD-pulse-oximeters.html > > The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much. > Merf IPF 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Merf... it is too much! The one many of us have here on the board works fine, easy to read and so much less $$$. if you don't have it: www.portablenebs.com. I think I forgot to add it is FDA approved as well. Don't buy anything w/o that approval.... If you are at '90' you don't want to be any lower and chances are you will be. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Newbie The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much. Merf IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Hi Merf,I would get one if you O2 saturation dropped that much in only 6 minutes. I ordered the one I described at ClinicalGuard.com and they have others to choose from with different features. I believe Walt has a web site for some as well. Mine is going to be $141.00 or something like that. You might need to pay more but I'd ask if your doctor to see if one can be provided if your health care is covered by your taxes. Never hurts to ask. Good luck,Peggy E. (53yo, ILD 2008)Subject: Re: NewbieTo: Breathe-Support Date: Saturday, June 20, 2009, 12:11 PM The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much. Merf IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Try portablenebs.com they are very affordable there and well worth it. A pulse ox of 90 is the low end of normal. For $65 you can have peace of mind knowing what your pulse ox is.Keep well Merf.PJ Re: Newbie The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much. Merf IPF 05 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Pink I was unaware of that until you informed us even though I was interviewed long ago by the consulting company Nonin involved in the development. Glad to see they came out with a lower priced product. There are actually two versions of the GO2 with the GO2 approved for medical use and the Go2Achieve not approved even thought the two products look identical and have identical specs. I think they may have the two versions just for the basis of one which requires a prescription and one which does not. > > > From: Pat corpat@... > Subject: Re: Newbie > To: Breathe-Support > Date: Saturday, June 20, 2009, 3:11 PM > > > > > > > > > > The pulmo doc didn't say any thing about visible scarring. Everything looked nice and pink to me.I am very fortunate that I don't have any other diseases. And hope it stays that way. With our health care system we are covered for just about every thing. When we go in to hospital we are covered and all doctor orderd tests are covered. Most meds are covered. If not our pharamacist tries to get a generic brand or a cheaper one, but the same. I do have a question regarding oximeters. I hear everybody saying to get one. At my 6mw my sat went down to 90. Does this mean I need one. My wife has been trying to get a price on them around here and they are hard to find. When she did price was from $450.00 to $1100.00. That seems like way to much. > Merf IPF 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 Pink Well, obviously Nonin recognized that there was a mass market out there that was price sensitive. Color and sleek design seemed quite important to the consulting group. I saw some quite creative designs. They were obviously interested in offering color choices. I was far more interested in cost and made the point that while I had a Nonin 9500 I wasn't about to contend it was worth the price of four Choice's. I also pointed out the inability to read the Nonin in bright sunlight as my other major problem. I'm interested in seeing if they addressed that. The new unit comes with a two year warrantee. It's interesting though that the warrantee is different on the two different versions in terms of how it must be used to comply. I have a Nonin 9500 that has hit the floor and concrete more times than I want to admit. The spring has come off and I've had to remember each time how to get it back on. But, it keeps on ticking as the watch people would say. I also have an SPO. My criticism of it is that it doesn't read as quickly and sometimes is harder to get a reading. It is visible in all conditions however. I've been intending to get a Choice for a while and now may also try one of the new Nonins just to have a spare and to see how they are. > > > > > > From: Pat corpat@ > > Subject: Re: Newbie > > To: Breathe-Support@ yahoogroups. com > > Date: Saturday, June 20, 2009, 3:11 PM > > > > > > > > > > > > > > > > > > > > The pulmo doc didn't say any thing about visible scarring. Everything > looked nice and pink to me.I am very fortunate that I don't have any > other diseases. And hope it stays that way. With our health care system > we are covered for just about every thing. When we go in to hospital we > are covered and all doctor orderd tests are covered. Most meds are > covered. If not our pharamacist tries to get a generic brand or a > cheaper one, but the same. I do have a question regarding oximeters. I > hear everybody saying to get one. At my 6mw my sat went down to 90. Does > this mean I need one. My wife has been trying to get a price on them > around here and they are hard to find. When she did price was from > $450.00 to $1100.00. That seems like way to much. > > Merf IPF 05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2009 Report Share Posted June 22, 2009 bruce i didn't know that you had the nonin 9500 -- it was expensive when i bought it, but was told that it was very good yes, reading it in the sun is impossible, i have to turn so that it is in the shade, it does get a lot of use and abuse, but keeps on ticking when bending down for the dog, sometimes he gets hit in the head with it i am not familar with the SPO just have the one unit sometimes think about getting a second one, a cheaper one for back up even though i sent the prescription and reciept to my medical insurance at the time, they did not pay Pink Joyce (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Re: NewbieTo: Breathe-Support Date: Monday, June 22, 2009, 10:39 AM PinkWell, obviously Nonin recognized that there was a mass market out therethat was price sensitive. Color and sleek design seemed quite importantto the consulting group. I saw some quite creative designs. They wereobviously interested in offering color choices. I was far moreinterested in cost and made the point that while I had a Nonin 9500 Iwasn't about to contend it was worth the price of four Choice's. I alsopointed out the inability to read the Nonin in bright sunlight as myother major problem. I'm interested in seeing if they addressed that.The new unit comes with a two year warrantee. It's interesting thoughthat the warrantee is different on the two different versions in termsof how it must be used to comply.I have a Nonin 9500 that has hit the floor and concrete more times thanI want to admit. The spring has come off and I've had to remember eachtime how to get it back on. But, it keeps on ticking as the watch peoplewould say. I also have an SPO. My criticism of it is that it doesn'tread as quickly and sometimes is harder to get a reading. It is visiblein all conditions however. I've been intending to get a Choice for awhile and now may also try one of the new Nonins just to have a spareand to see how they are.> >> >> > From: Pat corpat@> > Subject: Re: Newbie> > To: Breathe-Support@ yahoogroups. com> > Date: Saturday, June 20, 2009, 3:11 PM> >> >> >> >> >> >> >> >> >> > The pulmo doc didn't say any thing about visible scarring.Everything> looked nice and pink to me.I am very fortunate that I don't have any> other diseases. And hope it stays that way. With our health caresystem> we are covered for just about every thing. When we go in to hospitalwe> are covered and all doctor orderd tests are covered. Most meds are> covered. If not our pharamacist tries to get a generic brand or a> cheaper one, but the same. I do have a question regarding oximeters. I> hear everybody saying to get one. At my 6mw my sat went down to 90.Does> this mean I need one. My wife has been trying to get a price on them> around here and they are hard to find. When she did price was from> $450.00 to $1100.00. That seems like way to much.> > Merf IPF 05> >> Quote Link to comment Share on other sites More sharing options...
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