Pulmonary Hypertension w/valve regurge

[SusanH]

I am back from the cardiologist.

Quick recap: I am a 45YO mom with a recent abnormal echo which showed 2+ tricuspid valve regurge and 1+ mitral valve regurge. 43 MMGH with mild to moderate PH.

The cardio seemed more concerned about the PH and he wants me to see a pulmonary guy before doing a rt cath. I have done a search ont his site and found great info, but I still have a couple of questions:

1. Does valve regurge cause PH or does PH cause the regurge? I guess I'm wondering if the valves are fixed, will that help my PH and its symptoms? (mainly SOB and lightheaded) Would valve repair/replacement stop further heart damage?

2. Does a dx of valve regurge mean that PH is likely to be secondary?

3. Is there anyone else out there with similar age, dx, and symptoms?

4. Cardiologist has referred me to a specific pulmonary doc, but he has no appts until January! I am now waiting to hear what the cardiologist wants me to do, but in the meantime I am looking for someone on my own. Found a pulm group in Orlando using the PHA web site and am waiting for a callback from them about an appt. Just not sure if I should wait and go where the cardio suggests or strike out on my own. And how do I know if the pulmonologist he refers me to is experienced in PH...won't they all claim to be?

 

[Nancy]

My husband has PH and has been intreatment since 2001.

There is a website for PH.

Here is the link:

http://www.phassociation.org/

This is the main page. There you can link to a description of PH, and also under medical resources, you can find a PK specialist to see.

There are also forums there on another page.

Without exception, the people there will recommend that you see a PH specialist.

Most who have been diagnosed, have had doctors who didn't understand the disease, didn't know how to test for it, didn't know how to treat it. They fooled around like this until their disease got terribly serious. It happened to my husband too. It had been showing up in his echoes for many years. His former cardioligist ignored it, never sent him on to a specialist and he almost died. I am sure the resultant damage that waiting like that did to his system are now permanent.

We did find a specialist for him, just in the nick of time, and he was started om Tracleer wich has helped tremendously. He had to undergo an entire month of testing in the hospital to straighten his system out.

It was originally thought that his PH was secondary, but after testing, it was determined that it was primary.

He still has Tricuspid reguirgitation and it is severe. Regarding that, it is difficult to determine if the tricuspid regurg. is caused by the back pressure from the PH or damage from his rheumatic heart disease. At any rate, he is now almost inoperable since it would be his fourth heart surgery.

The right heart cath is the proper test for PH, and also during that test, a specialist can do a drug challenge to see what would work for you. Not everyone responds the same way to the various treatments which are available.

If the Pulmonary doctor that your card. is sending you to is not a specialist in PH, I urge you to seek out another one.

PH is a rare disease, and most doctors will never see a case of it in their lifetime. PH specialists see it all the time, know what the latest treatments are, and how to test correctly for it. They also know about any clinical trials available.

Regarding how you can tell if they are specialists, just ask how many PH patients they treat. If they are not forthcoming with information, then seek another doctor.

P.S. I see you have already looked at the PHA website, sorry, I didn't notice. I'll let the info. in the beginning stand for others for whom it might help.

I wish you luck with your quest.

 

[SusanH]

Thanks, Nancy, for your reply...it is much appreciated Yes, I have been to the PHA site and boards, but no replies to my post yet. Since I do have the valve problem as well as PH, I like to think that both boards will be of help to me!

If anyone out there can help with my specific questions listed above, I would love to hear from you.