Ideas for recurring hemoptysis

[ljberk]

Hello All -
I'm a mom to a 29y/o w/DD508. He is living his life with more than a few challenges, but living nonetheless. He has pancreatic insufficiency (of course), CFLD and CDRD. All of these would be more or less manageable but he just can't seem to get the hemoptysis under control. He's had 3 embolizations just in the last 12 months and the docs always say it should give him at least a year of relief, but it inevitably comes back sooner than you'd think. He often says "if it just weren't for the hemoptysis...". Ironically his lung function is fine. He has had more lung infections since he developed CFRD and I suspect that he is not doing a great job at managing it (doesn't live with us anymore, he's in LA - which he loves and I don't ).

Any thoughts? Any creative ideas? Any experiences with the same issues you'd like to share?
Thanks for any and all shares,
Lj in El Paso

 

[kenna2]

So I am in a gray area when it comes to hemoptysis, I don't bleed enough for embolization yet, but still have frequent issues with it. I was prescribed by my cf doctor Tranexamic Acid to take when I have one. It's a course of a 5 day tablet you take 3 times a day. I wonder if maybe adding this might extend some time between embolizations. Not sure if you've been though this route or not. Just a thought

 

[ljberk]

Thanks Kenna2. I think this might really work for him. About a year back I had heard about this med and told my son. He brought it up to his doctor and the doctor said it was "too dangerous", or that he was afraid that it would cause a clot. But, the whole reason he bleeds is because he doesn't clot well! Do you have liver disease too? I think that's what makes his more tricky. Thanks for answering, though. Its really nice to know that people out there understand these odd issues.

 

[kenna2]

I do have liver disease too and am being evaluated for a liver transplant. I don't have issues with clotting so maybe that is a big determining factor. I'm always happy to help since my CF is very much on the weird side lol

 

[Sonja35]

Be careful not to rush into embolization after embolization cuz as you may or may not know, every time they do an embolization... it burns surrounding healthy tissues leaving big pockets for infection to accumulate. After my 6th (failed) embolization, I had to have 2/3rd of my right lung removed which decreased my (otherwise decent) lung function by 1/2! Making my lung function go from 57% prior to my surgery to now in the low 30's. My doctor didn't think that it would effect it that much, but it did & now I have to accept that my lung function won't ever come back & my new baseline is in the low 30's. My doctor has always told me that if I'm just coughing up a small amount & stops at some point, not to worry. But, to get in right away if it's like a tablespoon or so and doesn't stop on it's own. Just thought I'd share this info. with you even though it's years later.

 

[erock77]

I came on here looking for more solutions too since I'm relapsing today, but have been pretty good for a while. I'm pasting some tips I posted before...

How bad is the hemoptysis? I've had 6 embolizations, it's been several years since the last. I would have hemoptysis pretty regularly but we only embolized if it got really scary. Like 10 minutes where it just won't stop gurgling and choking me, followed by repeat bouts through the day.
If it's a regular occurrence and more than just some streaking or a tablespoon it might be worth it. Obviously talk to your doctor. They don't like to do it if they don't have too, we Really don't want to do any more for me since it does block off blood flow to the lungs.
Otherwise I've given recommendations on here that have helped for me over the years when I had bleeding issues:
Vitamin K (mephyton) Rx, water-soluble ADEK vitamins for CF. Vitamin K helps with clotting.
Cayenne pepper has worked to stop the bleed within seconds. About 1/8-1/4 tsp in a cup or less of warm water is ideal. But I carry a little vial at all times and just toss some in my mouth if I'd start coughing up blood walking outside.
Our most recent Rx that I think has played a big role in the reduction is Tranaxemic Acid. It's experimental, I brought it to my doc after someone else wrote about it here, and my doc has passed it on to other CF docs. It has some potential clotting risks, but if it's really a problem for you it's worth discussing with your CF doc.​