Chronic PE and Echo with increased Pulmonary Pressure

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. the rest of the numbers were out of range as well, although the official "final" report is not due back yet.

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.   I am wondering if I should go see a cardio/hem/onc/PE specialist.  Also wondering if the finding of increased pulmonary pressure on the echo means that I could need a cardiac cath.  


Thank you for your help.

[Fionajnz]

Hi,

I am so very sorry you are going through all this.  I can relate in that I had a cardiomyopathy post partum with congestive heart failure, then a PE confirmed on second opinion at National Jewish in Denver, CO then a neuro muscular disorder with a working Dx of inclusion body myositis/polymyositis, all kicked in within 3 mths of the birth of our third child.  That does not cover my back (fractures from drug interactions) and a brain tumor they found while working me up ;-).  Oh and just for fun I developed a serious anemia, that although it responded to iv iron, it has returned wtih avengence this summer.

Soooo, honestly I do understand the level of frustration, the SOB that is so very limiting and pain that you are experiencing.  Its tough to keep a positive mental attitude with all you have going on.

The problem with having hematology issues, cardiac issues and pulmonary issues, is that you enter a conundrum that is hard to extract yourself from, both cardiology and pulmonary often say that both elements play a part, yet no one can definitively say that one is more present than the other, its a chicken and egg situation.  So, I would definitely get a second opinion on all counts.  I am not sure where you are located but Colorado is a great place to get checked out, National Jewish is the top pulmonary hospital in the country, they do second opinons and have a patient information line with nursing staff who can figure out with you if its worth being reviewed there.  I personally saw Dr Canham.  He has a lot of experience and took the time to review everything.  

Second, there are a number of good cardiology centers of excellence here too, but if you are in Denver then the University hospital is probably a good place to start, otherwise I would recommend Heart Center of the Rockies, based in Fort Collins.  We personally know a cardiologist who works there (we know them really well), so I know the service is good and the cardios I have seen there, have been wonderful, as have the support staff.  Pat Patrick (who is a female NP there specialising in Congestive Heart Failure is a great start).

Finally on the hematology end of things, its also worth a review.  I have blood clotting issues as well ( both in pg and after, with the PE) so I am monitored really closely by the hematology center here.  I really like Dr Miho Scott.  She was rated very highly recently by her peers throughout the USA, I think it was last yr.  She is based in Ft Collins, CO too.  But if you are closer to AZ, then I would suggest, Dr Sharon Ondreyco in Scottsdale AZ, who was rated #1 for both cancer and hematology issues by her national peers in 2005.  

In terms of your fatigue levels, I would make sure you are not anemic, its so easy to miss esp with all your surgeries and chronic illness.  You need an indepth iron panel done by the hematologist.

I totally feel as though you deserve a second if not third round of opinions but honestly if you feel you are being shafted by the military Docs, then its important to get more info from outside that system.  I have heard it can be tough to do that, but its your health and well being at risk, so you deserve it.

BTW, I have a health backgrd too as an Occupational Therapist, so I can relate to asking Q's and p'oing some people.  Again, you are right to ask the Q's and I hope you get some useful and straight answers soon.

I hope the info has been somewhat useful.  If you end up flying anywhere for a second opinion then make sure you manage your anticoagulation appropriately.  I have to take blood thinners when I fly and with your hx of DVTs etc, it will be important for you to do so too.

I will check back for any Q's you may have.  BTW, where you posted is a patient to patient forum, not the DR forum, its tough to post there, I have been completely unsuccessful for 2 yrs now.

Fiona      

[ellamargomom]

Hello Fiona,

I actually live in Colorado Springs, so going to National Jewish or one of the ones in Ft. Collins wouldn't be that bad.   I just realized tonight that i posted in the pt forum, but the others cost money and at the moment, it is a very tight budget around my house.  

Oh well.  Your comments are helpful and I will check out the Denver center at Ntl Jewish, they sound like a good place to go.  I just have to get my doc to put in for the consult, which could be the hard part.  They seem to just blow me off anytime I talk to them. Its not like I have a headache or a slight vague abdominal pain and am asking for painkillers.  It is very frustrating.  

Thank you a thousand times over,.

~C