tag:blogger.com,1999:blog-1846340485746544317.post1803203319655971496..comments2023-12-24T07:09:28.531-05:00Comments on NoExcuses: I was a CFer coughing blood for HalloweenUnknownnoreply@blogger.comBlogger7125tag:blogger.com,1999:blog-1846340485746544317.post-4131836265324424332009-11-10T01:51:30.670-05:002009-11-10T01:51:30.670-05:00Sorry to hear about that Amy!! I hope that it all ...Sorry to hear about that Amy!! I hope that it all gets figured out. Hemo is scary. I have been a bit accustomed to it (since Gess doesn't even call the doc if it is less than 1/2 cup), but any bleed can be dangerous and scary.Lisahttps://www.blogger.com/profile/17766422197931332768noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-67024191156283814952009-11-05T06:50:39.855-05:002009-11-05T06:50:39.855-05:00Hey Amy my blogger showed the post that it looks l...Hey Amy my blogger showed the post that it looks like you tried to take back but since I saw it I will send my thoughts here and then you can just choose not to publish them. I had the same sort of 'issue' with my doctor. I have a long standing mis-trust of doctors until a repor has been built and I feel I can trust them and after years of them treating me to have them tell me not that I was over reacting per se but that I was 'working myself into it' and getting depressed etc. I wasnt and I felt very unhappy about that. I could FEEL there was something wrong and we agreed to disagree and I went on my way. Then a week later when what I knew would happen did happen and it got worse with more pleurisy and hemoptysis I did feel I coudl not trust them and they would not take me seriously so that is what ended up in me leaving and going to a new clinic.<br /><br />Now I am not suggesting that you leave of course your doctors sound really great. My clinic has since lost adult accredidation partially by choice but i know I made the right decision. <br /><br />I guess doctors get the right to have a bad day too and maybe he is not seeing it from your perspective. It sounds like good dialogue was had throughout this time but maybe he was talking about bleeding in greater quantities or not on weekends who knows. When I had my problems I set up an actual appointment slot to 'talk' maybe you could do this? <br /><br />I do believe there are some people where bleeding may not be a sign of infection maybe he is leaning that way? <br /><br />I am a strong personality and I can tell you are as well so is he more abliging and/or meek? Maybe each time was one thing he said a bit more than he agreed with and now he is into alot more he doesnt agree with and that is why he sent the social worker in?<br /><br />Anyway just know I'm thinking of you and you can drop me a line any time on cf2 or cf.com or my blog. <br /><br />have a better day<br /><br />oh and NO I dont think you are freaking out at ALLNicolehttps://www.blogger.com/profile/11131896596880297493noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-37419159932511762632009-11-04T17:04:57.499-05:002009-11-04T17:04:57.499-05:00Oh Amy, I'm sorry to read this. CF always pick...Oh Amy, I'm sorry to read this. CF always picks the fun nights to rear its ugly head, huh? <br /><br />Seriously, I know 1/3 of a cup would freak me out! Glad you're getting the help you need now and hope you feel much better soon!<br /><br />You'll be in my thoughts!Piperhttps://www.blogger.com/profile/01992462169607238118noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-29607355091239677192009-11-04T16:44:33.476-05:002009-11-04T16:44:33.476-05:00ugh, so sorry to hear this. Hemo is such a nasty, ...ugh, so sorry to hear this. Hemo is such a nasty, creepy, no-easy-way-to-play-down kind of thing, no matter how big or small, or how many times it happens (you never get "used to it", really). That gurggly crackle is just about the worst feeling in the world.<br /><br />And what a waste of an awesome, timely costume! :o)<br /><br />Hope you get everything sorted out soon, IR or not. You're in my thoughts!Jessicahttps://www.blogger.com/profile/13257021143930525182noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-88156883986381026632009-11-04T14:34:43.957-05:002009-11-04T14:34:43.957-05:00Amy,
I've posted this on the forums before, b...Amy,<br /><br />I've posted this on the forums before, but here it is again, in case this helps.<br /><br />I had three embolizations for hemoptysis. I was still bleeding even after the 3rd embolization. I finally decided to stop Pulmozyme. When I stopped it, the bleeding stopped too. Unfortunately, my lung function went down fast without it. I added it back, and function came back to baseline. I have found through experimentation, that I can take Pulmozyme once every three days and not have lung function affected while keeping the bleeding away. Since I started doing this, I've been problem free for 3 years now, with the exception of minor streaks when I've been sick.<br /><br />This may not be your problem, but it is worth a try to see. I'm so sorry you are going through this. I hated this worse than anything. My heart started beating fast just reading about it happening to you!<br /><br />BeckiAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-24541925948982192392009-11-04T13:22:37.079-05:002009-11-04T13:22:37.079-05:00Dangit Amy!!!! Tell your lungs to stop messing aro...Dangit Amy!!!! Tell your lungs to stop messing around :) Please keep us updated. Thinking about you.<br /><br />RonnieAnonymoushttps://www.blogger.com/profile/06849674714471543078noreply@blogger.comtag:blogger.com,1999:blog-1846340485746544317.post-17923596055728071162009-11-04T11:22:45.002-05:002009-11-04T11:22:45.002-05:00I'm sorry to hear all this Amy! It sounds very...I'm sorry to hear all this Amy! It sounds very scary when it happens. <br /><br />Thinking of you.CowTownhttps://www.blogger.com/profile/15756130935907522719noreply@blogger.com