Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Get another pulmonologist. Repeat....Get another pulmonologist....Repeat....Get another pulmonologist. Your pulmonologist and communication and comfort is so critical to your life from this point forward, so run, don't walk to find one you're comfortable with. I highly suggest, at least for initial thorough diagnosis a teaching hospital with an Interstitial Lung Disease specialty. The ipf centers of excellence are great-www.ipfnet.org. Then if they are distant you might have a local pulmonologist too who takes care of you day to day and is there when you need them. > > Hi my name IS Card > I was Diagonsed with The Begining of Pulmornary Fibrosis. > In Sept Of 2008 and I HAVE A FEW Question's? of concern's > I feel terrible all the time. I saw my Pulmornary Doctor on wedesday > I Asked him what stage of Fibrosis I had said I DON'T KNOW > asked what he thought how long I had to live he said two early to > tell did not like his bed side matter you allready getting your > coffin > ready he said to me. he said that oxygen level looks good so far > I have Sleep apena I am getting my mask on wedesday.also yelling at > me about my weight. I UNDERSTAND that I put weight on also I have > had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the > hosiptal yesteday i feel so lightheaded and dizzy hardley can see > and weak and tired > that said the some thing as alway's that it is Veritgo.and they gave > me Myccline for dizzyness in which it is does nothing,I feel very > weakand tired I sufferd with chronic sunises and asthma and gerd > before I got this monster. I dont like my pulmornary how talks to me > like there is nothing wrong with me knowing what he has found and the > way i feel. > plus my racing heart.my pulse is always 130 with exercise or walking > any type of exercise.sitting is 107 or 90s please let me know what > you guy;s think I am on cardizem 300 and Linspriol for blood pressure. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Hi - in case you missed it the first couple of times, GET ANOTHER PULMO GUY! You need a doctor you can trust, who understands and tried to guide you through your illness, not shoveling out coffin nails. There are lots of pulmonologist in the world, there are lots of forms of pulmonary disease and there are lots of ways to deal with going through the process of learning about the disease, none of which include yelling! OK calmly now, seriously, ya need another doc. It sounds like he does not really understand the concept of providing care. Doctors are really sort of a high end service provider, like hotels. There are the high end suite-type places that understand what travelers need and then there are the Motel-6 type places and they are fine if there is nothing else to sleep in for say the next 200 miles or so, but would you really want a Motel-6 doc? Where the desk clerk is rude, the continental breakfast was stuck out 2 days and he yells at you if you want fresh coffee??? HMMMM??? Girl go find you some high-end suite-type doc who practices medical care. S, Lubbock, TX NSIP w/PF 12/2006 > > Hi my name IS Card > I was Diagonsed with The Begining of Pulmornary Fibrosis. > In Sept Of 2008 and I HAVE A FEW Question's? of concern's > I feel terrible all the time. I saw my Pulmornary Doctor on wedesday > I Asked him what stage of Fibrosis I had said I DON'T KNOW > asked what he thought how long I had to live he said two early to > tell did not like his bed side matter you allready getting your > coffin > ready he said to me. he said that oxygen level looks good so far > I have Sleep apena I am getting my mask on wedesday.also yelling at > me about my weight. I UNDERSTAND that I put weight on also I have > had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the > hosiptal yesteday i feel so lightheaded and dizzy hardley can see > and weak and tired > that said the some thing as alway's that it is Veritgo.and they gave > me Myccline for dizzyness in which it is does nothing,I feel very > weakand tired I sufferd with chronic sunises and asthma and gerd > before I got this monster. I dont like my pulmornary how talks to me > like there is nothing wrong with me knowing what he has found and the > way i feel. > plus my racing heart.my pulse is always 130 with exercise or walking > any type of exercise.sitting is 107 or 90s please let me know what > you guy;s think I am on cardizem 300 and Linspriol for blood pressure. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 Hi - in case you missed it the first couple of times, GET ANOTHER PULMO GUY! You need a doctor you can trust, who understands and tried to guide you through your illness, not shoveling out coffin nails. There are lots of pulmonologist in the world, there are lots of forms of pulmonary disease and there are lots of ways to deal with going through the process of learning about the disease, none of which include yelling! OK calmly now, seriously, ya need another doc. It sounds like he does not really understand the concept of providing care. Doctors are really sort of a high end service provider, like hotels. There are the high end suite-type places that understand what travelers need and then there are the Motel-6 type places and they are fine if there is nothing else to sleep in for say the next 200 miles or so, but would you really want a Motel-6 doc? Where the desk clerk is rude, the continental breakfast was stuck out 2 days and he yells at you if you want fresh coffee??? HMMMM??? Girl go find you some high-end suite-type doc who practices medical care. S, Lubbock, TX NSIP w/PF 12/2006 > > Hi my name IS Card > I was Diagonsed with The Begining of Pulmornary Fibrosis. > In Sept Of 2008 and I HAVE A FEW Question's? of concern's > I feel terrible all the time. I saw my Pulmornary Doctor on wedesday > I Asked him what stage of Fibrosis I had said I DON'T KNOW > asked what he thought how long I had to live he said two early to > tell did not like his bed side matter you allready getting your > coffin > ready he said to me. he said that oxygen level looks good so far > I have Sleep apena I am getting my mask on wedesday.also yelling at > me about my weight. I UNDERSTAND that I put weight on also I have > had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the > hosiptal yesteday i feel so lightheaded and dizzy hardley can see > and weak and tired > that said the some thing as alway's that it is Veritgo.and they gave > me Myccline for dizzyness in which it is does nothing,I feel very > weakand tired I sufferd with chronic sunises and asthma and gerd > before I got this monster. I dont like my pulmornary how talks to me > like there is nothing wrong with me knowing what he has found and the > way i feel. > plus my racing heart.my pulse is always 130 with exercise or walking > any type of exercise.sitting is 107 or 90s please let me know what > you guy;s think I am on cardizem 300 and Linspriol for blood pressure. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 , Im sorry if I seem to rant but there is NO EXCUSE for that kind of treatment from your pulmodoc, you CAN change doctors and find one who will take time to answer all your questions. I take prilosec for GERD and use my cpap religeously. And Im claustraphobic! You also need an oximeter as your sats are probably dropping when your hr is so high. Its trying to push more o2 faster since you are sob. Hope this helps. I love my doctors wish I could share them with some of you that have horrible ones Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2009 Report Share Posted March 1, 2009 , Welcome to the group!!! Please persue getting another Pulmonologist. I've had the nasty, rude doc experience. You don't deserve to be treated that way! Even more importantly you deserve to have a doctor who is interested in helping you have the best quality of life from here on out! It sounds like you have more testing that needs to be done. A 6- minute walk needs to be at the top of that list. This will tell the doc what's happening with your heart rate and your o2 during activity. You need a doctor who welcomes your questions and concerns. Please start your week off by looking for someone new! 33 FL IPF dx 1/06 > > > Hi my name IS Card > > I was Diagonsed with The Begining of Pulmornary Fibrosis. > > In Sept Of 2008 and I HAVE A FEW Question's? of concern's > > I feel terrible all the time. I saw my Pulmornary Doctor on wedesday > > I Asked him what stage of Fibrosis I had said I DON'T KNOW > > asked what he thought how long I had to live he said two early to > > tell did not like his bed side matter you allready getting your > > coffin > > ready he said to me. he said that oxygen level looks good so far > > I have Sleep apena I am getting my mask on wedesday.also yelling at > > me about my weight. I UNDERSTAND that I put weight on also I have > > had a Hysteromty a full one that I AM ALSO HORMOMEL I WENT to the > > hosiptal yesteday i feel so lightheaded and dizzy hardley can see > > and weak and tired > > that said the some thing as alway's that it is Veritgo.and they gave > > me Myccline for dizzyness in which it is does nothing,I feel very > > weakand tired I sufferd with chronic sunises and asthma and gerd > > before I got this monster. I dont like my pulmornary how talks to me > > like there is nothing wrong with me knowing what he has found and the > > way i feel. > > plus my racing heart.my pulse is always 130 with exercise or walking > > any type of exercise.sitting is 107 or 90s please let me know what > > you guy;s think I am on cardizem 300 and Linspriol for blood pressure. > > > > > > > > > > -- > Dyane 53 Phoenix, AZ Diabetic 96, NSIP 02 Breast Cancer 02, Fibro 07, IPF > 07, lipodermatosclerosis 08, and Ive forgotten the rest HA HA > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2009 Report Share Posted March 19, 2009 Hi Everyone sorry have not checked in a while computer went down so we bought a new one runs great.I hope everyone is doing well. I Went to MY Pulmornary Doc Today saw his asstanist told her how I was feeling was not to happy with me . I have been feeling like shaky hand's heart racing feel very weak I was doing housework feel very outwinded.hard time with any activinty, she also said that my lung's sound clear.she wants to see my heart doctor as soon I can. have been busy with the boy's they just started baseball practice and my yougest birthday party is saturday I hope to get some answers with these doctors. Thank's Card IPF 2008 Quote Link to comment Share on other sites More sharing options...
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