Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 ' I have the purple motting on legs ask orthopedic dr.,said not from back. Also have twitching,more like jerks in arms and legs will ask pulmo dr wed at appointment. My problems are in lower 3/4 of lungs not upper so not sure if same symptoms. Anybody else have any info. dnsrndl wrote: Hi Group, I have been reading all of your old posts this morning(I am on 328)and have lots of new questions. First of all I have been diagnosedwith advanced interstitual lung disease ( from reading the internet Iam taking this to mean I have advanced pulmonary fibrosis but am notsure).My lungs have very heavy scarring throughout 80% of mylungs,heaviest in the upper regions of the lungs around and in thebronchial tubes and only the bottom 20% of my lungs are clear. I havehad a cough for 2 years, wheezing off and on, sometimes so loud Ican't sleep at night, but other times none. When they did the 6minute exercise test (early in the morning) my o2 level was prettygood. 98% resting, 91% at end of test. By the end of each day though,I have ice cold hands and feet, purple mottling in my legs and have avery hard time breathing. Also have twitching in my right arm somenights. At what point do you know you should have oxygen? Doesadvanced mean end stage? Does anyone else have purple mottling ortwitchy arms. I am calling to switch doctors today as I have askedhim all these questions and his reply is that he can't answer anythinguntil I have the open lung biopsy. Thanks- Love cheap thrills? Enjoy PC-to-Phone calls to 30+ countries for just 2¢/min with Yahoo! Messenger with Voice. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Hello , Do you have an oxygen meter? Sounds like stuff is going on that you need to know about. It's rough to try and figure out whats going on when you have a lot of stuff wrong with you. You can't run to the doctor every time you have a pain. They just take your blood pressure and heart rate and pat you on the back. My foot man for diabetic shoes told me that it is hard for doctors to treat your feet and legs because the swelling and soreness is caused by the lymph glands. I had never heard of that. They give you diuretics and send you home. He said I needed to drink a lot of water [64 ounces a day] thats a lot of water. The water flushes the poisons out of our systems. He said everybodys lympth system is different. Anybody got any input. It's difficult for me to choke down that much water. Diabetic literature says the same thing. Sorry I missed the chat group. Got caught in another situation. Grey More Questions! Hi Group, I have been reading all of your old posts this morning(I am on 328)and have lots of new questions. First of all I have been diagnosedwith advanced interstitual lung disease ( from reading the internet Iam taking this to mean I have advanced pulmonary fibrosis but am notsure).My lungs have very heavy scarring throughout 80% of mylungs,heaviest in the upper regions of the lungs around and in thebronchial tubes and only the bottom 20% of my lungs are clear. I havehad a cough for 2 years, wheezing off and on, sometimes so loud Ican't sleep at night, but other times none. When they did the 6minute exercise test (early in the morning) my o2 level was prettygood. 98% resting, 91% at end of test. By the end of each day though,I have ice cold hands and feet, purple mottling in my legs and have avery hard time breathing. Also have twitching in my right arm somenights. At what point do you know you should have oxygen? Doesadvanced mean end stage? Does anyone else have purple mottling ortwitchy arms. I am calling to switch doctors today as I have askedhim all these questions and his reply is that he can't answer anythinguntil I have the open lung biopsy. Thanks- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Gee ... thanks for all of the response. I have some tests yet to do, stress test and a new CAT scan. From what I can gather here, even tho this is a congenital or genetic condition, I think I can make a claim for compensation ... this is what I'm working on now, at least until Dr. Zaman, my pulmonary specialist, informs me for sure exactly WHAT form of this I DO have. If the vets here could advise me as to correlating this with asbestos/weather/CS gas exposure, I'd REALLY appreciate it ... couple of responses have hinted on that. I also have been treated for rhinitis, bronchitis (which the VA claims I developed here in WV!). Thanks for the response and, WHY DON'T SOME OF US WRITE MONTEL ABOUT IT???? I'd go on his show ... I was already on Oprah (for something else) years ago (I was a good guy, don't worry ... it was in her " fat period " when she wore a red-orange dress that, when she bent over ... which she DID ... made it look like two tomatoes fighting, ! Still trying to get some humor in here!) Comments??? Fred ---- Original Message ---- From: jsingletary@... To: Breathe-Support Subject: Re: More Questions! Date: Thu, 27 Apr 2006 22:08:09 -0400 >Hello , Do you have an oxygen meter? Sounds like stuff is >going on that you need to know about. It's rough to try and figure >out whats going on when you have a lot of stuff wrong with you. You >can't run to the doctor every time you have a pain. They just take >your blood pressure and heart rate and pat you on the back. My foot >man for diabetic shoes told me that it is hard for doctors to treat >your feet and legs because the swelling and soreness is caused by the >lymph glands. I had never heard of that. They give you diuretics >and send you home. He said I needed to drink a lot of water [64 >ounces a day] thats a lot of water. >The water flushes the poisons out of our systems. He said everybodys >lympth system is different. Anybody got any input. It's difficult >for me to choke down that much water. Diabetic literature says the >same thing. Sorry I missed the chat group. Got caught in another >situation. Grey > More Questions! > > > Hi Group, > I have been reading all of your old posts this morning(I am on >328) > and have lots of new questions. First of all I have been diagnosed > with advanced interstitual lung disease ( from reading the internet >I > am taking this to mean I have advanced pulmonary fibrosis but am >not > sure).My lungs have very heavy scarring throughout 80% of my > lungs,heaviest in the upper regions of the lungs around and in the > bronchial tubes and only the bottom 20% of my lungs are clear. I >have > had a cough for 2 years, wheezing off and on, sometimes so loud I > can't sleep at night, but other times none. When they did the 6 > minute exercise test (early in the morning) my o2 level was pretty > good. 98% resting, 91% at end of test. By the end of each day >though, > I have ice cold hands and feet, purple mottling in my legs and have >a > very hard time breathing. Also have twitching in my right arm some > nights. At what point do you know you should have oxygen? Does > advanced mean end stage? Does anyone else have purple mottling or > twitchy arms. I am calling to switch doctors today as I have asked > him all these questions and his reply is that he can't answer >anything > until I have the open lung biopsy. Thanks- > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Fred: I believe humor and laughter are as essential to life as breathing. Just please don't let yours get as warpted as mine can get. People just look at me and want to call the men in the little white coats. It is a proven fact laughter can and will help both mental and physical wellbeing. Keep It Up. phredta11bl@... wrote: Gee ... thanks for all of the response. I have some tests yet to do,stress test and a new CAT scan. From what I can gather here, even thothis is a congenital or genetic condition, I think I can make a claimfor compensation ... this is what I'm working on now, at least untilDr. Zaman, my pulmonary specialist, informs me for sure exactly WHATform of this I DO have. If the vets here could advise me as tocorrelating this with asbestos/weather/CS gas exposure, I'd REALLYappreciate it ... couple of responses have hinted on that. I alsohave been treated for rhinitis, bronchitis (which the VA claims Ideveloped here in WV!). Thanks for the response and, WHY DON'T SOMEOF US WRITE MONTEL ABOUT IT???? I'd go on his show ... I was alreadyon Oprah (for something else) years ago (I was a good guy, don'tworry ... it was in her "fat period" when she wore a red-orange dressthat, when she bent over ... which she DID ... made it look like twotomatoes fighting, ! Still trying to get some humor in here!)Comments???Fred ---- Original Message ----From: jsingletary@...To: Breathe-Support Subject: Re: More Questions!Date: Thu, 27 Apr 2006 22:08:09 -0400>Hello , Do you have an oxygen meter? Sounds like stuff is>going on that you need to know about. It's rough to try and figure>out whats going on when you have a lot of stuff wrong with you. You>can't run to the doctor every time you have a pain. They just take>your blood pressure and heart rate and pat you on the back. My foot>man for diabetic shoes told me that it is hard for doctors to treat>your feet and legs because the swelling and soreness is caused by the>lymph glands. I had never heard of that. They give you diuretics>and send you home. He said I needed to drink a lot of water [64>ounces a day] thats a lot of water. >The water flushes the poisons out of our systems. He said everybodys>lympth system is different. Anybody got any input. It's difficult>for me to choke down that much water. Diabetic literature says the>same thing. Sorry I missed the chat group. Got caught in another>situation. Grey> More Questions!>>> Hi Group,> I have been reading all of your old posts this morning(I am on>328)> and have lots of new questions. First of all I have been diagnosed> with advanced interstitual lung disease ( from reading the internet>I> am taking this to mean I have advanced pulmonary fibrosis but am>not> sure).My lungs have very heavy scarring throughout 80% of my> lungs,heaviest in the upper regions of the lungs around and in the> bronchial tubes and only the bottom 20% of my lungs are clear. I>have> had a cough for 2 years, wheezing off and on, sometimes so loud I> can't sleep at night, but other times none. When they did the 6> minute exercise test (early in the morning) my o2 level was pretty> good. 98% resting, 91% at end of test. By the end of each day>though,> I have ice cold hands and feet, purple mottling in my legs and have>a> very hard time breathing. Also have twitching in my right arm some> nights. At what point do you know you should have oxygen? Does> advanced mean end stage? Does anyone else have purple mottling or> twitchy arms. I am calling to switch doctors today as I have asked> him all these questions and his reply is that he can't answer>anything> until I have the open lung biopsy. Thanks->>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 , it has been said that I have the heart of a small boy ... I do and, sometimes I take it out of the box in my closet and play with it, ! Fred (or, Phred as I sometimes sign it) ---- Original Message ---- From: lovepuppy49@... To: Breathe-Support Subject: Re: More Questions! Date: Thu, 27 Apr 2006 20:50:54 -0700 (PDT) >Fred: > I believe humor and laughter are as essential to life as breathing. >Just please don't let yours get as warpted as mine can get. People >just look at me and want to call the men in the little white coats. >It is a proven fact laughter can and will help both mental and >physical wellbeing. Keep It Up. > > > >phredta11bl@... wrote: > Gee ... thanks for all of the response. I have some tests yet to >do, >stress test and a new CAT scan. From what I can gather here, even tho >this is a congenital or genetic condition, I think I can make a claim >for compensation ... this is what I'm working on now, at least until >Dr. Zaman, my pulmonary specialist, informs me for sure exactly WHAT >form of this I DO have. If the vets here could advise me as to >correlating this with asbestos/weather/CS gas exposure, I'd REALLY >appreciate it ... couple of responses have hinted on that. I also >have been treated for rhinitis, bronchitis (which the VA claims I >developed here in WV!). Thanks for the response and, WHY DON'T SOME >OF US WRITE MONTEL ABOUT IT???? I'd go on his show ... I was already >on Oprah (for something else) years ago (I was a good guy, don't >worry ... it was in her " fat period " when she wore a red-orange dress >that, when she bent over ... which she DID ... made it look like two >tomatoes fighting, ! Still trying to get some humor in here!) >Comments??? > >Fred > >---- Original Message ---- >From: jsingletary@... >To: Breathe-Support >Subject: Re: More Questions! >Date: Thu, 27 Apr 2006 22:08:09 -0400 > >>Hello , Do you have an oxygen meter? Sounds like stuff is >>going on that you need to know about. It's rough to try and figure >>out whats going on when you have a lot of stuff wrong with you. You >>can't run to the doctor every time you have a pain. They just take >>your blood pressure and heart rate and pat you on the back. My foot >>man for diabetic shoes told me that it is hard for doctors to treat >>your feet and legs because the swelling and soreness is caused by >the >>lymph glands. I had never heard of that. They give you diuretics >>and send you home. He said I needed to drink a lot of water [64 >>ounces a day] thats a lot of water. >>The water flushes the poisons out of our systems. He said >everybodys >>lympth system is different. Anybody got any input. It's difficult >>for me to choke down that much water. Diabetic literature says the >>same thing. Sorry I missed the chat group. Got caught in another >>situation. Grey >> More Questions! >> >> >> Hi Group, >> I have been reading all of your old posts this morning(I am on >>328) >> and have lots of new questions. First of all I have been >diagnosed >> with advanced interstitual lung disease ( from reading the >internet >>I >> am taking this to mean I have advanced pulmonary fibrosis but am >>not >> sure).My lungs have very heavy scarring throughout 80% of my >> lungs,heaviest in the upper regions of the lungs around and in the >> bronchial tubes and only the bottom 20% of my lungs are clear. I >>have >> had a cough for 2 years, wheezing off and on, sometimes so loud I >> can't sleep at night, but other times none. When they did the 6 >> minute exercise test (early in the morning) my o2 level was pretty >> good. 98% resting, 91% at end of test. By the end of each day >>though, >> I have ice cold hands and feet, purple mottling in my legs and >have >>a >> very hard time breathing. Also have twitching in my right arm >some >> nights. At what point do you know you should have oxygen? Does >> advanced mean end stage? Does anyone else have purple mottling or >> twitchy arms. I am calling to switch doctors today as I have >asked >> him all these questions and his reply is that he can't answer >>anything >> until I have the open lung biopsy. Thanks- >> >> >> >> >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Hello Fred, Hope you will stay with us and keep us posted. I lost a close cousin this march in 05 with lung stuff. VA was good to him for a lot of years. They sent him all over everywhere for great treatment. Lots of good equipment. I don't know about any compensation for in service damage to his health. Nobody wants to assume responsibility for our lung stuff. Good luck on your claims for compensation. I was a RR brakeman and conductor for 38 years. Was hurt and injured numerous times. Never was offered real money for my injuries. The only people that collected for injuries had powerful lawyers. I am going to tell a little story. I've always got a little story to tell. They are all true. I have been carrying a family for several years. No I'm not from Tenn. These people could not pay their rent. Single parent with small children. She called me last week and told me to come by for the rent. Church had been paying 1 mo every other mo. She pulled out a bunch of checks and paid a good amount on the back rent. I was shocked. I told her I never expected to be compensated for the back rent. She started crying. Her claim for disability finally came thru. I never had any problems with my claim when I quit. RR wanted to reduce forces. I was glad to leave. It was rough at first. I found out that RR ins was not very generous and they refused to pay the hosp where I was treated. Two seperate stays from heart attacks. After ins finally paid some of my bill, I was sued for the balance while I was paying 200 a month. I come close to doing some bad things. My wife told me one day----You can't talk to people like that on the phone. I don't know why I told you this stuff. Life can be frustrating some times, especially if you have big medical bills and no way to pay. Just sharing some of my life. Good luck and may God Bless. Grey More Questions!>>> Hi Group,> I have been reading all of your old posts this morning(I am on>328)> and have lots of new questions. First of all I have been diagnosed> with advanced interstitual lung disease ( from reading the internet>I> am taking this to mean I have advanced pulmonary fibrosis but am>not> sure).My lungs have very heavy scarring throughout 80% of my> lungs,heaviest in the upper regions of the lungs around and in the> bronchial tubes and only the bottom 20% of my lungs are clear. I>have> had a cough for 2 years, wheezing off and on, sometimes so loud I> can't sleep at night, but other times none. When they did the 6> minute exercise test (early in the morning) my o2 level was pretty> good. 98% resting, 91% at end of test. By the end of each day>though,> I have ice cold hands and feet, purple mottling in my legs and have>a> very hard time breathing. Also have twitching in my right arm some> nights. At what point do you know you should have oxygen? Does> advanced mean end stage? Does anyone else have purple mottling or> twitchy arms. I am calling to switch doctors today as I have asked> him all these questions and his reply is that he can't answer>anything> until I have the open lung biopsy. Thanks->>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 Grey: My income stinks, but I guess I should be very grateful and am grateful that I have any income at all. I tell ya what I have been doing for a few years now. I rent out my extra bedrooms. Right now I have two renters and tomorrow morning, I believe I will have rented the last room..Guy is suppose to be here at 8:15 am to put a deposit down on it. I don't rent them for much. I get $150 a mo. or $50 a week. But every little bit helps. You might want to try something like that to bring in extra income. Or you could get someone to let you use their tax number and go to some wholesale houses and buy up stuff and put it on ebay. I have done that before. Get creative and you would not believe the stuff you can come up with to supplement your income. I guess I have said too much...hope I don't get in trouble now. I hope this little bit of advice will help you ease the stress of not enough money and too many bills. Barb in KY jose singletary wrote: Hello Fred, Hope you will stay with us and keep us posted. I lost a close cousin this march in 05 with lung stuff. VA was good to him for a lot of years. They sent him all over everywhere for great treatment. Lots of good equipment. I don't know about any compensation for in service damage to his health. Nobody wants to assume responsibility for our lung stuff. Good luck on your claims for compensation. I was a RR brakeman and conductor for 38 years. Was hurt and injured numerous times. Never was offered real money for my injuries. The only people that collected for injuries had powerful lawyers. I am going to tell a little story. I've always got a little story to tell. They are all true. I have been carrying a family for several years. No I'm not from Tenn. These people could not pay their rent. Single parent with small children. She called me last week and told me to come by for the rent. Church had been paying 1 mo every other mo. She pulled out a bunch of checks and paid a good amount on the back rent. I was shocked. I told her I never expected to be compensated for the back rent. She started crying. Her claim for disability finally came thru. I never had any problems with my claim when I quit. RR wanted to reduce forces. I was glad to leave. It was rough at first. I found out that RR ins was not very generous and they refused to pay the hosp where I was treated. Two seperate stays from heart attacks. After ins finally paid some of my bill, I was sued for the balance while I was paying 200 a month. I come close to doing some bad things. My wife told me one day----You can't talk to people like that on the phone. I don't know why I told you this stuff. Life can be frustrating some times, especially if you have big medical bills and no way to pay. Just sharing some of my life. Good luck and may God Bless. Grey More Questions!>>> Hi Group,> I have been reading all of your old posts this morning(I am on>328)> and have lots of new questions. First of all I have been diagnosed> with advanced interstitual lung disease ( from reading the internet>I> am taking this to mean I have advanced pulmonary fibrosis but am>not> sure).My lungs have very heavy scarring throughout 80% of my> lungs,heaviest in the upper regions of the lungs around and in the> bronchial tubes and only the bottom 20% of my lungs are clear. I>have> had a cough for 2 years, wheezing off and on, sometimes so loud I> can't sleep at night, but other times none. When they did the 6> minute exercise test (early in the morning) my o2 level was pretty> good. 98% resting, 91% at end of test. By the end of each day>though,> I have ice cold hands and feet, purple mottling in my legs and have>a> very hard time breathing. Also have twitching in my right arm some> nights. At what point do you know you should have oxygen? Does> advanced mean end stage? Does anyone else have purple mottling or> twitchy arms. I am calling to switch doctors today as I have asked> him all these questions and his reply is that he can't answer>anything> until I have the open lung biopsy. Thanks->>>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2006 Report Share Posted April 27, 2006 , the care from the VA is OK but, the treatment by the admin stuff is awful. They have fouled me up BIGTIME and, I even wrote President Bush on it ... got an answer (from DC VA people but, an ANSWER) and, they ARE literally walking around half-scared to death. Good. I have a sense of humor but, I don't suffer fools gladly. It is terrific of you to have assisted that family like that, as old whatzername on TV would say, " God'll get you for that. " but, in the BEST way! Phred ---- Original Message ---- From: jsingletary@... To: Breathe-Support Subject: Re: More Questions! Date: Fri, 28 Apr 2006 00:52:02 -0400 >Hello Fred, Hope you will stay with us and keep us posted. I lost a >close cousin this march in 05 with lung stuff. VA was good to him >for a lot of years. They sent him all over everywhere for great >treatment. Lots of good equipment. I don't know about any >compensation for in service damage to his health. Nobody wants to >assume responsibility for our lung stuff. Good luck on your claims >for compensation. I was a RR brakeman and conductor for 38 years. >Was hurt and injured numerous times. Never was offered real money >for my injuries. The only people that collected for injuries had >powerful lawyers. I am going to tell a little story. I've always >got a little story to tell. They are all true. I have been carrying >a family for several years. No I'm not from Tenn. These people >could not pay their rent. Single parent with small children. She >called me last week and told me to come by for the rent. Church had >been paying 1 mo every other mo. She pulled out a bunch of checks >and paid a good amount on the back rent. I was shocked. I told her >I never expected to be compensated for the back rent. She started >crying. Her claim for disability finally came thru. I never had any >problems with my claim when I quit. RR wanted to reduce forces. I >was glad to leave. It was rough at first. I found out that RR ins >was not very generous and they refused to pay the hosp where I was >treated. Two seperate stays from heart attacks. After ins finally >paid some of my bill, I was sued for the balance while I was paying >200 a month. I come close to doing some bad things. My wife told me >one day----You can't talk to people like that on the phone. I don't >know why I told you this stuff. Life can be frustrating some times, >especially if you have big medical bills and no way to pay. Just >sharing some of my life. Good luck and may God Bless. Grey > More Questions! > > > > > > Hi Group, > > I have been reading all of your old posts this morning(I am >on > >328) > > and have lots of new questions. First of all I have been >diagnosed > > with advanced interstitual lung disease ( from reading the >internet > >I > > am taking this to mean I have advanced pulmonary fibrosis but >am > >not > > sure).My lungs have very heavy scarring throughout 80% of my > > lungs,heaviest in the upper regions of the lungs around and in >the > > bronchial tubes and only the bottom 20% of my lungs are clear. > I > >have > > had a cough for 2 years, wheezing off and on, sometimes so >loud I > > can't sleep at night, but other times none. When they did the >6 > > minute exercise test (early in the morning) my o2 level was >pretty > > good. 98% resting, 91% at end of test. By the end of each day > >though, > > I have ice cold hands and feet, purple mottling in my legs and >have > >a > > very hard time breathing. Also have twitching in my right arm >some > > nights. At what point do you know you should have oxygen? >Does > > advanced mean end stage? Does anyone else have purple >mottling or > > twitchy arms. I am calling to switch doctors today as I have >asked > > him all these questions and his reply is that he can't answer > >anything > > until I have the open lung biopsy. Thanks- > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 and Fred, "A joyful heart is good medicine," Proverbs 17:22 Joyce > Gee ... thanks for all of the response. I have some tests yet to do,> stress test and a new CAT scan. From what I can gather here, even tho> this is a congenital or genetic condition, I think I can make a claim> for compensation ... this is what I'm working on now, at least until> Dr. Zaman, my pulmonary specialist, informs me for sure exactly WHAT> form of this I DO have. If the vets here could advise me as to> correlating this with asbestos/weather/CS gas exposure, I'd REALLY> appreciate it ... couple of responses have hinted on that. I also> have been treated for rhinitis, bronchitis (which the VA claims I> developed here in WV!). Thanks for the response and, WHY DON'T SOME> OF US WRITE MONTEL ABOUT IT???? I'd go on his show ... I was already> on Oprah (for something else) years ago (I was a good guy, don't> worry ... it was in her "fat period" when she wore a red-orange dress> that, when she bent over ... which she DID ... made it look like two> tomatoes fighting, ! Still trying to get some humor in here!)> Comments???> > Fred > > ---- Original Message ----> To: Breathe-Support > Subject: Re: More Questions!> Date: Thu, 27 Apr 2006 22:08:09 -0400> > >Hello , Do you have an oxygen meter? Sounds like stuff is> >going on that you need to know about. It's rough to try and figure> >out whats going on when you have a lot of stuff wrong with you. You> >can't run to the doctor every time you have a pain. They just take> >your blood pressure and heart rate and pat you on the back. My foot> >man for diabetic shoes told me that it is hard for doctors to treat> >your feet and legs because the swelling and soreness is caused by the> >lymph glands. I had never heard of that. They give you diuretics> >and send you home. He said I needed to drink a lot of water [64> >ounces a day] thats a lot of water. > >The water flushes the poisons out of our systems. He said everybodys> >lympth system is different. Anybody got any input. It's difficult> >for me to choke down that much water. Diabetic literature says the> >same thing. Sorry I missed the chat group. Got caught in another> >situation. Grey> > More Questions!> >> >> > Hi Group,> > I have been reading all of your old posts this morning(I am on> >328)> > and have lots of new questions. First of all I have been diagnosed> > with advanced interstitual lung disease ( from reading the internet> >I> > am taking this to mean I have advanced pulmonary fibrosis but am> >not> > sure).My lungs have very heavy scarring throughout 80% of my> > lungs,heaviest in the upper regions of the lungs around and in the> > bronchial tubes and only the bottom 20% of my lungs are clear. I> >have> > had a cough for 2 years, wheezing off and on, sometimes so loud I> > can't sleep at night, but other times none. When they did the 6> > minute exercise test (early in the morning) my o2 level was pretty> > good. 98% resting, 91% at end of test. By the end of each day> >though,> > I have ice cold hands and feet, purple mottling in my legs and have> >a> > very hard time breathing. Also have twitching in my right arm some> > nights. At what point do you know you should have oxygen? Does> > advanced mean end stage? Does anyone else have purple mottling or> > twitchy arms. I am calling to switch doctors today as I have asked> > him all these questions and his reply is that he can't answer> >anything> > until I have the open lung biopsy. Thanks-> >> >> >> >> >> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 28, 2006 Report Share Posted April 28, 2006 I couldn't agree more....when you laugh, endorphins are released...that's why it feels so good!! --Diane Quinlan dianequinlan@... -------------- Original message -------------- Fred: I believe humor and laughter are as essential to life as breathing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 , yes interstitial lung disease is sometimes used in place of pulmonary fibrosis or vice versa it has so manyy names and sub divisions you'll see it under many names. I have cold extremities, mottling, and twitching also. Check out raynauds syndrome on the computer. I'm not sure if it is spelled right but apparently it is not uncommon with this disease. My doctor prescribed me something for it thurs but I haven't started it yet so I can't tell you how it works. It has to do with your veins spasming and keeping the blood from getting to the ends of your fingers. Hope this helps and hang in there. Tom > > Hi Group, > I have been reading all of your old posts this morning(I am on 328) > and have lots of new questions. First of all I have been diagnosed > with advanced interstitual lung disease ( from reading the internet I > am taking this to mean I have advanced pulmonary fibrosis but am not > sure).My lungs have very heavy scarring throughout 80% of my > lungs,heaviest in the upper regions of the lungs around and in the > bronchial tubes and only the bottom 20% of my lungs are clear. I have > had a cough for 2 years, wheezing off and on, sometimes so loud I > can't sleep at night, but other times none. When they did the 6 > minute exercise test (early in the morning) my o2 level was pretty > good. 98% resting, 91% at end of test. By the end of each day though, > I have ice cold hands and feet, purple mottling in my legs and have a > very hard time breathing. Also have twitching in my right arm some > nights. At what point do you know you should have oxygen? Does > advanced mean end stage? Does anyone else have purple mottling or > twitchy arms. I am calling to switch doctors today as I have asked > him all these questions and his reply is that he can't answer anything > until I have the open lung biopsy. Thanks- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 29, 2006 Report Share Posted April 29, 2006 Thanks Tom! topamo wrote: , yes interstitial lung disease is sometimes used in place of pulmonary fibrosis or vice versa it has so manyy names and sub divisions you'll see it under many names. I have cold extremities, mottling, and twitching also. Check out raynauds syndrome on the computer. I'm not sure if it is spelled right but apparently it is not uncommon with this disease. My doctor prescribed me something for it thurs but I haven't started it yet so I can't tell you how it works. It has to do with your veins spasming and keeping the blood from getting to the ends of your fingers. Hope this helps and hang in there. Tom > > Hi Group, > I have been reading all of your old posts this morning(I am on 328) > and have lots of new questions. First of all I have been diagnosed > with advanced interstitual lung disease ( from reading the internet I > am taking this to mean I have advanced pulmonary fibrosis but am not > sure).My lungs have very heavy scarring throughout 80% of my > lungs,heaviest in the upper regions of the lungs around and in the > bronchial tubes and only the bottom 20% of my lungs are clear. I have > had a cough for 2 years, wheezing off and on, sometimes so loud I > can't sleep at night, but other times none. When they did the 6 > minute exercise test (early in the morning) my o2 level was pretty > good. 98% resting, 91% at end of test. By the end of each day though, > I have ice cold hands and feet, purple mottling in my legs and have a > very hard time breathing. Also have twitching in my right arm some > nights. At what point do you know you should have oxygen? Does > advanced mean end stage? Does anyone else have purple mottling or > twitchy arms. I am calling to switch doctors today as I have asked > him all these questions and his reply is that he can't answer anything > until I have the open lung biopsy. Thanks- > Yahoo! Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.