Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Jack You are a classic case that I was discussing with someone the other day. I hope to be the same. Here is the classic scenario of Jack and hopefully of Bruce. 1-Diagnosis of UIP through biopsy and confirmed by more than one pathologist. 2-Patient remains pretty healthy for several years. 3-Retroactively doctors decide patient is doing too well for UIP so in spite of everything it must be another form of ILD, perhaps NSIP or perhaps something else. Who knows? This reiterates that we don't have expiration dates stamped on our butts. They are still learning so much and lots of it is after the fact. The way they continue to validate their theories is by changing the diagnosis if you don't fit into the standard of the original diagnosis. By theory, you should be much worse off than you are. In reality, you're doing very well. You're a healthy active 79 year old. How will they explain it? At some point they'll change the diagnosis. Meanwhile you'll just continue to live and enjoy and not really care about their theories or the diagnosis. Yours is a story and inspiration for everyone diagnosed with PF or more specifically with UIP. The doctors know so little. The statistics are meaningless. The only thing we can be sure of is how we feel today. > > > > Taking my cue from Bruce, I tracked my SATS during the day yesterday. > This is how it went: > > > > 1. On awaking at 5:00 am > 97 > > 2. Climbing stairs - one flight > 96 > > 3. Climbing stairs - two flights > 88 > > 4. 30 minutes stretching exercises & weight workout 97 > > 5. Shower > 95 > > 6. Four hours sitting/working at desk - lots of movement 97 > > 7. Grocery shopping > 93 > > 8. Off load & stack in garage19 boxes of bath exhaust fans 89 > > 9. 30 minute medium brisk walk. SATS flucuated due to > > up and down hilly terrain 91 - 95. End was steep hill > > to my house which sits at the top, ending figure > 93 > > 10. Bedtime at last with a coughing fit > 93 > > > > I assume these are good numbers to have, but since I am in year four > following my dx, I keep waiting for > > them to drop. > > > > Jack > > 79/IPF - UIP/dx06/05 Maine > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Bruce, this is an addendumto my previous post. I will request the sleep test when I see the pulmo. I am aware that I could have apnea and may not be getting enough oxygen. I wish I could stay awake to see if that is what happens. Jack79/IPF - UIP/dx06/05 Maine Re: My Day JackThats great, both that you did that and your SATS. Now, it will give yousomething to compare against but also tells you a couple of things aboutyesterday. On the two flights of stairs, you'd be better off and feelbetter if you paused between flights. The same goes for unloading theboxes. Break work down into smaller increments with just a brief pause.Have you ever been checked during sleep? If not, you might want yourdoctor to prescribe an overnight oximeter (they'll just bring arecording oximeter to you for your home), just to see how it is. Mostpeople drop at sleep because breathing slows down. Also, the rest of theinformation you gathered will be excellent information for your doctor.He can do all the PFT's and six minute walks he wants but right now youhave knowledge of a typical day that he couldn't get without hooking youup to a 24 hour recorder. Even then he wouldn't be able to relate theSATS to the activities as you just did.>> Taking my cue from Bruce, I tracked my SATS during the day yesterday. This is how it went:>> 1. On awaking at 5:00 am97> 2. Climbing stairs - one flight96> 3. Climbing stairs - two flights88> 4. 30 minutes stretching exercises & weight workout 97> 5. Shower95> 6. Four hours sitting/working at desk - lots of movement 97> 7. Grocery shopping93> 8. Off load & stack in garage19 boxes of bath exhaust fans 89> 9. 30 minute medium brisk walk. SATS flucuated due to> up and down hilly terrain 91 - 95. End was steep hill> to my house which sits at the top, ending figure 93> 10. Bedtime at last with a coughing fit93>> I assume these are good numbers to have, but since I am in year fourfollowing my dx, I keep waiting for> them to drop.>> Jack> 79/IPF - UIP/dx06/05 Maine> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 19, 2008 Report Share Posted September 19, 2008 Jack " apnea and I may not be getting enough oxygen " Those are two different conditions. You may have one or both or no problem. Apnea is an interruption of sleep. However, you can be apnea free and still not get enough oxygen. > > > > Taking my cue from Bruce, I tracked my SATS during the day yesterday. > This is how it went: > > > > 1. On awaking at 5:00 am > 97 > > 2. Climbing stairs - one flight > 96 > > 3. Climbing stairs - two flights > 88 > > 4. 30 minutes stretching exercises & weight workout 97 > > 5. Shower > 95 > > 6. Four hours sitting/working at desk - lots of movement 97 > > 7. Grocery shopping > 93 > > 8. Off load & stack in garage19 boxes of bath exhaust fans 89 > > 9. 30 minute medium brisk walk. SATS flucuated due to > > up and down hilly terrain 91 - 95.. End was steep hill > > to my house which sits at the top, ending figure > 93 > > 10. Bedtime at last with a coughing fit > 93 > > > > I assume these are good numbers to have, but since I am in year four > following my dx, I keep waiting for > > them to drop. > > > > Jack > > 79/IPF - UIP/dx06/05 Maine > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 Good Sats Jack Are you on supplemental O2?Pink Joyce IPF 3/06 Pennslvania Subject: My DayTo: "Breathe-Support Group" <Breathe-Support >Date: Friday, September 19, 2008, 10:13 AM Taking my cue from Bruce, I tracked my SATS during the day yesterday. This is how it went: 1. On awaking at 5:00 am 97 2. Climbing stairs - one flight 96 3. Climbing stairs - two flights 88 4. 30 minutes stretching exercises & weight workout 97 5. Shower 95 6. Four hours sitting/working at desk - lots of movement 97 7. Grocery shopping 93 8. Off load & stack in garage19 boxes of bath exhaust fans 89 9. 30 minute medium brisk walk. SATS flucuated due to up and down hilly terrain 91 - 95. End was steep hill to my house which sits at the top, ending figure 93 10. Bedtime at last with a coughing fit 93 I assume these are good numbers to have, but since I am in year four following my dx, I keep waiting for them to drop. Jack79/IPF - UIP/dx06/05 Maine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2008 Report Share Posted September 22, 2008 No, I don't. I only get my oxygen nature's way, thank God. And I so wish that all of you could too. Jack79/IPF - UIP/dx06/05 Maine My DayTo: "Breathe-Support Group" <Breathe-Support@ yahoogroups. com>Date: Friday, September 19, 2008, 10:13 AM Taking my cue from Bruce, I tracked my SATS during the day yesterday. This is how it went: 1. On awaking at 5:00 am 97 2. Climbing stairs - one flight 96 3. Climbing stairs - two flights 88 4. 30 minutes stretching exercises & weight workout 97 5. Shower 95 6. Four hours sitting/working at desk - lots of movement 97 7. Grocery shopping 93 8. Off load & stack in garage19 boxes of bath exhaust fans 89 9. 30 minute medium brisk walk. SATS flucuated due to up and down hilly terrain 91 - 95. End was steep hill to my house which sits at the top, ending figure 93 10. Bedtime at last with a coughing fit 93 I assume these are good numbers to have, but since I am in year four following my dx, I keep waiting for them to drop. Jack79/IPF - UIP/dx06/05 Maine Quote Link to comment Share on other sites More sharing options...
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