Re: Re: Oxygen update and changes in my symptoms

[Guest guest]

Bruce, you are knowledgeable when it comes to pf, my uncle died in june from pf and a close friend was just diagnoised with pf but will not use his o2. he is suppose to use it 24-7. my aunt is 76 and had tb when she was young, 23 i think and is not on o2 and smokes.the pr tech told her just be careful, which i do not think she means smoking and she'll be okay.my question is what happens when you do not use your o2? does your pf get worse? and why does fibrous tissue from the tb not progress. there has been no progression since she had tb.the scarring was from it and is only on spiriva

sp asthma andph

Subject: Re: Oxygen update and changes in my symptomsTo: Breathe-Support Date: Wednesday, September 16, 2009, 11:21 AM

nneI'm sure Columbia is requesting you forward them records. One thing manydon't think about is the biopsy slides. Especially with your mixeddiagnosis they will want to look at them with their own Pathologist.So glad the oxygen situation has been resolved. Oxygen companies arelike so many other businesses, depersonalization and those without theknowledge or the authority trying to make decisions as if they did. Nowto the manager, you're a real human being and you're important.As to the sleep issue you discussed the only way to know is an overnightoximeter. If that shows no problem or an adjustment doesn't help then itwill be time to see a sleep specialist and have a full sleep study.>> Hi everyone,> It's nne- I haven't posted in awhile. My portable O2 problem wasFINALLY solved last week. After repeated calls to my local Apria office(fyi- took your advice Bruce and did not talk to cust service asked formanager) I now have my Helios Marathon. They wanted the little Helios300 back and I asked if I could keep it since it is so light I use thatone for the gym- I even asked manager how much more it would cost me torent it along with Marathon. He said he would let me keep it AT NO EXTRACHARGE! I was giddy with happiness, so now Pink Joyce I too have a babyand toddler!> And now for my symptoms changing- I have developed problems sleepingsimilar to what was happening before I got O2 at night- I wake up a lotand feel like I haven't slept at all in the morning. This morning, Ialmost fell asleep driving to

work. Does this mean I need more than 2LPM at night? I have also had more of a cough that is not dry butmucousy- I know my lung biopsy diagnosis indicated I had inflammation;sort of a combination of UIP, NSIP and hypersensitivity pneumonitis( ?)-so does this mean since I am developing cough am I getting worse???Cannot wait for Columbia evaluation on October 1-maybe I can get someanswers. I am only on prednisone 10 mgs and DO NOT want to increase thisagain. Would NAC help? - nne, ILD 6/09>

[Guest guest]

Sharon, this sounds like ask a Dr question. Preferably her Dr. about the TB scaring. As to not using 02, that is just crazy. When our saturation drops our cells in our bodies begin to die. The heart and brain,kidneys.. It is very important to keep our 02 up above 90. If he was told to use 02 24/7 I hope he has an oximeter to keep a watch on it. This disease is nothing to be second guessing what we are told by our Dr's. It could shorten our lives by a lot.. Love & Prayers, PeggyFlorida, IPF/UIP 2004"I believe that friends are quiet angels who lift us to our feet, when our wings have trouble remembering how to fly." Bruce, you are knowledgeable when it comes to pf, my uncle died in june from pf and a close friend was just diagnoised with pf but will not use his o2. he is suppose to use it 24-7. my aunt is 76 and had tb when she was young, 23 i think and is not on o2 and smokes.the pr tech told her just be careful, which i do not think she means smoking and she'll be okay.my question is what happens when you do not use your o2? does your pf get worse? and why does fibrous tissue from the tb not progress. there has been no progression since she had tb.the scarring was from it and is only on spiriva sp asthma andph From: brucemoreland <brucemoreland (AT) gmail (DOT) com>Subject: Re: Oxygen update and changes in my symptomsTo: Breathe-Support Date: Wednesday, September 16, 2009, 11:21 AM nneI'm sure Columbia is requesting you forward them records. One thing manydon't think about is the biopsy slides. Especially with your mixeddiagnosis they will want to look at them with their own Pathologist.So glad the oxygen situation has been resolved. Oxygen companies arelike so many other businesses, depersonalization and those without theknowledge or the authority trying to make decisions as if they did. Nowto the manager, you're a real human being and you're important.As to the sleep issue you discussed the only way to know is an overnightoximeter. If that shows no problem or an adjustment doesn't help then itwill be time to see a sleep specialist and have a full sleep study.>> Hi everyone,> It's nne- I haven't posted in awhile. My portable O2 problem wasFINALLY solved last week. After repeated calls to my local Apria office(fyi- took your advice Bruce and did not talk to cust service asked formanager) I now have my Helios Marathon. They wanted the little Helios300 back and I asked if I could keep it since it is so light I use thatone for the gym- I even asked manager how much more it would cost me torent it along with Marathon. He said he would let me keep it AT NO EXTRACHARGE! I was giddy with happiness, so now Pink Joyce I too have a babyand toddler!> And now for my symptoms changing- I have developed problems sleepingsimilar to what was happening before I got O2 at night- I wake up a lotand feel like I haven't slept at all in the morning. This morning, Ialmost fell asleep driving to work. Does this mean I need more than 2LPM at night? I have also had more of a cough that is not dry butmucousy- I know my lung biopsy diagnosis indicated I had inflammation;sort of a combination of UIP, NSIP and hypersensitivity pneumonitis( ?)-so does this mean since I am developing cough am I getting worse???Cannot wait for Columbia evaluation on October 1-maybe I can get someanswers. I am only on prednisone 10 mgs and DO NOT want to increase thisagain. Would NAC help? - nne, ILD 6/09>

[Guest guest]

Hi Bruce, when you say painful how do you mean that. A constant pain or a ache. my friend complains of a pain across his chest sometimes when he is working in his yard. I to tell him just to run his o2 hose out there but he is shy about that.

sharon p asthma ,ph

Subject: Re: Oxygen update and changes in my symptomsTo: Breathe-Support Date: Wednesday, September 16, 2009, 1:19 PM

SharonThe biggest single risk of not using your oxygen is PulmonaryHypertension and/or damage to the right side of your heart. We're all atrisk. Some from pre-diagnosis. But every time we have undersaturation weincrease the risk. Pulmonary Hypertension is more painful than PF and ifit develops unchecked will lead to a quicker and worse death. Caughtearly Tracleer and Revatio often work. Caught late you go to Remodulinor then Flolan which is not a pleasant way to live.I was just tested for PH and finding I don't have it is such a relief. Ido have some right heart abnormalities but thats common with oxygenissues. The wording is a dilated (enlarged) right ventricle. There's noway to be sure, but had I not been on oxygen for two years it likelywould be in much worse condition. How many people die of "heart failure"when the underlying cause of underoxygenation was never diagnosed?So,

simply, your heart is the reason for medically needing oxygen. Yourcomfort is the clinical reason. As to what it will do for PF, it's notthere to reduce the fibrosis or slow it. But, it does have a veryindirect impact on your lungs. You get the maximum use out of them andthrough deep and good breathing keep them functioning better. Youmaximize your use of their capacity.Now as to those you are talking about, I don't know their oxygenrequirements. Only way to know is through using an oximeter. Perhapsthey've stabilized if TB was behind it. Perhaps their saturation haseven improved. But I stick to the standard that I'm not going below 90%and increasing the risk of PH. The only reminder of that I need is tothink about Joyce Dalton's final months.As to continuing to smoke with oxygen, that just shows the horrible holdthe addiction has. I am as anti-smoking as anyone you'll ever meet socan't

discuss it very objectively. However, I will say one thing. It'sthat person's right but not their right to put others at risk. Anyoneelse living in the house is as substantial risk. The deaths we've readabout from house fires of people on oxygen have all come fromcigarettes. And, its not just been the oxygen user. There have been somerefusals to provide oxygen to smokers in Canada although its not thegeneral practice and there are even a few oxygen providers in the US whowill not do so. Generally they are required to. If a person chooses toendanger themselves over this addiction, then I do feel so bad for them,but thats their right. If they are endangering others, then I have notolerance. It's just not their right to do so.> >> > Hi everyone,> > It's nne- I haven't posted in awhile. My portable O2 problemwas> FINALLY solved last week. After repeated calls to my local Apriaoffice> (fyi- took your advice Bruce and did not talk to cust service askedfor> manager) I now have my Helios Marathon. They wanted the little Helios> 300 back and I asked if I could keep it since it is so light I usethat> one for the gym- I even asked manager how much more it would cost meto> rent it along with Marathon. He said he

would let me keep it AT NOEXTRA> CHARGE! I was giddy with happiness, so now Pink Joyce I too have ababy> and toddler!> > And now for my symptoms changing- I have developed problems sleeping> similar to what was happening before I got O2 at night- I wake up alot> and feel like I haven't slept at all in the morning. This morning, I> almost fell asleep driving to work. Does this mean I need more than 2> LPM at night? I have also had more of a cough that is not dry but> mucousy- I know my lung biopsy diagnosis indicated I had inflammation;> sort of a combination of UIP, NSIP and hypersensitivity pneumonitis(?)-> so does this mean since I am developing cough am I getting worse???> Cannot wait for Columbia evaluation on October 1-maybe I can get some> answers. I am only on prednisone 10 mgs and DO NOT want to increasethis> again. Would NAC help? -

nne, ILD 6/09> >>