Today is a little different topic.
Some of you who know me know that I experienced a significant medical nightmare of my own in 2007. I made a website called http://www.vtpatients.org/ to make sure my story was out there because the doctors involved didn't want to share my story with the rest of the world and I wanted it to be out there for others to discover. I connected with some people through my site and know that I was able to help them.
Since then there has been an article published about my case. The article has also been cited in other articles and other case reports have shown up. My story has apparently done what I wanted it to do- help other people.
So I have decided to take down my website and publish the content here. Over the next couple of days I will publish all the information I wrote about ventricular tachycardia on my site. Again, this is a very personal story but I would be happy to connect with anyone who has questions about VT, ICDs or anything else. The one thing I learned from my ordeal was the need to advocate for myself and I hope to help others to do the same.
So here is my story:
I want to share my story with anyone who has an ICD and may have refractory VT.
I was diagnosed with viral cardiomyopathy in 1994. I remained stable for a long time but my cardiomyopathy worsened with my second pregnancy in 2006. By February 2007 (7 months postpartum) I had an EF of 15%. I was being considered for transplant and had an ICD placed in February 2007. About 1 month after the ICD was placed, I began to have large amounts of non sustained VT (8-10 episodes per day) when I never had any VT prior to ICD implantation. In April I had my first shock for VF and was admitted for Sotolol initiation. I was also told to stop driving, which is a feat for a mom with three small children. An echo was done at this time which showed my EF had improved to 33% and transplant was off the table. During this admission they also discovered that the ventricular pacer of the ICD was throwing me into VT and turned it down to 30 to prevent it from firing.
I was on Sotolol for a month which did not decrease the episodes. It was stopped the end of May and a VT ablation was done. During the procedure I suffered a retinal artery occlusion and lost some vision in my left eye. I had suspected the VT was related to the ICD lead but was told that it was all in the left ventricle and it was not related to the lead. I had some VT after the procedure but this was blamed on dehydration and I was sent home. I was started on anticoagulants for my stroke. My beta blocker dose was also increased at this time.
About 2 weeks later I took my baby out of her highchair, set her down on the floor and proceeded to get dizzy. I collapsed and lost consciousness. I woke up a few seconds later covered in blood. According to the ICD interrogation, I had a 1 1/2 second pause, followed by the ventricular pacer firing and then I went in to ventricular fibrillation. I was shocked and required pacing 4 times before waking up. The event was recorded as 12 seconds long. I cut my face and had a concussion and was again admitted to the hospital.
This time they decided I had pause dependent VT and they decided to put in an atrial lead to my ICD so they could do atrial pacing to prevent a pause. The idea was that if they prevented my heart rate from going lower than 80 they would prevent the pause and prevent the VT. I was changed to a dual chamber generator and after the surgery had 24 hours of atrial fibrillation. They also noticed that my ventricular lead was not sensing correctly. They said they were unable to remove it so they put in a second ventricular lead. The atrial fibrillation eventually went away and I was discharged after about 24 hours with no VT.
During the next 2 weeks, I thought I was doing better. I was unaware of any episodes and at one point was told I hadn't had any. A few days later, I noticed that I was still having episodes and they tended to happen when I was laying on the couch on my left side. I had several episodes in rapid succession and actually lost consciousness for a second one night. This scared me and I called my doctor. The next day I transmitted my device info over the phone to my doctor and she told me I had to go back to the hospital because I had had "several" episodes of VT and had been paced out several times. They wanted to start me back on Sotolol.
Reluctantly, I cancelled my daughter's first birthday party and went back to the hospital. After interrogation, I discovered that "several episodes" were actually 81 (in 10 days) and I had been paced out of VT about 30 times. I was admitted and Sotolol was started the next day. The atrial pacer setting was also changed to 90 because they still thought this was pause related. At that point, the EP doctor who was attending to me during this hospitalization admitted they really didn't know how to stop my VT and began to believe that maybe it was a device problem. However, I was told it was too dangerous to remove the device and they needed to control it with medication. At this point, I began entertaining the idea that the doctors taking care of me did not know how to fix me and began emailing EP doctors from all over the country. I received a reply from Dr. William Stevensen at Brigham and Women's hospital in Boston who said he would be willing to look at my records to see if they could be of help.
Sotolol had no effect and was stopped after 2 doses. The episodes continued, mostly at night or when I bent over or was on my left side. One night in the hospital I asked the nurses to print out all my alarms and stared at them. I noticed a pattern of atrial pacer spike, no ventricular beat, atrial pacer spike, ventricular pacer then VT. This was how the majority of my episodes started and I questioned my doctors about this. I was told this was a mode in a medtronic device called MVP mode which was designed to decrease the amount of ventricular pacing. In my case it appeared it had been triggering VT. They turned it off, I had no VT for 36 hours and was discharged. About 3 hours after being discharged, I had an episode of VT while laying on my left side on the floor playing with my children. Obviously I wasn't cured. I decided that since I had an appointment with my EP doctor in 2 weeks, I was going to ignore my problem for the next 2 weeks unless I blacked out or got shocked.
Two days later I woke up to being shocked at 4 am. I transmitted my episode to my EP doctor and was told I was shocked out of VT. I was told my EP doctor would call me and I asked if I could make an appointment to see her. I was told I could see her the next day. I called Dr. Stevensen at Brigham and Women's Hospital that afternoon and began gathering my records to send to him. I left a message with him and he called back when we were out. I had intended on calling him back the next day after seeing my EP doctor.
The next morning I received a call saying my EP doctor had to cancel my appointment but she would call me later. I was upset because I didn't feel like she was paying attention to me. I went to the office to pick up my records and spoke to my general cardiologist who is in the same office. She gave me a prescription for amiodorone and told me not to fill it until she talked to my EP doctor for me.
I went home with my mother, gave my kids lunch, bent over to pick up macaroni and cheese off the floor, and got shocked again. I called my cardiologist's office and they asked if I wanted to transmit the episode. I told them I felt I needed to see a doctor so they told me to go to the local emergency department by ambulance. That afternoon, Dr. Stevensen called my house and spoke to my mother. My mother told him what had happened and he apparently told her he wanted to get involved and asked for the number for my EP doctor and immediately called her.
At the hospital they were planning on admitting me to start on IV amiodorone, a drug with terrible side effects and only a 70% effectiveness rate. I didn't feel as though I had any other choice so I was agreeable to this plan. After a few hours in the ED, my EP doctor came to talk to me and told me that Dr. Stevensen had called her. He wanted me to be transferred to Boston to attempt a VT ablation. I was admitted to the hospital to be transferred to Boston the next day.
That night, in the middle of the night I received 2 shocks. Three nurses stared at me while this happened and my nurse actually ran out of the room laughing. Thankfully, a friend of mine who was working as a nurse on the floor that night was there for me and held my hand through it. The next day I was unable to be transferred to Boston due to transportation issues but I was transferred to a different unit in the hospital and started on a lidocaine drip.
The next day I was transferred to Boston by ambulance. We did not arrive in Boston until 7pm so there was no way I could get the procedure done that day. I was told the procedure would be scheduled for Monday.
The next day I had an echocardiogram that showed my EF was 30-35%. I was pleased with this. I hung out in the hospital until Monday morning when things started to happen. I saw about 10 different cardiologists on Monday morning who were trying to plan the best way to approach my problem. They thought I had a clot in my left ventricle so they sent me for a contrast echo to get a better look. It turned out that I didn't have a clot but I wasn't able to get my procedure until the next day.
On Tuesday morning I went down to the EP lab for a VT ablation. They were unable to induce VT after several hours of trying. They were unable to ablate anything because there was no arrhythmia. I was devastated because I thought that if the doctors in Boston couldn't help me then no one would be able to help me. The doctors vowed they weren't giving up and had a meeting about me.
A few hours later, they came to tell me they wanted to try again to induce VT. They strongly suspected a mechanical problem and the fact that they couldn't induce VT in the typical ways made them further suspect this. If they were not able to induce VT again they were planning on pulling out my ventricular leads. If they were able to induce VT then they would do an ablation.
I went back to the EP lab in the morning. They successfully induced VT with drugs and set up to do an ablation. When the doctor put the ablation catheter into my heart next to the insertion point of my first ICD lead she noticed that the VT was coming from that exact spot. They removed the leads from my ventricle and put in a new one in a different spot. Lead removal is a risky procedure that is only done in a few centers throughout the country. I was lucky enough to be in the hands of one of the best doctors in the northeast for lead removals.
I had to go back the next day because my lead wasn't working correctly. They repositioned it and it is working correctly now.
AND MY VT PROBLEM IS COMPLETELY CURED.
This was a very rare complication of ICD insertion. So rare that the doctors where I live had not even seriously considered it as a cause to my problem. I had a VT ordeal for 6 months. I had over 500 episodes of VT, 6 shocks, at least 80 times where I was paced out and 6 hospitalizations. I was told I couldn't drive, I couldn't be alone with my children, I couldn't work and basically had all of my life taken away from me. I was separated from my family many times and it took ME TAKING MATTERS INTO MY OWN HANDS AND SEEKING A SECOND OPINION to find the answer.
I am sharing my story because I want others who may be having similar problems to know what happened to me. This is rare.. I was the 4th patient they had seen in Boston. But it can happen. If something doesn't make sense, then it probably doesn't make sense. I never had VT before I had my ICD placed and then suddenly I was having ridiculous amounts of VT. It didn't make sense. And there was a reason. Because the device itself was causing my problem.
I am now VT free and driving again. I am trying to make up for lost time with my kids and doing as much fun stuff as I can for the rest of the summer. I am back to work and trying to recover my life. I do not fault anyone- this was simply a case of people not considering a rare possibility. But I hope that cardiology doctors can learn from what happened to me and hopefully recognize it in another patient. This is why I created this site.
You can read my story in more detail on my blog.
Update: 1 year later 7/10/08
I have been VT free since the day before my device was replaced in Boston. My EF has improved to 43% and I am completely asymptomatic. My old ICD lead was part of a recall by Medtronic because it was found to have an increased risk of fracture. I still struggle every day with post traumatic stress but my life is perfectly normal now. I can drive, take care of my kids and do everything I want to do. I am considering the possibility of having my ICD removed. I still struggle with what happened to me and my life will never been the same but things are improving. My youngest daughter just turned 2 and we had a fabulous party that didn't involve going to the hospital.
Today I had my ICD removed in Boston by the same doctors who saved my life last year. I have lost so much weight that the thing was moving all around in my chest, causing constant pain. Coupled with the psychological trauma I needed to what was best for me and get it out. Because of my improvement in heart function I am no longer at the same risk that I once was. So today I had it removed. Today is the first day of the rest of my life and life can go on.
Still doing fine.
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