Mary: Think of your grandchildren as your positive thing. I wish I had them. I am 51 and have a 33 y/o son and a 29 y/o daughter, who are waiting for everything to be just right in their lives to have children. Ideally, that's great planning, but is there ever a time when things are just right? Oh well, perhaps one day. Things weren't "just right" for me, and I wouldn't trade my children for the world!!
On the bright side, maybe you won't be plagued with arrhythmias anymore. My story: Those of you who've heard it please escape!!
I started passing out when I was 13. I chased it around all my life, and no one would take me seriously. In 1998 I was finally diagnosed with SSS and got a pacemaker. I then was 46 years old. The doctor who put it in inadvertantly perforated my right ventricle with the ventricular electrode, causing it to capture my chest wall whenever the V lead came on. If felt horrible and I had to put up with that until finally in 2001, the pacer rep just turned off the V lead, and just paced from the atrium. I had had short burst of arrhythmias also all my life, which went undiagnosed until 1996, when I began having rapid, uncontrolled afib episodes lasting 8 to 18 hours and then began the nightmare of trying out all the antiarrhythmic drugs, none of which worked. In late 2001, I was referred for a PVA and took six months more of afib to give in. I had a PVA in March of 2002 and during the procedure the loop, mapping catheter slipped into my left ventricle and became engangled in my mitral valve root. The doctors pulled hard and the wire sliced through my mitral valve and papillary muscle, destroying the valve. I was then taken to emergency open heart surgery for a mitral valve replacement with a titaneum valve. Post op, I was taken off life support too soon and went into congestive heart failure and had to be reintubated and put back on a ventillator. My right lung collapsed and I had to have chest tubes put in. I went into a coma, which I remained in for 2 weeks. During the coma, I had no blink reflex and the nurses never taped my eyes shut and I developed exposure keratopathy (ulcerated corneas) from staring at the light in the ceiling 24/7 for 2 weeks. My right ulner nerve was damaged and remains weak and numb in the outer half of my right hand. While in the coma, I had a stroke, which affects my cognitive thinking and short term memory. Oh, did I tell you that already? Ha During my surgery, the doctors took out the pacemaker telling me that it was installed wrong. They kept telling my family they would replace it at such a time when I became more stable. They never replaced it. Now, in early October, I had another fainting spell and they tell me I need another pacemaker. I just can't do it. Now I am permenantly on SSD. I have been an RN, with 20 years working in CCUs and had two businesses at the time of my PVA. Now I am on SSD and have lost both businesses. I will never again be able to practice nursing. I cringe when people take PVA lightly. Then I have to step back and realize that I was in the vast minority. Statistically this has happened to 3 people in the world. I really believe that this has happened much more often than is reported. I, in fact know of one unreported case that happened in N Carolina. That woman is in a long term care facility and has been in a coma for 2 years.
You're right Mary, there are always worse cases, and there are worse cases than mine. So continue to be positive, and .....
Be well,
Pam