First of all, thank you for taking my question. I am thrilled to finally get through.
I have IDCM with an EF of 15% at diagnosis, June, 2002. I also have pulmonary hypertension, originally with a mean PAP of 34 at RHC, now down to 35 by echo. I also have a history of multiple arrythmias, both atrial and ventricular. I have had SVT with AVnodal reentry tach, rapid atrial fib with a rate up to 230, and an ectopic atrial tach. I have nonsustained VTach . After a T Wave alternans test, it was determined by 2 EP's that I needed an ICD placed. The attempt was unsuccessful due to persistent left superior vena cava, and extremely tortuous vessel on the right side. I am now on Amiodarone, and doing well with the arrythmias. I also had an unsuccessful ablation attempt for the AVNRT, due to a *huge* coronary sinus. I have mild to moderate restrictive lung disease, presumably secondary to the PH which is supposedly secondary to the LV dysfunction. My left atrium has gone from 40 to 48 mm since diagnosis. Finally, I am on 2 liters of O2 at night for desats down to the 70's. Sleep study times 2 reveals no apnea, just hypopnea which is worse on my left side and much less while on my back.
Sorry about all the history, but I am an RN and want to give you the whole picture!
Is it possible that I have a small ASD that wasn't found on cath or echo? Should I have a TEE to rule it out? The pulmonologist thinks the PH came before the cardiomyopathy. The cardiac guy doesn't agree. It seems like all this stuff goes along with an ASD; restrictive disease, PH, the arrhythmias.
Thanks for the post, and you are certainly welcome.
Q1:"Is it possible that I have a small ASD that wasn't found on cath or echo?"
Yes, it is possible. But if it was so small as not to be seen, or heard, then it would be very unlikely for it to be the culprit for your troubles. Also, although ASDs can cause PH, they usually lead first to RV dilation way, way before the patient ever develops the other findings you mentioned.
If you lived in a third-world country, and were elderly (I don't have your age) then it would be conceivable that an ASD might have caused these issues. In the US, which I'm assuming is where you live, your scenario would be exceedingly unlikely to be caused by an ASD.
Although you didn't state as much, I'm assuming (again) that the reason you bring up the issue of ASD is the nighttime, positional desaturation? This drop in oxygen at night is very common in CHF patients due to the phenomenon of Cheyne-Stokes breathing pattern. This pattern is a cyclic pattern of breathing whereby a person first accelerates (unwittingly) their respirations, then decelerates their respirations. Several other types of physiologic shunts could also explain the nighttime desats without having to invoke an ASD.
Hi, I am truly sorry to read of your dilated cardiomyopathy, it is an evil disease and I wish you all the best. IDCM claimed the life of my 17 year old brother suddenly (he was not diagnosed and thus did not have an ICD like you). I was wondering if you have any other members of your family with this condition? Did you have myocarditis before the cardiomyopathy or did you have a muscle biopsy to exclude this possibility? I hope these questions are not too intrusive.
Sorry I just re-read your post and noted that you couldn't have an ICD put in, that you are on Amiodarone instead. My brother was put on Tamboccor for afib before he died (of course a big no no for structural heart disease but hey that's another story).
Hi there. How are your pvc's. Any better? Are you still having morning sickness? I did have a little tach during pregnancy but mostly just a pounding heart and PVC's in the last few days. Fast and pounding heart doesn't bother me as much as the PVC's unless acompanied by anxiety. PVC's when frequent make me very anxious. I sorry about your brother. That is very scaring to think someone that young could get heart disease. I don't understand completely what Cardiomyopathy is. Can you please explain? What are the symptoms? Can PVC's cause this? Any info on this ........
just went for my ultrasound today and all is well, he or she is very active already! I also spoke to the ob about the PVCs and the tachy and she said it is very common and not to be too concerned about it, but to be on the safe side i will still have another echo and heart monitor - this is because of my lousy family history. Cardiomyopathy is a disease of the heart muscle - it is very rare. Some forms of cardiomyopathy are inherited, some are not. The form that my brother had was idiopathic (no known cause) dilated cardiomyopathy - it is not heritable but I am still wary. No PVCs can't cause it (thank god!) but sometimes uncontrolled very fast tachycardia or afib can (this was probably the situation with my brother). PS my morning sickness is still with me :(
I'm glad to hear your doing well. I want to be more informed about some of these medical conditions since I read so much about them on this site and have no idea what anyone is talking about. Then I end up scaring myself thinking maybe this will happen to me. I think I need to relax and appreciate that my situation is not as bad as some. There are so many strong people out there dealing with a lot more. I just want to be half as strong dealing with these anxiety provoking pvc's. Any- way enough of that. I'm glad to here your pregnancy is going good. If you ever have anymore questions about pregnancy and pvc's don't hesitate to ask me. -April
Hi, I just noticed your post today. Since I have IDCM, they don't know why I have it. It probably was a myocarditis, but they didn't do a biopsy during the cath as they said it wouldn't change the treatment and that a virus, if I had it, was not recent. They also said that there are risks with a biopsy. Nope, no ICD! Well controlled on Amiodarone, and so far no side effects from it, thank the Lord. It's funny you should ask about the family history. My twin sister just found out that she may have cardiomyopathy. Her EF is still very good at 45% though, and with no symptoms. I have read that there can be up to a 30% familial link even with the idiopathic type. Hmmm...
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