Guest guest Posted June 19, 2009 Report Share Posted June 19, 2009 Hi all this is the third time I have tried to send this. So if it ends up coming through multiple times.......... well you know - cyberpurgatory. LOL. Actually nothing I have posted for the past 3 days has come through. I think there was some kind of filter or something at the hotel blocking things. Anyway, we are in Frisco, CO for the weekend. It is very close to Vail for a geographical reference. Enjoying the mountains for the weekend. When we go back to Denver Sunday night we are checking into a different motel. I will try to catch up as soon as I can. We have been very busy. Ok. The real stuff. We have gotten a lot of exciting information this week. Turns out I do have moderate asthma (not severe reactive asthma). I also have Vocal Cord Dysfunction (VCD). The symptoms of the VCD are very similar to asthma and can be very hard to tell apart. The times that I just am fine one minute and quit moving are the next are VCD. When I go through a progression it is the asthma. From a review of my medical records, Dr. Pacheco (who is rated the #1 pulmonologist at the #1 pulmonology hospital - how about that for luck) feels that about half of my hospitalizations have been actual asthma and the rest VCD or infection. Also, she is not going to do any more testing at this point. She wants to work on the VCD and re-evaluate. If by controlling the VCD the tests improve, then we won't go any farther. If not we will. However, she feels that the atrophy of my lungs is steroid related. So, the plan of action is to work with a speech pathologist to control the VCD, an endocronologist for the steroid step-down, and to continue the pulmonary and aqua therapy. I already started with the speech pathologist who has given me one breathing exercise to do. I am seeing her three times a week, and next week we will add another exercise. I have an evaluation for the therapies tomorrow, and will start those next week. I will see the endocrinologist next Wednesday for an initial appointment. Then I see Dr. Pacheco again in three weeks. So, we know that we will be here for three weeks at a minimum. Depending on my progress with the VCD and how the steroid step-down is going, we will determine whether I can come on home or if I am going to need to be here longer term. In order to facilitate the steroid step-down we are going to start hydrocortisone (or hydrocortisol not sure a little confusion there) shots to replace the cortisol that my adrenal glands are not making. We are not going to use any more immune inhibitors. On that same line, I am increasing the Lexapro to 40mg/day. I am also showing swelling and redness in my throat that indicates that the GERD (Gastro-intestinal reflux disorder which is caused by the steroids) is not being properly controlled. So the protonix has been doubled. On the up side, we are dropping both the Clarinex D and Zyflo CR until I am lower on the steroids and we can determine if I actually need them. (I came up pretty much negative on all the allergy testing again!) I am also dropping the breathing treatments altogether if my peak flows are above 250. If they are below, I am to first to my VCD exercises then recheck. So, the neb treatments are on a PRN basis only! Hooray! The best news is that the asthma will be much easier to control once the VCD is controlled (and that is completely controllable just through breathing exercises - my orders for the month are no yelling, no whispering, and no extended conversations. Give you two guesses and the first one doesn't count as to which is the hardest for me! ROFL!). That means NO SURGERY!!!!!! As far as lung volumes are concerned, it will take a while, but I should regain most of my previous lung volume. Anywhere from 1 - 5 years.. That is where we are at right now. I will continue updates several times a week on the group (I still don't have it completely updated, but I promise I am working on it as time and energy allow).Thank you all for your continued love and support!Madelinehttp://health.groups.yahoo.com/group/Lungs_on_Vacation/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 That's great news! Hopefully they will be able to get teh VCD sorted, and you can get your life back. Jenn Tha can tek t'lass outta Yorkshire...! Don't brand me, don't classify me, don't tell me what to wear. I'll be who I want to be, and I'm proud to be me. Subject: Madeline updateTo: Asthma , LovingAsthmaSupport Date: Saturday, 20 June, 2009, 7:24 AM Hi all this is the third time I have tried to send this. So if it ends up coming through multiple times.......... well you know - cyberpurgatory. LOL. Actually nothing I have posted for the past 3 days has come through. I think there was some kind of filter or something at the hotel blocking things. Anyway, we are in Frisco, CO for the weekend. It is very close to Vail for a geographical reference. Enjoying the mountains for the weekend. When we go back to Denver Sunday night we are checking into a different motel. I will try to catch up as soon as I can. We have been very busy. Ok. The real stuff. We have gotten a lot of exciting information this week. Turns out I do have moderate asthma (not severe reactive asthma). I also have Vocal Cord Dysfunction (VCD). The symptoms of the VCD are very similar to asthma and can be very hard to tell apart. The times that I just am fine one minute and quit moving are the next are VCD. When I go through a progression it is the asthma. From a review of my medical records, Dr. Pacheco (who is rated the #1 pulmonologist at the #1 pulmonology hospital - how about that for luck) feels that about half of my hospitalizations have been actual asthma and the rest VCD or infection. Also, she is not going to do any more testing at this point. She wants to work on the VCD and re-evaluate. If by controlling the VCD the tests improve, then we won't go any farther. If not we will. However, she feels that the atrophy of my lungs is steroid related. So, the plan of action is to work with a speech pathologist to control the VCD, an endocronologist for the steroid step-down, and to continue the pulmonary and aqua therapy. I already started with the speech pathologist who has given me one breathing exercise to do. I am seeing her three times a week, and next week we will add another exercise. I have an evaluation for the therapies tomorrow, and will start those next week. I will see the endocrinologist next Wednesday for an initial appointment. Then I see Dr. Pacheco again in three weeks. So, we know that we will be here for three weeks at a minimum. Depending on my progress with the VCD and how the steroid step-down is going, we will determine whether I can come on home or if I am going to need to be here longer term. In order to facilitate the steroid step-down we are going to start hydrocortisone (or hydrocortisol not sure a little confusion there) shots to replace the cortisol that my adrenal glands are not making. We are not going to use any more immune inhibitors. On that same line, I am increasing the Lexapro to 40mg/day. I am also showing swelling and redness in my throat that indicates that the GERD (Gastro-intestinal reflux disorder which is caused by the steroids) is not being properly controlled. So the protonix has been doubled. On the up side, we are dropping both the Clarinex D and Zyflo CR until I am lower on the steroids and we can determine if I actually need them. (I came up pretty much negative on all the allergy testing again!) I am also dropping the breathing treatments altogether if my peak flows are above 250. If they are below, I am to first to my VCD exercises then recheck. So, the neb treatments are on a PRN basis only! Hooray! The best news is that the asthma will be much easier to control once the VCD is controlled (and that is completely controllable just through breathing exercises - my orders for the month are no yelling, no whispering, and no extended conversations. Give you two guesses and the first one doesn't count as to which is the hardest for me! ROFL!). That means NO SURGERY!!!!!! As far as lung volumes are concerned, it will take a while, but I should regain most of my previous lung volume. Anywhere from 1 - 5 years... That is where we are at right now. I will continue updates several times a week on the group (I still don't have it completely updated, but I promise I am working on it as time and energy allow).Thank you all for your continued love and support!Madelinehttp://health.groups.yahoo.com/group/Lungs_on_Vacation/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 That's great news! Hopefully they will be able to get teh VCD sorted, and you can get your life back. Jenn Tha can tek t'lass outta Yorkshire...! Don't brand me, don't classify me, don't tell me what to wear. I'll be who I want to be, and I'm proud to be me. Subject: Madeline updateTo: Asthma , LovingAsthmaSupport Date: Saturday, 20 June, 2009, 7:24 AM Hi all this is the third time I have tried to send this. So if it ends up coming through multiple times.......... well you know - cyberpurgatory. LOL. Actually nothing I have posted for the past 3 days has come through. I think there was some kind of filter or something at the hotel blocking things. Anyway, we are in Frisco, CO for the weekend. It is very close to Vail for a geographical reference. Enjoying the mountains for the weekend. When we go back to Denver Sunday night we are checking into a different motel. I will try to catch up as soon as I can. We have been very busy. Ok. The real stuff. We have gotten a lot of exciting information this week. Turns out I do have moderate asthma (not severe reactive asthma). I also have Vocal Cord Dysfunction (VCD). The symptoms of the VCD are very similar to asthma and can be very hard to tell apart. The times that I just am fine one minute and quit moving are the next are VCD. When I go through a progression it is the asthma. From a review of my medical records, Dr. Pacheco (who is rated the #1 pulmonologist at the #1 pulmonology hospital - how about that for luck) feels that about half of my hospitalizations have been actual asthma and the rest VCD or infection. Also, she is not going to do any more testing at this point. She wants to work on the VCD and re-evaluate. If by controlling the VCD the tests improve, then we won't go any farther. If not we will. However, she feels that the atrophy of my lungs is steroid related. So, the plan of action is to work with a speech pathologist to control the VCD, an endocronologist for the steroid step-down, and to continue the pulmonary and aqua therapy. I already started with the speech pathologist who has given me one breathing exercise to do. I am seeing her three times a week, and next week we will add another exercise. I have an evaluation for the therapies tomorrow, and will start those next week. I will see the endocrinologist next Wednesday for an initial appointment. Then I see Dr. Pacheco again in three weeks. So, we know that we will be here for three weeks at a minimum. Depending on my progress with the VCD and how the steroid step-down is going, we will determine whether I can come on home or if I am going to need to be here longer term. In order to facilitate the steroid step-down we are going to start hydrocortisone (or hydrocortisol not sure a little confusion there) shots to replace the cortisol that my adrenal glands are not making. We are not going to use any more immune inhibitors. On that same line, I am increasing the Lexapro to 40mg/day. I am also showing swelling and redness in my throat that indicates that the GERD (Gastro-intestinal reflux disorder which is caused by the steroids) is not being properly controlled. So the protonix has been doubled. On the up side, we are dropping both the Clarinex D and Zyflo CR until I am lower on the steroids and we can determine if I actually need them. (I came up pretty much negative on all the allergy testing again!) I am also dropping the breathing treatments altogether if my peak flows are above 250. If they are below, I am to first to my VCD exercises then recheck. So, the neb treatments are on a PRN basis only! Hooray! The best news is that the asthma will be much easier to control once the VCD is controlled (and that is completely controllable just through breathing exercises - my orders for the month are no yelling, no whispering, and no extended conversations. Give you two guesses and the first one doesn't count as to which is the hardest for me! ROFL!). That means NO SURGERY!!!!!! As far as lung volumes are concerned, it will take a while, but I should regain most of my previous lung volume. Anywhere from 1 - 5 years... That is where we are at right now. I will continue updates several times a week on the group (I still don't have it completely updated, but I promise I am working on it as time and energy allow).Thank you all for your continued love and support!Madelinehttp://health.groups.yahoo.com/group/Lungs_on_Vacation/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Hi Madeline, You sound great! Sounds like you have a lot of action going on there! Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Hi Madeline, You sound great! Sounds like you have a lot of action going on there! Alana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Hi Madeline, I just went for my check up when I had the upper and lower GI done. And I got the ok to go for my acid reflux sugery. I will let you know when it is going to be later probaly late Nov that way I won't miss any of my volleyball games that i work. To: Asthma ; LovingAsthmaSupport Sent: Saturday, June 20, 2009 12:24:55 AMSubject: Madeline update Hi all this is the third time I have tried to send this. So if it ends up coming through multiple times....... ... well you know - cyberpurgatory. LOL. Actually nothing I have posted for the past 3 days has come through. I think there was some kind of filter or something at the hotel blocking things. Anyway, we are in Frisco, CO for the weekend. It is very close to Vail for a geographical reference. Enjoying the mountains for the weekend. When we go back to Denver Sunday night we are checking into a different motel. I will try to catch up as soon as I can. We have been very busy. Ok. The real stuff. We have gotten a lot of exciting information this week. Turns out I do have moderate asthma (not severe reactive asthma). I also have Vocal Cord Dysfunction (VCD). The symptoms of the VCD are very similar to asthma and can be very hard to tell apart. The times that I just am fine one minute and quit moving are the next are VCD. When I go through a progression it is the asthma. From a review of my medical records, Dr. Pacheco (who is rated the #1 pulmonologist at the #1 pulmonology hospital - how about that for luck) feels that about half of my hospitalizations have been actual asthma and the rest VCD or infection. Also, she is not going to do any more testing at this point. She wants to work on the VCD and re-evaluate. If by controlling the VCD the tests improve, then we won't go any farther. If not we will. However, she feels that the atrophy of my lungs is steroid related. So, the plan of action is to work with a speech pathologist to control the VCD, an endocronologist for the steroid step-down, and to continue the pulmonary and aqua therapy. I already started with the speech pathologist who has given me one breathing exercise to do. I am seeing her three times a week, and next week we will add another exercise. I have an evaluation for the therapies tomorrow, and will start those next week. I will see the endocrinologist next Wednesday for an initial appointment. Then I see Dr. Pacheco again in three weeks. So, we know that we will be here for three weeks at a minimum. Depending on my progress with the VCD and how the steroid step-down is going, we will determine whether I can come on home or if I am going to need to be here longer term. In order to facilitate the steroid step-down we are going to start hydrocortisone (or hydrocortisol not sure a little confusion there) shots to replace the cortisol that my adrenal glands are not making. We are not going to use any more immune inhibitors. On that same line, I am increasing the Lexapro to 40mg/day. I am also showing swelling and redness in my throat that indicates that the GERD (Gastro-intestinal reflux disorder which is caused by the steroids) is not being properly controlled. So the protonix has been doubled. On the up side, we are dropping both the Clarinex D and Zyflo CR until I am lower on the steroids and we can determine if I actually need them. (I came up pretty much negative on all the allergy testing again!) I am also dropping the breathing treatments altogether if my peak flows are above 250. If they are below, I am to first to my VCD exercises then recheck. So, the neb treatments are on a PRN basis only! Hooray! The best news is that the asthma will be much easier to control once the VCD is controlled (and that is completely controllable just through breathing exercises - my orders for the month are no yelling, no whispering, and no extended conversations. Give you two guesses and the first one doesn't count as to which is the hardest for me! ROFL!). That means NO SURGERY!!!!! ! As far as lung volumes are concerned, it will take a while, but I should regain most of my previous lung volume. Anywhere from 1 - 5 years.. That is where we are at right now. I will continue updates several times a week on the group (I still don't have it completely updated, but I promise I am working on it as time and energy allow).Thank you all for your continued love and support!Madelinehttp://health. groups.yahoo. com/group/ Lungs_on_ Vacation/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Madeline, this is great news for you to finally have some answers!! Lets hope that things go as planned and that you can get down off these stupid steroids and have a more normal life again. Prayers are still flowing your way from here. Btw...101 for tomorrows temp here in Augusta, tonights low is 82. Ann Make your summer sizzle with fast and easy recipes for the grill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2009 Report Share Posted June 20, 2009 Madeline, this is great news for you to finally have some answers!! Lets hope that things go as planned and that you can get down off these stupid steroids and have a more normal life again. Prayers are still flowing your way from here. Btw...101 for tomorrows temp here in Augusta, tonights low is 82. Ann Make your summer sizzle with fast and easy recipes for the grill. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Madeline....this is wonderful news! This is almost exactly what my husband is dealing with. Only difference is his VCD started as a result of injury to his vocal cords during knee surgery over a year ago, Because of that speech therapy does not help most of the time. This is why a trach was necessary for him. I will say that since he has had the trach he has had several attacks but no trips to the ER...because he can breathe!! They immediately took him off the steroids and he has lost nearly 50 pounds and gone down 3 pants sizes. The drugs are not controlling his GERD very well and he may need surgery in the future to correct that. Unfortunately because of all the blood clot stuff surgery is out of the question for now.I found this site very helpful http://cantbreathesuspectvcd.com/ and also any link on Laryngopharyngeal Reflux. This is a failry new "disease" and it is a little controversial among some physicians...although for the life of me I cannot figure out why! This is most likley the cause of your asthma and if you can get your VCD and breathing under control and all those nasty meds out of your system you might see huge improvements!It's too bad it took us both so long to find answers but I'm glad we did! Took you having to go to CO and us to Stanford. But at least we have answers!Blessings to you!!!Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 21, 2009 Report Share Posted June 21, 2009 Madeline....this is wonderful news! This is almost exactly what my husband is dealing with. Only difference is his VCD started as a result of injury to his vocal cords during knee surgery over a year ago, Because of that speech therapy does not help most of the time. This is why a trach was necessary for him. I will say that since he has had the trach he has had several attacks but no trips to the ER...because he can breathe!! They immediately took him off the steroids and he has lost nearly 50 pounds and gone down 3 pants sizes. The drugs are not controlling his GERD very well and he may need surgery in the future to correct that. Unfortunately because of all the blood clot stuff surgery is out of the question for now.I found this site very helpful http://cantbreathesuspectvcd.com/ and also any link on Laryngopharyngeal Reflux. This is a failry new "disease" and it is a little controversial among some physicians...although for the life of me I cannot figure out why! This is most likley the cause of your asthma and if you can get your VCD and breathing under control and all those nasty meds out of your system you might see huge improvements!It's too bad it took us both so long to find answers but I'm glad we did! Took you having to go to CO and us to Stanford. But at least we have answers!Blessings to you!!!Rhonda Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 18, 2009 Report Share Posted July 18, 2009 I hate Pine Sol. It triggers me badly. I also get triggered by some cedar shrubs at the college I attend, so I had to find an alternate walking path between the lot where I park my car and the building where my class is. It takes a little bit longer to walk the new way, but I'm not being suffocated by the cedar bushes. I'm glad you're doing ok considering what you're dealing with. Hope you feel better soon and can come back online soon. To: asthma ; LovingAsthmaSupport ; lungs_on_vacation Sent: Saturday, July 18, 2009 7:29:10 AMSubject: Re: Madeline update Hi all. I am so sorry to have worried you. Thank you Cindi for calling. It means so much to know that I am truly cared about. This week has been very hard. I have not only been dealing with the steroid withdrawals, the speech therapists have been triggering my VCD and I have to work through the attacks with breathing methods. This week it is Pine Sol. The theory is that every time I trigger and work through it I am retraining those muscles to open up instead of clamming up. They keep telling me that eventually the vocal cords will get to a points where they may tremor, but won't clamp shut. So, the biggest problem right now is sheer physical exhaustion from fighting through the attacks and a headache that just won't quit. One or two minutes in front of a monitor and I feel like my head just may pop off. So, and I are heading to this little B & B outside of town tonight for a little pampering and relaxing. Anyone who has my cell phone number is welcome to call. I am breathing well and can talk. Just can't handle the computer. In fact, I am going to shut it down and it won't come back on until Monday! Love you guys! Madeline http://health. groups.yahoo. com/group/ Lungs_on_ Vacation/ From: Rodney & Cindi <rctsielvtc (DOT) net>To: asthmayahoogroups (DOT) comSent: Friday, July 17, 2009 7:48:22 PMSubject: Re: Madeline Just to let all know that I called Madeline and she is doing ok. I did not talk to her long because not making her talk to long.Hugs!CindiRodney & Cindi wrote: Madeline, we have not heard from you in a couple of days...please shoot us an email...Terry was worried too.love ya!CindiMadeline Ingram wrote: People do have legitamate reasons to buy this stuff you know. This is so scary. If one of the girls is sick or having sinus problems, I can't afford to run them to the doctor for every stuffy nose or common cold. Not only is it too expensive it is totally unnecessary. Madeline http://health/. groups.yahoo. .com/group/ Lungs_on_ Vacation/ From: sea_girl111 <sea_girl111@ yahoo.com>To: asthmayahoogroups (DOT) comSent: Wednesday, July 15, 2009 8:16:59 AMSubject: info - Missouri info -Missouri city passes ordinance requiring prescription for cold medication -http://www.columbia missourian. com/stories/ 2009/07/13/ requiring- rx-cold-drugs- gaining-steam- mo/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Madeline, Sounds nice! Alana > So, and I are heading to this little B & B outside of town tonight for a little pampering and relaxing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 19, 2009 Report Share Posted July 19, 2009 Madeline, Sounds nice! Alana > So, and I are heading to this little B & B outside of town tonight for a little pampering and relaxing. Quote Link to comment Share on other sites More sharing options...
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