life after hemoptysis

[Jane]

Josh had a small episode of bleeding today, just out of the blue. Before this he had always gotten a little bubbly feeling first. It is always scary, but even more so when it happens without warning.

He's worried now that it will happen at school, during a tennis match or on the bus when he is unprepared. He's really worried about having other kids see it. Too many "what ifs".

What do you guys do to get past the fear of having it happen again? I knowits his problem to deal with, but I thought maybe someone had some advice.

Thanks.

 

[Jane]

Josh had a small episode of bleeding today, just out of the blue. Before this he had always gotten a little bubbly feeling first. It is always scary, but even more so when it happens without warning.

He's worried now that it will happen at school, during a tennis match or on the bus when he is unprepared. He's really worried about having other kids see it. Too many "what ifs".

What do you guys do to get past the fear of having it happen again? I knowits his problem to deal with, but I thought maybe someone had some advice.

Thanks.

 

[Jane]

Josh had a small episode of bleeding today, just out of the blue. Before this he had always gotten a little bubbly feeling first. It is always scary, but even more so when it happens without warning.

He's worried now that it will happen at school, during a tennis match or on the bus when he is unprepared. He's really worried about having other kids see it. Too many "what ifs".

What do you guys do to get past the fear of having it happen again? I knowits his problem to deal with, but I thought maybe someone had some advice.

Thanks.

 

[NoExcuses]

This is the most difficult thing for me to deal with with CF. After an episode, I am constantly worried and freaked out about it happening again. It just follows me all the time.

I wish there was some magic trick to take it away. For me, it's just time.... as time passes and I get farther and farther away from the episode, it's not as close to the front of my mind.

Other than that, it's one of those great life skills that CF teaches us. For as much as CF is horrible, it gives us amazing life skills years before our peers. I encounter things in life right now as a 25 year old that I am so well equipped to deal with because of what I've been through with CF - and my peers just can't handle these same situations.

Hope he feels better. It really is scary....

 

[NoExcuses]

This is the most difficult thing for me to deal with with CF. After an episode, I am constantly worried and freaked out about it happening again. It just follows me all the time.

I wish there was some magic trick to take it away. For me, it's just time.... as time passes and I get farther and farther away from the episode, it's not as close to the front of my mind.

Other than that, it's one of those great life skills that CF teaches us. For as much as CF is horrible, it gives us amazing life skills years before our peers. I encounter things in life right now as a 25 year old that I am so well equipped to deal with because of what I've been through with CF - and my peers just can't handle these same situations.

Hope he feels better. It really is scary....

 

[NoExcuses]

This is the most difficult thing for me to deal with with CF. After an episode, I am constantly worried and freaked out about it happening again. It just follows me all the time.

I wish there was some magic trick to take it away. For me, it's just time.... as time passes and I get farther and farther away from the episode, it's not as close to the front of my mind.

Other than that, it's one of those great life skills that CF teaches us. For as much as CF is horrible, it gives us amazing life skills years before our peers. I encounter things in life right now as a 25 year old that I am so well equipped to deal with because of what I've been through with CF - and my peers just can't handle these same situations.

Hope he feels better. It really is scary....

 

[JazzysMom]

Basically everything Amy says applies to me. I feel like I am on eggshells after having an episode. I wonder if it will happen in school when I take Jazmine in or some place else that I cant run out or duck into the bathroom. I dont have much advise except to take it one day or one activity at a time and as more time passes he will feel better!

 

[JazzysMom]

Basically everything Amy says applies to me. I feel like I am on eggshells after having an episode. I wonder if it will happen in school when I take Jazmine in or some place else that I cant run out or duck into the bathroom. I dont have much advise except to take it one day or one activity at a time and as more time passes he will feel better!

 

[JazzysMom]

Basically everything Amy says applies to me. I feel like I am on eggshells after having an episode. I wonder if it will happen in school when I take Jazmine in or some place else that I cant run out or duck into the bathroom. I dont have much advise except to take it one day or one activity at a time and as more time passes he will feel better!

 

[Jane]

Thanks you guys.

 

[Jane]

Thanks you guys.

 

[Jane]

Thanks you guys.

 

[Kelli]

Hey Jane,
I'm a major bleeder, so my opinion might be a little different about bleeding. I usually bleed when I lay down, so maybe if he's stretching (laying down, bending over) that might bring on some blood. But sometimes mine are with exercise, so I just try to slow down what I'm doing (I go to the gym 3 days a week). I've heard that COLD water helps, when you sip it slowly.
I'd just tell him to try to breathe slower and remain calm. I know it can be scary but if it's not a big bleed, it's basically not going to cause harm (at least for me it's that way).
I'm sure he can feel it (that bubbly feeling he has) so that is a good indication that he needs to chill for a second. I don't know if he's close enough with his coach to mention this or not, but maybe if he could just be still, get his breathing under control, etc. that might help.
I bleed so often that at night, I'll wake my husband up to tell him, and without even opening his eyes, he'll say "Is it bad, ok, you're ok." It's funny that now there is basically no fear anymore.
I'm not sure this really helped him or you but it's my take on the whole thing. If you have any questions PM me.

Good luck to you and your son!!!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 female, CF

 

[Kelli]

Hey Jane,
I'm a major bleeder, so my opinion might be a little different about bleeding. I usually bleed when I lay down, so maybe if he's stretching (laying down, bending over) that might bring on some blood. But sometimes mine are with exercise, so I just try to slow down what I'm doing (I go to the gym 3 days a week). I've heard that COLD water helps, when you sip it slowly.
I'd just tell him to try to breathe slower and remain calm. I know it can be scary but if it's not a big bleed, it's basically not going to cause harm (at least for me it's that way).
I'm sure he can feel it (that bubbly feeling he has) so that is a good indication that he needs to chill for a second. I don't know if he's close enough with his coach to mention this or not, but maybe if he could just be still, get his breathing under control, etc. that might help.
I bleed so often that at night, I'll wake my husband up to tell him, and without even opening his eyes, he'll say "Is it bad, ok, you're ok." It's funny that now there is basically no fear anymore.
I'm not sure this really helped him or you but it's my take on the whole thing. If you have any questions PM me.

Good luck to you and your son!!!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 female, CF

 

[Kelli]

Hey Jane,
I'm a major bleeder, so my opinion might be a little different about bleeding. I usually bleed when I lay down, so maybe if he's stretching (laying down, bending over) that might bring on some blood. But sometimes mine are with exercise, so I just try to slow down what I'm doing (I go to the gym 3 days a week). I've heard that COLD water helps, when you sip it slowly.
I'd just tell him to try to breathe slower and remain calm. I know it can be scary but if it's not a big bleed, it's basically not going to cause harm (at least for me it's that way).
I'm sure he can feel it (that bubbly feeling he has) so that is a good indication that he needs to chill for a second. I don't know if he's close enough with his coach to mention this or not, but maybe if he could just be still, get his breathing under control, etc. that might help.
I bleed so often that at night, I'll wake my husband up to tell him, and without even opening his eyes, he'll say "Is it bad, ok, you're ok." It's funny that now there is basically no fear anymore.
I'm not sure this really helped him or you but it's my take on the whole thing. If you have any questions PM me.

Good luck to you and your son!!!
<img src="i/expressions/face-icon-small-smile.gif" border="0">
Kelli
29 female, CF

 

[EnergyGal]

I never was a heavy bleeder. If I coughed a few streaks of blood that was it for me. I know of a few friends in the past who said they would lie down and cough up blood and it was during relations with their boyfriends or husband. It sounds like bleeding comes about when stress hits. Is this true? I know if you have an infection, bleeding is common or if you cough hard and you see some blood that is possible from coughing hard. I would be scared too if that happened to me especially if I was young.

Now that I know all of these energy techniques that is all I would do. If you pray, that will help calm a person down.

The more a person stresses out, I would imagine the bleeding would take longer to stop. Sorry but that is all the advice I can give.

Since your son knows how to use EFT, I would suggest he starts tapping on the fear of blood and see if that helps him.

I know for me, once I started eating extremely healthy and added chelated minerals and selenium to my diet, I never saw blood again even during my transplant waiting days.

 

[EnergyGal]

I never was a heavy bleeder. If I coughed a few streaks of blood that was it for me. I know of a few friends in the past who said they would lie down and cough up blood and it was during relations with their boyfriends or husband. It sounds like bleeding comes about when stress hits. Is this true? I know if you have an infection, bleeding is common or if you cough hard and you see some blood that is possible from coughing hard. I would be scared too if that happened to me especially if I was young.

Now that I know all of these energy techniques that is all I would do. If you pray, that will help calm a person down.

The more a person stresses out, I would imagine the bleeding would take longer to stop. Sorry but that is all the advice I can give.

Since your son knows how to use EFT, I would suggest he starts tapping on the fear of blood and see if that helps him.

I know for me, once I started eating extremely healthy and added chelated minerals and selenium to my diet, I never saw blood again even during my transplant waiting days.

 

[EnergyGal]

I never was a heavy bleeder. If I coughed a few streaks of blood that was it for me. I know of a few friends in the past who said they would lie down and cough up blood and it was during relations with their boyfriends or husband. It sounds like bleeding comes about when stress hits. Is this true? I know if you have an infection, bleeding is common or if you cough hard and you see some blood that is possible from coughing hard. I would be scared too if that happened to me especially if I was young.

Now that I know all of these energy techniques that is all I would do. If you pray, that will help calm a person down.

The more a person stresses out, I would imagine the bleeding would take longer to stop. Sorry but that is all the advice I can give.

Since your son knows how to use EFT, I would suggest he starts tapping on the fear of blood and see if that helps him.

I know for me, once I started eating extremely healthy and added chelated minerals and selenium to my diet, I never saw blood again even during my transplant waiting days.

 

[Debi]

My experience mirrors Amy's. My first bleed happened about 4 or 5 months ago. I wasn't stressed. In fact, things were going great. I'd been feeling wonderful. I reached for the phone at work to make a call, and wham, out of nowhere the gurgling started and I began coughing up blood. Lots of it.

For weeks afterwards I thought constantly about it. Would it happen again? How would I know it was coming? What if it happened in the middle of a meeting at work? In the grocery store? Every time I reached for my phone at work I wondered if it would happen. I was making myself crazy with it. Finally, with the passage of time and the realization that I couldn't predict it, but I could probably handle it, the anxiety lessened.

I think it's a good idea to talk to the coach. For me, COLD water worked (I had a much more minor episode of it about two weeks later) both times, so I feel like I have some control if it happens again. He might just want to let a few people know what to do for him in case it happens again.

I'm sorry he has to deal with so much at such a young age. But, as Amy said, he will definitely be capable of handling more of the things life throws his way than his peers.

 

[Debi]

My experience mirrors Amy's. My first bleed happened about 4 or 5 months ago. I wasn't stressed. In fact, things were going great. I'd been feeling wonderful. I reached for the phone at work to make a call, and wham, out of nowhere the gurgling started and I began coughing up blood. Lots of it.

For weeks afterwards I thought constantly about it. Would it happen again? How would I know it was coming? What if it happened in the middle of a meeting at work? In the grocery store? Every time I reached for my phone at work I wondered if it would happen. I was making myself crazy with it. Finally, with the passage of time and the realization that I couldn't predict it, but I could probably handle it, the anxiety lessened.

I think it's a good idea to talk to the coach. For me, COLD water worked (I had a much more minor episode of it about two weeks later) both times, so I feel like I have some control if it happens again. He might just want to let a few people know what to do for him in case it happens again.

I'm sorry he has to deal with so much at such a young age. But, as Amy said, he will definitely be capable of handling more of the things life throws his way than his peers.