Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 that hard work you have been doing since your hospital stay is keeping you here with us. As if you didn't have enough to be thankful for, here comes that good news just in time for Thanksgiving. That is one more reminder that how we feel means as much or more than how medical science sees us. Have a great Thanksgiving Beth. JerryWho believes that hard times help us appreciate the good times even more. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Oh MB that is the best news yet.. God is so Good. I know your Dr. told you how good you are looking.. I am so proud of you.Peggy, FloridaIPF 2004Always praying for my PEEPS----- " Beth" wrote: > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. I am very happy this afternoon. Thankfully yours!> Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Wonderful news! I am happy that you are stable. Later,IPF/NSIP 08 NCSubject: Good newsTo: Breathe-Support Date: Monday, November 23, 2009, 4:53 PM Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. I am very happy this afternoon. Thankfully yours! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Peggy (and everyone else) Thanks for the good wishes. It's such a relief to know that all is well for another little while. I know that none of us takes this for granted. For tonight this is a good feeling to know that all is relatively well. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Mon, November 23, 2009 6:52:06 PMSubject: Re: Good news Oh MB that is the best news yet.. God is so Good. I know your Dr. told you how good you are looking.. I am so proud of you.Peggy, FloridaIPF 2004Always praying for my PEEPS----- " Beth" <mbmurtha (AT) yahoo (DOT) com> wrote: > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. I am very happy this afternoon. Thankfully yours!> Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 GREAT news, Beth. Wonderful to hear. B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. I am very happy this afternoon. Thankfully yours!> Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Fantastic news MB.....enjoy your worry free zone.... Love, > >  > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > I am very happy this afternoon. > Thankfully yours!> >  > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08>  >  > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Good news. What a blessing on Thanksgiving week! Gale To: Breathe-Support Sent: Mon, November 23, 2009 3:53:41 PMSubject: Good news Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. I am very happy this afternoon. Thankfully yours! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 HI HI HI GINA, GOSH I HAVE BEEN WORRIED ABOUT YOU. HAVE YOU HEALED up like new ? Stupid cap lock..sorry.Tell me what you have been doing. Have you been traveling again? I have missed you.I have looked on skype a couple times to catch you. I will one of these days.I am doing real well. I am so sorry we didn't have a clear connection on Skype from Chattanooga but what a thrill for us all. I'm gonna look and see if your on. If not I'll catch you later.Much Love and warm hugs to you.Love & PrayersPeggy, FloridaIPF 2004----- "grangi49" wrote: > > Fantastic news MB.....enjoy your worry free zone.... Love, > > > >  > > > > > > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > > I am very happy this afternoon. > > Thankfully yours!> > >  > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >  > >  > > > > > > >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Beth, I am so glad that your tests are where they should be: stable. That is a great word! I had PFTs once that were a fluke for me during the Sildenafil study. The nurse attributed it to the seasonal allergies (in the spring at that time) because the next time I was back where I should have been. Toodles! Jane UIP/IPF 12/1998 Dalton, Georgia aka pianolady_musicgirl > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > I am very happy this afternoon. > Thankfully yours! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Hi HRH..I'm just back from 4 days in Brisbane on the Medical Testing Merri-go-Round....they start investigating one thing & it leads to a whole lots of other things! Right now if I was a car I wouldn't pass Rego! BUT......I feel just fine....still Deaf in my left ear...hearing horrid noises...balance all over the shop but HeY..BASICALLY I'm great! The latest is that as a result of searching for why I've gone deaf they looked in my Brain..found no reason for the Deafness but Hey I've got White Matter Flares all over the place..... So off to a Neurologist who orders all these expensive tests so now guess what.... they found I have a Hole in my Heart...been there since Birth....now I've got to do MORE blinkin' tets so they can work out whether to close it or not! ( a Transoesophageal Ecocardiogram) All because my EAR went Whoopy! Still don't know why I went DEAF! Oh & I've also got to go & find out why I'm walking around like some inebriated sot! That involves shoving things down my ears, hot & cold water & the like while I wear funny goggles & get sent into 3D land! Oh & expect to feel chunderous & you'll probably chuck so don't eat breakfast! Really looking forward to that day! But I feel GREAT...weird isn't it! I'll get my Toshi Roamer set up for tomorrow & we can give it a whirl....I'd love to have a chin wag! Until then, love, > > > >  > > > > > > > > > > > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > > > I am very happy this afternoon. > > > Thankfully yours! > > > >  > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > >  > > >  > > > > > > > > > > > > > > > > > > > > >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 GREAT news, Beth. Wonderful to hear. B Barbara McD PF--Sept 08; Sjogren's--Apr 09; Reynaud's--seems like forever Beautiful Western NC Attitude is everything. > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. I am very happy this afternoon. Thankfully yours!> Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 , I can relate to the balance problems!!! What are they doing with the ear stuff? Yucky! Z fibriotic NSIP/05 Z 65, fibriotic NSIP/05/PA And “mild” PH/10/07 No, NSIP was not self-inflicted…I never smoked! Potter, reader,carousel lover and MomMom to Darah and Sara “I’m gonna be iron like a lion in Zion” Bob Marley Vinca Minor-periwinkle is my flower grangi49 wrote: Hi HRH..I'm just back from 4 days in Brisbane on the Medical Testing Merri-go-Round....they start investigating one thing & it leads to a whole lots of other things! Right now if I was a car I wouldn't pass Rego! BUT......I feel just fine....still Deaf in my left ear...hearing horrid noises...balance all over the shop but HeY..BASICALLY I'm great! The latest is that as a result of searching for why I've gone deaf they looked in my Brain..found no reason for the Deafness but Hey I've got White Matter Flares all over the place..... So off to a Neurologist who orders all these expensive tests so now guess what.... they found I have a Hole in my Heart...been there since Birth....now I've got to do MORE blinkin' tets so they can work out whether to close it or not! ( a Transoesophageal Ecocardiogram) All because my EAR went Whoopy! Still don't know why I went DEAF! Oh & I've also got to go & find out why I'm walking around like some inebriated sot! That involves shoving things down my ears, hot & cold water & the like while I wear funny goggles & get sent into 3D land! Oh & expect to feel chunderous & you'll probably chuck so don't eat breakfast! Really looking forward to that day! But I feel GREAT...weird isn't it! I'll get my Toshi Roamer set up for tomorrow & we can give it a whirl....I'd love to have a chin wag! Until then, love, > > > >  > > > > > > > > > > > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > > > I am very happy this afternoon. > > > Thankfully yours! > > > >  > > > Beth > > > Moderator > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > >  > > >  > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 23, 2009 Report Share Posted November 23, 2009 Nice to get 'good news' from you MB, Chill out ad enjoy the good period! Geeta > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > I am very happy this afternoon. > Thankfully yours! > > Beth > Moderator > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Gita, Thanks! It's funny I didn't realize how stressed I was feeling about this appointment until it was over. I'm fortunate in that the doctor I see is very kind and easy to talk to. That alone makes the appointments much more pleasant! Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tue, November 24, 2009 2:17:32 AMSubject: Re: Good news Nice to get 'good news' from you MB,Chill out ad enjoy the good period!Geeta>> Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > I am very happy this afternoon. > Thankfully yours!> > Beth> Moderator> Fibrotic NSIP 06/06 Dermatomyositis 11/08> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 I'm assuming they have checked for Cholesteotoma in your ear. I developed it in 1997 and required ear surgery to remove it. I do hope they are able to pinpoint things for you. I know its got to be very stressful. > > > > >  > > > > > > > > > > > > > > > > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! My > diffusion is back where it had been (last time's lousy result was > a fluke) and I remain stable. My next appointment isn't till March > so I've got a few months to chill. > > > > I am very happy this afternoon. > > > > Thankfully yours! > > > > >  > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > >  > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Hi , A couple of years ago my friend was not feeling well and after many tests they found out that he had 4 holes in his heart. All four were between the two chambers, so O2 Blood was leaking with the used blood, I guess. But he had this procedure where they went through his leg artery and patch the 4 holes. He was in and out of the hospital the same day and felt better than he had in years after just a few days. It was a new procedure at the time, where before they would have to do open heat surgery. Hopefully they can fix it as easy as it was for him. Good Luck. Dave, 43, Miami, UIP 11/09 > > > > >  > > > > > > > > > > > > > > > > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! My > diffusion is back where it had been (last time's lousy result was > a fluke) and I remain stable. My next appointment isn't till March > so I've got a few months to chill. > > > > I am very happy this afternoon. > > > > Thankfully yours! > > > > >  > > > > Beth > > > > Moderator > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > >  > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Beth, I am SO happy to hear about your good news. You definitely deserve all the good news you can get. I'm also happy to hear that you'll be able to share it with family on Thanksgiving. Congratulations to everyone else who has recently gotten good news. So many seem to be getting negative news lately & I'm sorry to hear about that. It's so hard to respond to everyone, but please know that my best wishes & prayers are with you all. Just learned today that I tested positive for sleep apnea even though I didn't think I slept long enough for them to get a reading. Is CPAP the only treatment? I'm so worried that I won't be able to sleep with that on. I won't find out what they plan until Dec. 22, which is the earliest they can get me in. Guess a lot of people are testing positive these days. I finally put down my foot & insisted to my pulmodoc that he refer me to pulmonary rehab somewhere even if he has to go outside the Kaiser group. Turns out Kaiser does have some kind of rehab program for COPD patients but nothing for PF patients. Since you all said something is better than nothing, I got him to refer me to that program, but the next session doesn't start until Feb or March. And Joyce, as for COPD vs PF, Bruce is absolutely correct. COPD can include all kinds of things, from chronic bronchitis to asthma to emphysema. Many people can live a fairly normal life with COPD for a long time. But it can also be terminal. Many people don't think of asthma too seriously, but people can actually die suddenly from an attack. As for emphysema, my best friend is in the last stages right now & not even expected to last until New Year's. But he's had it for at least 12 years & still been active on oxygen for half of that time. Apparently, they use lower levels though. He said his equipment can't even be turned higher than 5L while I know some of you have gone up to 10L at times. Don't think any of them are given 3-5 years left to live either, like us. Cees, S Calif IPF/UIP 10/08 > > > > Another round of pft's and a visit to my pulmo....I'm stable! My diffusion is back where it had been (last time's lousy result was a fluke) and I remain stable. My next appointment isn't till March so I've got a few months to chill. > > I am very happy this afternoon. > > Thankfully yours! > >  > > Beth > > Moderator > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Cees, Your friend can order a 10L concentrator from the 02 supplier. They also have the regulators for tanks that go to 15L. Peggy, FloridaIPF 2004Always praying for my PEEPS----- "ceesnews" wrote: > > > > Beth,> I am SO happy to hear about your good news. You definitely deserve all the good news you can get. I'm also happy to hear that you'll be able to share it with family on Thanksgiving.> > Congratulations to everyone else who has recently gotten good news. So many seem to be getting negative news lately & I'm sorry to hear about that. It's so hard to respond to everyone, but please know that my best wishes & prayers are with you all.> > Just learned today that I tested positive for sleep apnea even though I didn't think I slept long enough for them to get a reading. Is CPAP the only treatment? I'm so worried that I won't be able to sleep with that on. I won't find out what they plan until Dec. 22, which is the earliest they can get me in. Guess a lot of people are testing positive these days.> > I finally put down my foot & insisted to my pulmodoc that he refer me to pulmonary rehab somewhere even if he has to go outside the Kaiser group. Turns out Kaiser does have some kind of rehab program for COPD patients but nothing for PF patients. Since you all said something is better than nothing, I got him to refer me to that program, but the next session doesn't start until Feb or March.> > And Joyce, as for COPD vs PF, Bruce is absolutely correct. COPD can include all kinds of things, from chronic bronchitis to asthma to emphysema. Many people can live a fairly normal life with COPD for a long time. But it can also be terminal.> > Many people don't think of asthma too seriously, but people can actually die suddenly from an attack. As for emphysema, my best friend is in the last stages right now & not even expected to last until New Year's. But he's had it for at least 12 years & still been active on oxygen for half of that time. Apparently, they use lower levels though. He said his equipment can't even be turned higher than 5L while I know some of you have gone up to 10L at times.> > Don't think any of them are given 3-5 years left to live either, like us.> > Cees, S Calif> IPF/UIP 10/08> > > >> > Gita,> > Thanks! It's funny I didn't realize how stressed I was feeling about this appointment until it was over. I'm fortunate in that the doctor I see is very kind and easy to talk to. That alone makes the appointments much more pleasant!> >  > > Beth> > Moderator> > Fibrotic NSIP 06/06 Dermatomyositis 11/08> >  > >  > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 Hi Bruce, My problem is in the Inner Ear...Cholesteomas are in the middle ear I think. I've had MRI scans to rule out Neuroma but beyond that it's a bit of a mystery. I don't think there are diagnostic tools to investigate beyond this. It's diagnosed as Sudden Onset Sensorineural Hearing Loss/Deficit. It shows up very clearly in the Hearing Tests. Some sort of inflammatory onset along the 8th Auditory Hearing Nerve Structure. It has to be diagnosed within a week or so of onset for Prednisone to have any chance of helping it. My usual GP was away & the one I saw totally missed it! I went off to Tassie for last Christmas with antibiotics ...I was away ....the antibiotics didn't work so I just ignored it all until I got so fed up months later that I went back to my own GP who sent me straight to the ENT man. My ENT man did a big Rant about GP's who are so used to asssuming every ear complaint is to do with the Middle Ear...why don't they pick up the Tuning Fork that sits on all their desks he raved...THAT would have told them it was INNER EAR.... Interestingly that was exactly what my own GP did do! Mind you even after my GP sent me off the said ENT man it took another 3 months to get in to actually see him! It was all over months before that! So I won't ever get my Hearing loss restored & the Noise will never go away! I'm terrified of it happening in the right ear....THAT would be truly AWFUL!Right now it's good to know what it is & I'll be straight on to it if ever the right ear does a similar thing. If EVER you wake up in the morning with weird sensations in either ear GO Do SOMETHING INSTANTLY...ask your GP to use that Tuning Fork. NOW I know it's considered a Medical Emergency. Cheers, > > > > > > Â> > > > > >> > > > >> > > > > >> > > > >> > > > > Another round of pft's and a visit to my pulmo....I'm stable! My> > diffusion is back where it had been (last time's lousy resultÂ> was> > a fluke) and I remain stable. My next appointment isn't till> March> > so I've got a few months to chill.Â> > > > > I am very happy this afternoon.> > > > > Thankfully yours!> > > > > > Â> > > > > Beth> > > > > Moderator> > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08> > > > > Â> > > > > Â> > > > >> > > > >> > > > > >> > > > >> > > >> > >> > >> > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 24, 2009 Report Share Posted November 24, 2009 GIO I was living in Florida and my GP did everything wrong and on my HMO I couldn't get to an ENT. Now, fortunately, mine had more time than yours and I moved soon to Texas. My GP here was concerned. I went to the ENT and he looked in under microscope and immediately said I needed surgery. I guess the ones in Florida would have just waited until it ate through to my brain, which it can do. (You're right about cholesteotoma starting in the middle ear although not stopped it keeps going). I was fortunate in not having to leave the canal open. I get constant sound thats a bit like an air conditioner running in my ear and other tingling and stuff. I'm so sorry to hear about yours. Sounds like the diagnosis is one of elimination and that they are checking for anything else possible. The noise does interfere with hearing soft speakers even in the other ear. The other thing I imagine you've encountered is difficulty knowing from what direction a sound is coming from. I know you are in fear of the other one. Did they indicate that happened with any frequency? I guess the preventative is anything wrong with ear, immediate medical help. You going to get pictures of you in the goggles and water? Doesn't sound like fun but at least they are being thorough now. Don't you wonder if these other things are all just random physical problems or if in any way that hasn't been discovered yet, they are somehow connected? Our bodies just do strange things. I'm trying to get an appointment with Dr. House. I know he'll misdiagnose for a while but within an hour he always has it figured out. > > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Another round of pft's and a visit to my pulmo....I'm stable! > My > > > diffusion is back where it had been (last time's lousy result > > was > > > a fluke) and I remain stable. My next appointment isn't till > > March > > > so I've got a few months to chill. > > > > > > I am very happy this afternoon. > > > > > > Thankfully yours! > > > > > > >  > > > > > > Beth > > > > > > Moderator > > > > > > Fibrotic NSIP 06/06 Dermatomyositis 11/08 > > > > > >  > > > > > >  > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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