Hemoptysis questions

[Jeana_Lynn]

So I had my first real episode of Hemoptysis. I had coughed up blood before but just a little amounts from my throat due to frequent coughing. This one definitely felt like it was from my lungs. I was not coughing right before it happened, and had only had one coughing fit that day. This is one of my "well" times. I had laid down on my bed and felt a gurgling feeling in my left lung and a feeling to cough and then just began coughing up blood and more blood for five minutes, probably about a cup of blood total. I went to the ER, where after doing blood work and a CT, they told me this was just a normal progression of CF. Honestly, that has me a little freaked out. And I have some questions.

1-once you began having episodes, how often did they occur?

2-is this really a sign of CF progression? Will I now have a steady decline?

3-for the last week I have had pain in my left lower lobe. It still hurts, but no one has any answers for me. Is this going to go away? Has anyone experienced this?

4-prior to the episode, I felt like a cell phone was vibrating under my left lower lobe. When I asked the ER docs about this, they had no idea what would cause that. It lasted for about 30 minutes at a time and was sporadic. Has anyone had this?
I did talk to my cf clinic and have an appointments on February 27, but I really would like some more information prior to that. Thanks for sharing your experiences.

 

[believingjesus]

I would call your CF clinic back today and ask them all these questions to get a professional opinion. My sons clinic answers my every question without hesitation. That is their job and I believe you should do that before waiting till the end of February to find out for sure. Emergency rooms have doctors that are there to respond to a very urgent need and never know the history of the patient like your doctor does. You as a patient are entitled to call the doctors office and ask any questions regarding your health. My son coughed up some blood about a year ago and it scared him too. I called the doctor as it scared me too and asked about it and they told me that the amount of blood he coughed up they were not worried about it. I would tell them that you coughed up about a cup full and find out. CF is a progressive disease but I don't know if this is a sign of progression or not. I have read many people have coughed up blood and it scares everyone.

 

[Oboe]

It doesn't happen often for me, maybe once or twice a year. For me it mostly happens when I'm on things like blood thinners, ibuprofen, that kind of thing. Which is a pain in the hospital, since they put you on blood thinners for the picc line. Inflammation from high blood sugar can do it to me, too, but that's rarer.

The vibrating feeling, I'm not an expert, but I think it's the air you're breathing pushing past blood that's trickling in. For me, bloodied mucus also tends to stick more and kinda clunk around in there, so that could be part of it as well.

When in doubt, call your clinic. Always.

 

[ethan508]

Hemoptysis sucks partially because it is such a startling phenomenon to have bright red, oxygen rich blood coming out of your mouth (and lungs). About 7 years ago, I had a semi-bad episode while driving to work. I coughed blood for 5 or so minutes and then it stopped. It felt like a ton of fluid. In retrospect I should have booked it to a Dr or ER just to be safe. Since then I've had some minor blood streaks in a cough, a one very minor episode with straight blood (like 2 coughs worth) but nothing else of significant. It does seem more common as lung disease progresses, but for me, having it happen once in a major way was not indicative of a lifetime of episodes. But be sure get checked out to ensure your lungs aren't doing something else funny.

I once heard that the lungs have the same surface area as a tennis court and hemoptysis is like punching a leak in that court with a fork. That image helped me be less anxious about hemoptysis in general. So go out to a tennis court and pour a cup of water, not insignificant, but not quite the visceral reaction that we get when we are spitting out blood for minutes.

 

[nmw0615]

Beginning when I was 14 and lasting until I was 18, I had hemoptysis episodes much like the one you are describing. They happened every three months, like clockwork. I'm not even joking when I say within two days of any scheduled clinic visit, I would be coughing up large amounts of blood. I'd be completely healthy, not even a single cough, and yet it would still happen. I'm sure the frequency of episodes differs from person to person, but that is my experience.

For your second question, I think it can be a progression, but doesn't have to be. In my case, my lower right lobe was horribly diseased. When I was 18, I had the lower right lobe removed. Since that surgery, I haven't had a large episode of hemoptysis (knock on wood). I've had small episodes, never more than a tablespoon or blood. My disease has progressed downwards as of late, but that has less to do with the missing lobe/blood, and more to do with MRSA.

I don't really have an answer for your fourth question. I never experienced that sensation. All I felt was the gurgling in my throat as the hemoptysis started, and with every single breath I took during the episodes.

It surprises me that your CF team did not want you to start IV treatment right away. That was the case in every single one of my episodes because it meant the infection was flaring up again, even though I didn't feel sick. With the smaller episodes I now have, IV treatment isn't required because the amounts are so small, comparatively. I just skip regular vest treatments and hypertonic for 48 hours, no pulmozyme for 24 hours, and continue inhaled antibiotics as normal.

 

[GoryLori]

I too, have had hemoptysis badly enough to have to go to the OR for an embolization--TWICE. Scary moments to think I will die while bleeding from my lungs. I know of one CFer, Charlie Stockley, who DID die from wicked hemoptysis, so I know it does happen. Charlie's parents then introduced me to another CFer who also bled out and died in the ICU, all the while awake and crying and pleading not to die....she Died. So get to know your CF lungs and how you bleed. A little at first is normal, but my rule of life is a cup is too much and off to the hospital I must go.
So what do they do when they do an Embolization?? In my case, they took me to the OR but now they will do it in the Vascular Radiology Suite, they entered via my right femoral vein and snaked a wire into my pulmonary vasculature. Introducing a dye, they could see where blood was pulsing through a hole and snaked the balloon catheter to that area and ejected a little spiral spring (called a COIL) into the area to slow down the blood flow. Then they introduced a crazy glue type gel that "sealed" off the bleeders. It worked for me for my first ever wicked bleed. The second bleed was on the OTHER side, so we did the same thing but on the other lung this time and it worked too. There was the threat of a third time but after I was moved to the ICU and a plan was hatched, the bleeding slowed down enough that we elected NOT to go ahead. Whew.....saved myself from a third embolization. Now on x-ray, you can see a little "spring" coil in my lung that was introduced to stop the bleeding. I STILL cough up small amounts of blood, but NOT a torrential gush that has needed another intervention--AMEN!! Remember: a cup of blood is TOO MUCH!

 

[stephen]

Jeana_Lynn,


From my experiences, the onset of Hemoptysis does NOT have to mean you’re on a steady decline - or that it will continue.

For many years, before I was even diagnosed with CF, I would have several episodes a year where I felt a percolating in my chest have blood in my mouth. This usually occurred at night, waking me up, although there were occurrences where it started during the day too. This was in addition to seeing streaks and clots of blood several times a week in the crap I was constantly coughing up. It reached the point where I actually had an appointment for surgery to have my right upper lobe removed.

The IV antibiotic treatments in preparation for the surgery resulted in such an improvement in my overall condition that I “postponed” the surgery. That was almost ten years ago. The lobe was never removed, and I have not had a bleeding episode since, thank G-d.


Since starting Kalydeco 11 months ago, I no longer even cough, and there is no blood.

So to answer your question, while there are no guarantees, you are not necessarily on a steady decline and your condition can actually improve.

 

[Jake Hyden]

I don't usually comment in the forum, but here's a question I can give insight to. My experience with hemoptysis was in May 2012. I had to be embolized. The cause was that the dose of hypertonic saline I was taking was too high, and that I was taking it too often. My doctor warned me that I might lose lung function after the embolization. Thankfully, I didn't, and I haven't had an episode since. I'm still at 77-80% FEV1, more than 2 1/2 years later. So there's no reason to suspect any kind of decline associated with coughing up blood.

As far as the "vibration" goes, the problem for me is albuterol. It makes my muscles twitch all over my body. Sometimes that includes the chest. I've asked my doctors about it a couple times and they consider that a reasonable explanation.