Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Merf Do you have an oximeter and are you checking it under exertion? O2 sats at rest really don't mean anything to PF'ers as mine would be fine at rest still. You say all your tests indication no oxygen yet, are you referring to six minute walks? I'm assuming based on where you're going that you are. I certainly wasn't on oxygen at your current FVC's but the main reason is I hadn't been diagnosed yet. So, I couldn't tell you at what level I first truly needed oxygen, since I was put on it the day I was diagnosed. Now, as to you PFT's. Yes, your FVC seems to show a definite trend but still nothing severe. I'm assuming the reason you're having so many PFT's is the trial you're in. While it would seem to be a natural progression of the disease, stating whether the trial is helping, doing nothing, or hurting is impossible for anyone to do. That's the entire purpose of trials and you really know nothing until all the data is in and compiled. > > Bruce,as you are talking about sats here is an example of my last few. > Aug25/09 Sept3/09 Oct01/09 oct29/09 Nov26/09 Dec21/09 > O2 Sats 96 96 96 96 95 95 > FVC(L) 3.13 3.09 3.16 3.02 2.87 2.83 > FVC(%) 70.7 69.9 71.3 68.3 64.9 63.9 > DLCO 12.3 10.7 > DLCO(%) 38 33 > It appears to me I am slipping. Talked to my pulmodude about it and asked if it was result of natural progression or trial drug.He told me it is natural progression as no adverse results of trial have been reported. I was steady for so long he said that I came to expect that as normal. This is now the new normal. I feel the decline in my chest but it is hard to explain. I am just scared sh..less. All my tests say no O2 yet. Everything I used to do easy now requires more effort. I am going to a teaching hospital for treatment and he does mostly PF research and treatment. Sorry for the rant guys but I am almost at my wits end. Hope you can make sense out this. Love you all. > Merf 62 IPF 05 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Thank you Bruce. I do have an oximeter and when my sats go down with exertion I stop and rest. You are right about the PFT's . I have one at every infusion 4 weeks apart. Your said the same thing as my pulmodue the trend downward is not severe.Again thanks for helping to ease my mind. You guys are a Godsend. Thanks Merf 62 IPF 05 > > > > Bruce,as you are talking about sats here is an example of my last few. > > Aug25/09 Sept3/09 Oct01/09 oct29/09 Nov26/09 Dec21/09 > > O2 Sats 96 96 96 96 95 95 > > FVC(L) 3.13 3.09 3.16 3.02 2.87 2.83 > > FVC(%) 70.7 69.9 71.3 68.3 64.9 63.9 > > DLCO 12.3 10.7 > > DLCO(%) 38 33 > > It appears to me I am slipping. Talked to my pulmodude about it and > asked if it was result of natural progression or trial drug.He told me > it is natural progression as no adverse results of trial have been > reported. I was steady for so long he said that I came to expect that > as normal. This is now the new normal. I feel the decline in my chest > but it is hard to explain. I am just scared sh..less. All my tests say > no O2 yet. Everything I used to do easy now requires more effort. I am > going to a teaching hospital for treatment and he does mostly PF > research and treatment. Sorry for the rant guys but I am almost at my > wits end. Hope you can make sense out this. Love you all. > > Merf 62 IPF 05 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 23, 2010 Report Share Posted January 23, 2010 Merf If your sats drop below 90% when you exert you need oxygen. Now if its a rare occasion its one thing to stop and rest, but if its something than keeps you from moving as you otherwise could, then oxygen is the answer. Your doctor can only know what he observes and what you tell him so if this is happening you need to make notes. He can't replicate the circumstances you encounter during the day. I'm assuming that you've had an overnight oximeter test to check for drops during your sleep. > > > > > > Bruce,as you are talking about sats here is an example of my last few. > > > Aug25/09 Sept3/09 Oct01/09 oct29/09 Nov26/09 Dec21/09 > > > O2 Sats 96 96 96 96 95 95 > > > FVC(L) 3.13 3.09 3.16 3.02 2.87 2.83 > > > FVC(%) 70.7 69.9 71.3 68.3 64.9 63.9 > > > DLCO 12.3 10.7 > > > DLCO(%) 38 33 > > > It appears to me I am slipping. Talked to my pulmodude about it and > > asked if it was result of natural progression or trial drug.He told me > > it is natural progression as no adverse results of trial have been > > reported. I was steady for so long he said that I came to expect that > > as normal. This is now the new normal. I feel the decline in my chest > > but it is hard to explain. I am just scared sh..less. All my tests say > > no O2 yet. Everything I used to do easy now requires more effort. I am > > going to a teaching hospital for treatment and he does mostly PF > > research and treatment. Sorry for the rant guys but I am almost at my > > wits end. Hope you can make sense out this. Love you all. > > > Merf 62 IPF 05 > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 24, 2010 Report Share Posted January 24, 2010 Merf sorry you are seeing a change those numbers mean nothing to me how do they compare to the last set of numbers what about your SAT does it change with exertion if it does then that would indicate a need for o2 depending on how low it goes Pink Joyce R (IPF 3/06) IFA 5/09 Pennsylvania Donate Life Listed 1/09 Inactive 4/09 www.transplantfund.org--- Subject: Pft's. Bruce, BethTo: Breathe-Support Date: Saturday, January 23, 2010, 6:35 PM Bruce,as you are talking about sats here is an example of my last few.Aug25/09 Sept3/09 Oct01/09 oct29/09 Nov26/09 Dec21/09O2 Sats 96 96 96 96 95 95FVC(L) 3.13 3.09 3.16 3.02 2.87 2.83FVC(%) 70.7 69.9 71.3 68.3 64.9 63.9DLCO 12.3 10.7DLCO(%) 38 33It appears to me I am slipping. Talked to my pulmodude about it and asked if it was result of natural progression or trial drug.He told me it is natural progression as no adverse results of trial have been reported. I was steady for so long he said that I came to expect that as normal. This is now the new normal. I feel the decline in my chest but it is hard to explain. I am just scared sh..less. All my tests say no O2 yet. Everything I used to do easy now requires more effort. I am going to a teaching hospital for treatment and he does mostly PF research and treatment. Sorry for the rant guys but I am almost at my wits end. Hope you can make sense out this. Love you all.Merf 62 IPF 05 Quote Link to comment Share on other sites More sharing options...
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