Ok i'll try to make this fast due to me needing to be somewhere...
So my bleeds have now reached the stage of being atleast once a week, sometimes twice. Last night I did my vest and nebs, coughed up some goo till what I was coughing up was basically clear, and I basically wasn't congested. I also show no fever, weakness, being rundown etc which is typical with infection symptoms as you guys know...
I finished my vest and stuff, and went to lay down, and WHAMO massive bleed. I took 3 doses of vit K (in addition to what I take daily), and 1000mg of l-lysine and went to the toilet to cough it all up till it stopped. It took a while, but it finally quit, but my sleep was pretty bad because I was wheezing and gurgling and stuff. (when it was happening) the blood was coming out my nose, spraying out of my mouth, all over the floor and onto the toilet seat...I told my girl that if I ever turn up missing, and the use luminol in the bathroom, she is sooooo screwed lol (see I can find something funny in anything bad)!!
Anyways, as I said my bleeds had gotten to being once a week, and now after last night, are at twice a week. I called my docs person last week to talk about options. When I called her I added that i'm sure he will want to treat this as an infection with iv's and oral antibiotics, and that is fine, but before we take that route, can we please try and rule out any other potentialities with say an MRI with contrast (as has been recommended to me here by you guys, which makes perfect sense), or a catscan, petscan, whatever that would best apply to my lungs/veins in my lungs to see if there is something other than an infection going on...The assistant told me she would talk to the doc and get back with me. That friday (last friday) she left a message on my phone saying his treatment was the iv's and oral antis and if I will comply (saying no to the MRI/whatever scan).
It annoyed me because the guy and I are fairly tight, and BS like buddies. I look at it like, even if it is probably infection, why not soothe my mind (and his) that there is nothing else wrong...Besides I hadn't had a scan of my lungs since I was in my early 20's. It would help (I would think) to know what state of damage my lungs are in, where the most damage is localized to, see if anything is structurally bad, whatever, etc. I told her I would come in today and do the midline, and get the MRI done at one time, and she hasn't called me back. I'm calling her here as soon as im done with my vest and stuff, but I need a days notice to come in and do anything due to work.
On top of all this I got an interview for my dream job that went amazingly well (career for the rest of my life type job), and I can so see my luck being so crappy that if they call me back to offer me the position, I am on hardcore iv's. I had a meeting with my two bosses at work and told them I would probably need to do some iv's at work discreetly, and when learning about how I would do it, said ok.
I think the big problem with my doc is that he always sees me as crystal clear lung wise, 5'11 200 lbs with muscle and generally thriving, so he treats this kind of lite. I have something going on that i need to correct because my quality of life is way crappy now.
Also, I start to get paranoid thinking that well maybe one of my aresols are causing it, or atleast irritating the situation. Is hypertonic saline known to help cause hemoptysis? What about collistimethate (generic for collistin)? I have been on pulmozyme forever, and have heard that causes bleeds, but going off that might be more bad than good as others have said.
Also I lift weights religiously 3 times a week. I'm now up to 3 sets of 10 @ 250 lbs on the benchpress, and my body is looking extremely good. If I get a midline and do the antibiotics (obviously more important than weights), that will probably mean no weight lifting. Also, no beer on the weekends (my one vice).
I know a lot of you guys are in a much more sorry state than me, and I feel for you guys. But I am kind of at my wits end. Between the drive to get a better job/career, my healthcare fiasco hanging over my head, no real quality of life, constant massive bleeds, and a doctor that doesn't seem to want to be as proactive as he can be compared to what I hear about your docs...I'm kind of in a world of ***** right now mentally. Meanwhile my girl is seeing my disease accelerate, and remembers seeing the other cf's we have visited that were end stage and how horrible that was, and im sure its tearing her apart...
I think the closest other cf center besides tampa is located in orlando. Does anyone go there? Any word on how good/proactive they are? As I said, my doc is good and knows his crap, it just seems there are things he could do that he doesnt. For example he has never done anything on me blood work wise to determine my inflammation level (that he has told me about, or I have asked)...He has done "A complete blood work", but I doubt that was included. Aside from the obvious need to be on iv's now, I kind of don't know what to do afterwards...
Any words of advice would be appreciated.
So my bleeds have now reached the stage of being atleast once a week, sometimes twice. Last night I did my vest and nebs, coughed up some goo till what I was coughing up was basically clear, and I basically wasn't congested. I also show no fever, weakness, being rundown etc which is typical with infection symptoms as you guys know...
I finished my vest and stuff, and went to lay down, and WHAMO massive bleed. I took 3 doses of vit K (in addition to what I take daily), and 1000mg of l-lysine and went to the toilet to cough it all up till it stopped. It took a while, but it finally quit, but my sleep was pretty bad because I was wheezing and gurgling and stuff. (when it was happening) the blood was coming out my nose, spraying out of my mouth, all over the floor and onto the toilet seat...I told my girl that if I ever turn up missing, and the use luminol in the bathroom, she is sooooo screwed lol (see I can find something funny in anything bad)!!
Anyways, as I said my bleeds had gotten to being once a week, and now after last night, are at twice a week. I called my docs person last week to talk about options. When I called her I added that i'm sure he will want to treat this as an infection with iv's and oral antibiotics, and that is fine, but before we take that route, can we please try and rule out any other potentialities with say an MRI with contrast (as has been recommended to me here by you guys, which makes perfect sense), or a catscan, petscan, whatever that would best apply to my lungs/veins in my lungs to see if there is something other than an infection going on...The assistant told me she would talk to the doc and get back with me. That friday (last friday) she left a message on my phone saying his treatment was the iv's and oral antis and if I will comply (saying no to the MRI/whatever scan).
It annoyed me because the guy and I are fairly tight, and BS like buddies. I look at it like, even if it is probably infection, why not soothe my mind (and his) that there is nothing else wrong...Besides I hadn't had a scan of my lungs since I was in my early 20's. It would help (I would think) to know what state of damage my lungs are in, where the most damage is localized to, see if anything is structurally bad, whatever, etc. I told her I would come in today and do the midline, and get the MRI done at one time, and she hasn't called me back. I'm calling her here as soon as im done with my vest and stuff, but I need a days notice to come in and do anything due to work.
On top of all this I got an interview for my dream job that went amazingly well (career for the rest of my life type job), and I can so see my luck being so crappy that if they call me back to offer me the position, I am on hardcore iv's. I had a meeting with my two bosses at work and told them I would probably need to do some iv's at work discreetly, and when learning about how I would do it, said ok.
I think the big problem with my doc is that he always sees me as crystal clear lung wise, 5'11 200 lbs with muscle and generally thriving, so he treats this kind of lite. I have something going on that i need to correct because my quality of life is way crappy now.
Also, I start to get paranoid thinking that well maybe one of my aresols are causing it, or atleast irritating the situation. Is hypertonic saline known to help cause hemoptysis? What about collistimethate (generic for collistin)? I have been on pulmozyme forever, and have heard that causes bleeds, but going off that might be more bad than good as others have said.
Also I lift weights religiously 3 times a week. I'm now up to 3 sets of 10 @ 250 lbs on the benchpress, and my body is looking extremely good. If I get a midline and do the antibiotics (obviously more important than weights), that will probably mean no weight lifting. Also, no beer on the weekends (my one vice).
I know a lot of you guys are in a much more sorry state than me, and I feel for you guys. But I am kind of at my wits end. Between the drive to get a better job/career, my healthcare fiasco hanging over my head, no real quality of life, constant massive bleeds, and a doctor that doesn't seem to want to be as proactive as he can be compared to what I hear about your docs...I'm kind of in a world of ***** right now mentally. Meanwhile my girl is seeing my disease accelerate, and remembers seeing the other cf's we have visited that were end stage and how horrible that was, and im sure its tearing her apart...
I think the closest other cf center besides tampa is located in orlando. Does anyone go there? Any word on how good/proactive they are? As I said, my doc is good and knows his crap, it just seems there are things he could do that he doesnt. For example he has never done anything on me blood work wise to determine my inflammation level (that he has told me about, or I have asked)...He has done "A complete blood work", but I doubt that was included. Aside from the obvious need to be on iv's now, I kind of don't know what to do afterwards...
Any words of advice would be appreciated.