My name is Penelope Vazquez, I'm from Mexico. I'm 26 years old. I was diagnosed with PH when I was 18.
I was born with a hole on my heart and got it and my interventricular communication closed when I was six years old. After that my life was completely normal I used to swim, play tennis, run—everything—and I used to visit my cardiologist once a year until I was 11, and the doctor said, that there were not problems with me anymore, and it was not necessary that I keep visiting him unless I have any problems.
After that I was one hundred percent healthy until I was 18, when I had some events like passing out or feeling very tired just by walking one block or getting up stairs. One time, I was riding my bike with some friends to the beach that is like a 15 minutes from home, and when I got there I felt very bad and passed out. When I woke up I really didn't understand what was happening because I felt ok, and came back home by bike and everything was ok.
My friends told my mom about that event and we went to the cardiologist and he said that I might have PH, which I really didn't know anything about.
I started taking digoxin and some medications for hypertension but nothing worked. I start getting tired pretty fast, and the volume of liquids on my body were too much, and I got hospitalized and they started to giving me diuretics, digoxin, potasium, and hydralazin, but nothing got to well, after that they send me to Monterrey and got a cathetherization, and becuase of that they really could know my illness for sure. My real pressure that it was 170MGhg, then I met my rheumologist and cardiolgist that ask my mom and I, to go into a protocol of PH they were starting, and told us that it was a new medicine that they were testing and If I can resist it, would be great for me.
So, I start sitaxentan. The first three months without knowing how much I was taking because it was a test to see if I could accept it, and everything got better. I start to walk a little bit more and more, I didn't felt so much tired and the pressure I felt on my chest was gone, At first I was of course scared, because I had not an idea about this illness. I didn't know anybody with PH, and when I visited my doctors the other patients didn't talk about it too much, so I didn't know if that was going to get good results. I really had very few symptoms like headaches, feeling dizzy sometimes, and a little bit more swelled, but everything was getting better and better.
I’ve taken sitaxentan for three years. Two or three times I was hospitalized because of the lasix that makes my potassium too low and give me cramps, and because of too much liquids in my body, but nothing really bad I think.
A year ago I started to take sildenafil because the study with sitaxentan was over on me. I felt a little bit scared but when I started taking it it was the same at least for me. Now thank God I return with sitaxentan and sildenafil too.
I do almost everything. I went to Miami last year with O2 on the plane but I didn't really feel I need it, it was just for precaution. It was a great trip!! I think I'm very lucky, because I don't think I get as tired as my pressure must make me feel. My doctor told me one time that my PH was one of the highest pressure she has seen. 160! I think living in Tampico by the sea level helps me a lot!
My friends know about my PH and understand me and help me a lot, but at the beginning it was a little bit difficult for me to lower the rhythm of dancing, parties, trips to hike or so but now we have more things to do and I do everything with them. My family of course take care of me a lot—my parents and my sister. I work in a company that builds marine platforms, and they understand me and give me the chance to travel any time I need it to see my doctors and so. It’s a nice job.
Of course, many times I get tired, and I stop, but that's it, this is my new life and I'm getting used to live every day like this and taking pills, but it doesn't bother me. Of course I have my enemies too— like salt!!!!! It’s very difficult for me stop eating without ANY salt but I'm getting used to it too.
When I went to the conference in June I was very shocked to see so many people with PH. I didn`t know we were so many!! And hearing young peoples’ stories and makes me feel better, and seeing that many people were chosen to carry on with this and to do something about it.
After I came back to the conference I start having a strange cough and I realized that it was with blood! I get really scared, I called my doctors and they told me to stay at home and rest, I did it for almost one week I felt very tired. I was really worried and scared but then I got medicine and start getting better until I was OK.
So I know I will have my events—sometimes bad sometime worse and sometimes nothing, but this is just one part of my life, and this is the part of the cake that I got! Despite that event I sleep now with O2 just for precaution.
If at least one person reads my story I want them to know that of course this is a very difficult trip, but you must help yourself too. Taking care of yourself and following the doctors indications, and that all the people who love you will do it with or without PH. Don't give up. This is just the beginning of a looong loong trip full of discoveries and the best is coming...
Thanks to all my doctors that without them I might not be here, my family of course I love you all! And God, he knows what I can resist.