Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 Helen sorry to hear about your flare up pulmonary rehab has been good for me the first 12 sessions (3 times a week) involved informative lessons and learning to use the equipment. We wore heart monitors, blood pressure, O2 levels and pulse were checked several times. Then we switched to twice a week with classes for about 4 weeks. Now I am on Maintenance. I try to go twice a week. The equipment that i use is for aerobic activity and weights. O2 and pulse are checked before, during and after exercise. Blood pressure is checked before and after exercise. I don't know anything about a sleep machine, so i can't help you there. pink joyce > > hello everyone, > happy new year to all of you, i'm having a diffcult time, i'm in a > lupus flare as well as not feeling good with my breathing , they've > increased my imruan , i had my stress test yesterday, i was able to > walk for two mins. i'm not sure how good that was , i start pulmonary > rehab. jan 3rd. if anyone would care to tell me what to expect i'd like > to know, also i have my sleep machine , and finding it hard to get use > to, i need lots of help. > helen > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 Hi Helen...this is Sher...sorry to hear of your lupus flare. I don't have lupus but some here do and I know they will respond. I went to rehab and found it an easy thing to do and helpful. Weight is checked each time and some easy warm up exercise from a sitting position. I went on the treadmill, monitored the entire time. When my oxygen levels dropped I then used oxygen and that helped a lot. I think the general 'strengthening' is what the purpose is. We know there is no cure for pf. I use a cpap...or sleep machine too. I hated the first one I had some years back. Just could not adjust to it. Now, I'm so glad I have it. Makes my breathing so much easier during the day and because I don't stop breathing during the night I wake up less tired. I must have been sleep-deprived for years! You don't say what trouble you're having...do you have a humidifier and does your mask fit properly? These two things make a big difference for me. Hang in there. God bless. Sher ipf 5-06 "Don't worry about tomorrow, God is already there" stress test hello everyone,happy new year to all of you, i'm having a diffcult time, i'm in a lupus flare as well as not feeling good with my breathing , they've increased my imruan , i had my stress test yesterday, i was able to walk for two mins. i'm not sure how good that was , i start pulmonaryrehab. jan 3rd. if anyone would care to tell me what to expect i'd like to know, also i have my sleep machine , and finding it hard to get use to, i need lots of help. helen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 Helen, I will say a prayer for you. Believe me, I sympathize. What form do your flares take? I am so grateful that for the most part the docs are able to control the fierceness of Lupus. Of course, with the fibrosis it brought into my life...it is no friend of mine. My energy level is fairly good right now. But, when I am down..I am down. Try to stay strong and wait for some relief. It is all so hard. Remember that God is able to comfort you in your suffering. We all care and are pulling for you. Hugs, Joyce PF 1997 Bronchiectasis 2004 INDIANA >> hello everyone,> happy new year to all of you, i'm having a diffcult time, i'm in a > lupus flare as well as not feeling good with my breathing , they've > increased my imruan , i had my stress test yesterday, i was able to > walk for two mins. i'm not sure how good that was , i start pulmonary> rehab. jan 3rd. if anyone would care to tell me what to expect i'd like > to know, also i have my sleep machine , and finding it hard to get use > to, i need lots of help. > helen> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2006 Report Share Posted December 29, 2006 Hello Helen: I have lupus too and have pulmonary fibrosis. I currently take 150 mg of Imuran. I did my pulmonary rehab and I was very satisfied. They will teach you about your disease and how to deal with your life in a better way. I highly recommend it. I hope your flare ends soon. Keep on touch. Regards, butterflync41 wrote: hello everyone,happy new year to all of you, i'm having a diffcult time, i'm in a lupus flare as well as not feeling good with my breathing , they've increased my imruan , i had my stress test yesterday, i was able to walk for two mins. i'm not sure how good that was , i start pulmonaryrehab. jan 3rd. if anyone would care to tell me what to expect i'd like to know, also i have my sleep machine , and finding it hard to get use to, i need lots of help. helen __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2006 Report Share Posted December 30, 2006 Hi Helen & , Stanford started me on Imuran and unfortunately I could not tolerate it. First throwing up, then they cut the dosage to half and all I had was nausea, I would have been better off throwing up. Then my blood count went really haywire and they took me off. Slowly my red blood count is going back up and the other issues are strating to resolve themselves. Wierd, one of us can take a drug and it really helps and then another cannot? I get distressed and discouraged at times, but I try to get more rest and deal with it . Thank G-d for my husband and children, because if I did not have their support I could not do it. Rather amazing what use to take me an hour to finish now takes almost the entire day. Does not matter whether I am doing paperwork or some laundry or whatever/ ADJUST! That is what I keep trying to tell myself. My wish for the New Year is that a cure is found for all, probably won't happen, but that is my wish anyway. Hugs to all, Louise/ipf/96" A. Morales" wrote: Hello Helen: I have lupus too and have pulmonary fibrosis. I currently take 150 mg of Imuran. I did my pulmonary rehab and I was very satisfied. They will teach you about your disease and how to deal with your life in a better way. I highly recommend it. I hope your flare ends soon. Keep on touch. Regards, butterflync41 <butterflync41> wrote: hello everyone,happy new year to all of you, i'm having a diffcult time, i'm in a lupus flare as well as not feeling good with my breathing , they've increased my imruan , i had my stress test yesterday, i was able to walk for two mins. i'm not sure how good that was , i start pulmonaryrehab. jan 3rd. if anyone would care to tell me what to expect i'd like to know, also i have my sleep machine , and finding it hard to get use to, i need lots of help. helen __________________________________________________ Quote Link to comment Share on other sites More sharing options...
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