To all the bleeders out there...

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jmiller

New member
I am a bleeder and I'm wondering how mine compare with others- what's the frequency of your bleeds? The amount? Always correlated with infection? What do you do to treat your bleeds?

Unfortunately mine seem to be coming with increasing frequency and I'm wondering if that's normal. No infection brewing though.
 
J

jmiller

New member
I am a bleeder and I'm wondering how mine compare with others- what's the frequency of your bleeds? The amount? Always correlated with infection? What do you do to treat your bleeds?

Unfortunately mine seem to be coming with increasing frequency and I'm wondering if that's normal. No infection brewing though.
 
M

moxie1

Guest
Hi ,
I dealt with bleeding for quite a while. There was never any infection and although they would put me on IVs when I had a bleed, it didn't help because infection was not the cause.
My bleeds increased in frequency and amount until finally I needed an embolization. A year later I needed a second one and very soon after that I had a third. Two days after the 3rd embolization I started having hemoptysis again and there was even talk of a lobectomy.
We decided to look for other answers as to the cause and stopped Pulmozyme. The bleeding shut off like a faucet. My body didn't like not being on Pulmozyme because I began to lose lung function. We played around with the dosage and found that inhaling it once every 3 days allowed me to maintain lung function while keeping the bleeding away.
That was several years ago. I have not had any more bleeds. I've had a couple incidents of streaking when I've had bronchitis and was coughing all night long, but I know that was caused by irritation.
Pulmozyme is an enzyme....it is designed to "break down" things. I think that in areas that you don't have much mucus that it could be breaking down healthy lung tissue. That is my theory.
Hope you find some answers....I know how horrible it is.
 
M

moxie1

Guest
Hi ,
I dealt with bleeding for quite a while. There was never any infection and although they would put me on IVs when I had a bleed, it didn't help because infection was not the cause.
My bleeds increased in frequency and amount until finally I needed an embolization. A year later I needed a second one and very soon after that I had a third. Two days after the 3rd embolization I started having hemoptysis again and there was even talk of a lobectomy.
We decided to look for other answers as to the cause and stopped Pulmozyme. The bleeding shut off like a faucet. My body didn't like not being on Pulmozyme because I began to lose lung function. We played around with the dosage and found that inhaling it once every 3 days allowed me to maintain lung function while keeping the bleeding away.
That was several years ago. I have not had any more bleeds. I've had a couple incidents of streaking when I've had bronchitis and was coughing all night long, but I know that was caused by irritation.
Pulmozyme is an enzyme....it is designed to "break down" things. I think that in areas that you don't have much mucus that it could be breaking down healthy lung tissue. That is my theory.
Hope you find some answers....I know how horrible it is.
 
J

jmiller

New member
I have a similar theory about pulmozyme so I've only taken it intermittently the past year or so. I have however been doing HTS... I'm wondering if that's contributing.

My PFTs are holding steady (still around 100%) and I've been on oral abx for two weeks (since my last bleed) so my sputum is clear. I'm wondering if its a nonbronchial artery that is to blame-- didn't know that was possible until I came across this article: (http://www.ajronline.org/content/196/2/W199.full)

I had my second embolization a couple months ago and have had 4 bleeds since <img src="i/expressions/face-icon-small-sad.gif" border="0"> This is particulary scary for me. I feel like with CF I have known my whole life that people die from CF -- but generally the road there is marked by disease progression and you at least have some indication that it's coming. Hemoptysis is such a different thing. It can happen out of nowhere and to relatively healthy lungs. Not something I like to grapple with as a mother of two little guys.
 
J

jmiller

New member
I have a similar theory about pulmozyme so I've only taken it intermittently the past year or so. I have however been doing HTS... I'm wondering if that's contributing.

My PFTs are holding steady (still around 100%) and I've been on oral abx for two weeks (since my last bleed) so my sputum is clear. I'm wondering if its a nonbronchial artery that is to blame-- didn't know that was possible until I came across this article: (http://www.ajronline.org/content/196/2/W199.full)

I had my second embolization a couple months ago and have had 4 bleeds since <img src="i/expressions/face-icon-small-sad.gif" border="0"> This is particulary scary for me. I feel like with CF I have known my whole life that people die from CF -- but generally the road there is marked by disease progression and you at least have some indication that it's coming. Hemoptysis is such a different thing. It can happen out of nowhere and to relatively healthy lungs. Not something I like to grapple with as a mother of two little guys.
 
I

Isaiah53

New member
You're not alone! It's so frustrating. I pray it gets better real soon for you.

I have had issues with bleeding for the past 10-12 years off and on and have had 2 embolizations within the last few years. I used to rush to the hospital and they'd start IV antibiotics even though I felt fine besides the bleeding. Now I i really watch for anything that is an anticoagulant or blood thinner of any kind. No aspirin, Ibuprofen or naproxen for sure, and I've also had bleeding with ginko, and balloon flower root (platycodon). Coffee was causing terrible bleeding for a while, I gave it up completely when I figured it out and it stopped immediately. Now I'm able to have a cup now and then. HTS and pulmozyme never seemed to bothered me but I'm not real consistent with pulmozyme.

I've read that Vitamin K supplements increase the body's ability to clot - I haven't tried it personally, but I have increased my intake of fresh spinach during times of more bleeding episodes.
 
I

Isaiah53

New member
You're not alone! It's so frustrating. I pray it gets better real soon for you.

I have had issues with bleeding for the past 10-12 years off and on and have had 2 embolizations within the last few years. I used to rush to the hospital and they'd start IV antibiotics even though I felt fine besides the bleeding. Now I i really watch for anything that is an anticoagulant or blood thinner of any kind. No aspirin, Ibuprofen or naproxen for sure, and I've also had bleeding with ginko, and balloon flower root (platycodon). Coffee was causing terrible bleeding for a while, I gave it up completely when I figured it out and it stopped immediately. Now I'm able to have a cup now and then. HTS and pulmozyme never seemed to bothered me but I'm not real consistent with pulmozyme.

I've read that Vitamin K supplements increase the body's ability to clot - I haven't tried it personally, but I have increased my intake of fresh spinach during times of more bleeding episodes.
 
J

jmiller

New member
Greg - It's funny how "you're not alone!" is one of the most encouraging phrases to me right now. (also, love the video in your signature)

I too gave up caffeine (so long skinny sugar-free mocha... i loved you so)... and I've recently cut out processed foods, especially the "white stuff" (flour, sugar). I have never tried Vit K therapy... but may look into that.

TMI alert- I also started my period last night and haven't had one in over 2 years (between pregnancy and breastfeeding) so I'm hoping the recent bleeds are correlated with the crazy hormone patterns I've probably had. In the past my hemoptysis would coincide with my period and at this point - once a month would be an improvement compared to what I'm doing now!
 
J

jmiller

New member
Greg - It's funny how "you're not alone!" is one of the most encouraging phrases to me right now. (also, love the video in your signature)

I too gave up caffeine (so long skinny sugar-free mocha... i loved you so)... and I've recently cut out processed foods, especially the "white stuff" (flour, sugar). I have never tried Vit K therapy... but may look into that.

TMI alert- I also started my period last night and haven't had one in over 2 years (between pregnancy and breastfeeding) so I'm hoping the recent bleeds are correlated with the crazy hormone patterns I've probably had. In the past my hemoptysis would coincide with my period and at this point - once a month would be an improvement compared to what I'm doing now!
 
V

vvgogh

New member
The bleeding is something i have dealt with since i was 16 or so. I have never had any specific treatment for it. I liken it to a scraped knee of sorts. I can almost predict when i will get a bleed. If i am exposed to any type of smoke or heavy perfume/ air freshener I always get a bleed. Right now allergy season or high mold count has the potential to get the inflammation up in my lungs. So anything that triggers the inflammation will make me more likely to bleed. Once i get a bleed going i try to avoid using the vest or getting winded for a day or two. I do not think the pulmozyme is a factor. The reason is this. When i was a teen or in my 20's I did not have pulmozyme and when my lungs bled i would typically need to sit in the bathroom for a half hour or so ( a lot of blood) I have never had that experience in the last 20 years. Now I may bleed just a half cup or so. then streak for a day or two. I use pulmozyme twice a day and i take advil 3 times a day depending on the day. The bleeding is very upsetting i know. I have had many doctors over the years and some freaked out about it and others seemed to understand the condition better.
 
V

vvgogh

New member
The bleeding is something i have dealt with since i was 16 or so. I have never had any specific treatment for it. I liken it to a scraped knee of sorts. I can almost predict when i will get a bleed. If i am exposed to any type of smoke or heavy perfume/ air freshener I always get a bleed. Right now allergy season or high mold count has the potential to get the inflammation up in my lungs. So anything that triggers the inflammation will make me more likely to bleed. Once i get a bleed going i try to avoid using the vest or getting winded for a day or two. I do not think the pulmozyme is a factor. The reason is this. When i was a teen or in my 20's I did not have pulmozyme and when my lungs bled i would typically need to sit in the bathroom for a half hour or so ( a lot of blood) I have never had that experience in the last 20 years. Now I may bleed just a half cup or so. then streak for a day or two. I use pulmozyme twice a day and i take advil 3 times a day depending on the day. The bleeding is very upsetting i know. I have had many doctors over the years and some freaked out about it and others seemed to understand the condition better.
 
M

moxie1

Guest
That was the hardest part for me.....not knowing where and when it was going to happen. I was afraid to go anywhere!
Lots of people seem to correlate bleeding with hormones, so maybe that is your answer. I would definitely look into Vitamin K.
Something I also read somewhere is that when you are having a bleed, sip water that has about a teaspoon of cayenne pepper in it. It is strongly anti-inflammatory and supposedly is good for stopping bleeding. (I can't vouch for this because I didn't try it.....it does help stop that dry tickly cough though) <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
M

moxie1

Guest
That was the hardest part for me.....not knowing where and when it was going to happen. I was afraid to go anywhere!
Lots of people seem to correlate bleeding with hormones, so maybe that is your answer. I would definitely look into Vitamin K.
Something I also read somewhere is that when you are having a bleed, sip water that has about a teaspoon of cayenne pepper in it. It is strongly anti-inflammatory and supposedly is good for stopping bleeding. (I can't vouch for this because I didn't try it.....it does help stop that dry tickly cough though) <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

welshwitch

Guest
Just wanted to chime in that Vitamin K does the trick for me. So does skipping Pulmozyme.

Causes:

Stress
Pulmozyme
Caffeine
Not getting enough exercise (like if I skip my runs = more sputum)
Airplane flights (I think the altitude does it!)

Good luck! It's scary, but manageable <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
W

welshwitch

Guest
Just wanted to chime in that Vitamin K does the trick for me. So does skipping Pulmozyme.

Causes:

Stress
Pulmozyme
Caffeine
Not getting enough exercise (like if I skip my runs = more sputum)
Airplane flights (I think the altitude does it!)

Good luck! It's scary, but manageable <img src="i/expressions/face-icon-small-smile.gif" border="0">
 
J

jmiller

New member
Thanks Becki and and Rebecca (Becky II?) <img src="i/expressions/face-icon-small-smile.gif" border="0">

I definitely think inflammation plays into my bleeds -- some combination of:

CF (duh) + hormones + inflammation + infection = bleed

I totally agree Becki that not knowing the when/where is completely unnerving especially when the things I avoid after a bleed (lifting/exerting) are the very things I do as a mom. I am so glad that your bleeds have subsided and I'm hoping for the same outcome!
 
J

jmiller

New member
Thanks Becki and and Rebecca (Becky II?) <img src="i/expressions/face-icon-small-smile.gif" border="0">

I definitely think inflammation plays into my bleeds -- some combination of:

CF (duh) + hormones + inflammation + infection = bleed

I totally agree Becki that not knowing the when/where is completely unnerving especially when the things I avoid after a bleed (lifting/exerting) are the very things I do as a mom. I am so glad that your bleeds have subsided and I'm hoping for the same outcome!
 
V

vvgogh

New member
I have to agree that hormones did play into it for me also. I forgot how that used to be a problem monthly ! The only correlation i have seen with food is something you have already discovered i believe. The whole chocolate/ sugar/ processed food component. sadly it is usually the delicious expensive dark chocolate that affects me. I drink espresso every day and i seem to do fine as long as i keep it to one double shot a day ha ha ! I have been taking the K vitamin but i do not notice any change. For me i am pretty sure what triggers mine by now. But i still get surprised and when i do i normally blame some hormonal/stress or getting too excited about anything (blood pressure component) just one of those things. I quit all of the chocolate and all for awhile then as i slowly add the items back in I just pay attention. Do i quit eating expensive dark chocolate ? No... not entirely. I am sure you are a very busy mom just try to slow down a bit when you bleed so you heal. best of all to you !
 
V

vvgogh

New member
I have to agree that hormones did play into it for me also. I forgot how that used to be a problem monthly ! The only correlation i have seen with food is something you have already discovered i believe. The whole chocolate/ sugar/ processed food component. sadly it is usually the delicious expensive dark chocolate that affects me. I drink espresso every day and i seem to do fine as long as i keep it to one double shot a day ha ha ! I have been taking the K vitamin but i do not notice any change. For me i am pretty sure what triggers mine by now. But i still get surprised and when i do i normally blame some hormonal/stress or getting too excited about anything (blood pressure component) just one of those things. I quit all of the chocolate and all for awhile then as i slowly add the items back in I just pay attention. Do i quit eating expensive dark chocolate ? No... not entirely. I am sure you are a very busy mom just try to slow down a bit when you bleed so you heal. best of all to you !
 
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