Monday, January 23, 2006

Patient post - 23 year old woman.

Every once in a while we will post questions from patients. Usually we like to keep to the original theme of the blog, which is discussion of cases among health care professinals, but the following case from a patient was interesting. Here it is:

I am 23 years old.
I have been diagnosed this past year with heterozygous factor V Leiden.
I have a diagnosis since 12 of asthma, which is treated with Advair 500/50, singulair combivent every 8 hours as needed, albuterol inhaler and nebulizer solution to use every 4-6 hours as needed. I hardly use either.

In January of 2005, I was drinking some hot chocolate and I aspirated on it, which caused an instant response of coughing (obviously), but I started to cough up bright red blood. This turned into a LOT of bright red blood, no sputum. I ended up coughing up about 100mL of blood or more - I never measured it. I was brought to the ER, where I had an x-ray taken, and a laryngoscopy (sp?), I coughed up another 10-15ml of blood while there. I was told that I probably burst a blood vessel in my lung and I was sent home. The next day, I coughed up a long, dark red-black clot of tissue and blood, then I began coughing up blood again, another 15-20mL. It stopped, I did not return to the hospital, as I was told I would continue. The next day, the same thing happened, except less, maybe 10mL of blood.

I didn't think anything of it until the next month, toward the end of February while I was shopping with my mother, and I got into the car and suddenly the hemoptysis began again, for no reason. I had not coughed, I just felt a small rumble in my chest and the need to cough the liquid up. Once again, there was bright red blood. My mother took me to the ER, there was less blood this time, and they did a D-dimer, which came back abnormal. In the time I was waiting for the result for the d-Dimer, they did a chest x-ray, which showed nothing significant. Afterward, they did a V/Q scan with both the IV and the nebulizer of the tracer dye. It too was inconclusive. So they sent me to CT to get a scan with dye. That was inconclusive as well. I was admitted to the hospital, and they sent me to get an angiogram. Finally, they found a small clot in my lower left lobe. I was started on heparin, and kept in the hospital for 4-5 days, I don't remember exactly. On the last day, they started me on Lovenox and warfarin, and then they sent me home. This was a friday, I was told to be on bedrest, I also had not moved. The morning after I had been admitted, they had done a doppler ultrasound (duplex) of my legs, and found no clots in my legs. Apparently, there was an "artifact" from the CT or the angio that they saw in my pelvis, but it was a motion artifact, so they didn't see it clearly. Anyway, on Monday, after only four days combined warfarin/Lovenox therapy, my INR was tested, and it was 2.8, so the nurse told me to stop the Lovenox. I did, and the next day I felt pain in my right shoulder blade area that radiated into my ribcage eventually. I called my doctor's office and they told me to call 911. I did, was taken to the ER, my INR was 2.4. Another CT with dye was taken, and this time I had a clot in each lobe of my right lung, along with pulmonary infarct. Each time this happened, my O2 sats were 100 or 99. I was admitted, put back on heparin, and tested for clotting disorders, told I had anticoagulation failure, and had a permanent greenfield filter placed in my inferior vena cava, right above my pelvic veins. I coughed up blood a few days into this one as well. Although I was not told at the time, apparently there was a nodule that was noticed in the CT scan. I will bring this up momentarily.

I decided I didn't trust these doctors, especially after they put me on both warfarin and Lovenox indefinitely. After 7 days of Lovenox at 140mg 2x day S/Q (I weighed 330lbs or so at the time), I began to have "massive hemoptysis" (their words - it was around 100mL - nothing I hadn't done before). This was on March 12, my birthday. I was again in the car, and at the time I had pneumonia, which I had taken home from the hospital with me. I had been on a dose of a z-pak, as well as some other anti-biotic, but I don't recall what it was. Anyway, I went to a different hospital, where they admitted me and again a CT was done with dye, the same clots were seen. They, too, saw the granuloma (calcified) in my lung, the right side, and again, it wasn't mentioned. My anti factor Xa levels were extremely high, so the Lovenox was discontinued. I was hospitalized for 12 days, as my INR stabilized for the FIRST TIME. I coughed up blood a few more times over the next couple of days after the first day I was there, as it seemed I would always do after a first episode, once again coughing up a big clot of blood and then bright red fresh blood before stopping. I would eat cough drops and drink cough syrup.

After my release, I was once again told I would remain on warfarin, basically, for life, due not only to my filter, but to my previous PE and my FVL diagnosis. I didn't cough up anymore blood until my INR was around 2.7, in June, because I was concerned that it tended to hover around 1.8-2.2, and I was afraid of another clot. Then they raised my dose another 2.5mg per week. I was taking a total of 65mg a week. At the end of July, I had another episode of hemoptysis, only around 50ml, I went to the ER, they did a CT scan with dye, told me I had bronchitis, sent me home with antibiotics. Again it happened in August, they listened to my lungs, said I had bronchitis, sent me home, same amount of blood. Again at the end of October, they did an x-ray, sent me home. Each time, it was around the same amount of blood. Each time, there was no coughing prior to it. Nothing to make it seem like I had a cold. My INR was not too high, it was always in range. I was also getting non-injection dye CT scans to follow the granuloma by my pulmonologist, and so far, it has remained stable. It's classified as a "nodule", pretty small, I've had it recently suggested that it may be a harmatoma. Whatever it is, it's half calcified. I did not cough up blood at all during November or December, and for most of January. Then, last Tuesday, I began actually coughing, as I've had a cold since the beginning of November (go figure), and I coughed pretty hard, and immediately began feeling the rumble of blood in my lungs. I begain coughing up bright red blood, rather violently a few times, as though I couldn't quite get it out. My pulmonologist told me that the next time I did this, I was to go to the ER and demand a bronchoscopy, so that's exactly what I did. Except when I got to the ER, they admitted me, I did measure how much I coughed up, it was 100mL of blood. They got me in a room, and scheduled a bronch for the next afternoon, and my INR that evening was 1.7. The next morning it was 1.8. They wanted it closer to 1, so they insisted on giving me FFP, three units, which I turned out to have an allergic reaction to at the last minute of the last bag, or it may have been the vitamin K shot they gave me, either way, my INR was only 1.4 when they checked it again. And I had a shot of 50mg of benedryl. And the bronch was canceled. The pulmonologist on duty wanted to instead do an arterial angiogram to see if I had a harmatoma with bleeding vessels that was causing me to cough up blood and to see if she could embolize them. But the other docs vetoed her, so nothing happened that day. The next day, again a bronch was scheduled, and my INR was still 1.4, but they did the bronch anyway because I refused additional FFP because of the allergic reaction. The bronch showed nothing. The day before I coughed up an additional 50mL of blood. They decided to take me off the warfarin, saying it was too dangerous for me to be on it. They think it is the warfarin causing me to cough up blood all the time.

I have many questions, some of them may be able to be answered by pulmonologists, some of them not.
Is it more likely that I have a harmatoma or a granuloma?
Is it likely that the nodule is the cause of my hemoptysis or the warfarin?
Could an INR of 1.7 cause me to cough up /that/ much blood?
Could being off of warfarin for a month put me at increased risk of pulmonary embolism?
Is all this hemoptysis ruining my lungs?
What is wrong with my lungs?

I know that without actually seeing me, reviewing my records in depth, seeing my scans, x-rays, etc, it's very hard to know the answers, I just want to know what other people think, since I've been seeing the same doctors for a year now, and nobody knows what the heck is wrong with me. I'm at my wits' end. And I'm terrified.

9 comments - CLICK HERE to read & add your own!:

Anonymous said...

I'm the one who posted this question, just to clarify - I'm female, and the clot was thought to be brought on by the use of oral birth control. Sorry, I left that out - it was late when I wrote this up, I didn't mean to leave out such a crucial detail.

Arenberg said...

I am glad you recognize the limitations of an opinion given in a forum like this, as it personally makes me feel uncomfortable if people are coming here for medical advice, but I will try to answer your questions...

>>>I have many questions, some of them may be able to be answered by pulmonologists, some of them not.
Is it more likely that I have a harmatoma or a granuloma?

No way to tell without seeing the films. Granulomas are waaaayyy more common, but a hamartoma can have some characteristic features on a CT. Either way, its possible this has nothing to do with your hemoptysis.

>>>Is it likely that the nodule is the cause of my hemoptysis or the warfarin?

See above. One guess I have not seen mentioned is that the hemoptysis, which seems to occur monthly, has some relation to your menses. This is called catamenial hemoptysis. If you post your location (zip code perhaps) we can suggest a good place to seek another opinion as to the likelihood of this.

>>>Could an INR of 1.7 cause me to cough up /that/ much blood?

Doubtful by itself. The should be something else contributing to it.

>>>Could being off of warfarin for a month put me at increased risk of pulmonary embolism?

Yes, if you actually had a PE before, but you also have a filter, so it is not necessary to be on warfarin.

Is all this hemoptysis ruining my lungs?

Actually, probably not at all.

What is wrong with my lungs?

Do you have any history of difficulty with your periods? Feel free not to answer here, but you may want to ask your doctor about catamenial hemoptysis.

Anonymous said...

arenberg, I have actually wondered about the thoracic endometriosis problem before, and asked my primary doctor. He told me that unless it was occuring within 24-48 hours of the onset of my period, it was unlikely to be that. However, this latest episode of hemoptysis occured about 48 hours before my menses begain.

As to the shape of the nodule, I was seen today by my pcp and asked him about it - he said it was lobular, as per the report of my CT scan - non injection dye. It is partially calcified, and the report said it was 1.7cm x 2.2 or 2.5cm, I can't recall exactly.

Another question I wondered about is, is it possible that my initial incident of aspiration on the hot chocolate caused the nodule to form?

Sorry for all the questions, I just know that my case is strange, as it's been confusing my doctors for a good while now.

My zip code is 55108, by the way.

Jeff H said...

I agree with my colleagues on this blog--it is difficult, and perhaps dangerous, to make any recommendations based on the descriptions you have given us, and to make any judgements on what may (or may not) be causing your hemoptysis without reviewing all of the prior studies and radiographs would be irresponsible.

I would recommend that you see a Pulmonologist regularly. The University of Minnesota has a number of excellent pulmonologists.

Mike L said...

I also agree with everyone that it is very difficult to make an assessment without seeing you. I would also recommend seeing a Pulmonary physician at a tertiary care center (i.e. a University hospital) as your case is anything but ordinary.

One thing that I would add is the need for continued anticoagulation despite your IVC filter.
The American College of Chest Physicians position paper on venous thromboembolic disease
(Buller, Chest, Sept 2004. 126(3) S401-428)
states that "resumption of anticoagulation is recommended as soon as possible after insertion of a filter because the filter alone is not an effective treatment of a DVT."
This is also supported by a randomized controlled study:
Decousus, NEJM, 1998; 338:409-16.

I would, obviously, wait until the etiology of your recurrent hemoptysis is determined.

Alex from Miontreal said...

omg something similar happended to me 2 months ago. i coughed up a lil bit of blood (10 to 20ml) and i went to the er right away. im a 24yo make and i used 2 smoke since i was 13 so they gave me all kinds of test. At first the pulmonogst diagnos was an infection. but then they found out i have a nodule(2.2 x 3.4cm) in the bottom of my left lung and a mass(or andenpathy) in my mediastinum. The enhancement of the nodule is low and there is no enhancement regarding the "mass". THen they sent me over to a pet scan im still waiting on the results but they give me a copy of the cd and i dont no abnormal uptake anywhere in my body. i dont have any other symptoms such as fever, loss of wegh, coughing, wheezinh, hoarsness, shortness of breath and i havent spat any blood since

i always did a lot of sports and excercices and im still doing it without any problem

im just terrified and took a break from college because of this whole thing
anybody as an opinion on my case???
feel free to write me an email

Anonymous said...

I remember sending this in over a year ago. The cause of the hemoptysis has since been found. I apparently have multiple (and I mean a lot of) pulmonary arteriovenous malformations in both lungs. Why I have them has yet to be discovered, but the why I cough up blood has been solved. No idea what caused the granuloma, but it doesn't appear to be behind any of my lung problems. I've since had bilateral DVTs and a massive saddle embolis after being off warfarin for three weeks at the recommendation of my doctors (and never again will I be going off).

Thank you for your help everyone. Sorry I didn't thank you when I originally posted. I found this post when I was looking something else up today so I thought I'd check back and respond.

Anonymous said...

I had a PE in Aug. should I also be sing a pulmonologist? Im worried because my clot isnt gone and one doc is telling me it may never be and to get off the lovenox.

Anonymous said...

"I had a PE in Aug. should I also be seeing a pulmonologist?"