Coughing up blood again...

A

Alaina

New member
I am a 32 yow/cf/bronchiectasis/mycobacterium abcessus

I have had trouble with hemoptysis since I was diagnosed at age 18. That is how they diagnosed me. I have probably had 10 embolizations over the past 14 years. I cough of blood most of time when I am about to start my period. I have had 4 pretty significant episodes since yesterday mornng. I don't feel like I have an exacerbation. I have been feeling good lately. I am so frustrated that this keeps interupting life. I have a wonderful husband and beautiful 6 year old daughter who I know goes through pain when they see me like this. I just wonder what type of treatments some of you may take for hemoptysis. They are pretty sure I have endimetrial tissue in my lungs, which causes the catamenial hemoptysis. Stress, discouraged, needing new answers...
 
A

Alaina

New member
I am a 32 yow/cf/bronchiectasis/mycobacterium abcessus

I have had trouble with hemoptysis since I was diagnosed at age 18. That is how they diagnosed me. I have probably had 10 embolizations over the past 14 years. I cough of blood most of time when I am about to start my period. I have had 4 pretty significant episodes since yesterday mornng. I don't feel like I have an exacerbation. I have been feeling good lately. I am so frustrated that this keeps interupting life. I have a wonderful husband and beautiful 6 year old daughter who I know goes through pain when they see me like this. I just wonder what type of treatments some of you may take for hemoptysis. They are pretty sure I have endimetrial tissue in my lungs, which causes the catamenial hemoptysis. Stress, discouraged, needing new answers...
 
A

Alaina

New member
I am a 32 yow/cf/bronchiectasis/mycobacterium abcessus
<br />
<br />I have had trouble with hemoptysis since I was diagnosed at age 18. That is how they diagnosed me. I have probably had 10 embolizations over the past 14 years. I cough of blood most of time when I am about to start my period. I have had 4 pretty significant episodes since yesterday mornng. I don't feel like I have an exacerbation. I have been feeling good lately. I am so frustrated that this keeps interupting life. I have a wonderful husband and beautiful 6 year old daughter who I know goes through pain when they see me like this. I just wonder what type of treatments some of you may take for hemoptysis. They are pretty sure I have endimetrial tissue in my lungs, which causes the catamenial hemoptysis. Stress, discouraged, needing new answers...
 
K

KLeigh

New member
Hi Alaina-
I have had been dealing with hemoptysis for about 7 years now. I had an embolization about 2 years ago & it only stopped the bleed for about 6 months. My lungs bleed for no reason what-so-ever sometimes. I'll lay down to go to bed & the second i roll in the wrong position they are bleeding. My doctors have not told me anything I can do except exercise & workout my lungs to keep them strong. Which is hard because then we have coughing spells which can cause the hemoptysis as well. For a while my dr. put me on a blood thickner to try & stop the bleeding but it only caused a blood clot.
Right after the lung embolization my doctor tested my IGE levels (thru blood work). They were EXTREMELY high & he diagnosed me with ABPA, Pulmonary aspergillosis. Which is basically to say I have mold growing in my lungs. To keep the mold down i am on 5 mg of steroids a day & when my IGE levels go up they put me on Itraconazole for 6 months to keep the infection down. This has helped control my hemoptysis.
I'm not saying that you have ABPA but it's worth looking into if it can help control your hemoptysis.
It's really had to have your lungs bleed. The day after i always tell my husband "i feel like a truck ran over my chest."
I hope i helped... if you have any questions feel free to PM me.
 
K

KLeigh

New member
Hi Alaina-
I have had been dealing with hemoptysis for about 7 years now. I had an embolization about 2 years ago & it only stopped the bleed for about 6 months. My lungs bleed for no reason what-so-ever sometimes. I'll lay down to go to bed & the second i roll in the wrong position they are bleeding. My doctors have not told me anything I can do except exercise & workout my lungs to keep them strong. Which is hard because then we have coughing spells which can cause the hemoptysis as well. For a while my dr. put me on a blood thickner to try & stop the bleeding but it only caused a blood clot.
Right after the lung embolization my doctor tested my IGE levels (thru blood work). They were EXTREMELY high & he diagnosed me with ABPA, Pulmonary aspergillosis. Which is basically to say I have mold growing in my lungs. To keep the mold down i am on 5 mg of steroids a day & when my IGE levels go up they put me on Itraconazole for 6 months to keep the infection down. This has helped control my hemoptysis.
I'm not saying that you have ABPA but it's worth looking into if it can help control your hemoptysis.
It's really had to have your lungs bleed. The day after i always tell my husband "i feel like a truck ran over my chest."
I hope i helped... if you have any questions feel free to PM me.
 
K

KLeigh

New member
Hi Alaina-
<br />I have had been dealing with hemoptysis for about 7 years now. I had an embolization about 2 years ago & it only stopped the bleed for about 6 months. My lungs bleed for no reason what-so-ever sometimes. I'll lay down to go to bed & the second i roll in the wrong position they are bleeding. My doctors have not told me anything I can do except exercise & workout my lungs to keep them strong. Which is hard because then we have coughing spells which can cause the hemoptysis as well. For a while my dr. put me on a blood thickner to try & stop the bleeding but it only caused a blood clot.
<br />Right after the lung embolization my doctor tested my IGE levels (thru blood work). They were EXTREMELY high & he diagnosed me with ABPA, Pulmonary aspergillosis. Which is basically to say I have mold growing in my lungs. To keep the mold down i am on 5 mg of steroids a day & when my IGE levels go up they put me on Itraconazole for 6 months to keep the infection down. This has helped control my hemoptysis.
<br />I'm not saying that you have ABPA but it's worth looking into if it can help control your hemoptysis.
<br />It's really had to have your lungs bleed. The day after i always tell my husband "i feel like a truck ran over my chest."
<br />I hope i helped... if you have any questions feel free to PM me.
 
M

Melissa75

Administrator
I am sorry. So much hemoptysis sounds stressful and scary.
Have you ever considered going on a birth control pill regimen whereby you skip the placebo pills and start a new pack every 21 days? You could "arrange" to have only four periods a year and this might reduce the hemoptysis, especially if it is from endometrial tissue.
(I discussed this with my doc once b/c of the "perfect" timing of my exacerbations...I didn't end up doing it, but I keep it in mind.)
 
M

Melissa75

Administrator
I am sorry. So much hemoptysis sounds stressful and scary.
Have you ever considered going on a birth control pill regimen whereby you skip the placebo pills and start a new pack every 21 days? You could "arrange" to have only four periods a year and this might reduce the hemoptysis, especially if it is from endometrial tissue.
(I discussed this with my doc once b/c of the "perfect" timing of my exacerbations...I didn't end up doing it, but I keep it in mind.)
 
M

Melissa75

Administrator
I am sorry. So much hemoptysis sounds stressful and scary.
<br />Have you ever considered going on a birth control pill regimen whereby you skip the placebo pills and start a new pack every 21 days? You could "arrange" to have only four periods a year and this might reduce the hemoptysis, especially if it is from endometrial tissue.
<br />(I discussed this with my doc once b/c of the "perfect" timing of my exacerbations...I didn't end up doing it, but I keep it in mind.)
 
W

welshwitch

Guest
Vitamin K! It helps your blood clot and is very helpful (because us CFers have a natural shortage of it).

When I have a hemoptysis episode I up my dosage to two a day. You can get Vitamin K at most health food grocery stores.

Other things I do:

*Take a break from pulmozyme
*REST
*Stay away from smoke
*Avoid all things that I'm allergic to (cats, etc.)
*Make sure I take my Azithromycin (anti inflammatory antibiotic that I'm on 3 times per week)

It usually resolves within a day or two.

Feel better! Let us know your progress!
 
W

welshwitch

Guest
Vitamin K! It helps your blood clot and is very helpful (because us CFers have a natural shortage of it).

When I have a hemoptysis episode I up my dosage to two a day. You can get Vitamin K at most health food grocery stores.

Other things I do:

*Take a break from pulmozyme
*REST
*Stay away from smoke
*Avoid all things that I'm allergic to (cats, etc.)
*Make sure I take my Azithromycin (anti inflammatory antibiotic that I'm on 3 times per week)

It usually resolves within a day or two.

Feel better! Let us know your progress!
 
W

welshwitch

Guest
Vitamin K! It helps your blood clot and is very helpful (because us CFers have a natural shortage of it).
<br />
<br />When I have a hemoptysis episode I up my dosage to two a day. You can get Vitamin K at most health food grocery stores.
<br />
<br />Other things I do:
<br />
<br />*Take a break from pulmozyme
<br />*REST
<br />*Stay away from smoke
<br />*Avoid all things that I'm allergic to (cats, etc.)
<br />*Make sure I take my Azithromycin (anti inflammatory antibiotic that I'm on 3 times per week)
<br />
<br />It usually resolves within a day or two.
<br />
<br />Feel better! Let us know your progress!
 
P

PatrickM

New member
My son has had a similar thing going on. His MD told him no chest pt for 48 hours. Then another 48 hours before he does any nebulizers at all. He also takes 10 mg of vitamin k per day.

Hope you feel better soon.
 
P

PatrickM

New member
My son has had a similar thing going on. His MD told him no chest pt for 48 hours. Then another 48 hours before he does any nebulizers at all. He also takes 10 mg of vitamin k per day.

Hope you feel better soon.
 
P

PatrickM

New member
My son has had a similar thing going on. His MD told him no chest pt for 48 hours. Then another 48 hours before he does any nebulizers at all. He also takes 10 mg of vitamin k per day.
<br />
<br />Hope you feel better soon.
 
A

Alaina

New member
Thanks for the kind words. I have had two episodes today<img src="i/expressions/face-icon-small-sad.gif" border="0"> I doubled my Vit. K dose yesterday and today. Will continue to do so. My dr. called in Celebrex which I went to fill and it was 300.00 so I didn't get it. I am in my medicare "gap" which is just lovely! I feel so defeated right now which is NOT me. I am in a valley and I need to rise above. Thanks for your responses. As bad as it sucks to go through this, it is helpful knowing I am not alone.
 
A

Alaina

New member
Thanks for the kind words. I have had two episodes today<img src="i/expressions/face-icon-small-sad.gif" border="0"> I doubled my Vit. K dose yesterday and today. Will continue to do so. My dr. called in Celebrex which I went to fill and it was 300.00 so I didn't get it. I am in my medicare "gap" which is just lovely! I feel so defeated right now which is NOT me. I am in a valley and I need to rise above. Thanks for your responses. As bad as it sucks to go through this, it is helpful knowing I am not alone.
 
A

Alaina

New member
Thanks for the kind words. I have had two episodes today<img src="i/expressions/face-icon-small-sad.gif" border="0"> I doubled my Vit. K dose yesterday and today. Will continue to do so. My dr. called in Celebrex which I went to fill and it was 300.00 so I didn't get it. I am in my medicare "gap" which is just lovely! I feel so defeated right now which is NOT me. I am in a valley and I need to rise above. Thanks for your responses. As bad as it sucks to go through this, it is helpful knowing I am not alone.
 
You must log in or register to reply here.
Top