Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 Sher, I don't know exactly how much exercise helps, I suspect it's different for everyone. For me, my real 'recovery' began when I started rehab back in August of 06. My hospital stay and all that prednisone had stablized my disease process but I began to feel better and be able to do more and recover some of my spirit and determination with exercise. I think for me it's partly psychological, it's the one thing I could do that made a difference in how I felt. But it's more than that, I mean at the present time my most recent pft's actually improved and my only 'treatment' right now is losing weight and exercise. I know that exercise done properly with attention paid to sats and level of fatigue helps the rest of our body work more efficiently and better with the oxygen our lungs are able to provide. The idea that we want our bodies to work as efficiently as possible makes sense to me. Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Ze/ Lou/ Beth I'll reply to you three here in one post. Ze, well, "this Dr" is the very first pulmonologist I went to. He didn't explain my dx very well and I realize only now that HE thought I already had basic info. and I was too stunned to ask any questions (after reading on line I had a fatal disease). So we didn't get off on the right foot together. Then it was a 2nd opinion Dr, then a Dr closer distance to me, then the Dr in a training hospital that moved to another area right after our first visit...the one who changed the dx from IPF to NSIP. Soooooo, I went back where I started. I'm sure we will do much better this time -- 'sides, there ain't no more pulmonologists around here within a reasonable driving distance. ) The crackles: Sometimes the noises in my lungs are different and louder at times than other times. Our lungs can just be "working better" at one time or another is how it's explained to me. I'm sure we are all different. Lou ... Gosh I'm sorry to hear you have an infection and I pray the meds will kill it quickly! I'm thinking if we went to three different pulmonologists we could have three different dx. Each from a competent specialist. Drs just don't know a lot about these strains of PF. Dr said today I could take Prednisone and it "may or may not help" and those aren't good enough odds for me. I'm happy for you that your dosage of pred. seems to work for you. Are you still on the liquid? I know there was a lot of activity awhile back and I'm not sure if you stayed w/liquid. What you sent is certainly "Abstract" ok. Nothing that we don't know already. I'd go crazier than I am trying to research these different strains and the particulars of each one. I really DON'T care. I have PF, with honeycombing and crackles and too much sob. That's enough info for me! Beth ... well said! Perfectly said. Does exercise really help our lungs "work better" do ya think? I have to admit Dr saying I have an "atypical" form surprised me. Aren't they all "atypical"? He said as much too. There just is no way to identify what's going on with ME without a bio and I'm not going there. He agreed. He wouldn't recommend it at this point. There again is the open end discussion. If we do one now, maybe we can treat and stop/control progression. If we do nothing then we will surely have progression with no treatment. But, so far the only treatment is prednisone and there are no guarantees with that!. Round and round we go, where it stops nobody knows. Yeah, it is what it is. Thanks you 'sweeties'. ) MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 2, 2008 Report Share Posted July 2, 2008 MB ... I sound like a broken record with my, "I should" "I should" "I should" re: exercise. I was doing 10 min on the treadmill and pretty soon just gave out on that energy. It does make sense to exercise and I do much better in the cooler days/months. I have been almost panting all day. The air index here is bad from the smoke coming up from the CA fires. I've been using O2 and it helps. But, to go get on that treadmill? Hear me talk! MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Ze/ Lou/ Beth I'll reply to you three here in one post. Ze, well, "this Dr" is the very first pulmonologist I went to. He didn't explain my dx very well and I realize only now that HE thought I already had basic info. and I was too stunned to ask any questions (after reading on line I had a fatal disease). So we didn't get off on the right foot together. Then it was a 2nd opinion Dr, then a Dr closer distance to me, then the Dr in a training hospital that moved to another area right after our first visit...the one who changed the dx from IPF to NSIP. Soooooo, I went back where I started. I'm sure we will do much better this time -- 'sides, there ain't no more pulmonologists around here within a reasonable driving distance. ) The crackles: Sometimes the noises in my lungs are different and louder at times than other times. Our lungs can just be "working better" at one time or another is how it's explained to me. I'm sure we are all different. Lou ... Gosh I'm sorry to hear you have an infection and I pray the meds will kill it quickly! I'm thinking if we went to three different pulmonologists we could have three different dx. Each from a competent specialist. Drs just don't know a lot about these strains of PF. Dr said today I could take Prednisone and it "may or may not help" and those aren't good enough odds for me. I'm happy for you that your dosage of pred. seems to work for you. Are you still on the liquid? I know there was a lot of activity awhile back and I'm not sure if you stayed w/liquid. What you sent is certainly "Abstract" ok. Nothing that we don't know already. I'd go crazier than I am trying to research these different strains and the particulars of each one. I really DON'T care. I have PF, with honeycombing and crackles and too much sob. That's enough info for me! Beth ... well said! Perfectly said. Does exercise really help our lungs "work better" do ya think? I have to admit Dr saying I have an "atypical" form surprised me. Aren't they all "atypical"? He said as much too. There just is no way to identify what's going on with ME without a bio and I'm not going there. He agreed. He wouldn't recommend it at this point. There again is the open end discussion. If we do one now, maybe we can treat and stop/control progression. If we do nothing then we will surely have progression with no treatment. But, so far the only treatment is prednisone and there are no guarantees with that!. Round and round we go, where it stops nobody knows. Yeah, it is what it is. Thanks you 'sweeties'. ) MamaSher, age 69. IPF 3-06, OR./ NasturtiumsDon't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
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