Hemoptysis: Help?

[anonymous]

Hi All! I am 26w/cf. My daughter is 7 months old and I have been married 2 years. I was diagnosed when I was 18. I seem to have a mild form of CF with few complications. I have been hospitalized a few times for hemoptysis. The last time was last weekend. I was on vacation at Disney and started coughing up blood. This has been on-going since before I was diagnosed. This time was really bad. They went in and embolized(3rd embolization) and I seem to be okay now. Still nervous about the blood coming back, but have to have faith that it is calm for now. I was wondering if anyone else coughs up blood on a regular basis and how you deal with it? It is so scary for me and my husband. I really thought I was going to bleed to death before I got help. Everyone is super supportive but I get so scared. With every thing else we have to deal with, this you can't prevent. Help?

Alaina

 

[anonymous]

There have been other posts here regarding this exact situation.
I have had episodes of hemoptysis a few times before. Once that I remember was because of Pulmozyme (I no longer take it).
The second time must have been due to an infection because after I had IV's it got better.
As I'm sure you know, this can be very common w/ CF to a degree, but it sounds as if your situation is a little beyond that. I'm sure that knowing that it can be common does not help w/ the anxiety you feel when this happens.
Have your Dr's offered any insight into why they think this may be happening? Have you ever laid off of inhaled meds during this period to see if that helps? I think albuterol or Xopenex type things would be OK to continue to take, as far as I know they don't cause the coughing like the TOBI and Pulmozyme can. Just an idea, of course check w/ your Dr to get his opinion before doing this.
Keep us posted on how you are doing.

 

[Diane]

Hi Alaina,
I know EXACTLY what you are going thru and have a possible solution for you. I have had 2 embolizations due to massive hemoptysis. It is the most incredibly terifying experience. Im still on zoloft ( 2 years now) due to having panic attacks after the second embolization. I continued to cough blood every week after wards and figured it just would never stop. I was hospitalized in jan of this year and decided i cannot go on like this anymore. The uncertainty of it happening anywhere i went made me never want to go anywhere anymore. I contacted a woman i had corresponded with before about her 14 year old son who also coughed blood often, and decided to try what he had tried to control the bleeding. L-Lysine. I started using it in late january. It was suggested i use 3000-4000 mg. per day (spaced out during the day). I started with 1000mg 3 times daily and saw no real big improvement. Then in february i started taking 1000 mg. 4 times per day and guess what......... IT WORKED!!!! I have barely coughed up blood since. What a welcome thing in my life!! You can get it at any drugstore in the vitamin aisle. You can also read up on it online, just type in a search for L-Lysine. I discussd it with my cf doctor before i started using it and he said it would be fine. The good thing about L-Lysine is....you can take it in large doses and it doesnt become toxic. People use it for herpes, migraines, and thinning hair. It also said in one article i read (about it), that it is believed to help keep the blood vessels healthy. Whatever the case it has helped to put an end to my fear of coughing too hard, or leaning over too far, or my monthly cycle, all the usual guaranteed times of my coughing up blood. If you want you can email me, my email is ~ JINXNICK@AOL.COM ~
Good luck !!<img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[anonymous]

Hi Diane,
Thanks for the response. It is nice to know I am not alone or crazy. I do the exact same thing as you. If I bend over too far, sleep on the wrong side, lay down to fast, monthly cycle, are all times and things that cause the blood. I asked the doctor for something for my nerves and he gave me xanax but I haven't started taking it yet. Anyway, thanks for the reply. Hang in there and I will do the same. I will definately check out the Lysine and see how that works. I will try anything.

Alaina

 

[anonymous]

Have they checked your vit. K levels? I used to have alot of the same thing. Id wake up at night choking on blood or if i bent down to tie my shoes, same thing. When my CF docs uped my vit. K (mephyton) I started having it less frequently and it clotted and stopped much quicker since vit. K clots the blood. I had bad clotting so it helped me but you might want to look into it. It cant hurt. Good luck. I know how scary it is. It once happend to me at a dance in the bathroom and someone freaked and called an ambulance and everything.(drunk ppl over react) I had covered the bathroom stall and scared alot of ppll! It had stopped by the time an ambulance had gotten there.