Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi ... I sure understand frustration. Some days it seems anything that can, will go haywire. Isn't that "'s Law"? There don't appear to be any easy answers does there. Have you discussed this with you dr? Sometimes they pull a rabbit out of the hat. I don't know about Flonase or an alternative...I'm not on any meds for sinus but I think I'm rapidly going there. I'll be sure and ask my dr for something cheaper! Hang in there , does wonders. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! New Pulmonologist Just an update....I had an appointment with a new pulmonologist last week, because my other Pulmodoc closed his office. I was rather apprehensive about going to a new doc, but was pleasantly suprised. His was terrific.I was having difficult breathing and coughing, so I used my portable oxygen while we were talking. He used an oximeter while I was still sitting (after I took of my oxygen) and it registered 98. He waited about 5 minutes and it registered 92. Since the readings were high, why do you think I had problems.He ordered 12 bloodtests (I didn't think to ask him what types of tests). He order Flonase because of sinus drainage. My insurance doesn't pay any of the charge ($59.95/generic) so I cancelled the order. Is there something comparable?In the meantime, he wants me to go for pulmonary rehabilitation (3 times/week for 10 weeks). There are only 2 facilities in my city, and they're at least 40 minutes (one way) from my home. My partner would have to take time from work, so I don't have transportation. Any transportation from companies that I can use, charge and Medicare doesn't pay for this. Even if Medicare did pay something, I don't have extra money to pay the difference.I'm VERY frustrated! Basically I just wanted to vent my feelings. This disease really sucks. I don't need anymore stress in my life. As some of you may know from reading some of my posts, I've been having an upbeat attitude. But....enough is enough!Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Hi ... I sure understand frustration. Some days it seems anything that can, will go haywire. Isn't that "'s Law"? There don't appear to be any easy answers does there. Have you discussed this with you dr? Sometimes they pull a rabbit out of the hat. I don't know about Flonase or an alternative...I'm not on any meds for sinus but I think I'm rapidly going there. I'll be sure and ask my dr for something cheaper! Hang in there , does wonders. MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there! New Pulmonologist Just an update....I had an appointment with a new pulmonologist last week, because my other Pulmodoc closed his office. I was rather apprehensive about going to a new doc, but was pleasantly suprised. His was terrific.I was having difficult breathing and coughing, so I used my portable oxygen while we were talking. He used an oximeter while I was still sitting (after I took of my oxygen) and it registered 98. He waited about 5 minutes and it registered 92. Since the readings were high, why do you think I had problems.He ordered 12 bloodtests (I didn't think to ask him what types of tests). He order Flonase because of sinus drainage. My insurance doesn't pay any of the charge ($59.95/generic) so I cancelled the order. Is there something comparable?In the meantime, he wants me to go for pulmonary rehabilitation (3 times/week for 10 weeks). There are only 2 facilities in my city, and they're at least 40 minutes (one way) from my home. My partner would have to take time from work, so I don't have transportation. Any transportation from companies that I can use, charge and Medicare doesn't pay for this. Even if Medicare did pay something, I don't have extra money to pay the difference.I'm VERY frustrated! Basically I just wanted to vent my feelings. This disease really sucks. I don't need anymore stress in my life. As some of you may know from reading some of my posts, I've been having an upbeat attitude. But....enough is enough!Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 Buy a yoga tape on deep breathing, forget prescriptions, start walking even if all you can manage is out the door at first. Google anti inflammatory diet, I like Dr. Perricone's diet. Try to get fit, eat better, and avoid Doctors unless in crisis. They can't cure us, and more tests only drain our energy and money. Enjoy your life, spend your time and money wisely. Subject: New PulmonologistTo: Breathe-Support Date: Tuesday, March 17, 2009, 11:41 AM Just an update....I had an appointment with a new pulmonologist last week, because my other Pulmodoc closed his office. I was rather apprehensive about going to a new doc, but was pleasantly suprised. His was terrific.I was having difficult breathing and coughing, so I used my portable oxygen while we were talking. He used an oximeter while I was still sitting (after I took of my oxygen) and it registered 98. He waited about 5 minutes and it registered 92. Since the readings were high, why do you think I had problems.He ordered 12 bloodtests (I didn't think to ask him what types of tests). He order Flonase because of sinus drainage. My insurance doesn't pay any of the charge ($59.95/generic) so I cancelled the order. Is there something comparable?In the meantime, he wants me to go for pulmonary rehabilitation (3 times/week for 10 weeks). There are only 2 facilities in my city, and they're at least 40 minutes (one way) from my home. My partner would have to take time from work, so I don't have transportation. Any transportation from companies that I can use, charge and Medicare doesn't pay for this. Even if Medicare did pay something, I don't have extra money to pay the difference.I'm VERY frustrated! Basically I just wanted to vent my feelings. This disease really sucks. I don't need anymore stress in my life. As some of you may know from reading some of my posts, I've been having an upbeat attitude. But....enough is enough!Thanks! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 /Kathleen , I understand your frustation. I, however, do believe there may be some points midway between all they wanted you to do and what Kathleen has suggested, combining some of the best of both. While perhaps the doctors can't cure us they can treat other problems we have and the right doctors can help us live better with the disease. As to treatment for the disease each of us is very different and there is no universal right or wrong. I'll try to respond to some of your issues one by one. The small parts are so much easier to deal with than tackling it all as one. First, as to the Flonase. Talk to the doctor and tell him the situation. Maybe he has a sample or certainly can find an alternative, something either your insurance covers or is available over the counter. As to your oximeter readings. Perhaps your congestion was causing the other problems. Also, sometimes we might find even at 92 some difficulties and need a bit more. Last, I imagine right after sitting you were less than 92 based on the fall to 92 without oxygen. When I sit or lay down the immediate thing that happens is that my saturation often plummets. However, it will slowly rise back. I may be at 96% and lay down to go to bed and it drop to the upper 80's and then rise back up as my body adjusts to the position. As to pulmonary rehab, I benefitted from going three times and learning exactly what I was to do and how. Then I began my exercising at home. Something like that is a possibility. If not, you can use your oximeter and begin some exercising by walking if not treadmill and you can learn some breathing exercises. I would also suggest an incentive spirometer and, if doctor agrees it is appropriate a PFlex Respiratory Muscle Trainer. So while I agree wholeheartedly with fit and eat better I don't agree with the avoidance of doctors or prescriptions. Clearing up your sinus drainage may be quite beneficial to how you feel. Many here do take over the counter products such as Mucinex. To others, I know we hesitate but we shouldn't in making our doctors aware of financial issues and limitations. Most of us have them one way or the other. I have meds which have been changed to help with my costs and I've requested and received samples. > > > From: johnj6992 johnj6992@... > Subject: New Pulmonologist > To: Breathe-Support > Date: Tuesday, March 17, 2009, 11:41 AM > > > > > > > Just an update....I had an appointment with a new pulmonologist last week, because my other Pulmodoc closed his office. I was rather apprehensive about going to a new doc, but was pleasantly suprised. His was terrific. > > I was having difficult breathing and coughing, so I used my portable oxygen while we were talking. He used an oximeter while I was still sitting (after I took of my oxygen) and it registered 98. He waited about 5 minutes and it registered 92. Since the readings were high, why do you think I had problems. > > He ordered 12 bloodtests (I didn't think to ask him what types of tests). He order Flonase because of sinus drainage. My insurance doesn't pay any of the charge ($59.95/generic) so I cancelled the order. Is there something comparable? > > In the meantime, he wants me to go for pulmonary rehabilitation (3 times/week for 10 weeks). There are only 2 facilities in my city, and they're at least 40 minutes (one way) from my home. My partner would have to take time from work, so I don't have transportation. Any transportation from companies that I can use, charge and Medicare doesn't pay for this. Even if Medicare did pay something, I don't have extra money to pay the difference. > > I'm VERY frustrated! Basically I just wanted to vent my feelings. This disease really sucks. I don't need anymore stress in my life. As some of you may know from reading some of my posts, I've been having an upbeat attitude. But....enough is enough! > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 /Kathleen , I understand your frustation. I, however, do believe there may be some points midway between all they wanted you to do and what Kathleen has suggested, combining some of the best of both. While perhaps the doctors can't cure us they can treat other problems we have and the right doctors can help us live better with the disease. As to treatment for the disease each of us is very different and there is no universal right or wrong. I'll try to respond to some of your issues one by one. The small parts are so much easier to deal with than tackling it all as one. First, as to the Flonase. Talk to the doctor and tell him the situation. Maybe he has a sample or certainly can find an alternative, something either your insurance covers or is available over the counter. As to your oximeter readings. Perhaps your congestion was causing the other problems. Also, sometimes we might find even at 92 some difficulties and need a bit more. Last, I imagine right after sitting you were less than 92 based on the fall to 92 without oxygen. When I sit or lay down the immediate thing that happens is that my saturation often plummets. However, it will slowly rise back. I may be at 96% and lay down to go to bed and it drop to the upper 80's and then rise back up as my body adjusts to the position. As to pulmonary rehab, I benefitted from going three times and learning exactly what I was to do and how. Then I began my exercising at home. Something like that is a possibility. If not, you can use your oximeter and begin some exercising by walking if not treadmill and you can learn some breathing exercises. I would also suggest an incentive spirometer and, if doctor agrees it is appropriate a PFlex Respiratory Muscle Trainer. So while I agree wholeheartedly with fit and eat better I don't agree with the avoidance of doctors or prescriptions. Clearing up your sinus drainage may be quite beneficial to how you feel. Many here do take over the counter products such as Mucinex. To others, I know we hesitate but we shouldn't in making our doctors aware of financial issues and limitations. Most of us have them one way or the other. I have meds which have been changed to help with my costs and I've requested and received samples. > > > From: johnj6992 johnj6992@... > Subject: New Pulmonologist > To: Breathe-Support > Date: Tuesday, March 17, 2009, 11:41 AM > > > > > > > Just an update....I had an appointment with a new pulmonologist last week, because my other Pulmodoc closed his office. I was rather apprehensive about going to a new doc, but was pleasantly suprised. His was terrific. > > I was having difficult breathing and coughing, so I used my portable oxygen while we were talking. He used an oximeter while I was still sitting (after I took of my oxygen) and it registered 98. He waited about 5 minutes and it registered 92. Since the readings were high, why do you think I had problems. > > He ordered 12 bloodtests (I didn't think to ask him what types of tests). He order Flonase because of sinus drainage. My insurance doesn't pay any of the charge ($59.95/generic) so I cancelled the order. Is there something comparable? > > In the meantime, he wants me to go for pulmonary rehabilitation (3 times/week for 10 weeks). There are only 2 facilities in my city, and they're at least 40 minutes (one way) from my home. My partner would have to take time from work, so I don't have transportation. Any transportation from companies that I can use, charge and Medicare doesn't pay for this. Even if Medicare did pay something, I don't have extra money to pay the difference. > > I'm VERY frustrated! Basically I just wanted to vent my feelings. This disease really sucks. I don't need anymore stress in my life. As some of you may know from reading some of my posts, I've been having an upbeat attitude. But....enough is enough! > > Thanks! > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 17, 2009 Report Share Posted March 17, 2009 , Trying to catch up with board posts this evening and I just wanted to respond quickly to one issue in your message. Glaxo, the manufacturer of Flonase has a rather generous patient assistance program called Bridges to Access. You may be able to get the Flonase at no cost to you as I was able to get Advair for free back before I had Medicare Part D. Here is the link to the program: http://www.bridgestoaccess.com/ I hope this may help you. There are other programs from virtually all drug manufacturers. You can find these programs at www.needymeds.org. Beth Moderator Fibrotic NSIP 06/06 Dermatomyositis 11/08 To: Breathe-Support Sent: Tuesday, March 17, 2009 11:41:21 AMSubject: New Pulmonologist Just an update....I had an appointment with a new pulmonologist last week, because my other Pulmodoc closed his office. I was rather apprehensive about going to a new doc, but was pleasantly suprised. His was terrific.I was having difficult breathing and coughing, so I used my portable oxygen while we were talking. He used an oximeter while I was still sitting (after I took of my oxygen) and it registered 98. He waited about 5 minutes and it registered 92. Since the readings were high, why do you think I had problems.He ordered 12 bloodtests (I didn't think to ask him what types of tests). He order Flonase because of sinus drainage. My insurance doesn't pay any of the charge ($59.95/generic) so I cancelled the order. Is there something comparable?In the meantime, he wants me to go for pulmonary rehabilitation (3 times/week for 10 weeks). There are only 2 facilities in my city, and they're at least 40 minutes (one way) from my home. My partner would have to take time from work, so I don't have transportation. Any transportation from companies that I can use, charge and Medicare doesn't pay for this. Even if Medicare did pay something, I don't have extra money to pay the difference.I'm VERY frustrated! Basically I just wanted to vent my feelings. This disease really sucks. I don't need anymore stress in my life. As some of you may know from reading some of my posts, I've been having an upbeat attitude. But....enough is enough!Thanks! 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.