anxiety about hemoptysis

[rubyroselee]

Hi all,

I've struggled with general anxiety off and on, so I know part of my fear is related to that. But I often have a lot of anxiety about having an episode of hemoptysis. I had my first hemoptysis while I was at work a few years ago and really freaked me out. I luckily got it under control and snuck out of work a little early without anyone really noticing anything was wrong. But I was quite shaken up by the experience, especially because I felt so alone at work by myself. Then over this past summer, I woke up in the morning to a bout of hemoptysis. I felt lucky to have been at home when it happened where my spouse was able to reassure me that things would be ok. Then just this week, I woke up in the morning again with a very small bleed. I ended up working from home to keep an eye on it. But all week I have had a hard time not worrying about it happening again. And I'm particularly worried about it happening while I'm at work or in a place where I'll be alone. And I'm also concerned that one of these times it's going to be a larger bleed and turn into more of an emergent situation. Am I just being overly dramatic? Or does anyone else have these fears?

 

[kenna2]

Hemoptysis is normal for CF patients. My doctors described it as being on the same level as skinning you knee. It just happens. One thing you can do is talk to your doctor about possibly taking iron to help with it. I had a frequent bouts of it and my doctor added iron 3 times a day for me and I've had no problems since. yes, it is scary, but as long as your not coughing up more than a tablespoon at a time, you're ok. Also if you're having a hemoptysis, I was always instructed to stop airway clearance until it stopped so it doesn't irritate it any more and continue it when it clears up. Hope this helps!

 

[welshwitch]

It happens to me! And definitely anxiety causing. But NORMAL! I think of it as an owie in my lungs that I need to take care of. I stop all Pulmozyme (definitely a lung irritant) for a week or so, increase my ADEK dosage (Vitamin K is great for making your blood clot) and just try not to stress too much. Just having a check list of stuff that I do every time it happens really helps. Like I have some control over what's happening. Once the owie clears up it's back to business as usual. I like the skinned knee analogy.

 

[nmw0615]

I suffered from sever episodes of hemoptysis from the time I was 14 until I was 18, when I finally had the highly diseased love removed. They occurred every 3 months, and as a result, I have sever panic attacks when I taste blood. However, when I'm not in the middle of an attack, I am able to think logically. Hemoptysis happens to CFers. A little isn't too much to be concerned about; I typically stop all airway clearance and nebs, except for albuterol, for 24 hours after the last bit of blood. Then I add nebs back in, and 48 hours after the episode, I start vesting again.

Your fears are completely valid because blood is coming out of a place it should never be coming out of, realistically. I'd talk to your doctor about possibly starting iron or extra vitamin k. I always take 5mg of vitamin k, and up it to 10mg to 15mg if I start to cough up blood. Ask your doctor for any other suggestions he or she might have.

 

[Ank]

Hemoptysis is scary..but we are dealing with challanges daily?
Small amount of blood is ok and can b ignored..
Dnt let it panic u.

Please take care of these when u have hemoptysis

1.Stop acapella pep device

2 Take a little more vit k
And do check ur iron regulary

I have read that high infection also can cause hemoptysis and iv injection cn help

 

[Aboveallislove]

Hey Ruby,
I'm so sorry for your worry. I wanted to throw out an idea of what helps me with these kind of worries and seeing if that might help to. For me, I cope best by knowing what is likely to happen and how to response and then what else might happen and the proper response, likelihood of it happening and likely response fixing. So re the blood, first time it happens with DS, I'd want to know: How much before calling doctor? At what point to I call 911, go to emergency? Will he pass out? Stop breathing? What do I do? What will 911 or emergency do? What is likely cause? I see it as one big decision tree...so one branch is "it's normal skinned knee I stop treatments, do x,y,z" That is 90% likely and will happen most likely 1x a month. When it is more than 1 tablespoon it is likely caused by Y, I do X (call doctor, go to ER, whatever), and then they do Z (whatever it might be). Have no idea if this will help you but the uncertainty is what gets my anxiety reving and the more I know, think through and have a "game plan" ready, the easier it is to not worry about what's around the corner. hugs and prayers.
Love

 

[windex125]

I've had bleeding on and off since mid Oct. I spent a week in the hosp. on IV and chest P/T 2x a day like I do at home your not going to believe this in that one week there was no blood coming up, just some nasty green stuff which they said was staff. I come home on the 16th by the 19th I'm coughing blood again first bright red then it gets darker, now I'm wondering where is all the green stuff ? I am on Augmentin which are so large I have to cut them in half. I called the doctor and she said continue with the vitamin K 3x a day. I also went to the ENT as I have a terrible sore throat, and this is weird my gums are very sensitive??? he said from wrenching my throat to cough, try not to talk or cough... I said I cough every DAY.... the no talking my husband would be very happy for that. He gave me steroids but I've never used them before so I'm reluctant to use them. Methyiprednisolone any one every use these does it help?? I told him I've been drinking tea with honey, he said you can drink a box of tea as long as your coughing it will stay be a problem. So you leave pay your co-pay then get in the car and sit and think well what shd I do abt this? this was 3 days ago I'm still thinking.. I also wld like to mention to RR try to stay calm, I know its hard, but I as well take Klonpin for the anxiety. It helps a lot, I once bled for 7 weeks, had to give myself shots of vitamin K at home that was a few years ago. Now I can stay I usually get it once a year. Pat

 

[jamest]

I definitely understand the anxiety about it... but after enough times of it happening, my overwhelming reaction is now irritation and annoyance, as opposed to anxiety.

But I think it is important for you to differentiate between baseless anxiety and actual, appropriate vigilance. If you've just coughed up blood, it is normal to pay attention to the situation and to monitor for further negative effects. That is a healthy reaction, IMO. I know after I've coughed up blood, I am nervous for a week or so afterwards, then I go back to normal, non-vigilant mode.

 

[rubyroselee]

Thank you everyone for your feedback. I think I just get a bit anxious after it happens and I'm afraid it's going to happen again. I think I also need to ask my doctor how to evaluate when I need to be seen and when it's not a big deal - and I think that will help me feel a little more in control.

 

[LittleLab4CF]

Rest assured, it will happen again. Other times this topic has come up, the suggestions to stop or reduce particular nebulized medicines were effective advice. Plain old albuterol is like a clot popper for me.

It is worth pushing for a bronchoscope. Often hemoptysis is a very old injury and may be treatable, your bronchials could have several. My first hemoptysis was not a good experience. Maybe 13, I hocked up a 3cc clot. It was HUGE! I wouldn't be diagnosed with CF for another 38 years and I had a hand full of blood.

Time has taught me to cough into a tissue when I've been sick. It's not foolproof but I haven't slipped up outside of family witnessing a clot that exceeds 5 or 6 cc's. Beyond a cc it's hard to conceal or suppress a moment of terror. In general I don't have anything close to anxiety or panic. My work and training cultivated fast paced rational and deliberate thinking in response to an emergency.

My wife jokes that I could reattach an arm and yet go faint over a paper cut. Blowing a huge wad of blood out with a cough is pretty unnatural. A paper cut hits me like that screach of nails on a chalk board and I know that it will heal slow. An hemoptysis is no paper cut or knee scrape. It is a persistent infection in a weakened area between the rings of the bronchial tubes and the scab over this pool of pus will occasionally losen and get coughed out.

In one way it is like a scraped knee. The scab comes off. Sometimes several times. If you have concerns, consider having a scoped look at the tubes just to inform you exactly what could happen. Many people find a bronchoscope more than interesting.

I'm sorry this haunts you, welcome to the club,

LL

 

[jricci]

I’ve had a lot of problems with hemoptysis over the years. Please know that you’re not alone with your feelings of anxiety. As soon as I feel that gurgle in my lungs, the fear can be gripping and paralyzing. As Aboveall suggested, having a detailed plan is a very good piece of advice. Involve your family in the plan as well so they know what to expect. Although my husband knew I coughed up blood, the first time he actually saw it happen was very traumatic for him; so it’s something that you should prepare your family for. Ask your doctor for specifics- how much blood-in quantity and frequency –before you should go to the ER. Make sure you know which ER to go to. The closest hospital to you may not be equipped with a trained interventional radiologist and the technology to perform a bronchial embolization if that is what is needed. Keep this in mind when you are traveling too so that you can research hospitals where you are traveling to. Also, when you start to cough up blood, try to collect it in some type of container instead of coughing into a sink. That way the blood can be measured. I have found that the terror of seeing your blood splatter across a white porcelain sink may cause you to overestimate the quantity.
Sometimes my hemoptysis episodes can be blamed on increased infection and inflammation during an exacerbation, but for the most part they seem to happen randomly. Although there are some triggers that I have noticed- altitude/pressure changes when I’m in a plane and I’ve also had quite a few episodes occur when I’m lying flat. Writing down details of what you were doing when it occurred may help you to find a pattern.
I take 5mg of Vitamin K daily to help with clotting in an attempt to prevent hemoptysis. This is prescription strength and unfortunately it’s expensive. Many insurances companies won’t cover vitamins but you can’t buy close to this strength OTC. I had to appeal, but eventually my insurance covered it.
Chances are, the bleeding will stop and you won’t need to seek emergency attention, but having the knowledge of what to do will give you some semblance of control. Hope this helps some.
.