Pulmonary Hypertension with Pulmonary Emboilism

[pinkroom76]

I have Pulmonary Hypertension at first I was told PAH then I was told it was due to the left sided heart failure. Two weeks ago I was diagnosed with a pulmonary emboilism in my lower right lobe. I was told the right sided of my heart is larger. Could that make my Pulmonary pressures higher. I also recall that blood clots to the lung is a cause of Pulmonary Hypertension. I called the Pulmonary Hypertension clinic I am seen at and they seem like a Pulmonary Emboilism is no big deal in a Pulmonary  Hypertension patient. I am confused.

[Jonathan D. Rich, MD]

Hello and welcome to the forum.

1.  Get a new doctor if this is what they are really telling you.  I dont understand how anyone can say that a PE is not relevant in anyone, especially a patient with pulmonary hypertension.  I hope you misunderstood them.

2. Why are they having so much difficulty categorizing your PH (ie PAH vs secondary to LV failure vs ? recurrent blood clots, etc)?  Another reason to get another opinion

Honestly, it sounds like you are more informed than your PH team. I am terribly sorry that this has been your experience.  Please let me know if I can be of further help (including a referral suggestion if you tell me what the nearest large academic medical center near you is).

Best,

Dr. Rich

[pinkroom76]

Thanks so very much for your help.

[Jonathan D. Rich, MD]

Interesting...well sounds like you are getting pretty good care.  But a 2nd opinion is never a bad idea when there are a number of uncertainties.  And based on the pressures from the cath, I would tend to agree that it sounds like you have pulmonary venous hypertension (which by itself can lead to the RV enlarging).  The PE is not going to help but if it was small and you got on blood thinners right away, hopefully it wont have a significant impact...

If from the twin cities, University of Minnesota has a good PH program.  So does the Mayo Clinic.

Best,

Dr. Rich

[pinkroom76]

I forgot to say that my first right heart cath my pressures were high on right side and normal on left so I was told I had PAH. The second right heart cath I had the pressures on the right was 45 and the left side was 25 they then told me I had Pulmonary Venus Hypertension.from dystolic heart failure when I have fluid build up on my heart.

[pinkroom76]

Thanks for answering. The care I received while I was in the hospital was great. I was on a CCU unit and they knew of my Pulmonary Venus Hypertension due to dystolic heart failure . An echo was done showed that the right side of my heart was larger than past echos. In the  hospital they told me that the embolism was most likely causing my pulmonary pressure to go higher. My Pulmonary Hypertension care is at another hospital. I assumed that they would want know of the Pulmonary Embolism so I called when I got out of the hospital. The nurse coordinator with whom I talked with made no response other than to say ok. I was given no directions as to how to manage and what to do. I was very lucky in that my embolism was found early it just that I want to know if I need to do things differently than before with my Pulmonary Hypertension. I may seek to get a second opinion from another pulmonary Hypertension clinic. I live in the Twin Cities so there are a a few choices of clinics for me to try. Thanks for the information.