Implantable Cardioverter-Defibrillator
On April 5th, I traded in my lifevest for an ICD. If you had asked me on that day, I would have told you that was the worse experience of my life. Today, as I look back on it, I am not so sure that's how I would describe it, but it was definitely the most painful. As it was explained to me prior to the surgery, I would be sedated but still awake. I was aware of what was going on around me the entire surgery until they tested the device when they finally put me to sleep. I felt every movement and felt as though I was being tortured. I had read the account of others describing their experience and most say exactly what the doctor told me prior to the surgery that they were awake but relaxed. However, after the surgery I was somewhat traumatized and very unhappy.
As a side note, I was told in advance that they would put me to sleep to test the device. I wasn't explained exactly what testing is but I've read that they speed up your heart and the device shocks it back into a normal rhythm. The shock has been described to me as a kick in the chest by a horse which is why they put you to sleep for this part. It is a little scary wondering if the day will come that I experience this but I remind myself that it is better than the alternative.
I spent a few hours in recovery. I had to ask and then wait at least an hour for pain medicine. It was as if being in pain after you had been poked, cut and prodded without much sedative was unheard of in the hospital. This continued even after I was moved to a hospital room. I had to constantly ask for pain medicine and wait, sometimes hours, for a response. After my bedrest ended, I was able to move around which hurt even more. My list of "rules" for recovery were constantly evolving. I was always told not to raise my arm above my shoulder. Now, I was warned not to put it behind my back. Next, I was told I could resume most activities after a few days, but I was not told that driving was not one of them. I was advised not to drive for two weeks. I was reminded not to pick up more than 5-10lbs and I was given instructions on how to care for the incision.
I was discharged the next morning. The incision and the area around it was swollen and very sensitive. The incision was covered with purple surgical glue. I needed to take pain medicine for a few days after being discharged and the pain eventually lessened to more of an ache. My follow up appointment was two weeks later. I drove myself (this was my first time driving) to the doctor's office because remember, I was told that I could drive after two weeks. When I arrived, we discussed how things were going, I was reminded of what I couldn't do like drive for four weeks. I notified the nurse that I was told two weeks in the hospital and I drove myself to their office. She said, "Well you can drive but not more than 10 miles and don't use your left arm." The evolving guidelines are my favorite.
Next they checked the ICD to make sure it was still working properly and that the lead was still attached. I am not sure if I explained this before, but the lead comes from the device and is attached to the heart. All of the restrictions to movement is to keep the lead in place until scar tissue forms around the lead and it holds it in place. I was glad to hear that my ICD was still working properly. It is very difficult with a 6 month old to adhere to all of their rules. Its not like Lovebug knows what she is doing when she places her head or swings her arm and hits me directly on my chest near the ICD.
I want to summarize a few points from my experience for those who are needing to have their own ICD implanted in the future. First, you should ask for a printed list of restrictions prior to the surgery. This will give you the ability to plan your schedule appropriately and you will know how much help you will need when you return home. Also, the last thing you want is to have to have the lead replaced which would result in having another procedure as well as starting the recovery time over again. Second, I would suggest talking to your doctor about being sedated. What will they do during the surgery if you are in pain? Ask what is normal and what is not so that if the pain becomes intolerable, there is a plan of action. I think that the drugs didn't work for me and I should have insisted that something be done. However, when you are in the moment it is not as easy to be an advocate for yourself as it is beforehand. So those are my lessons learned and hopefully that will keep others from having the same experience.
