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Patient story

Barbara Ching

"After it was over, he explained to me that I had and incurable disease and I would have to be under doctor's care the rest of my life."

Hello, I am Barbara Ching from Mississippi. I am now 66 years old. I have been diagnosed with PH since April 2002. What first drove me to go to the doctor was when I climbed stairs of any amount I thought I was having a heart attack. So I went to the heart doctor who immediately started tests beginning with the nuclear heart test that takes the place of the treadmill. (No way could I have walked on a treadmill). Nothing found. He then suggested the cardiogram. He told me while the procedure was going on that it wasn't my heart but it was my lungs. My pressure in my lungs was too high. After it was over he explained to me that I had and incurable disease and I would have to be under doctor's care the rest of my life. He recommended I go to a pulmonary doctor, which I had one that was treating me for sleep apnea. He wasn't as concerned as I thought he should be after I had been in the hospital for congestive heart failure and he never even came to the hospital after I called him. But as God would have it the doctor on call at the hospital treated me and was so concerned, I changed doctors and I feel he saved my life so many times. I had several bouts with congestive heart failure and surgeries on my knees (11 to be exact). He tried 3 kinds of medicines on me for my PH but I couldn't take some of them until he tried Letairis. It has helped a good bit but not enough to get me to my old self again. I also was taking 260 MG of Lasix daily.

After having so many surgeries on my knees my lungs soon became weak and after 3 or 4 surgeries I had to be put on life support each time I had another surgery. Then eventually I couldn't be put to sleep for anymore surgeries. My last two knee surgeries I had an epidural and was awake for them.

After a few more bouts with congestive heart failure, my kidneys failed and I am now on dialysis 3 times a week for 4 1/2 hours each. I have been a trooper up til now but the thought of this routine for the rest of my life I could hardly wrap my mind around. Now, I have and I feel I can make it. I have the Lord and He's in control.

I am able to stay by myself even though I am in a motorized wheelchair and I am on oxygen 24/7. I have had some wonderful family members and friends that have helped me and I thank God for them.

My blessings go out to all of you with PH and other conditions but for your strength look to the Lord. On days I go to dialysis I am so tired but the next day I'm up to my recent old self.

 

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The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.