Pulmonary Embolism-Chronic...CT FINDINGS

[ellamargomom]

Dear Docs,
I am a 30yo WF with increasing SOB, Dyspnea, hx of DVT last year and now, hx of post-surgical hypothyroidism and multiple surgeries to the abdomen including an open nissen fundo. last June (2006) which resulted in multi. surgeries due to infections.  I have exercise induced asthma as well.  Last Feb (2007) I was placed on a vent due to respiratory insufficiency and viral encephalitis.  I recovered seemingly well and had been doing well until Aug. of this year when I started to get colitis and increasingly worse chest pain.  This disappeared for a few weeks and week before last I started to get right leg pain.   I am not obese, do not smoke or drink.  

I was recently admitted to the ICU for a "chronic PE" I was diagnosed about four days before the SOB presented itself with a DVT in the popliteal vein of the right leg.  Four days later, SOB started, chest pain etc..I went into the ER (I had already been started on Lovenox and Coumadin) after multiple attempts to place an IV sans success, they attempted to place a central line.  The central line was sans success as well.  What they ended up causing was a major hematoma.  My blood, according to the anesthesiologist, was clotting as he was trying to place the line in. THey ended up placing a femoral line very shortly after in the left leg.  

The CT report showed this: (Now let me preface this by saying that the one on Aug 21, 2007 that I had showed no indication of this problem and a VQ scan that I had two weeks prior to this had no abnormalities either.  Both scans were done due to increasing chest pain)   10/09/07:  Within the right lower lobe second order pulmonary artery there is a thin stellate filling defect extending into a small posterior right base pulmonary artery with an appearance most consistent with a Webb from a previous chronic pulmonary embolus.  There is a faintly seen one on the CT dated 8/21/07.  There is mild right greater than left dependent atelectasis and probably right tiny pleural effusion.  Subcentimeter mediastinal lymph nodes are present which were not present on previous scan.  Contrast reflux into the inferior vena cava is noted.  Correlate signs of right heart failure.  Soft tissue density surrounding the right interscalene muscles adjacent to the internal juggular vein and subclavian artery.  Consistent with previous line access.

I had an echo a week after getting out of the hospital.  Formal results are not yet ready, but the cardiologist noted that my pulmonary pressure was high while I was in the room.  (I am also a nurse)  the rhythms varied to some with inverted P waves, elongated P waves, SV rhythms.  My ECG showed first degree AV block.  

While in the ICU the doc said that I had a few short runs of VTach.  

When I receieved the formal CT report, I asked the doc about the failure they mentioned and he said, quite rudely, "why do you think we are working you up?"

The chest pain is relentless, the SOB is with any type of exertion at all and the fatigue is well..tiring. I slept over 18 hours yesterday. I am not taking any meds as far as narcotics or relaxers etc..

I am on thyroid replacement, Mirapex for restless leg syndrome, Iron Supp., Coumadin (7.5mg/day) and a MVI.  

They also did a PFT and it showed an 18% improvement with the broncho dilator.  But was still not within range.  I was in excruciating pain while going through the test.

I know I have thrown a lot out there, but was wondering if you had any insight to what might be going on.  I feel as though my docs (military) are blowing me off.  

Thank you for your help.

[ellamargomom]

Thank you dear maggie...That is my daughters name btw..  I have not had a right heart cath, but the military docs insist that I don't need one.  I get the final results of the echo tomorrow and I should get the lupus testing and CRP etc..lab work back tomorrow.  

They finally, after two weeks, got my INR hugely out of range...I am sitting at 4.8 right now.  Nice, huh?  

I am trying to get them to refer me to a larger med. center with specialists, but as in the military and rest of this wonderful govt, it will, as they say, take lots of time.  

I just don't feel as though I have lots of time.  The internal med doctor is trying to send me back to work.  And as a nurse, the exhaustion, fatigue, SOB and chest pain just would not do in the workplace.  I tried staying "up" all day today and failed miserably.  
They tell me that the extensive clotting disorder workup can not be done until I am about ten months out into the anti-coag therapy.  I will, according to them, have to be on the meds for life.  

Thank you for your concerns and comments.  You are echoing exactly what I am concerned about.

~C

[maggiemag]

HI there.  Sorry to hear your involved history.  I am not a doctor but I am also an RN.  Off the top of my head, it sounds to me like you might have pulmonary hypertension secondary to clots, and need (maybe) that surgery to remove the clots. Have you had a right heart cath yet?   I think it is called a PTE.  I think the best place for that is in San Diego.  I wonder, also, if you might have some abnormal vessels causing the failure to place the lines.  I do!  (I was supposed to have an ICD implanted and they were unable to on both sides.  The left was due to a persistent left superior vena cava, and the right was due to extremely abnormal subclavians with tortorous vessels and they couldn't make the turn.)  You also need to have extensive clotting studies done as it certainly sounds suspicious to me for a clotting disorder.  There are some rare ones out there that I think can be treated.  Check and make sure your multivit does not have Vit. K in it which would make it worse.  Are your INR's therapeutic?  I would guess that the 18% improvement with the bronchodilator means nothing.  What were the other results from the PFT's?  If I were you, I would INSIST on being referred to a major university medical center asap.  I sure hope this helps some. :-)