Hello everyone - between the new house, the new job (long story, but had to transfer to a different location to keep a job and my insurance), and recent medical tests, things have been crazy and I still haven't been able to post regularly.
The latest on me (after tests nearly every day for the last two weeks):
About 4 weeks ago, my heart started to alternate between feeling like it was racing, shooting pains on the right side, and feeling normal. An EKG showed bradycardia (slow heartbeat) with arrhythmia (abnormal rhythms) and the docs could hear a "clicking" sound with their stethoscopes, so they ordered an echocardiogram.
That showed a "mass" in the right atrium of my heart. I don't know how to read ultrasounds, but I could see it. Their first suspicion varied between my CF doctor, the radiologist and the cardiologist. CF doc and radiologist both thought it was a clot on the end of my port, and the cardiologist thought it was some other mass. Had a CT chest scan to rule out any pulmonary clots, then a contrast study on my port, which revealed the catheter tip of my port was rubbing the right valve of my heart and suspected of causing my shooting pain, so they removed my port. It was noted at this time that the mass was not actually at the tip of catheter, but the radiologist who pulled the port said he still thought it was a blood clot. Still continuing to alternate between feeling the heart race, pain, and normally, but the pain has changed to feel more like my heart is being squeezed or compressed.
Follow up echocardiogram completed with contrast plus a bubble study revealed that the mass was still there and they identified a second one. Bubble study showed a positive for ASD (basically a hole in the heart), but only when I cough...LOL. Apparently, the cardiologist has indicated that at this point, the positive ASD isn't a concern.
So now, they are debating between whether these masses are IVC Clots or possibly tumors. In the meantime, today, just behind my knee cap started hurting so badly I can barely walk. If I hold completely still, it doesn't hurt, but any movement or weight bearing hurts quite badly and makes me feel like my leg is going to give out on me.
So now, tomorrow I am having a Doppler test done on my leg ( to check for a clot) and they are trying to schedule a cardiac MRI, which apparently will tell them for sure whether or not the masses in my heart are clots or not. If they are not clots, I am not sure what the next step is.
Had anyone else experienced anything similar to this? What was the outcome?
In the meantime, prior to all of this, I participated in a polyp study, and pseudomonas (which I have NEVER cultured), grew out of those. I guess I'm just feeling a little sucker punched right now, and I just want an answer - don't we all. ?
The latest on me (after tests nearly every day for the last two weeks):
About 4 weeks ago, my heart started to alternate between feeling like it was racing, shooting pains on the right side, and feeling normal. An EKG showed bradycardia (slow heartbeat) with arrhythmia (abnormal rhythms) and the docs could hear a "clicking" sound with their stethoscopes, so they ordered an echocardiogram.
That showed a "mass" in the right atrium of my heart. I don't know how to read ultrasounds, but I could see it. Their first suspicion varied between my CF doctor, the radiologist and the cardiologist. CF doc and radiologist both thought it was a clot on the end of my port, and the cardiologist thought it was some other mass. Had a CT chest scan to rule out any pulmonary clots, then a contrast study on my port, which revealed the catheter tip of my port was rubbing the right valve of my heart and suspected of causing my shooting pain, so they removed my port. It was noted at this time that the mass was not actually at the tip of catheter, but the radiologist who pulled the port said he still thought it was a blood clot. Still continuing to alternate between feeling the heart race, pain, and normally, but the pain has changed to feel more like my heart is being squeezed or compressed.
Follow up echocardiogram completed with contrast plus a bubble study revealed that the mass was still there and they identified a second one. Bubble study showed a positive for ASD (basically a hole in the heart), but only when I cough...LOL. Apparently, the cardiologist has indicated that at this point, the positive ASD isn't a concern.
So now, they are debating between whether these masses are IVC Clots or possibly tumors. In the meantime, today, just behind my knee cap started hurting so badly I can barely walk. If I hold completely still, it doesn't hurt, but any movement or weight bearing hurts quite badly and makes me feel like my leg is going to give out on me.
So now, tomorrow I am having a Doppler test done on my leg ( to check for a clot) and they are trying to schedule a cardiac MRI, which apparently will tell them for sure whether or not the masses in my heart are clots or not. If they are not clots, I am not sure what the next step is.
Had anyone else experienced anything similar to this? What was the outcome?
In the meantime, prior to all of this, I participated in a polyp study, and pseudomonas (which I have NEVER cultured), grew out of those. I guess I'm just feeling a little sucker punched right now, and I just want an answer - don't we all. ?