I'm very confused with what is going on and it seems as though my questions aren't really being answered. If anyone out there reading this can offer some insight or advice from the medical community, I will be very grateful considering I'm not familiar with a lot of the medical jargon that my doctors use. I was born with congenital AV heart-block (my mother had lupus). I had slow heartbeat and when I was eight and in 1994 they implanted a permanent minuet pacemaker. I have the same pacemaker today (I'm currently 21 and about to be 22, female). I had to change from a children's doctor to another medical center because of my age. So, where I am now is relatively new. My old physician told me that my heart was slightly enlarged. Recently, they found a blood clot on one of my leads in my right atrium and have put me on Coumadin. I have been on Coumadin for about six months. My last ultra-sound shows that the clot has neither increased nor decreased in size. My doctor told me that she didn't know what to do. I'm currently waiting for another ultrasound and she wants me to see another doctor for another opinion. However, I'm starting to get scared because my legs and feet are purple (my feet are always cold). My stomach has swollen to the point where it looks like I'm pregnant (even though I'm definitely not). Recently, when I tried to run on a treadmill, I could not stop coughing up some gross mucus. These symptoms are very embarrassing and very scary. Does anyone have any idea what this is or what I should ask my doctor? I want to be a well informed patient so that I can ask questions and look up everything before I go to another appointment. Thank you very much for all of your help.
I have a friend that just found out she has blood clots on her Atrial pacemaker lead. She is very concerned and has not gotten any answers as to what caused this or what they are going to do to fix it. The doctors say this is very rare and don't seem to have any answers for her. I know it can be very serious if the clot breaks loose. The clot has gotten larger over the past several months and more have formed on the lead. Did you get any answers about this from your doctors?
I understand exactly where you are coming from I am 39 years old. I have a pacemaker and 3 years ago they found a clot on my pacemaker lead they put me on coumadin. about 6 months ago they finally told me in was actually in my right atrium. I cannot find any doctor to do anything about it I switched once and am getting ready to switch again if he doesnt do anything next week. I have 7 children who count on me everyday to be here. I need answers too. lets keep in touch. thanks
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