I'm scared I might have Pulmonary Hypertension

[fvf147]

In Sept 07 I had an echocardiogram done for reasons that have now resolved itself, but it just so happened to show that I had a Bicuspid Aortic Valve.  The echo showed all parts of my heart were normal, everything else was fine and showed no abnormality, the bicuspid valve was mildly stenotic but functioning well.

Fast forward to about a few days ago.  I watched a medical mystery show about a young girl who they eventually found out she suffered from Pulmonary Hypertension... I thought it sounded pretty interesting so I looked it up online and found out what a scary disease it is and read across some ways they test for it and one way is an echo and what normal pressures are supposed to be... so I thought I'd look up my echo and check if it was on mine... and sure enough it was on there and said... "Pulmonary Artery Pressure estimate: 30 to 35".  I was shocked because all that i can find on PH says that is a high reading and indicated the patient has PH.  No one ever said anything to me... A Vascular surgeon ordered the echo, he never said anything, it was written up by a cardiologist, and I saw another cardiologist just to explain the bicuspid valve part to me... No One ever said anything about that PAP pressure.  The last cardiologist I saw also did a TEE on me to get a better look at that valve and the TEE report did not even have the PAP reading on it, but did say, "... no other heart abnormality present..."

I guess my question is... is a 30 to 35 PAP a danger sign?  I have worried myself sick over this the past few days.  I'm a young wife and mother (34 yrs old) my children are 10 and 3.  I can even fathom the thought of not having but a few years to live.  I'm scared.

I saw the Cardiologist Nurse Practitioner at their office today and explained my fears and she'd neither confirm nor deny that I could have it.  She just kept saying... "from the cardiac stand point your heart is fine".  She did give me a referral to a pulmonologist (sp?) but that appt isn't for 2 1/2 months.  I don't want this fear hanging over my head till then.  

When I asked her if there were other conditions/reasons that could cause the pulmonary artery to have that high a pressure reading she didn't really have an answer for me.  She just said that they didn't see patients in their office till readings where up in the 60's and the heart was giving them symptoms.  None of what she said made me feel any better.  

Can any of you give me your comments or suggestions.  I'd really appreciate it!!  Thank You!

[leoblazer74]

Oops, I meant to say pulmonologist on that last post.

[leoblazer74]

I am glad that everything seems to be OK as far as PH goes. As soon as I saw the Maury show, I figured a lot of people would be alarmed about it. I am just glad that people took notice. My cardiologist happens to be one of the foremost experts in PH and they have all had more calls than normal since that show and the one on the Discovery channel aired with the PH patient.

Good thing is that it only attacks 1 in a million people, bad news is that all the people afflicted die eventually. I, myself, donate money to them and try to find any way to volunteer and help people or families with PH if needed.

I strongly encourage anyone reading this to give a helping hand to people with this debilitating  disease.

http://www.phassociation.org  DONATE!!! :)

Good luck with the echo and please post any progress back on here to make sure you are doing great.

Good luck and God bless,

Leo

[fvf147]

Thank you for your post.  I did eventually find my way to PHA website, they are great there.  I don't know exactly about the PAP being systolic, diastolic or mean.  The report just says, "...Estimated pulmonary artery pressure is 30-35 mmHg...".

One of the ladies on that website gave me the email address to a PH specialist in CA and I wrote to him and explained my story and typed out my entire echo report for him and his response was as follows:

"...from everything you wrote, it is unlikely that you have PH.  The ECHO pressure estimate in your case is what we would call "borderline".  In other words, either normal or near normal.  When I see an ECHO like this, I then look at other factors such as the presence (or absence) of symptoms of shortness of breath, or other abnormalities on ECHO such as an enlarged right ventricle or significant gtricuspid regurgitation (leaky valve).  Because none of these factor is present in your case, it would be reasonable to just repeat an ECHO in 6-12 months....  Certainly anxiety can raise the pressures.  And you are right, echos can be flat-out wrong, so it is very possible that if you had a right heart cath, the actual pressures could be completely normal..."

Thank you again for your response and your prayers!  My next echo will be in Sept.  

[leoblazer74]

P.S. The PAP that you are reading, the critical number is for the diastolic pressure. Is the pressure the systolic, diastolic or mean?

If  it is diastolic, then you need to get an echo from an experienced tech used to working with PH patients to ensure that it is correct because it could be wrong.

[leoblazer74]

Hello,

I am so sorry to hear about your worries. I really feel for you. If you suspect having PH, you should really go to the PHAssociation website:
http://www.phassociation.org

There, you can get a list of specialists that are experts in PH.

One thing that you need to understand is that echos are not always accurate. They are very subjective and a lot has to do with the experience of the technician administering the test.

I was diagnosed with pulmonic stenosis in Austin, but the doctors at the Baylor clinic in Houston did not see any pulmonic stenosis but did find a hole in my heart that the AUstin Heart Hospital missed.

There is a huge human factor when it comes to diagnosing heart or pulmonary problems.

If you suspect PH, you need to see a PH specialist. You might have to travel to one, but trust me, it is really worth doing so.

This is a direct link to the doctor locator:

http://www.phassociation.org/Find_A_Doctor/

Just the average internal medicine, lung doctor or cardiologist will not be able to diagnose or treat PH that well because of its rarity. It is misdiagnosed more than almost any other disease.

Please let me know if this helped you out in any way.

[fvf147]

I forgot to mention that I'm not having any symptoms, ie... dizzy spells, SOB, nothing.

Thanks for your time.