Hemoptysis battle again

[jdprecious]

what about the cf center in Jacksonville??? This is the one we attend and I feel that they are very aggressive. (Not sure if you read too much about Jaelyn going in for her first tune up but they put her in for 2 weeks due to just a persistant cough/no bacteria cultured/no drop in FEV/no nothing other than a normal cf cough) I dont know what their protocol is for hemoptysis but I can call and ask for you if you think it would help to come here. Also, I think Gainesville has a cf clinic as well. Gainesville is about an hour + drive and Jacksonille is 2+ hours from Tampa, i think. PM me if you want me to do some research for you.

 

[jdprecious]

what about the cf center in Jacksonville??? This is the one we attend and I feel that they are very aggressive. (Not sure if you read too much about Jaelyn going in for her first tune up but they put her in for 2 weeks due to just a persistant cough/no bacteria cultured/no drop in FEV/no nothing other than a normal cf cough) I dont know what their protocol is for hemoptysis but I can call and ask for you if you think it would help to come here. Also, I think Gainesville has a cf clinic as well. Gainesville is about an hour + drive and Jacksonille is 2+ hours from Tampa, i think. PM me if you want me to do some research for you.

 

[jdprecious]

what about the cf center in Jacksonville??? This is the one we attend and I feel that they are very aggressive. (Not sure if you read too much about Jaelyn going in for her first tune up but they put her in for 2 weeks due to just a persistant cough/no bacteria cultured/no drop in FEV/no nothing other than a normal cf cough) I dont know what their protocol is for hemoptysis but I can call and ask for you if you think it would help to come here. Also, I think Gainesville has a cf clinic as well. Gainesville is about an hour + drive and Jacksonille is 2+ hours from Tampa, i think. PM me if you want me to do some research for you.

 

[jdprecious]

what about the cf center in Jacksonville??? This is the one we attend and I feel that they are very aggressive. (Not sure if you read too much about Jaelyn going in for her first tune up but they put her in for 2 weeks due to just a persistant cough/no bacteria cultured/no drop in FEV/no nothing other than a normal cf cough) I dont know what their protocol is for hemoptysis but I can call and ask for you if you think it would help to come here. Also, I think Gainesville has a cf clinic as well. Gainesville is about an hour + drive and Jacksonille is 2+ hours from Tampa, i think. PM me if you want me to do some research for you.

 

[jdprecious]

what about the cf center in Jacksonville??? This is the one we attend and I feel that they are very aggressive. (Not sure if you read too much about Jaelyn going in for her first tune up but they put her in for 2 weeks due to just a persistant cough/no bacteria cultured/no drop in FEV/no nothing other than a normal cf cough) I dont know what their protocol is for hemoptysis but I can call and ask for you if you think it would help to come here. Also, I think Gainesville has a cf clinic as well. Gainesville is about an hour + drive and Jacksonille is 2+ hours from Tampa, i think. PM me if you want me to do some research for you.

 

[KrazyKat]

Sorry to hear you're having a hard time Sean. Now take a deep breath and lets get this in perspective.

1) MRI/Catscan vs IVs and Orals - Compromise with them. Yes you will do IVs, BUT they WILL schedule you in for a scan of your lungs. Lets face it, a tune up is not going to do you any harm, annoying yes, but can only be a good thing, it's not like you are on them all the time, thereby running your body down. Don't give in. You haven't had a scan for over ten years, there is reason enough. Throw the word 'negligence' around and be pushy until you get what you want.

2) you are worried about your dream job happening and then you perhaps being stuck to an iv pole at the time - i wouldn't worry, if they want you badly enough, you can disguise what is going on long enough to seal the deal. If you are planning on being up front with them about your health, then go to every interview, appointment, assessment they ask you to do, without fail, even if it nearly kills you. THEN tell them you were on IVs the entire time and that's about as bad as it gets for you, at this stage anyway. That should impress them no end.

3) If you are feeling well in yourself, not off colour, good appetite, good exercise tolerance etc, there is nothing seriously wrong for you to worry about. You have had hemoptysis in the past and have then managed to get rid of it for years. Something nees tweaking again is all and if anybody can work out what that is, it's you. You will get this sorted in no time.

Stop worrying. You don't need to. <img src="i/expressions/rose.gif" border="0">

 

[KrazyKat]

Sorry to hear you're having a hard time Sean. Now take a deep breath and lets get this in perspective.

1) MRI/Catscan vs IVs and Orals - Compromise with them. Yes you will do IVs, BUT they WILL schedule you in for a scan of your lungs. Lets face it, a tune up is not going to do you any harm, annoying yes, but can only be a good thing, it's not like you are on them all the time, thereby running your body down. Don't give in. You haven't had a scan for over ten years, there is reason enough. Throw the word 'negligence' around and be pushy until you get what you want.

2) you are worried about your dream job happening and then you perhaps being stuck to an iv pole at the time - i wouldn't worry, if they want you badly enough, you can disguise what is going on long enough to seal the deal. If you are planning on being up front with them about your health, then go to every interview, appointment, assessment they ask you to do, without fail, even if it nearly kills you. THEN tell them you were on IVs the entire time and that's about as bad as it gets for you, at this stage anyway. That should impress them no end.

3) If you are feeling well in yourself, not off colour, good appetite, good exercise tolerance etc, there is nothing seriously wrong for you to worry about. You have had hemoptysis in the past and have then managed to get rid of it for years. Something nees tweaking again is all and if anybody can work out what that is, it's you. You will get this sorted in no time.

Stop worrying. You don't need to. <img src="i/expressions/rose.gif" border="0">

 

[KrazyKat]

Sorry to hear you're having a hard time Sean. Now take a deep breath and lets get this in perspective.

1) MRI/Catscan vs IVs and Orals - Compromise with them. Yes you will do IVs, BUT they WILL schedule you in for a scan of your lungs. Lets face it, a tune up is not going to do you any harm, annoying yes, but can only be a good thing, it's not like you are on them all the time, thereby running your body down. Don't give in. You haven't had a scan for over ten years, there is reason enough. Throw the word 'negligence' around and be pushy until you get what you want.

2) you are worried about your dream job happening and then you perhaps being stuck to an iv pole at the time - i wouldn't worry, if they want you badly enough, you can disguise what is going on long enough to seal the deal. If you are planning on being up front with them about your health, then go to every interview, appointment, assessment they ask you to do, without fail, even if it nearly kills you. THEN tell them you were on IVs the entire time and that's about as bad as it gets for you, at this stage anyway. That should impress them no end.

3) If you are feeling well in yourself, not off colour, good appetite, good exercise tolerance etc, there is nothing seriously wrong for you to worry about. You have had hemoptysis in the past and have then managed to get rid of it for years. Something nees tweaking again is all and if anybody can work out what that is, it's you. You will get this sorted in no time.

Stop worrying. You don't need to. <img src="i/expressions/rose.gif" border="0">

 

[KrazyKat]

Sorry to hear you're having a hard time Sean. Now take a deep breath and lets get this in perspective.

1) MRI/Catscan vs IVs and Orals - Compromise with them. Yes you will do IVs, BUT they WILL schedule you in for a scan of your lungs. Lets face it, a tune up is not going to do you any harm, annoying yes, but can only be a good thing, it's not like you are on them all the time, thereby running your body down. Don't give in. You haven't had a scan for over ten years, there is reason enough. Throw the word 'negligence' around and be pushy until you get what you want.

2) you are worried about your dream job happening and then you perhaps being stuck to an iv pole at the time - i wouldn't worry, if they want you badly enough, you can disguise what is going on long enough to seal the deal. If you are planning on being up front with them about your health, then go to every interview, appointment, assessment they ask you to do, without fail, even if it nearly kills you. THEN tell them you were on IVs the entire time and that's about as bad as it gets for you, at this stage anyway. That should impress them no end.

3) If you are feeling well in yourself, not off colour, good appetite, good exercise tolerance etc, there is nothing seriously wrong for you to worry about. You have had hemoptysis in the past and have then managed to get rid of it for years. Something nees tweaking again is all and if anybody can work out what that is, it's you. You will get this sorted in no time.

Stop worrying. You don't need to. <img src="i/expressions/rose.gif" border="0">

 

[KrazyKat]

Sorry to hear you're having a hard time Sean. Now take a deep breath and lets get this in perspective.

1) MRI/Catscan vs IVs and Orals - Compromise with them. Yes you will do IVs, BUT they WILL schedule you in for a scan of your lungs. Lets face it, a tune up is not going to do you any harm, annoying yes, but can only be a good thing, it's not like you are on them all the time, thereby running your body down. Don't give in. You haven't had a scan for over ten years, there is reason enough. Throw the word 'negligence' around and be pushy until you get what you want.

2) you are worried about your dream job happening and then you perhaps being stuck to an iv pole at the time - i wouldn't worry, if they want you badly enough, you can disguise what is going on long enough to seal the deal. If you are planning on being up front with them about your health, then go to every interview, appointment, assessment they ask you to do, without fail, even if it nearly kills you. THEN tell them you were on IVs the entire time and that's about as bad as it gets for you, at this stage anyway. That should impress them no end.

3) If you are feeling well in yourself, not off colour, good appetite, good exercise tolerance etc, there is nothing seriously wrong for you to worry about. You have had hemoptysis in the past and have then managed to get rid of it for years. Something nees tweaking again is all and if anybody can work out what that is, it's you. You will get this sorted in no time.

Stop worrying. You don't need to. <img src="i/expressions/rose.gif" border="0">

 

[lovingBenandCambree]

Well just from my own dealings of hemoptysis it sounds like it is time to be embolized. I had a major bleed and then it went to about once a week and just kept increasing. It got to be that within about 12 hours I would bleed massively. That is when they did an embolization and I didnt have any other problems for at least 2 years. Just my thoughts. They have done a scope on me to make sure they know where the bleeding is coming from so they embolize the right area. Good luck. I know how much this sucks and how scary this is.

 

[lovingBenandCambree]

Well just from my own dealings of hemoptysis it sounds like it is time to be embolized. I had a major bleed and then it went to about once a week and just kept increasing. It got to be that within about 12 hours I would bleed massively. That is when they did an embolization and I didnt have any other problems for at least 2 years. Just my thoughts. They have done a scope on me to make sure they know where the bleeding is coming from so they embolize the right area. Good luck. I know how much this sucks and how scary this is.

 

[lovingBenandCambree]

Well just from my own dealings of hemoptysis it sounds like it is time to be embolized. I had a major bleed and then it went to about once a week and just kept increasing. It got to be that within about 12 hours I would bleed massively. That is when they did an embolization and I didnt have any other problems for at least 2 years. Just my thoughts. They have done a scope on me to make sure they know where the bleeding is coming from so they embolize the right area. Good luck. I know how much this sucks and how scary this is.

 

[lovingBenandCambree]

Well just from my own dealings of hemoptysis it sounds like it is time to be embolized. I had a major bleed and then it went to about once a week and just kept increasing. It got to be that within about 12 hours I would bleed massively. That is when they did an embolization and I didnt have any other problems for at least 2 years. Just my thoughts. They have done a scope on me to make sure they know where the bleeding is coming from so they embolize the right area. Good luck. I know how much this sucks and how scary this is.

 

[lovingBenandCambree]

Well just from my own dealings of hemoptysis it sounds like it is time to be embolized. I had a major bleed and then it went to about once a week and just kept increasing. It got to be that within about 12 hours I would bleed massively. That is when they did an embolization and I didnt have any other problems for at least 2 years. Just my thoughts. They have done a scope on me to make sure they know where the bleeding is coming from so they embolize the right area. Good luck. I know how much this sucks and how scary this is.

 

[ElizabethlovesChris]

I previously posted a long reply on your other thread you started a couple of weeks ago with my suggestions for your hemoptysis. Yes, I completely agree with others here stating you need to take this seriously and push for a cat scan and if it's cupfuls of fresh, frothy blood you may need to be embolized.

My husband has been embolized 7 times in the last year and a half - very frustrating.

I'm not going to retype everything I put in your other thread, but bottom line, you need to stop working out with weight lifting. It is very likely that despite how 'healthy' you are in other areas, that this is putting WAY too much interthoracic pressure on those arteries and could be a major contributing factor to your bleeds. Does it suck? Hell yes. Did my husband have to give it up? Hell yes.

Good luck to you.

 

[ElizabethlovesChris]

I previously posted a long reply on your other thread you started a couple of weeks ago with my suggestions for your hemoptysis. Yes, I completely agree with others here stating you need to take this seriously and push for a cat scan and if it's cupfuls of fresh, frothy blood you may need to be embolized.

My husband has been embolized 7 times in the last year and a half - very frustrating.

I'm not going to retype everything I put in your other thread, but bottom line, you need to stop working out with weight lifting. It is very likely that despite how 'healthy' you are in other areas, that this is putting WAY too much interthoracic pressure on those arteries and could be a major contributing factor to your bleeds. Does it suck? Hell yes. Did my husband have to give it up? Hell yes.

Good luck to you.

 

[ElizabethlovesChris]

I previously posted a long reply on your other thread you started a couple of weeks ago with my suggestions for your hemoptysis. Yes, I completely agree with others here stating you need to take this seriously and push for a cat scan and if it's cupfuls of fresh, frothy blood you may need to be embolized.

My husband has been embolized 7 times in the last year and a half - very frustrating.

I'm not going to retype everything I put in your other thread, but bottom line, you need to stop working out with weight lifting. It is very likely that despite how 'healthy' you are in other areas, that this is putting WAY too much interthoracic pressure on those arteries and could be a major contributing factor to your bleeds. Does it suck? Hell yes. Did my husband have to give it up? Hell yes.

Good luck to you.

 

[ElizabethlovesChris]

I previously posted a long reply on your other thread you started a couple of weeks ago with my suggestions for your hemoptysis. Yes, I completely agree with others here stating you need to take this seriously and push for a cat scan and if it's cupfuls of fresh, frothy blood you may need to be embolized.

My husband has been embolized 7 times in the last year and a half - very frustrating.

I'm not going to retype everything I put in your other thread, but bottom line, you need to stop working out with weight lifting. It is very likely that despite how 'healthy' you are in other areas, that this is putting WAY too much interthoracic pressure on those arteries and could be a major contributing factor to your bleeds. Does it suck? Hell yes. Did my husband have to give it up? Hell yes.

Good luck to you.

 

[ElizabethlovesChris]

I previously posted a long reply on your other thread you started a couple of weeks ago with my suggestions for your hemoptysis. Yes, I completely agree with others here stating you need to take this seriously and push for a cat scan and if it's cupfuls of fresh, frothy blood you may need to be embolized.

My husband has been embolized 7 times in the last year and a half - very frustrating.

I'm not going to retype everything I put in your other thread, but bottom line, you need to stop working out with weight lifting. It is very likely that despite how 'healthy' you are in other areas, that this is putting WAY too much interthoracic pressure on those arteries and could be a major contributing factor to your bleeds. Does it suck? Hell yes. Did my husband have to give it up? Hell yes.

Good luck to you.