Guest guest Posted January 11, 2008 Report Share Posted January 11, 2008 Leanne Ok, its just proposed by me, but every future pulmonologist (and for that matter the existing ones) should have to come read posts here for a while. Just lurking is fine. They would learn more about helping PF patients than any course they take. This is life with PF. Choices, challenges, ups, downs. I'd love to do some surveys of practicing pulmonologists and see how close their guesses come to reality. Do they all mention depression? One way or another the majority of us have it. Do they ask if you feel comfortable with your diagnosis? Almost half don't. Do they discuss all the aspects of prednisone and make sure their patients are properly monitored for the side effects. Do they discuss all the varying views we, the patients, have on VATS and biopsies? Do those with little PF experience quickly refer you to someone with more? Do they comprehend the agony of not getting time with them to learn or not being able to reach them for just five minutes of questions on the phone? Are they treating the disease or the patient? How many of them even know of boards such as this and recommend them to their patients? Other than as a speaker, if even then, have you ever had a pulmonologist come to a meeting of your local support group? Do they remember these paragraphs of their oath as follows in the modern version? I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug. I will not be ashamed to say " I know not, " nor will I fail to call in my colleagues when the skills of another are needed for a patient's recovery. I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person's family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick. I find it interesting to get a picture of our group and various > issues we've faced. The polls or surveys show as we all know that > there are no right answers and no absolutes or consistencies. > > Sleep Apnea > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52% > said yes and 48% no. Right down the middle. Does that mean the other > 48% have no problems or just they haven't been tested. Of those > tested, how many are on CPAPS or just taking oxygen for sleep. > > Advil > > There was a poll as to what percent had used Advil for coughing or > shortness of breath. The results were odd as all four who said they > had tried it said it had been successful in helping. No one said they > had tried it unsuccessfully. The vast majority (15) hadn't tried it > for those symptoms. > > Coke/Pepsi > > Ok, we knew going in this wouldn't be close....lol > > Prednisone > > 37% said they were on it and had seen a benefit. 11% on it with no > benefit. 28% have come off it or were coming off at the time. 20% > chose to not try it. Very mixed as we would have expected. I think it > shows why people need to learn and make their own decisions as it > clearly shows whats right for one isn't for others. Still with all > the negatives (and I'm among the haven't and won't group), 37% are on > it and feel its benefitting them. > > Diagnosis > > 52% here feel totally confident in their diagnosis as to specifically > which form of ILD they have. 31% have some confidence but not so > sure. 17% are completely in the land of confusion and frustration. > Tell me any other disease in which only half would feel confident of > their diagnosis. And this doesn't even account for what the confident > 52% had to go through to get there. Most diseases, you have a simple > test or two and have your answer. Here's the disease, here's the > treatment. Come back in a year. A good percentage of those of us > totally confident had to go through a very invasive surgery. > > When its easier to get a concensus on Coke versus Pepsi than anything > related to our disease, that tells you something. It just shows that > for everything we know about this disease there are hundreds of > things we don't know. All the more reason we need each other. > > > > > > > --------------------------------- > Looking for last minute shopping deals? Find them fast with Yahoo! Search. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Well, he has to be careful because he can't give medical advice which would be difficult if he participated. However, you might suggest he read just a few days worth or more if he wanted. I think he would definitely benefit and learn, particularly since he has shown interest. I know no pulmonologist has time to read all that goes on here but I just think one could read a bit and get the flavor, a little more insight into what its like to have the disease. Just like I know some spouse's read sometimes. I honestly believe the more you can put yourself in the place of your patient and understand, the better the doctor is. That's why in Texas, Counselors have a three year apprentice period. They can only start to understand what it feels like to have depression or anxiety or adhd by listening to patients. You can't learn that from a textbook. I find it > > interesting to get a picture of our group and various > > > issues we've faced. The polls or surveys show as we all know that > > > there are no right answers and no absolutes or consistencies. > > > > > > Sleep Apnea > > > > > > Leanne ran a poll asking if we'd been tested for sleep apnea. 52% > > > said yes and 48% no. Right down the middle. Does that mean the > > other > > > 48% have no problems or just they haven't been tested. Of those > > > tested, how many are on CPAPS or just taking oxygen for sleep. > > > > > > Advil > > > > > > There was a poll as to what percent had used Advil for coughing or > > > shortness of breath. The results were odd as all four who said they > > > had tried it said it had been successful in helping. No one said > > they > > > had tried it unsuccessfully. The vast majority (15) hadn't tried it > > > for those symptoms. > > > > > > Coke/Pepsi > > > > > > Ok, we knew going in this wouldn't be close....lol > > > > > > Prednisone > > > > > > 37% said they were on it and had seen a benefit. 11% on it with no > > > benefit. 28% have come off it or were coming off at the time. 20% > > > chose to not try it. Very mixed as we would have expected. I think > > it > > > shows why people need to learn and make their own decisions as it > > > clearly shows whats right for one isn't for others. Still with all > > > the negatives (and I'm among the haven't and won't group), 37% are > > on > > > it and feel its benefitting them. > > > > > > Diagnosis > > > > > > 52% here feel totally confident in their diagnosis as to > > specifically > > > which form of ILD they have. 31% have some confidence but not so > > > sure. 17% are completely in the land of confusion and frustration. > > > Tell me any other disease in which only half would feel confident > > of > > > their diagnosis. And this doesn't even account for what the > > confident > > > 52% had to go through to get there. Most diseases, you have a > > simple > > > test or two and have your answer. Here's the disease, here's the > > > treatment. Come back in a year. A good percentage of those of us > > > totally confident had to go through a very invasive surgery. > > > > > > When its easier to get a concensus on Coke versus Pepsi than > > anything > > > related to our disease, that tells you something. It just shows > > that > > > for everything we know about this disease there are hundreds of > > > things we don't know. All the more reason we need each other. > > > > > > > > > > > > > > > > > > > > > --------------------------------- > > > Looking for last minute shopping deals? Find them fast with Yahoo! > > Search. > > > > > > > > > > >------------------------------------------------------------------- ----- > > > >No virus found in this incoming message. > >Checked by AVG Free Edition. > >Version: 7.5.516 / Virus Database: 269.19.1/1220 - Release Date: 1/11/2008 6:09 PM > > > > > 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.