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I have Lupus and am getting tested for Pulmonary Hypertension. Has anybody out there got this and would they like to share their story.

By April 7, 2010 - 11:01pm
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Hi Fighting-

I'm sorry you are dealing with this. It can be hard to get these diseases diagnosed, so it is a good thing that are you are being tested. I haven't personally had PH but I have dealt with patients who had it.

Pulmonary hypertension is a difficult disease, and often there is no apparent cause. There is no cure for it at this time. It is medically managed. If you are diagnosed with it, you will want to see a specialist who sees a lot of cases, because it is not as common as something like Lupus. We do have a page here on PH, https://www.empowher.com/condition/pulmonary-hypertension

I would recommend doing a lot of research on the disease and the medications, to give you an idea what to expect. PH tends to progress, but often slowly if medicated properly. It will be very important to take good care of yourself. If you are diagnosed you may want to see a nutritionist to determine the best diet for you, because diet can have a huge impact on breathing issues and hypertension. You'll just want to be as healthy as you can be.

There is a support group for dealing with PH: http://www.phassociation.org/Page.aspx?pid=197 and they may be able to help you with peer support and tips for every day life with this disease.

I wish you much luck.

April 9, 2010 - 6:40am
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