Due Diligence on Pulmonary Hypertension

[Guest guest]

I've often posted here my concern about any potential of pulmonary

hypertension as it is a very possible and very serious complication.

More than anything else, we use our oxygen and maintain our sats to try

to prevent it. Unfortunately we have situations where we figure out here

on the forum someone likely has it but their doctors haven't been

diligent. Then it may be too late. Pulmonologists bring you in for CT's

and PFT's all the time and they tell you very little that you don't

already know from your sats and your use of oxygen. But you do need

regular echocardiograms and that means to me if you've got PF you should

have them at least annually. Then at any sign of an issue every six

months. This also comes from the Pulmonary Hypertension Center at UTSW.

Now, my most recent echocardiogram showed pulmonary pressure of 47, so I

made an appointment with the PH expert nearest me. There is a listing on

phassociation.org. First he did his own CT (every hospital wants their

own), his own echocardiogram, a six minute walk, PFT's, and ran dozens

of labs. I also had a VQ to check for blood clotting/embolisms. The

echocardiogram there only indicated a pressure of 30 mmHg but it showed

a severely dilated right ventricle, mild to moderately reduced right

ventricular systolic function, mildly dilated right atrium, mild vitral

regurgitation, mild tricuspid regurgitation, and milk pulmonic valvular

regurgitation. The diltaed ventricle was a source of concern so I did

have a right heart catheter.

For those who hear heart catheter and get scared this isn't the scary

one. Left catheters do require remaining flat for six hours, sometimes

overnight stay. Right catheters are in your veins, not arteries. They

are under local anesthesia only. They go in through your neck (sometimes

groin if your build makes neck a poor choice). They put a needle in

several times and places to deaden you and then proceed. I was able to

watch on the same screen they were looking at. Now, the result, known

during the course of the test, was that my pressure was only 18, well

within the normal range of 25. So definitively concluded no PH. As we

know, echocardiogram is used to indicate the need for a catheter, but

the only way to measure pressure accurately is with the catheter.

As to the other things, cardiologist said some of that was often seen in

PF'ers and PH doctor believes that they are actually not issues either

based on the catheter but just another example of the limitation of the

echocardiogram. Regardless, I'm scheduled for a Cardiac MRI to be sure.

As to echocardiograms, I'm now on a six month schedule and as long as it

doesn't top 50 or I don't experience other issues won't be concerned.

However, top 50 or other issues and another catheter.

What if I had been found to have PH. Then treatment. See, it is

treatable especially if found early enough. There is Tracleer, Revatio,

Iloprost, and then for more serious Remodulin and even Flolan, although

frankly I would never do Flolan. But thats just personal.

So,

Lesson 1-Regular Echocardiograms

Lesson 2-Issue on Echo get to a PH expert. There aren't that many and

you may need to travel. But, while regular cardiologists can do the

catheter for you, they are not qualified to treat PH if you have it.

Lesson 3-Get Right Heart Catheter

Lesson 4-Echo can give you false alarms. Now I'd also say that if you're

experiencing major symptoms of PH without your echo indicating, still

get to a PH expert.

Lesson 5-Pulmonary Hypertension is treatable. The sooner caught the

better.

End of today's lecture and sharing of my experience. There were two

possible outcomes. One, I had PH and would get treatment. The other, I

didn't have it. Either is far better than worrying about the

possibility.