Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Laurie, I'm very sorry to hear about your latest diagnosis. I have known people with pulmonary fibrosis, but they have not had mito as far as I know. I hope your doctors can offer some treatment. 50% must be very limiting. Take care, Barbara > Hi > > First of all, says hi. She is going to see the doctor next Tuesday to > be seen for her painful wrist, elbow and shoulder. > > Those of you with air hunger, have any of you been diagnosed with lung > fibrosis. I have been diagnosed with this and we don't know if it is mito > thing or is related to the poor air (possible asbestes exposure) at the > school I work in. My air exchange is down to about 50%. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Laurie, I'm very sorry to hear about your latest diagnosis. I have known people with pulmonary fibrosis, but they have not had mito as far as I know. I hope your doctors can offer some treatment. 50% must be very limiting. Take care, Barbara > Hi > > First of all, says hi. She is going to see the doctor next Tuesday to > be seen for her painful wrist, elbow and shoulder. > > Those of you with air hunger, have any of you been diagnosed with lung > fibrosis. I have been diagnosed with this and we don't know if it is mito > thing or is related to the poor air (possible asbestes exposure) at the > school I work in. My air exchange is down to about 50%. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Hi Laurie, Sorry to hear of your latest diagnosis. It must be very hard and painful for you to breath. Is your school a very old building? I wonder if your school has ever been checked for asbestos. I can't be of much help but wanted to let you know that I am thinking of you and hope you find the reason. I hope is feeling better. Tell her I said Hi. And I hope her appt. goes well next week. Hugs, Ann-Marie lungs Hi First of all, says hi. She is going to see the doctor next Tuesday to be seen for her painful wrist, elbow and shoulder. Those of you with air hunger, have any of you been diagnosed with lung fibrosis. I have been diagnosed with this and we don't know if it is mito thing or is related to the poor air (possible asbestes exposure) at the school I work in. My air exchange is down to about 50%. laurie Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment. Personal attacks are not permitted on the list and anyone who sends one is automatically moderated or removed depending on the severity of the attack. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 I'm so sorry that you have this new diagnosis, Laurie. Did they say that there was anything they could do for this? Are you going on oxygen? I know you just stopped it at night. It would seem that with 50% air exchange - there must be a treatment. It sounds like a form of emphysema and my Dad who had emphysema was on oxygen 24/7. Please tell we will be thinking of her next week and good luck at her doctor's appointment. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 I'm so sorry that you have this new diagnosis, Laurie. Did they say that there was anything they could do for this? Are you going on oxygen? I know you just stopped it at night. It would seem that with 50% air exchange - there must be a treatment. It sounds like a form of emphysema and my Dad who had emphysema was on oxygen 24/7. Please tell we will be thinking of her next week and good luck at her doctor's appointment. Alice Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Laurie, Let us know what the neuro says tomorrow and good luck. Alice Re: Re: lungs > > I'm so sorry that you have this new diagnosis, Laurie. Did they say that there > was anything they could do for this? Are you going on oxygen? I know you > just stopped it at night. It would seem that with 50% air exchange - there > must be a treatment. It sounds like a form of emphysema and my Dad who had > emphysema was on oxygen 24/7. > > Please tell we will be thinking of her next week and good luck at her > doctor's appointment. > > Alice > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Alice There is no treatment for it, but I am getting enough O2 now. My dad has lung fibrosis and had a lung biopsy several years ago. They thought that is was caused by all the things he inhaled working at Fords. I wondered if our Ehler Danlos (which probably came from my dad) might have something to do with it and it can be connected with a connective tissue disorder. That may be the connection. Workmans Comp might enter into this and I'm trying to decide what to do. I really don't want to start the path of workman's comp. docs. I have enough of my own. I see my neuro tomorrow and he is the one I asked about the air quality issues and he sent me to the pulmonologist. I'll pass your message onto . laurie > > Reply-To: > Date: Wed, 27 Oct 2004 18:43:56 -0600 > To: > > Subject: Re: Re: lungs > > I'm so sorry that you have this new diagnosis, Laurie. Did they say that there > was anything they could do for this? Are you going on oxygen? I know you > just stopped it at night. It would seem that with 50% air exchange - there > must be a treatment. It sounds like a form of emphysema and my Dad who had > emphysema was on oxygen 24/7. > > Please tell we will be thinking of her next week and good luck at her > doctor's appointment. > > Alice > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Alice There is no treatment for it, but I am getting enough O2 now. My dad has lung fibrosis and had a lung biopsy several years ago. They thought that is was caused by all the things he inhaled working at Fords. I wondered if our Ehler Danlos (which probably came from my dad) might have something to do with it and it can be connected with a connective tissue disorder. That may be the connection. Workmans Comp might enter into this and I'm trying to decide what to do. I really don't want to start the path of workman's comp. docs. I have enough of my own. I see my neuro tomorrow and he is the one I asked about the air quality issues and he sent me to the pulmonologist. I'll pass your message onto . laurie > > Reply-To: > Date: Wed, 27 Oct 2004 18:43:56 -0600 > To: > > Subject: Re: Re: lungs > > I'm so sorry that you have this new diagnosis, Laurie. Did they say that there > was anything they could do for this? Are you going on oxygen? I know you > just stopped it at night. It would seem that with 50% air exchange - there > must be a treatment. It sounds like a form of emphysema and my Dad who had > emphysema was on oxygen 24/7. > > Please tell we will be thinking of her next week and good luck at her > doctor's appointment. > > Alice > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Ann-Marie Thanks for thinking of us. I have air hunger, but there is only pain if I really try to push beyond what the air hunger allows. I look at the air hunger as my signal to stop. The schools are old and the summer before last was asbestos abatement. We then had to put up with a year of horrible fumes from gluing carpeting, dust from the cement floors from which asbestos had been removed. Many teachers were very sick all of last year. They are still working on the buildings, but in only a few spots and I think that is almost finished. Thanks again for your warm thoughts. laurie > > Reply-To: > Date: Wed, 27 Oct 2004 20:32:05 -0400 > To: > > Subject: Re: lungs > > Hi Laurie, > > Sorry to hear of your latest diagnosis. It must be very hard and painful for > you to breath. Is your school a very old building? I wonder if your school has > ever been checked for asbestos. I can't be of much help but wanted to let you > know that I am thinking of you and hope you find the reason. > > I hope is feeling better. Tell her I said Hi. And I hope her appt. goes > well next week. > > Hugs, > Ann-Marie > lungs > > > Hi > > First of all, says hi. She is going to see the doctor next Tuesday to > be seen for her painful wrist, elbow and shoulder. > > Those of you with air hunger, have any of you been diagnosed with lung > fibrosis. I have been diagnosed with this and we don't know if it is mito > thing or is related to the poor air (possible asbestes exposure) at the > school I work in. My air exchange is down to about 50%. > > laurie > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Thanks Barbara! laurie > > Reply-To: > Date: Thu, 28 Oct 2004 00:11:05 -0000 > To: > Subject: Re: lungs > > > Laurie, I'm very sorry to hear about your latest diagnosis. I have > known people with pulmonary fibrosis, but they have not had mito as > far as I know. I hope your doctors can offer some treatment. 50% > must be very limiting. > > Take care, > Barbara > > >> Hi >> >> First of all, says hi. She is going to see the doctor next > Tuesday to >> be seen for her painful wrist, elbow and shoulder. >> >> Those of you with air hunger, have any of you been diagnosed with > lung >> fibrosis. I have been diagnosed with this and we don't know if it > is mito >> thing or is related to the poor air (possible asbestes exposure) > at the >> school I work in. My air exchange is down to about 50%. >> >> laurie > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Thanks Alice! I'm making my list of questions. laurie > > Reply-To: > Date: Wed, 27 Oct 2004 19:14:50 -0600 > To: > > Subject: Re: Re: lungs > > Laurie, > > Let us know what the neuro says tomorrow and good luck. > > Alice > Re: Re: lungs >> >> I'm so sorry that you have this new diagnosis, Laurie. Did they say that >> there >> was anything they could do for this? Are you going on oxygen? I know you >> just stopped it at night. It would seem that with 50% air exchange - there >> must be a treatment. It sounds like a form of emphysema and my Dad who had >> emphysema was on oxygen 24/7. >> >> Please tell we will be thinking of her next week and good luck at her >> doctor's appointment. >> >> Alice >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 --Laurie, Iam really sorry to hear about the pulmonary Fibrosis in addition to the mito. My step father was just diagnosed with it. He was a printer. They think it is from all of the chemicals. Praying for you. Dawn a In , Laureta Fitzgerald wrote: > Hi > > First of all, says hi. She is going to see the doctor next Tuesday to > be seen for her painful wrist, elbow and shoulder. > > Those of you with air hunger, have any of you been diagnosed with lung > fibrosis. I have been diagnosed with this and we don't know if it is mito > thing or is related to the poor air (possible asbestes exposure) at the > school I work in. My air exchange is down to about 50%. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 27, 2004 Report Share Posted October 27, 2004 Laurie, Can you tell me how they diagnosed this? Was it based solely on your air exchange? In looking at my cardiopulmonary test (I have a difficult time decifering the different measurements) but I have a very low VO2 (lung volume) and I don't know if this is the same thing that you are referring to. My lung volume is at 35% and they are assuming the cause is metabolic in nature. I was also curious to hear how common it is to have such a low reading (normal for those of us in the mito group). Maggie > Hi > > First of all, says hi. She is going to see the doctor next Tuesday to > be seen for her painful wrist, elbow and shoulder. > > Those of you with air hunger, have any of you been diagnosed with lung > fibrosis. I have been diagnosed with this and we don't know if it is mito > thing or is related to the poor air (possible asbestes exposure) at the > school I work in. My air exchange is down to about 50%. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Maggie The air exchange is the ability to breath in and out rapidly and then exhale all the air you have at the end. This is done in the heat and humidity controlled cylinder they put you in. When my value was low, they sent me for an echocardiogram, X-ray and MRI. With all of this together, the diagnosis was made. My volume was in the normal range. The most common reason for low air exchange is a blood clot and they had to rule that out. I have done deep breathing for years. It started when my boys were young and we did breathing exercises to maintain and improve their total volume ability. laurie > > Reply-To: > Date: Thu, 28 Oct 2004 03:10:04 -0000 > To: > Subject: Re: lungs > > > Laurie, > Can you tell me how they diagnosed this? Was it based solely on > your air exchange? In looking at my cardiopulmonary test (I have a > difficult time decifering the different measurements) but I have a > very low VO2 (lung volume) and I don't know if this is the same > thing that you are referring to. > > My lung volume is at 35% and they are assuming the cause is > metabolic in nature. I was also curious to hear how common it is to > have such a low reading (normal for those of us in the mito group). > Maggie > > >> Hi >> >> First of all, says hi. She is going to see the doctor next > Tuesday to >> be seen for her painful wrist, elbow and shoulder. >> >> Those of you with air hunger, have any of you been diagnosed with > lung >> fibrosis. I have been diagnosed with this and we don't know if it > is mito >> thing or is related to the poor air (possible asbestes exposure) > at the >> school I work in. My air exchange is down to about 50%. >> >> laurie > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Thanks ! laurie > > Reply-To: > Date: Wed, 27 Oct 2004 21:40:35 -0400 > To: " Mitoldies " > > Subject: lungs > > Will be thinking of you tomorrow Laurie, > So sorry all of this is happening to you. Let us know how it turns out after > your appointment. > > Smiles, > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Thanks Dawn! laurie > > Reply-To: > Date: Thu, 28 Oct 2004 02:00:10 -0000 > To: > Subject: Re: lungs > > > --Laurie, Iam really sorry to hear about the pulmonary Fibrosis in > addition to the mito. My step father was just diagnosed with it. He > was a printer. They think it is from all of the chemicals. Praying > for you. Dawn a > > > > In , Laureta Fitzgerald > wrote: >> Hi >> >> First of all, says hi. She is going to see the doctor next > Tuesday to >> be seen for her painful wrist, elbow and shoulder. >> >> Those of you with air hunger, have any of you been diagnosed with > lung >> fibrosis. I have been diagnosed with this and we don't know if it > is mito >> thing or is related to the poor air (possible asbestes exposure) > at the >> school I work in. My air exchange is down to about 50%. >> >> laurie > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Laurie, I'll be praying for both of you. I'm sure you've got to be scared going through the breathing issues. As if air hunger isn't enough eh ? Boy, some people just don't get any breaks ! Well I wish the best for you and hope that is ok. Hang in there and let me know if I can help in any way. bug Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Thanks Laurie, That was helpful. I forgot to add ... good luck with your appointment! Maggie > >> Hi > >> > >> First of all, says hi. She is going to see the doctor next > > Tuesday to > >> be seen for her painful wrist, elbow and shoulder. > >> > >> Those of you with air hunger, have any of you been diagnosed with > > lung > >> fibrosis. I have been diagnosed with this and we don't know if it > > is mito > >> thing or is related to the poor air (possible asbestes exposure) > > at the > >> school I work in. My air exchange is down to about 50%. > >> > >> laurie > > > > > > > > > > > > Medical advice, information, opinions, data and statements contained herein > > are not necessarily those of the list moderators. The author of this e mail is > > entirely responsible for its content. List members are reminded of their > > responsibility to evaluate the content of the postings and consult with their > > physicians regarding changes in their own treatment. > > > > Personal attacks are not permitted on the list and anyone who sends one is > > automatically moderated or removed depending on the severity of the attack. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Laurie, Please tell hi and that we are all thinking of her. I am so sorry you have to go through yet another diagnosis. Did you say that you are getting enough oxygen now? Please know that you are in my thoughts and prayers. Smiles and hugs, a > Hi > > First of all, says hi. She is going to see the doctor next Tuesday to > be seen for her painful wrist, elbow and shoulder. > > Those of you with air hunger, have any of you been diagnosed with lung > fibrosis. I have been diagnosed with this and we don't know if it is mito > thing or is related to the poor air (possible asbestes exposure) at the > school I work in. My air exchange is down to about 50%. > > laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Laurie Re your two posts below: my understanding is that the problem with asbestos is mainly due to the microfibers that when inhaled eventually (over many years) lead to asbestosis and lung cancer. Regarding the fumes and many people getting sick, I would guess that it wouldn't be asbestosis because of the immediate time frame involved. But the glue etc. could surely affect people at once, and the asbestos dust could certainly do so down the road. I think it's wrong that teachers had to work and get sick. I'm surprised at your description of the situation, because the problem of asbestos is long known, and there is an entire industry based on VERY careful removal per extreme standards of safety. I simply can't imagine that your school, or the removal contractor, would have unprotected people present in the building at all, for even a minute, during the work. Pardon me for my aggressive attitude, but I think you should file a formal complaint for Worker's Comp, despite the complexity of any pre-existing conditions. My understanding is that any job discrimination for your doing so would be highly illegal and therefore hopefully unlikely. You would also be protecting a claim filing date, which might have some time limitation (I wish I knew the rules here). You possibly just didn't mention what's been happening at your school regarding legal process. It's also possible that all the teachers (and students too) have just kept their mouths shut and lived with it. If the latter, I think you should start a log right away, listing names, dates, and occurrences for every specific sickness you can recall. Once you've done that, you might be surprised at how helpful your town's executive board (selectmen?) will be, when they consider the alternative of multi-million dollar lawsuits that commonly ensue in asbestos issues. Just don't accept any help that requires signing a release, until you've consulted with a lawyer. For much very relevant info on the disease, and the vast pool of interested sharks, oops I meant lawyers, see http://search.yahoo.com/search?p=asbestosis&fr=FP-tab-web-t-173&toggle=1. Again, sorry, just my $.02. But I get so worked up when I hear of worker exploitation on this level, in what is supposedly such a wealthy, compassionate nation. Steve D. Date: Wed, 27 Oct 2004 19:17:44 -0400 Subject: lungs Hi First of all, says hi. She is going to see the doctor next Tuesday to be seen for her painful wrist, elbow and shoulder. Those of you with air hunger, have any of you been diagnosed with lung fibrosis. I have been diagnosed with this and we don't know if it is mito thing or is related to the poor air (possible asbestes exposure) at the school I work in. My air exchange is down to about 50%. laurie Date: Wed, 27 Oct 2004 21:22:08 -0400 Subject: Re: lungs Ann-Marie Thanks for thinking of us. I have air hunger, but there is only pain if I really try to push beyond what the air hunger allows. I look at the air hunger as my signal to stop. The schools are old and the summer before last was asbestos abatement. We then had to put up with a year of horrible fumes from gluing carpeting, dust from the cement floors from which asbestos had been removed. Many teachers were very sick all of last year. They are still working on the buildings, but in only a few spots and I think that is almost finished. Thanks again for your warm thoughts. laurie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Steve I'm glad for your 2 cents. The staff that was sick has keep journals and all filed accident reports with their district. I did the same with my district (I work in one district but for another county wide district). I also called the health department because food was being prepared on tables in the cafeteria with workman over-head and students kicking up dust. The health department said they had an entire bin of letters and faxes from parents with their concerns about the food. The health department made them do food preparation in a " clean " area. The high school cafeteria was moved up on the work schedule, but the elementary/middle school cafeteria was just finished a couple of weeks ago. The entire thing was improperly handled. laurie > > Reply-To: > Date: Thu, 28 Oct 2004 15:54:02 -0400 > To: > > Subject: Re: Lungs > > > Laurie > > Re your two posts below: my understanding is that the problem with asbestos > is mainly due to the microfibers that when inhaled eventually (over many > years) lead to asbestosis and lung cancer. > > Regarding the fumes and many people getting sick, I would guess that it > wouldn't be asbestosis because of the immediate time frame involved. But the > glue etc. could surely affect people at once, and the asbestos dust could > certainly do so down the road. I think it's wrong that teachers had to work > and get sick. I'm surprised at your description of the situation, because > the problem of asbestos is long known, and there is an entire industry based > on VERY careful removal per extreme standards of safety. I simply can't > imagine that your school, or the removal contractor, would have unprotected > people present in the building at all, for even a minute, during the work. > > Pardon me for my aggressive attitude, but I think you should file a formal > complaint for Worker's Comp, despite the complexity of any pre-existing > conditions. My understanding is that any job discrimination for your doing > so would be highly illegal and therefore hopefully unlikely. You would also > be protecting a claim filing date, which might have some time limitation (I > wish I knew the rules here). > > You possibly just didn't mention what's been happening at your school > regarding legal process. It's also possible that all the teachers (and > students too) have just kept their mouths shut and lived with it. If the > latter, I think you should start a log right away, listing names, dates, and > occurrences for every specific sickness you can recall. Once you've done > that, you might be surprised at how helpful your town's executive board > (selectmen?) will be, when they consider the alternative of multi-million > dollar lawsuits that commonly ensue in asbestos issues. Just don't accept > any help that requires signing a release, until you've consulted with a > lawyer. > > For much very relevant info on the disease, and the vast pool of interested > sharks, oops I meant lawyers, see > http://search.yahoo.com/search?p=asbestosis&fr=FP-tab-web-t-173&toggle=1. > > Again, sorry, just my $.02. But I get so worked up when I hear of worker > exploitation on this level, in what is supposedly such a wealthy, > compassionate nation. > > Steve D. > > Date: Wed, 27 Oct 2004 19:17:44 -0400 > > Subject: lungs > > Hi > > First of all, says hi. She is going to see the doctor next Tuesday to > be seen for her painful wrist, elbow and shoulder. > > Those of you with air hunger, have any of you been diagnosed with lung > fibrosis. I have been diagnosed with this and we don't know if it is mito > thing or is related to the poor air (possible asbestes exposure) at the > school I work in. My air exchange is down to about 50%. > > laurie > > > Date: Wed, 27 Oct 2004 21:22:08 -0400 > > Subject: Re: lungs > > Ann-Marie > > Thanks for thinking of us. > > I have air hunger, but there is only pain if I really try to push beyond > what the air hunger allows. I look at the air hunger as my signal to stop. > > The schools are old and the summer before last was asbestos abatement. We > then had to put up with a year of horrible fumes from gluing carpeting, dust > from the cement floors from which asbestos had been removed. Many teachers > were very sick all of last year. They are still working on the buildings, > but in only a few spots and I think that is almost finished. > > Thanks again for your warm thoughts. > > laurie > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Thanks a! Yes, I am getting enough O2. says hi to everyone. I had dinner with her and Christie after my appointment. laurie > > Reply-To: > Date: Thu, 28 Oct 2004 13:42:41 -0500 > To: > Subject: Re: Re: lungs > > Laurie, > Please tell hi and that we are all thinking of her. I am > so sorry you have to go through yet another diagnosis. Did you say that > you are getting enough oxygen now? Please know that you are in my > thoughts and prayers. > Smiles and hugs, > a > >> Hi >> >> First of all, says hi. She is going to see the doctor next > Tuesday to >> be seen for her painful wrist, elbow and shoulder. >> >> Those of you with air hunger, have any of you been diagnosed with > lung >> fibrosis. I have been diagnosed with this and we don't know if it > is mito >> thing or is related to the poor air (possible asbestes exposure) > at the >> school I work in. My air exchange is down to about 50%. >> >> laurie > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 28, 2004 Report Share Posted October 28, 2004 Thanks bug! I think we can blame our parents - one problem from each side of the family (just a guess at this time). Of course my sons get to blame it all on me. We just do this in fun. No one ever knowingly goes ahead and passes things on. laurie > > Reply-To: > Date: Thu, 28 Oct 2004 13:26:57 -0000 > To: > Subject: Re: lungs > > > Laurie, I'll be praying for both of you. I'm sure you've got to be > scared going through the breathing issues. As if air hunger isn't > enough eh ? Boy, some people just don't get any breaks ! Well I > wish the best for you and hope that is ok. Hang in there and > let me know if I can help in any way. > > bug > > > > > > Medical advice, information, opinions, data and statements contained herein > are not necessarily those of the list moderators. The author of this e mail is > entirely responsible for its content. List members are reminded of their > responsibility to evaluate the content of the postings and consult with their > physicians regarding changes in their own treatment. > > Personal attacks are not permitted on the list and anyone who sends one is > automatically moderated or removed depending on the severity of the attack. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 In a message dated 10/27/2004 11:14:28 PM Eastern Standard Time, whoewe2002@... writes: Was it based solely on your air exchange? In looking at my cardiopulmonary test (I have a difficult time decifering the different measurements) but I have a very low VO2 (lung volume) and I don't know if this is the same thing that you are referring to. HI Maggie, Sorry so late to respond. Is the test that you are referring to an exercise test? If so, I had one of these done last year and my VO2 Max was around 40%. They said this was really low and was consistent with an oxygen consumption problem in my muscles, which would be consistent with a mitochondrial disorder. They said that a VO2 Max could decrease with deconditioning but not to the point of being so low. I'm not sure if other types of muscle disorders can do this too.... Malisa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 29, 2004 Report Share Posted October 29, 2004 > HI Maggie, > Sorry so late to respond. Is the test that you are referring to an exercise > test? If so, I had one of these done last year and my VO2 Max was around 40%. > They said this was really low and was consistent with an oxygen consumption > problem in my muscles, which would be consistent with a mitochondrial > disorder. They said that a VO2 Max could decrease with deconditioning but not to > the point of being so low. I'm not sure if other types of muscle disorders can > do this too.... > Malisa > > Malisa, Here are some comments from Dr. re VO2 in metabolic muscle disorders: " One useful screening test is to obtain a respiratory exchange ratio (RER). The ratio of carbon dioxide produced to oxygen consumed gives an indication of the type of fuel being used by the patient. In a normal individual at rest, the RER is approximately 0.8. This is due to the fact that fatty acids are the predominant source of fuel at rest. In CPT deficiency, the RER is seldom much below 1.0, even with the patient at complete rest. " It may be worthwhile to obtain incremental bicycle ergometry results because, in addition to the RER, the VO2max and Wmax also can be determined. Both are likely to be decreased. " Source: http://www.spiralnotebook.org/inthelongrun/index.html Quote Link to comment Share on other sites More sharing options...
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