I just finished reading Pathlight. Every article interested me because I too have PH and have had it for many years. I too have gone through the stages described by the wonderful PHriends who have thoughtfully written in the pages. I can’t help feeling as though I should be contributing somehow to all the great efforts that others are making for a cure, so I’ll send my story hoping that it will help in some way.
"I do pray for those who work so hard for a cure. I love their confident spirit and perseverance. I have benefited from their efforts already by taking my medication, and I pray that soon our hopes will be realized."
- Julienne Brock
I was strong and eager when I was in my 20s and 30s. At some point, I hurt my back because I didn’t know the proper way to lift. After several back surgeries and lots of pain, I trudged on. I can’t even count all the tests, x-rays and medicine I went through — yet I still have back pain. I wasn’t able to do heavy nursing work any more, but I did do all that I possibly could in other areas. I was activities director in a home for the elderly and also managed to direct the arts and crafts department and was the volunteer director. Now I work at the reception desk.
I can’t remember when I first noticed the symptoms of PH because of all the difficulty in dealing with the back pain, but I did feel terrible at times and I suppose it was coming on. I had cardiac symptoms — breathlessness and chest pain, headaches and tiredness. Sometimes I felt as if I was being smothered. I again underwent a gamut of tests, even occasional trips to the ER, but nothing showed up. The cardiologist was sure there was “something” wrong, but he couldn’t pinpoint it. This was around 1990.
Then in 1996 I traveled by plane from Albany, N.Y., to Cleveland, Ohio, to visit my elderly mother, and on the way I could barely walk from one terminal to the other. I knew that there was something seriously wrong, but I wasn’t going to let my mother know. I planned to call my doctor when I returned home to Albany, but that wasn’t going to happen because I coughed up blood while I was in the bathroom in her apartment.
I had to tell her then because I was afraid something would happen when we went visiting or shopping or to church. You can imagine the look on my brother’s face when he arrived with pizza, expecting to have a little party with us and hearing that we needed him to take me to the ER at the nearby hospital!
By the time I got there, I was fine and looking very well. (I always look good!) In a way I was glad because I didn’t want anything to go wrong now. I told Dr. Ellen Cory that I coughed up blood and immediately she suspected a blood clot in my lungs. After much discussion, she convinced a pulmonary doctor to test me. He ordered an angiogram and the results were alarming. I had multiple blood clots in both lungs. I was put on CoumadinTM after having a filter placed in a main vein going to my heart. When I was discharged, I returned to Albany to die.
I soon called Albany Med and made an appointment to see a pulmonary specialist there. Fortunately, it was Dr. Anthony Malanga. As soon as he saw me walk in the door, he said, “San Diego.” I said, “California?” He said, “Yes, and the sooner, the better.” Everything happened so fast after that!
I soon found myself on a plane with an oxygen tank heading for San Diego. I stayed with my sisters in San Pedro, and they were kind enough to see that I got back and forth to San Diego where I underwent a pulmonary thromboendarterectomy. They actually went in and removed the clots in my lungs. It is a very dangerous operation, but I went through it without a hitch. I’m convinced that it was thanks to all the prayers that were said for me, and the doctors agreed.
Among other things, they told me that my pressures went down immediately during the surgery, so I presumed that all my problems were solved. As time went by, I did feel much better. I kept working, and I moved from Albany to Enfield, Conn., and now to Paterson, N.J. — all the time continuing the CoumadinTM, which is no big deal, considering. (Although I don’t like the frequent blood tests.) The diagnosis of PH was kept on my records, and I presumed it was because I once had it.
Gradually, 10 years later in 2007, I recognized the symptoms. I was short of breath and sighing a lot, so I told my doctor who referred me to a cardiologist who specializes in PH. No blood clots this time. He was very compassionate and honestly explained the diagnosis. After all that I had been through, I wasn’t surprised and accepted it calmly. I suppose he thought I didn’t understand, but I did — perfectly.
Then after a right-heart angiogram, he told me that the “numbers were high.” That didn’t surprise me either. He put me on TracleerTM, and I immediately felt better. I continue to live as I mentioned in the beginning. I don’t need oxygen nor do I have a caregiver. In fact, nobody even knows that I’m sick. Who can tell when you breathe differently? I “live with it” and go on as long as I can. I love my life! I have plans for the next year, yet I am conscious of the fact that anything can happen anytime.
PH is “life threatening and incurable.” But who knows how long it takes? I sometimes wonder what the future will bring, and then I leave it all in God’s hands and trust Him to take care of me as He has for the past 73 years. I do pray for those who work so hard for a cure. I love their confident spirit and perseverance. I have benefited from their efforts already by taking my medication, and I pray that soon our hopes will be realized. I say thank you with all my heart. God bless you!