Hi again!

Wow! I can't believe the kinks seem to be worked out with the posting problems I was having! I have been so impressed with the members on this site- your warmth, sincerity, and support you give one another. I had my first pacemaker implanted in 2001, following years of trying to control my a number of arrhythmias with medication, and 3 ablations. Two weeks following my implantation, I went to the emergency room with severe swelling of my neck and face. After determining that there was nothing wrong with the pacemaker itself, I was patted on the head and sent home. The swelling continued for the next four years, and I pointed this out at each visit to the EP's office. I was given a blank stare each and every time. I am 98-100% paced in the atrium, and about 4% in the ventricles. In 2004, my pacer was replaced because the battery was gone. The swelling of my face and neck became steadily worse. I was sleeping on 3 pillows, had trouble breathing, and couldn't bend over without feeling like my eyes were going to pop out! Finally, a family physician realized something was wrong, and sent me to a thoracic surgeon. He ordered a venogram which showed my superior vena cava was 95% blocked. The blockage was in a bad spot- right where the SVC empties into the right atrium. A ballooning of the SVC was performed. That lasted 2 weeks. This was repeated, again, lasting 2 days this time. The doctors were balking at bypass surgery because of the risk. Finally, last July, I went into the hospital and had both leads removed. The next day they performed a venoplasty, and placed a large stent in the SVC. 2 days later, they replaced both leads. The swelling, headaches, vein distention, all disappeared with in days. I did really well, and was released after a week in the hospital. My problem now is that since all this, I have almost constant chest pain. When I tell the EP about this, they read the report on the last interrogation, and tell me there is nothing wrong with the device. It's hard to know when to pursue what I feel is a problem when the Doctor makes me feel like this is all in my head! It seems like all they're focused on is the device's performance, and not how the patient feels! Sorry this is so long- but it's nice to vent a little! Anyway, thanks in advance for any thoughts or feedback! Bambi


2 Comments

Congrats on your strength

by queen_beez - 2007-03-23 01:03:21

I applaud you on your strength and courage through all this .i think you should do as you did when you last had something wrong with you only FASTER> please do not let the doctors tell you it is all in your head. I have posted to others about this subject as I have gone through this alot. I will tell you quickly but basically I was a mess. I had blood clots in legs, brain tumor, pulmonary embolisms a coulple differrent cancers and ultimately heart problems. It took alot of time and persistence to get some of these doctors to do their jobs. If not for my husband and a kind nurse whom he would not let ignore him, I would not be here today. I beg of you to take my advice. You knew something was wrong before and you took awhile to get it fixed. We only have one life and every day we go through it not feeling well when we could be feeling better if only one would listen to us, we are basically giving those days away. Don't give your days away that are too precious. I am sorry I am going on but I want you to rad this and pick up the phone and insist the doctor take your complaints seriously. Ask him ,if it were his daughter would he tell her not to worry ,and if she continued to feel really bad and she knew in her heart something was not right , would he listen or would he steal her day. Let us know how things work out. Take care. Susan

Thank you Susan!

by bambi - 2007-03-24 04:03:12

Thank you for your feedback, Susan. Wow! You have been THROUGH it! I certainly applaud your courage and strength! I lost my insurance 2 years ago. My state's version of medicare [Tennessee] went belly up, and thousands of us "uninsurables" lost all our coverage. The last surgeries I had in July, I have to pay out of my own pocket. I'm widowed with 3 kids to raise, so you can imagine how I hesitate in seeing a Dr. for anything! I'm hoping the chest pain will resolve on its own, but if it persists too much longer, I'll have to get it checked out! Anyway, I appreciate your comments and I look forward to posting again! Have a wonderful weekend!

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