conni
Forum Replies Created
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Have to say I agree with those who replied that you should find another doctor. Just telling you it’s up to god is a lousy way to help someone. If you have a university hospital anywhere within 3-4 hours go there they at least will have whatever might help.
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Can’t believe without having all your tests your doc prescribed a whole litany of things. I have been dealing with pf since 2014 and I would say more than half the pulmonologist’s I have seen are not to impressive. Medicare does have a procedure before they will ok a concentrator and oz , as someone posted above. call your doctors office back until you get some answers and probably should find another pulmonologist ! Don’t fall for their so busy ..seems like the cardiologist should say that and they don’t .
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as some participants have noted most doctors will not do anything other than what BI or FDA tells them. I do believe some of the people have doctors who recognize that we do know our own bodies and tell you to follow that. Most do not know enough about our disease to even understand what we are asking them. the healthcare here in florida for sure is to follow whatever medicare says,little interest in really helping or even suggesting something. Very unlike the doctors at Innova in Northern Va. who were full of ideas and suggestions. If your doctor doesnt make you happy find another one! You are paying them for a service,keep asking questions.
Conni -
as some participants have noted most doctors will not do anything other than what BI or FDA tells them. I do believe some of the people have doctors who recognize that we do know our own bodies and tell you to follow that. Most do not know enough about our disease to even understand what we are asking them. the healthcare here in florida for sure is to follow whatever medicare says,little interest in really helping or even suggesting something. Very unlike the doctors at Innova in Northern Va. who were full of ideas and suggestions. If your doctor doesnt make you happy find another one! You are paying them for a service,keep asking questions.
Conni -
love the gladiolus,crocus,forsthyia ,cherry blossoms,but oh my the allergies make my breathing so much worse. am on pred now 30 mg.day with exasperation trying to still do rehab but the allergies dont help a bit. i do claritin pill,azelestine 1% nasal spray and still have trouble,BUT soon it will be to hot and another set of troubles!!
conni b
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I am also very interested in laser therapy. Don’t want to increase collagen for sure. When we have used it in the dogs it was for healing wounds etc,so why is this different?
conni borwick
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I think the one reality here is that Ofev does not cure or fix anything,like breathing,it simply slows the progression of the disease. Doctors for sure will never do something the drug company doesn’t reccommend or fda approves. But as a thinking human being I can make choices on dosage.
Since I do not have ipf but rather hypersensitivity pneumonitis (they think)I have learned to research myself and trust my own judgement.
The doctors know little about my disease since it wasnt from a factory setting,and even less on what to do for it. So while I do believe Ofev can slow progression down,I am a realist about its other capabilities.
conni b
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I have been struggling with leg muscle pain for over a year. I exercise as much as I can with breathing issue. I kept wondering what else could be causing this weakness and discomfort. I rode horses for 40 years,was a runner, and ran agility with my dogs ,so my leg muscles were strong. Wish we could get a response from ofev.
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I was 75 yrs old when the pulmonologist at Shane’s hospital suggested I consider a transplant. I am on o2 at night and when I exercise. I read the entire protocol on their website and it was very complete. A day to day synopsis from evaluation to surgery.
I also have osteoporosis and I factored that in my decision to not go for an evaluation. As some have mentioned their is pretty much a five year survival.I felt that half that time would be spent in doctors office or hospital. Decided I would rather spend the time I have left ,and who knows how long that would be,training my dogs,seeing my grandkids etc.
but I would really have had a struggle if I were you Charlene,because you are so young. It would seem more plausible and hopefully before 5 years some new treatments will be around. I feel for you and such a hard decision.
conni borwick
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I use Chinese herbs from my doctor and have had minimal side effects from the Ofev when I take them first thing in the am.
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Same exercise Che ghung or qu gong ,many different spellings ? I also Find I am more relaxed and energetic. It also seems to help if I am having a bad coughing spell. Acupuncture also really helps me relax and depending on where she sticks me…can super energize me, very weird. I know you are supposed to do the pulmonary rehab exercises daily,I admit I do not. Sometimes the fatigue from this illness makes me really have to fight through mentally.
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My acupuncturist suggested Che hung similar to tai chi great tool. You can find videos on line I have 2 I like one is a full hour the other 20 minutes these are calming not just breathing. I also like a pranayama breathing class it should not make you anxious you should be comfortable with the inhale exhale at your own pace. There is no right or wrong. Some days I am better than other?but I do feel energized when I am done I actually find the pulmonary rehab exercises the most boring and will find any excuse,cleaning the litter box?even. What I am curious about is how often you do all the exercises. Breathing treamill,etc.
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@caneelbay1
I cannot get the article you referenced and am very interested in it. When I click on it it just says page not found. Also where are you getting your laser treatment
thank you so much for a really interesting thread
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hi,
I have been diagnosed with HP also and could not take cellcept or imuran. I have been on Ofev with minimal side effectsand the green tea extract., and am hopeful that the studies are correct and it slows the progression. I live in Florida, today the heat index was 110 degrees and we have really high humidity. I could only be outside for about 10 minutes because of the weather and pollens..ugh:(
I do get accupuncture and take chinese herbs,and practice breathing exercise, and have been doing that for 4 years.
I would suggest doing lots of boring research since this disease is not well researched like COPD.
Hang in there!
conni
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Pulmonary rehab was so boring for me ? I have always been active,gone to the gym,etc. all my life. Always my exercise was outside based. Training horses,then dogs,running agility,tracking etc. working my border collie on sheep…so my emotional painful struggle is trying to get excited about exercise inside?I have a couple of good programs from rehab, those exercises are ok,but what about the cardio? How do you manage that? I have gotten my wi out and tried using that,but lord it is boring!I have been doing some breathing exercises like Che gong but not every day. Do you try for 7000 steps? Do you do cardio and the rehab exercises? Then what about cleaning house? So I would love to hear how people handle their daily exercise
thanks in advance
conni
if you are wiped out one day do try the same the next day?the docs keep saying exercise