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Sara's story began several years ago when she was having severe back pain. We went to the doctors several times but they never could tell us what was wrong. She was diagnosed with pneumonia and sports induced asthma several times. She started to hide the pain from us since she didn't want to spend the time going to the doctors when they would never help her. She got progressively worse over the pass year and was unable to hide her pain any longer. We took her to a pulmonary doctor after having several bouts of pneumonia. He was unable to give us any answers and we ended up taking her to the emerency room where they finally diagnosed her with pulmonary embolisms. We thought that we had finally discovered what was wrong with her and that we could just give her medicine and she would recover. We soon found out that was not going to be the case. She continued to get worse even though she was on blood thinners and pain medicine. She now was requiring oxygen 24/7. She was extremely exhausted and could not take care of her personal needs without help. I pressured the doctors to find out what was wrong. I did a lot of research while sitting in the hospital and came up with a couple of different diagnosis. When I talked to the doctors about my research, they didn't want to hear it. They kept telling me that none of those things pertained to Sara's case. Well, needless to say my diagnosis were right. We had to take her to UNC Chapel Hill to finally get the correct diagnosis. We met a wonderful doctor, Dr. Ford, who listened to our story and reviewed all of her medical files. He told us that my research was correct and that Sara had CTEPH which is Chronic Thromembolic pulmonary hypertension. It basically means that she has chronic blood clots throughout her lungs and thus in turn causes the pulmonary hypetension. He was not an expert on this disease so he sent us to Duke to see Dr. Tapson. Dr. Tapson confirmed the diagnosis and is now following her case. She has been going to pulmonary rehab to gain back her strength that she lost. She has been doing better with mobility but she is still requiring 6 liters of oxygen while walking. She had to take a medical leave from school this past semester and is hopeful that she can go back in the fall. We go back to Duke on the 21st of June to have a cat scan, VQ scan, Echo and six minute walking test done. We will then see the doctor that afternoon. She will be having a pulmonary angiogram, heart cath and a filter placed in her vena cava the next day. The CTEPH team will then gather together to review and compare the test from January to June. They will then determine if they will proceed with surgery or give her body some more time to dissolve the clots. Sara is hoping that they decide on surgery so she can move on with her life and get off of the oxygen. She feels like an old lady carrying around oxygen everywhere she goes. We are so thankful for all the friends and family that we have around us for support and encouragement. Thank you for all your prayers and kind words.
Sara is doing well. They were able to get three places opened. Her pressures are still mild and they believe with time and remodeling of her lungs her pressures may improve even more. The best part is that her heart is back to normal so we don’t have to worry about heart failure right now. The doctor also said that she should be able to have a baby with no problems. They said as of right now they couldn’t do any more treatment. They said she is young and they are developing new treatments all the time so they may have something for her later in life. She is doing well and is happy. We also got to meet a couple from our CTEPH Facebook at UCSD which was really nice. Thank you for all your prayers and support over the years. It has really helped us. Sara’s has a lot more adventures and dreams to accomplish and I know she will achieve all of them.
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