I was diagnosed with PAH in the spring of 2007, just before I had liver surgery. I had a tumor (non cancerous) that was causing a lot of problems and so they removed the tumor. However, a cardiologist, pulmonologist and my primary doctors all agreed from my heart cath, echocardiogram and stress test that I had PAH. I thought I had asthma or a heart condition. None of them were PAH specialist and thought I should see a specialist.
I read a little about it and it frightened me, so for a year and a half, I did nothing. I just didn't want to deal with it. But the symptoms persisted and many days I couldn't catch my breath, like something was laying on my chest, I had pain in my heart, dizzy spells and nausea. I couldn't sleep and was even afraid to sleep. I went into the hospital through emergency and was given an EKG and was told nothing was wrong with me but I still had no energy and had shortness of breath for just walking a couple of steps, I would tell the emergency doctor. However, I was treated as if I was looking for attention and it was even more frustrating. I even had one doctor tell me, I didn't have PAH, when I asked him his background, he said he knew PAH from just looking at a person. He did give me a few test and admitted that I had a lot pressure in my lungs but still believed it would go away with exercise.
I didn't feel like anyone understood what was happening to me. I was afraid I was dying. I did realize one thing and that was not many doctors knew what it was or even how to identify it, let alone, how to treat it.
I tried working but did not have the stamina to go in every day. I was pressured because I needed to work. The dizziness and pain exacerbated, until I was at my wits end.
Well, I got an appointment at UCLA and saw Dr. Oudiz. He said he could help me. He wrote me a prescription for diuretics and vitamins and said he would be finding out the best course for me soon. He is the first doctor that gave me hope. That didn't look at me as if my symptoms were not corresponding to whatever they thought I had or didn't have.
I just went to a support meeting. The first in my life. I didn't know what to expect but I listened, I didn't say anything, but I heard people saying the same things I was saying, feeling the same symptoms I was feeling and being frustrated as I was and I felt again, for the first time, I might just get help and I have hope. I didn't have to give up. I met Anita, who gave me her number and said call me and "don't get discouraged". She knew first hand you can get overwhelmingly discouraged. Most people there were empathetic and very knowledgeable about medications and treatments. Everyone there loved Dr. Oudiz.
So anyone newly diagnosed: be concerned but do something, get help with PAH professionals, no other doctor is likely to understand your disease and may give you a prescription for depression. Get into a support group and don't be afraid of clinical trials. It might help us find a cure one day.
Even though it might be difficult figure out a way to donate your time, money and even your body, as I plan to.
Feel passion, instead of fear. And no matter what, even in a small way, we can make a difference and help someone not go through what many of us have already experienced.
Take care, know that help is on the way.