Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi , boy my brain is gone fishing because i meant ph not hp. sheds another light ? i use a spirometer that is helping and can't find out what pressure is because of lack of insurance so iam stuck. I can go up and done my stairs and on o2 stay at 98 - 95 on my ox and 90-89 without o2 .i need to last atleast 5 years so my family can adapt, if i can. i garden wearing o2 and drive with it. i don't care about stares because i am breathing and here. One day at a time and hopefully insurances will change so i can get coverage. untill then i use laxix andcozaar and seeing a heart guy where my sister in law works who is seeing me because he is a human being. Beth wrote: Sharon, I hear you! I'm 48 and not ready to throw in the towel yet either! My son is 23 and just starting to get his act together. (He had a 'turbulent' adolescence....and that's being charitable) I'd like to see him in a career, married and a couple of grands before I vacate this body of mine. But he's not in any hurry either. For him that's just as well though, he's still got some growing up to do. So you were diagnosed with HP in February. Did anyone tell you what the hypersensitivity was to? (HP= hypersensitivity pneumonitis) Just wondering.... I don't currently have insurance either. I do collect SSDI and will be eligible for Medicare in November. Right now I'm getting care through Duke University. I'm making small payments to them each month but the vast majority of my care is paid for by Duke's financial help programs. Alot of university medical centers have such programs but you have to ask about them and be persistent. You might want to give a call to the Caring Voice Coalition. . They help people with serious chronic illness like ours with insurance issues, finding financial assitance, finding ways to get our meds at reduced cost etc. They're a great group, give them a call. As for using the treadmill, I'd check with a doctor and make sure you are clear to exercise and then go for it. As long as your O2 levels stay above 90 or so when you're using the treadmill, there shouldn't be a problem. Are you on supplemental O2? You might consider buying an oximeter and keeping tabs on your saturation while your exercising to be safe. I know this is all overwhelming and frustrating. We "get it" here. Good luck Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Pics Leanne, Hi my name is Sharon and I just read the file on energy and the therapists at the pulmonary rehab do not understand the fact that it says no aeorbic excersize. I should say I was diagnosed with hp in feb.2008. they want me to use the treadmill along with lightweight weights. Now i'am confused. Can you help meunderstand the file? THANKS SharonLeanne wrote: Thanks to everyone who has posted pics. I LOVE seeing pics of our peeps. Also, would anyone mind if I copied their picture for the poster that Wally is doing for the first annual Cajun / Cowboy event? I figured I would just print the pics on photo paper and Voila!! This is going to be an evolving poster - the faces of pf and a traveling one, too. We're going to bring it to San . The faces of pf.Let me know.Leanne uip 1/03 Illinois Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Sharon, Oh yes, pulmonary hypertension (PH) and not hypersensitivity pneumonitis (HP) (Vegetable soup anyone?) That does put a different spin on the exercise. I'd be very very cautious about the treadmill unless you've been told by your doctor that you're ok to exercise. It certainly does sound as though the O2 is keeping your sats where they're supposed to be so that's excellent. I'm a little confused (my brain must have gone fishing with yours. LOL). Have you been diagnosed with some type of pulmonary fibrosis? Is that where the pulmonary hypertension came from? It does sound like you're doing everything you can and I'd put money on your ability to survive AT LEAST 5 years. Keep going girl, we're right behind you! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Pics Leanne, Hi my name is Sharon and I just read the file on energy and the therapists at the pulmonary rehab do not understand the fact that it says no aeorbic excersize. I should say I was diagnosed with hp in feb.2008. they want me to use the treadmill along with lightweight weights. Now i'am confused. Can you help meunderstand the file? THANKS SharonLeanne wrote: Thanks to everyone who has posted pics. I LOVE seeing pics of our peeps. Also, would anyone mind if I copied their picture for the poster that Wally is doing for the first annual Cajun / Cowboy event? I figured I would just print the pics on photo paper and Voila!! This is going to be an evolving poster - the faces of pf and a traveling one, too. We're going to bring it to San . The faces of pf.Let me know.Leanne uip 1/03 Illinois Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hello Sharon Have a welcome from England. I am 38 and I've been diagnosed with PH in April. I'm waiting for an appointment for a specialist to come through (we do things differently here) but until then I was told to maintain my levels of activity. I don't over do it, I walk a bit each day on my O2, which I am on 24 hours a day, and I attempt (hah) to keep up with the housework. I was told not to increase my activity levels until I have seen the specialist, but that decreasing them can be detrimental too. So long as I'm on the O2 and keep an eye on my sats while I am doing anything. Take care Love Ze (38) Dermatomyositis, Pulmonary Fibrosis etc, for years, Pulmonary Hypertension Apr '08 > Thanks to everyone who has posted pics. I LOVE seeing pics of our > peeps. > > Also, would anyone mind if I copied their picture for the poster that > Wally is doing for the first annual Cajun / Cowboy event? I figured I > would just print the pics on photo paper and Voila!! This is going to > be an evolving poster - the faces of pf and a traveling one, too. > We're going to bring it to San . The faces of pf.> > Let me know.> > Leanne uip 1/03 Illinois> > > > > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. > > > > > > > Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2008 Report Share Posted April 21, 2008 Hi, the Drs. said it resulted from tb i had at twenty three, the Drs. told me to use the treadmill and go to fitness center and use light weights so i'am hoping they know whats best.of coarse i go slower than usually 5 min. slow speed than 7 alittle faster than 5 slow again.GEEZZZZ i hope they know what they are sayingsharon p ph 2008 illinois Beth wrote: Sharon, Oh yes, pulmonary hypertension (PH) and not hypersensitivity pneumonitis (HP) (Vegetable soup anyone?) That does put a different spin on the exercise. I'd be very very cautious about the treadmill unless you've been told by your doctor that you're ok to exercise. It certainly does sound as though the O2 is keeping your sats where they're supposed to be so that's excellent. I'm a little confused (my brain must have gone fishing with yours. LOL). Have you been diagnosed with some type of pulmonary fibrosis? Is that where the pulmonary hypertension came from? It does sound like you're doing everything you can and I'd put money on your ability to survive AT LEAST 5 years. Keep going girl, we're right behind you! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Pics Leanne, Hi my name is Sharon and I just read the file on energy and the therapists at the pulmonary rehab do not understand the fact that it says no aeorbic excersize. I should say I was diagnosed with hp in feb.2008. they want me to use the treadmill along with lightweight weights. Now i'am confused. Can you help meunderstand the file? THANKS SharonLeanne wrote: Thanks to everyone who has posted pics. I LOVE seeing pics of our peeps. Also, would anyone mind if I copied their picture for the poster that Wally is doing for the first annual Cajun / Cowboy event? I figured I would just print the pics on photo paper and Voila!! This is going to be an evolving poster - the faces of pf and a traveling one, too. We're going to bring it to San . The faces of pf.Let me know.Leanne uip 1/03 Illinois Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Be a better friend, newshound, and know-it-all with Yahoo! Mobile. Try it now. Quote Link to comment Share on other sites More sharing options...
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