Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 JRTs and a rat terrier (and a husband-LOL) and my JRTs would hunt down a cat and never quit until they've killed it. Take care, Robyn Robyn, my nephew that lives with us has a JRT and we had to do a LOT of work with him but he leaves our cats alone. I don't know if he would if he had a JRT friend though! a C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Bruce ... well you know my big mouth! Or big fingers??? I want to jump in here and tell WHERE she can get an oximeter if she chooses to do so... www.portablenebs.com they cost $65 (or did) and be sure and get the FDA approved "yellow" one. Many of us here have one, me too and they work fine. You will feel better when you can check your blood O2. Ok, I'll shut up now. heee MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Intro You say sliced and diced and sectioned and x-rayed. Does that mean thediagnosis was made from CT scans? Who made it. All the waffling and the2 lpm continuous and everything just don't give me a comfortablefeeling. If not made at a teaching hospital with PF expertise, I'drecommend a second opinion.As to specifics of your comments. NSIP often has an autoimmune diseaseas an underlying cause. Hopefully you can get another opinion that feelsstronger one way or another. A rheumatologist should be able to figureout if there is an autoimmune disease.Ok, as to oxygen. It's rare that we would need the same flow all thetime. Most of us need one flow sitting and a very different one whenengaging in activity. Do you have an oximeter? If not, you need one.Also, have you had an overnight sleep oximeter to determine nighttimeuse. As to getting better, I can't say thats the case, but if you getthe right amount of oxygen and adjust to the disease, life can bebetter.The level of exhaustion you describe and the sweating don't sound likeyou're getting enough oxygen or certainly some issue. At 2 lpm you're atsuch a low amount that I wouldn't hope you'd feel as bad as youdescribe. Thats why I question the amount of oxygen and the overallmanagement.As to catching a cold, first you need to avoid germs in every possibleway. Second, you need to get immediate medical care when you catchanything.What medications are you on?>> I have been poked and prodded, x-rayed, given Dracula a couple ofgallons of blood,> sliced diced and sectioned, then pftd and walked into the floor forthe past year.>> Basically, last year I caught what was supposedly a cold. Then acouple of weeks later, it> was changed to must have been the flu. Then, oops, looks like groundglass, sorry it is> IPF. Maybe. Or NSIP. Maybe. Or NSIP with an autoimmune diseasecomponent. Several> months later, and the diagnosis is currently NSIP with an autoimmunedisease component> and a connective tissue disease with it. Personally, sounds like acatch all. Sorry if I sound> frustrated. I am. And scared.>> I was put on oxygen 3 months ago, 2 liters continuous. Thought that Idid not need it,> now not sure I can be without it. Not sure if I will ever get better.Does it get better?>> I work full time, am single parent of 2 kids still at home andcaregiver to my elderly> mother (although honestly, she is taking more care of me than I am ofher lately.)>> A couple of questions...> 1) I feel exhausted a lot of the time, to the point that my body seemsto made of lead. If> that normal? Yesterday I was able to do the dishes. It took an HOUR!then, I need a 2> hour nap. I am exhausted.>> 2) I start sweat buckets sporadically throughout the day. (no, notmenopause). I get> drenched. Is that part of this process?>> 3) Oh, yeah, and just for fun, I think that I am catching a cold!! So,what do I do now?> normally, not an issue. But with whatever I have, and the medicationsthat I am on what> should I do? Is there something that I should do or not do?>> Sorry for the long winded message.>> Later,> > DX 08 still pending??>> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 Thanks for the info, I will check on this. Later, > > Subject: Re: Re: Intro > To: Breathe-Support > Date: Monday, December 8, 2008, 12:31 PM > Bruce ... well you know my big mouth! Or big fingers??? I > want to jump in here and tell WHERE she can get an > oximeter if she chooses to do so... > www.portablenebs.com they cost $65 (or did) and be sure and > get the FDA approved " yellow " one. Many of us here > have one, me too and they work fine. You will feel better > when you can check your blood O2. > Ok, I'll shut up now. heee > MamaSher, age 70. IPF 3-06, OR. > Nasturtiums > Don't fret about tomorrow, God is already there! > > Re: Intro > > > > > > You say sliced and diced and sectioned and x-rayed. Does > that mean the > diagnosis was made from CT scans? Who made it. All the > waffling and the > 2 lpm continuous and everything just don't give me a > comfortable > feeling. If not made at a teaching hospital with PF > expertise, I'd > recommend a second opinion. > > As to specifics of your comments. NSIP often has an > autoimmune disease > as an underlying cause. Hopefully you can get another > opinion that feels > stronger one way or another. A rheumatologist should be > able to figure > out if there is an autoimmune disease. > > Ok, as to oxygen. It's rare that we would need the > same flow all the > time. Most of us need one flow sitting and a very > different one when > engaging in activity. Do you have an oximeter? If not, > you need one. > Also, have you had an overnight sleep oximeter to > determine nighttime > use. As to getting better, I can't say thats the > case, but if you get > the right amount of oxygen and adjust to the disease, > life can be > better. > > The level of exhaustion you describe and the sweating > don't sound like > you're getting enough oxygen or certainly some issue. > At 2 lpm you're at > such a low amount that I wouldn't hope you'd feel > as bad as you > describe. Thats why I question the amount of oxygen and > the overall > management. > > As to catching a cold, first you need to avoid germs in > every possible > way. Second, you need to get immediate medical care when > you catch > anything. > > What medications are you on? > > > > > > I have been poked and prodded, x-rayed, given > Dracula a couple of > gallons of blood, > > sliced diced and sectioned, then pftd and walked > into the floor for > the past year. > > > > Basically, last year I caught what was supposedly a > cold. Then a > couple of weeks later, it > > was changed to must have been the flu. Then, oops, > looks like ground > glass, sorry it is > > IPF. Maybe. Or NSIP. Maybe. Or NSIP with an > autoimmune disease > component. Several > > months later, and the diagnosis is currently NSIP > with an autoimmune > disease component > > and a connective tissue disease with it. Personally, > sounds like a > catch all. Sorry if I sound > > frustrated. I am. And scared. > > > > I was put on oxygen 3 months ago, 2 liters > continuous. Thought that I > did not need it, > > now not sure I can be without it. Not sure if I will > ever get better. > Does it get better? > > > > I work full time, am single parent of 2 kids still > at home and > caregiver to my elderly > > mother (although honestly, she is taking more care > of me than I am of > her lately.) > > > > A couple of questions... > > 1) I feel exhausted a lot of the time, to the point > that my body seems > to made of lead. If > > that normal? Yesterday I was able to do the dishes. > It took an HOUR! > then, I need a 2 > > hour nap. I am exhausted. > > > > 2) I start sweat buckets sporadically throughout the > day. (no, not > menopause). I get > > drenched. Is that part of this process? > > > > 3) Oh, yeah, and just for fun, I think that I am > catching a cold!! So, > what do I do now? > > normally, not an issue. But with whatever I have, > and the medications > that I am on what > > should I do? Is there something that I should do or > not do? > > > > Sorry for the long winded message. > > > > Later, > > > > DX 08 still pending?? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 I had xrays and ct done first. Then, sent for lung procedure (into lungs and snip a section, forgot the name.) then sent for lung biopsy. Numerous blood tests, pfts and walking tests. All done at Duke. Long list of medications that include cellcept (1000 mgs x 2 daily),and predisone (20 mg once a day started at 40). sulfametrazole 3x week, pantoprazole every day. also Metformin (1000), glimpiride (2 mg) lipitor (20) Basically, taking 19 pills a day. One year ago, I was on nothing. Huge change. Later, dx 08 pending. > > Subject: Re: Intro > To: Breathe-Support > Date: Sunday, December 7, 2008, 11:08 PM > > > You say sliced and diced and sectioned and x-rayed. Does > that mean the > diagnosis was made from CT scans? Who made it. All the > waffling and the > 2 lpm continuous and everything just don't give me a > comfortable > feeling. If not made at a teaching hospital with PF > expertise, I'd > recommend a second opinion. > > As to specifics of your comments. NSIP often has an > autoimmune disease > as an underlying cause. Hopefully you can get another > opinion that feels > stronger one way or another. A rheumatologist should be > able to figure > out if there is an autoimmune disease. > > Ok, as to oxygen. It's rare that we would need the same > flow all the > time. Most of us need one flow sitting and a very different > one when > engaging in activity. Do you have an oximeter? If not, you > need one. > Also, have you had an overnight sleep oximeter to determine > nighttime > use. As to getting better, I can't say thats the case, > but if you get > the right amount of oxygen and adjust to the disease, life > can be > better. > > The level of exhaustion you describe and the sweating > don't sound like > you're getting enough oxygen or certainly some issue. > At 2 lpm you're at > such a low amount that I wouldn't hope you'd feel > as bad as you > describe. Thats why I question the amount of oxygen and the > overall > management. > > As to catching a cold, first you need to avoid germs in > every possible > way. Second, you need to get immediate medical care when > you catch > anything. > > What medications are you on? > > > > > > > I have been poked and prodded, x-rayed, given Dracula > a couple of > gallons of blood, > > sliced diced and sectioned, then pftd and walked into > the floor for > the past year. > > > > Basically, last year I caught what was supposedly a > cold. Then a > couple of weeks later, it > > was changed to must have been the flu. Then, oops, > looks like ground > glass, sorry it is > > IPF. Maybe. Or NSIP. Maybe. Or NSIP with an autoimmune > disease > component. Several > > months later, and the diagnosis is currently NSIP with > an autoimmune > disease component > > and a connective tissue disease with it. Personally, > sounds like a > catch all. Sorry if I sound > > frustrated. I am. And scared. > > > > I was put on oxygen 3 months ago, 2 liters continuous. > Thought that I > did not need it, > > now not sure I can be without it. Not sure if I will > ever get better. > Does it get better? > > > > I work full time, am single parent of 2 kids still at > home and > caregiver to my elderly > > mother (although honestly, she is taking more care of > me than I am of > her lately.) > > > > A couple of questions... > > 1) I feel exhausted a lot of the time, to the point > that my body seems > to made of lead. If > > that normal? Yesterday I was able to do the dishes. It > took an HOUR! > then, I need a 2 > > hour nap. I am exhausted. > > > > 2) I start sweat buckets sporadically throughout the > day. (no, not > menopause). I get > > drenched. Is that part of this process? > > > > 3) Oh, yeah, and just for fun, I think that I am > catching a cold!! So, > what do I do now? > > normally, not an issue. But with whatever I have, and > the medications > that I am on what > > should I do? Is there something that I should do or > not do? > > > > Sorry for the long winded message. > > > > Later, > > > > DX 08 still pending?? > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 2008 Report Share Posted December 8, 2008 , Hi! Who do you see at Duke? I live in Durham (not very far from where you are in Garner). I see Dr. on at Duke. You've had a lung biopsy, what did they tell you about the results? It does sound as though they are treating you as though you have an autoimmune component. I have to tell you that I am amazed that you continue to work in spite of all this. I was diagnosed 2 and a half years ago and I was not able to go back to work after my diagnosis. I applied for SSDI and was approved a few months later. Working must take a tremendous amount out of you, I can hardly imagine. Since we're only an hour or so apart, I hope that at some point we can get together and have lunch. It would be great to meet you! Beth in North Carolina Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 "Maybe Christmas," he thought, "doesn't come from a store. Maybe Christmas... perhaps... means a little bit more." Dr. Seuss To: Breathe-Support Sent: Monday, December 8, 2008 11:37:05 PMSubject: Re: Re: Intro I had xrays and ct done first. Then, sent for lung procedure (into lungs and snip a section, forgot the name.) then sent for lung biopsy. Numerous blood tests, pfts and walking tests. All done at Duke. Long list of medications that include cellcept (1000 mgs x 2 daily),and predisone (20 mg once a day started at 40). sulfametrazole 3x week, pantoprazole every day. also Metformin (1000), glimpiride (2 mg) lipitor (20) Basically, taking 19 pills a day. One year ago, I was on nothing. Huge change. Later, dx 08 pending. > From: Bruce Moreland <brucemoreland@ gmail.com>> Subject: Re: Intro > To: Breathe-Support@ yahoogroups. com> Date: Sunday, December 7, 2008, 11:08 PM> > > You say sliced and diced and sectioned and x-rayed. Does> that mean the> diagnosis was made from CT scans? Who made it. All the> waffling and the> 2 lpm continuous and everything just don't give me a> comfortable> feeling. If not made at a teaching hospital with PF> expertise, I'd> recommend a second opinion.> > As to specifics of your comments. NSIP often has an> autoimmune disease> as an underlying cause. Hopefully you can get another> opinion that feels> stronger one way or another. A rheumatologist should be> able to figure> out if there is an autoimmune disease.> > Ok, as to oxygen. It's rare that we would need the same> flow all the> time. Most of us need one flow sitting and a very different> one when> engaging in activity. Do you have an oximeter? If not, you> need one.> Also, have you had an overnight sleep oximeter to determine> nighttime> use. As to getting better, I can't say thats the case,> but if you get> the right amount of oxygen and adjust to the disease, life> can be> better.> > The level of exhaustion you describe and the sweating> don't sound like> you're getting enough oxygen or certainly some issue.> At 2 lpm you're at> such a low amount that I wouldn't hope you'd feel> as bad as you> describe. Thats why I question the amount of oxygen and the> overall> management.> > As to catching a cold, first you need to avoid germs in> every possible> way. Second, you need to get immediate medical care when> you catch> anything.> > What medications are you on?> > > > >> > I have been poked and prodded, x-rayed, given Dracula> a couple of> gallons of blood,> > sliced diced and sectioned, then pftd and walked into> the floor for> the past year.> >> > Basically, last year I caught what was supposedly a> cold. Then a> couple of weeks later, it> > was changed to must have been the flu. Then, oops,> looks like ground> glass, sorry it is> > IPF. Maybe. Or NSIP. Maybe. Or NSIP with an autoimmune> disease> component. Several> > months later, and the diagnosis is currently NSIP with> an autoimmune> disease component> > and a connective tissue disease with it. Personally,> sounds like a> catch all. Sorry if I sound> > frustrated. I am. And scared.> >> > I was put on oxygen 3 months ago, 2 liters continuous.> Thought that I> did not need it,> > now not sure I can be without it. Not sure if I will> ever get better.> Does it get better?> >> > I work full time, am single parent of 2 kids still at> home and> caregiver to my elderly> > mother (although honestly, she is taking more care of> me than I am of> her lately.)> >> > A couple of questions...> > 1) I feel exhausted a lot of the time, to the point> that my body seems> to made of lead. If> > that normal? Yesterday I was able to do the dishes. It> took an HOUR!> then, I need a 2> > hour nap. I am exhausted.> >> > 2) I start sweat buckets sporadically throughout the> day. (no, not> menopause). I get> > drenched. Is that part of this process?> >> > 3) Oh, yeah, and just for fun, I think that I am> catching a cold!! So,> what do I do now?> > normally, not an issue. But with whatever I have, and> the medications> that I am on what> > should I do? Is there something that I should do or> not do?> >> > Sorry for the long winded message.> >> > Later,> > > > DX 08 still pending??> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 9, 2008 Report Share Posted December 9, 2008 ... see there, you've got the hang of it already! Vision: I have to admit, I've had vision problems for years. Especially my right eye. Finally had cataract surgery (cataract's were not so bad but I kept complaining about blurry vision). I STILL have blurry vision in my right eye! Have been back 2x to check it out...new eyeglass Rx last time and still have blurry vision in right eye. Go figure. I don't think everything we feel (or see) is our PF. It became a good ~whipping post~ for me and I had to tell myself to take it easy. I have enough chronic health problems...don't look for more. I like reasons, maybe you do too. lol I'd surely suggest when you are concerned about something, ask your dr. Take care and keep on keepin' on! MamaSher, age 70. IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! Re: Intro > > > > > > You say sliced and diced and sectioned and x-rayed. Does> that mean the> diagnosis was made from CT scans? Who made it. All the> waffling and the> 2 lpm continuous and everything just don't give me a> comfortable> feeling. If not made at a teaching hospital with PF> expertise, I'd> recommend a second opinion.> > As to specifics of your comments. NSIP often has an> autoimmune disease> as an underlying cause. Hopefully you can get another> opinion that feels> stronger one way or another. A rheumatologist should be> able to figure> out if there is an autoimmune disease.> > Ok, as to oxygen. It's rare that we would need the> same flow all the> time. Most of us need one flow sitting and a very> different one when> engaging in activity. Do you have an oximeter? If not,> you need one.> Also, have you had an overnight sleep oximeter to> determine nighttime> use. As to getting better, I can't say thats the> case, but if you get> the right amount of oxygen and adjust to the disease,> life can be> better.> > The level of exhaustion you describe and the sweating> don't sound like> you're getting enough oxygen or certainly some issue.> At 2 lpm you're at> such a low amount that I wouldn't hope you'd feel> as bad as you> describe. Thats why I question the amount of oxygen and> the overall> management.> > As to catching a cold, first you need to avoid germs in> every possible> way. Second, you need to get immediate medical care when> you catch> anything.> > What medications are you on?> > > >> > I have been poked and prodded, x-rayed, given> Dracula a couple of> gallons of blood,> > sliced diced and sectioned, then pftd and walked> into the floor for> the past year.> >> > Basically, last year I caught what was supposedly a> cold. Then a> couple of weeks later, it> > was changed to must have been the flu. Then, oops,> looks like ground> glass, sorry it is> > IPF. Maybe. Or NSIP. Maybe. Or NSIP with an> autoimmune disease> component. Several> > months later, and the diagnosis is currently NSIP> with an autoimmune> disease component> > and a connective tissue disease with it. Personally,> sounds like a> catch all. Sorry if I sound> > frustrated. I am. And scared.> >> > I was put on oxygen 3 months ago, 2 liters> continuous. Thought that I> did not need it,> > now not sure I can be without it. Not sure if I will> ever get better.> Does it get better?> >> > I work full time, am single parent of 2 kids still> at home and> caregiver to my elderly> > mother (although honestly, she is taking more care> of me than I am of> her lately.)> >> > A couple of questions...> > 1) I feel exhausted a lot of the time, to the point> that my body seems> to made of lead. If> > that normal? Yesterday I was able to do the dishes.> It took an HOUR!> then, I need a 2> > hour nap. I am exhausted.> >> > 2) I start sweat buckets sporadically throughout the> day. (no, not> menopause). I get> > drenched. Is that part of this process?> >> > 3) Oh, yeah, and just for fun, I think that I am> catching a cold!! So,> what do I do now?> > normally, not an issue. But with whatever I have,> and the medications> that I am on what> > should I do? Is there something that I should do or> not do?> >> > Sorry for the long winded message.> >> > Later,> > > > DX 08 still pending??> >> > >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I am with Dr. Meltzer. Love him. He is very detailed, clear and willing to repeat things for me. He takes his time and makes me feels as if he has all the time in the world for me. I never feel rushed. Regarding the results of the lung biopsy, apparently has signs of both NSIP and IPF. So, we are working under assumption that it will respond to all the drugs that they are giving me. Time will tell, I guess. I would love to get together and meet you. Right now, I am sick (virus,, cold or something, coughing, hacking congested and miserable.) so, perhaps in January? Your call. Let's plan on it! Later, dx 08 pending > > > From: Bruce Moreland > > Subject: Re: Intro > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, December 7, 2008, 11:08 PM > > > > > > You say sliced and diced and sectioned and x-rayed. > Does > > that mean the > > diagnosis was made from CT scans? Who made it. All the > > waffling and the > > 2 lpm continuous and everything just don't give me > a > > comfortable > > feeling. If not made at a teaching hospital with PF > > expertise, I'd > > recommend a second opinion. > > > > As to specifics of your comments. NSIP often has an > > autoimmune disease > > as an underlying cause. Hopefully you can get another > > opinion that feels > > stronger one way or another. A rheumatologist should > be > > able to figure > > out if there is an autoimmune disease. > > > > Ok, as to oxygen. It's rare that we would need the > same > > flow all the > > time. Most of us need one flow sitting and a very > different > > one when > > engaging in activity. Do you have an oximeter? If not, > you > > need one. > > Also, have you had an overnight sleep oximeter to > determine > > nighttime > > use. As to getting better, I can't say thats the > case, > > but if you get > > the right amount of oxygen and adjust to the disease, > life > > can be > > better. > > > > The level of exhaustion you describe and the sweating > > don't sound like > > you're getting enough oxygen or certainly some > issue. > > At 2 lpm you're at > > such a low amount that I wouldn't hope you'd > feel > > as bad as you > > describe. Thats why I question the amount of oxygen > and the > > overall > > management. > > > > As to catching a cold, first you need to avoid germs > in > > every possible > > way. Second, you need to get immediate medical care > when > > you catch > > anything. > > > > What medications are you on? > > > > > > > > > > > > I have been poked and prodded, x-rayed, given > Dracula > > a couple of > > gallons of blood, > > > sliced diced and sectioned, then pftd and walked > into > > the floor for > > the past year. > > > > > > Basically, last year I caught what was supposedly > a > > cold. Then a > > couple of weeks later, it > > > was changed to must have been the flu. Then, > oops, > > looks like ground > > glass, sorry it is > > > IPF. Maybe. Or NSIP. Maybe. Or NSIP with an > autoimmune > > disease > > component. Several > > > months later, and the diagnosis is currently NSIP > with > > an autoimmune > > disease component > > > and a connective tissue disease with it. > Personally, > > sounds like a > > catch all. Sorry if I sound > > > frustrated. I am. And scared. > > > > > > I was put on oxygen 3 months ago, 2 liters > continuous. > > Thought that I > > did not need it, > > > now not sure I can be without it. Not sure if I > will > > ever get better. > > Does it get better? > > > > > > I work full time, am single parent of 2 kids > still at > > home and > > caregiver to my elderly > > > mother (although honestly, she is taking more > care of > > me than I am of > > her lately.) > > > > > > A couple of questions... > > > 1) I feel exhausted a lot of the time, to the > point > > that my body seems > > to made of lead. If > > > that normal? Yesterday I was able to do the > dishes. It > > took an HOUR! > > then, I need a 2 > > > hour nap. I am exhausted. > > > > > > 2) I start sweat buckets sporadically throughout > the > > day. (no, not > > menopause). I get > > > drenched. Is that part of this process? > > > > > > 3) Oh, yeah, and just for fun, I think that I am > > catching a cold!! So, > > what do I do now? > > > normally, not an issue. But with whatever I have, > and > > the medications > > that I am on what > > > should I do? Is there something that I should do > or > > not do? > > > > > > Sorry for the long winded message. > > > > > > Later, > > > > > > DX 08 still pending?? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 10, 2008 Report Share Posted December 10, 2008 I am with Dr. Meltzer. Love him. He is very detailed, clear and willing to repeat things for me. He takes his time and makes me feels as if he has all the time in the world for me. I never feel rushed. Regarding the results of the lung biopsy, apparently has signs of both NSIP and IPF. So, we are working under assumption that it will respond to all the drugs that they are giving me. Time will tell, I guess. I would love to get together and meet you. Right now, I am sick (virus,, cold or something, coughing, hacking congested and miserable.) so, perhaps in January? Your call. Let's plan on it! Later, dx 08 pending > > > From: Bruce Moreland > > Subject: Re: Intro > > To: Breathe-Support@ yahoogroups. com > > Date: Sunday, December 7, 2008, 11:08 PM > > > > > > You say sliced and diced and sectioned and x-rayed. > Does > > that mean the > > diagnosis was made from CT scans? Who made it. All the > > waffling and the > > 2 lpm continuous and everything just don't give me > a > > comfortable > > feeling. If not made at a teaching hospital with PF > > expertise, I'd > > recommend a second opinion. > > > > As to specifics of your comments. NSIP often has an > > autoimmune disease > > as an underlying cause. Hopefully you can get another > > opinion that feels > > stronger one way or another. A rheumatologist should > be > > able to figure > > out if there is an autoimmune disease. > > > > Ok, as to oxygen. It's rare that we would need the > same > > flow all the > > time. Most of us need one flow sitting and a very > different > > one when > > engaging in activity. Do you have an oximeter? If not, > you > > need one. > > Also, have you had an overnight sleep oximeter to > determine > > nighttime > > use. As to getting better, I can't say thats the > case, > > but if you get > > the right amount of oxygen and adjust to the disease, > life > > can be > > better. > > > > The level of exhaustion you describe and the sweating > > don't sound like > > you're getting enough oxygen or certainly some > issue. > > At 2 lpm you're at > > such a low amount that I wouldn't hope you'd > feel > > as bad as you > > describe. Thats why I question the amount of oxygen > and the > > overall > > management. > > > > As to catching a cold, first you need to avoid germs > in > > every possible > > way. Second, you need to get immediate medical care > when > > you catch > > anything. > > > > What medications are you on? > > > > > > > > > > > > I have been poked and prodded, x-rayed, given > Dracula > > a couple of > > gallons of blood, > > > sliced diced and sectioned, then pftd and walked > into > > the floor for > > the past year. > > > > > > Basically, last year I caught what was supposedly > a > > cold. Then a > > couple of weeks later, it > > > was changed to must have been the flu. Then, > oops, > > looks like ground > > glass, sorry it is > > > IPF. Maybe. Or NSIP. Maybe. Or NSIP with an > autoimmune > > disease > > component. Several > > > months later, and the diagnosis is currently NSIP > with > > an autoimmune > > disease component > > > and a connective tissue disease with it. > Personally, > > sounds like a > > catch all. Sorry if I sound > > > frustrated. I am. And scared. > > > > > > I was put on oxygen 3 months ago, 2 liters > continuous. > > Thought that I > > did not need it, > > > now not sure I can be without it. Not sure if I > will > > ever get better. > > Does it get better? > > > > > > I work full time, am single parent of 2 kids > still at > > home and > > caregiver to my elderly > > > mother (although honestly, she is taking more > care of > > me than I am of > > her lately.) > > > > > > A couple of questions... > > > 1) I feel exhausted a lot of the time, to the > point > > that my body seems > > to made of lead. If > > > that normal? Yesterday I was able to do the > dishes. It > > took an HOUR! > > then, I need a 2 > > > hour nap. I am exhausted. > > > > > > 2) I start sweat buckets sporadically throughout > the > > day. (no, not > > menopause). I get > > > drenched. Is that part of this process? > > > > > > 3) Oh, yeah, and just for fun, I think that I am > > catching a cold!! So, > > what do I do now? > > > normally, not an issue. But with whatever I have, > and > > the medications > > that I am on what > > > should I do? Is there something that I should do > or > > not do? > > > > > > Sorry for the long winded message. > > > > > > Later, > > > > > > DX 08 still pending?? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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