Saturday, September 7, 2013

A little education

As with most of the important areas in my life, both good and bad, I believe in getting as much information as possible about the subject. I have never been afraid of asking for help, both from friends and professionals. So it shouldn't be a surprise that when I was diagnosed with PH that I would look for help. My first stop was the Pulmonary Hypertension Association (PHA). They sent me out a packet called an envelope of hope (remember, hope is my new word for the year). It was so helpful. The first words I read were "a diagnosis of PH is not a death sentence". They talked about the fact that there were many treatments that while they don't cure PH, they certainly work to extend your life. I get a newsletter from PHA. I was interested in the following article: new PH drug . This drug is the first specifically made to treat Chronic Thromboembolic Pulmonary Hypertension (CTEPH) which is the kind of PH I have. A decision on this drug is expected in October. You can bet if it is approved I will be the first one at my doctor's office asking about it. I was also interested in the fact that a representative from Texas in the Senate, Rep. Kevin Brady, sent a letter of support to Congress about a possible bill on PH. Bill in Congress So there is much to be excited about. On the weight front, I lost 7 pounds in the past 10+ days since I started WW again. It felt good to see the numbers going down. My goal is a total of 15 pounds by Sept. 16 when I see my doctor again. The meds continue to help me with my stamina (another key word in my vocabulary these days). I am feeling better than I have in some time. Thanks again for the continued words of support and prayers.