Neil Clarke

 
It’s been nearly a week and a half since surgery and things are going much better now. I’ve finally managed to sleep through the night (once) and the incision site is healing nicely. General pain levels are down, but still a presence. (Mostly dull. It can get sharper, but I’m learning not to do things or to stop before that can become a problem.) My surgeon has lifted a few of the restrictions and my device continues to function properly.

There’s still a good bit of swelling on the left side of my chest, which I am told is caused by pooled blood. There’s also extensive bruising on my chest and left arm, both of which have added to the discomfort. Weight and movement restrictions will remain on my left arm for a few more weeks. This is to keep me from accidentally pulling the lead (and screw) out of my heart–both of which would be obviously bad. Pain prevents me from even considering those motions.

This procedure was more complicated than the original implantation, but I had been lead to believe that the recovery would be about the same. They were wrong about that. This was worse. It took much longer for me to get back to doing simple things like using a cell phone or computer. Movement caused pain. Pain caused tension. Tension caused new pain in different places. I ended up watching a lot of TV this time instead and was rarely comfortable. I’m so happy that the worst of that is over.

Thank you to everyone that has been writing and wishing me well. I haven’t been in the best of shape to respond to all of you, but know I’ve seen and appreciated your kind words.

 
I went in for surgery yesterday to have my defibrillator and leads removed and replaced. While most of the procedure was outlined in a previous post, there were a few “new to me” details that I didn’t find out about until I got there. To start off, during prep, I was informed that they would have to shave neck to toes due to some of the contingency procedures that could happen if there were any problems. That and hair is an vector for transmitting bacteria or other surprises. Next was that there would be an emergency line on my groin, just in case they needed to send a balloon up through a vein/artery (I’m not entirely remembering this part as it involves needles and my brain skitters a bit when that comes up) just in case they need to stop some internal bleeding. The legs were shaved just in case they needed to borrow some part from my leg to fix something else. Oh and there was another line placed in my arm, again with the needle, and something put down my throat so they could keep an eye on my heart during the procedure. (Fortunately that would be put in after I was unconscious.)

Later, they wheeled me into the operating room. There was at least six people in there and they put me under before the rest of the team arrived. In the past, I’ve been asked to count as they put me under. This time, I was just out before I knew what was going on.

The procedure went perfectly, so none of the contingencies they prepared for were necessary. They started waking me in the OR and it’s pretty much a blur. I know I was coming out (fighting my way out) of a very odd dream, nauseous, and unable to keep my eyes open. The kept me in recovery for perhaps an hour and then wheeled me to my room where my family was waiting for me. I really needed to see them, but I was struggling to stay awake and they hadn’t eaten.

Hospitals are not places to sleep. I slept in one or two hour slices throughout the night, interrupted by blood tests, blood pressure checks, stealing my water away (so I wouldn’t drink after midnight) and shift changes. It was enough to give me back my appetite and the strength to sit in a chair.

In the morning, a tech came to test the device–the same one that I saw during my first hospital visit in December–and we chatted about the new device and what had happened since he last saw me. This one might last 10-13 years before the battery needs to be replaced and it’s a lot louder. I could actually feel the vibrations, but that just might be the sensitivity of the incision area. It’s not big, but it hurts. Dull and regularly pain. For the next 4-6 weeks, I have limitations on my left arm designed to keep me from yanking the new lead out of my heart. The good news is the pain pretty much prevents me from accidentally doing any of the things I’m not supposed to. No lifting things, raising my arm, etc.

Everyone that needed to see me came through before noon, so I was able to get out on time, or early in hospital time. Lisa and Eamonn came to bring me home and I felt every turn. Driving is off the table for a while and left-side seatbelts would be a big mistake. Still, I’m home now and that’s a big improvement.

Thanks to everyone that supported me over the last few weeks, but particularly my family and the amazing team at Morristown Medical Center. Everyone over in Gagnon wing is a pro and so kind.

 
Tomorrow I will head to Morristown Medical Center to have my defibrillator and the accompanying wiring removed and replaced. (Why is outlined in previous posts.) The procedure involves removing the device and then placing a straw-shaped tool around the wires and snaking it into my heart, where the wire is screwed in. Over the last seven years, scar tissue has formed over the screw (this is a feature, not a bug–it holds it more securely in place). The scar tissue will be zapped away by a laser at the end of the tool so they can remove  the lead. Then they’ll remove the tool and wire.

At this point, there is a possibility of some bleeding. Should that happen, the surgeon performing the procedure will have to go in and stop it. Statistically, this shouldn’t happen, but I’m reassured by the fact that the surgeon performing the procedure came highly recommended and should be more than capable of dealing with the situation.

After everything is removed, they will need to run a new wire into my heart, screw it in, and install the new defibrillator in my chest. They’ll glue me shut and that should be it for the day. I’ll be under for the entire procedure and if the past is any indicator, I’ll be barely functional for the rest of the evening.

If everything goes as planned, I will be released sometime on Friday. If there was bleeding, it’s likely they’d keep me a few more days. Either way, I’ll have some restrictions while everything heals and new scar tissue secures the screw more firmly. For example, I won’t be able to hold anything over ten pounds or raise my left arm higher than my elbow. (The risk here is pressure on the wire pulling the screw out of my heart. Great mental image, isn’t it?) The nice thing is that any inclination to do the wrong thing is deterred by the pain. That was the one thing that caught me off-guard after the initial procedure. No one said how much movement would hurt.

No one likes surgery. I’d be a fool to say that I wasn’t worried or concerned even though I know I have an excellent team on my side. I could just leave the wire in there, but given my age, it would almost certainly cause a complication down the line and every year it stays in there, the harder it will be to take out. (At seven, I’m already at an extra level of difficulty.) It’s time to get this over with.

Being a cyborg isn’t all it’s cracked up to be.

A last thank you to everyone that has been so supportive through all this, particularly the few that have reached out to share their own experiences. It’s meant a lot to me.

Talk to you soon.

After consulting with my insurance company, only one of the three surgeon/hospital combinations recommended to me is covered by my plan. Fortunately, it’s also the surgeon who is the closest and at the hospital where I’ve had most of my cardiac care. They came highly recommended and have excellent reviews, so I’m quite happy with this development.

I’m scheduled to meet with him on the 3rd, so this means the holidays are all mine. The nerves are still present–as is a difficulty sleeping most nights–but it’s a least mildly reassuring to know that there’s nothing else that needs to be done immediately. I have a small list of pre-surgery things to do, but nothing that needs to be done today.

A few days after my return from the hospital, my defibrillator once again started beeping. As instructed, I called the Pacemaker/Defibrillator clinic at the hospital and uploaded the data from my device.

They called back fairly quickly and told me to come directly to their office, so I did. They sat me down and activated the wireless connection to my defibrillator and started monitoring the situation. I’ve had this done many times before, but this time multiple people were coming in and discussing what was going on. After a while, the person from Medtronic let me know that the device was now regularly reporting erratic voltages on one of the coils, the same one that has spiked once the prior week. This was an indication that things were getting worse with that coil.

After much discussion, they decided to disable that coil. The device is capable of being fully-functional without it, so it wouldn’t put me at risk, but the doctors wanted to keep me for observation again while they continued to collect more data and discussed things in more detail with Medtronic’s support.

That night, in my hospital room, my electrocardiologist stopped by to give my wife and I an overview of what was going on and the options ahead of me. It was recommended that I have the bad lead removed and replaced. There is an option to leave it, but that carries other risks.

For those that don’t know, the lead is a wire that goes from the device and into my heart. I believe the phrase used seven years ago was “snaked through your artery and screwed into the inside of your heart.” It’s been seven year, so my body has built around that intrusive object, making it rather firmly implanted. I was told that seven years was right at the cusp of when things get more complicated to remove. There are risks that include heart attack during the procedure, the need for open heart surgery (1 in 50), and scarring on the heart, which is higher in my case because at 53, I’m still considered young. This is one of the few cases where my age actually works against me.

It’s going to be like the process and recovery of having the defibrillator implanted in the first place, but with a much longer and more dangerous twist. Given my situation, my doctor is recommending I get a surgeon who has considerable experience with this process. It’s not often this happens, so that isn’t always possible. The hospital I go to is one of the top-rated cardiac hospitals in NJ and someone there was one of three (the others: one in PA and one in NY) that he recommended to me. Unfortunately, the closest isn’t available until sometime in January.

I don’t know if any of these three are covered by my insurance. That’s tomorrow’s assignment. I also don’t know if the other surgeons are available. My device, however, is stable running on one coil. I need it done, but not immediately. I can take the time to do this right and will. I’m thinking it will happen in early January.

I was discharged from the hospital this evening and still trying to process all the frightening little details. I won’t lie, it’s been very stressful and I am worried. This is pretty heavy stuff.

I’m appreciative of the time and effort put in by my doctors and Medtronic so that I can do the necessary prep work (medical and personal) before this happens. I’m also happy to be able to spend the holidays with family instead of in the hospital, which is what would have happened if we couldn’t stabilize the device.

By the way, the latest tech has 18 years of experience. He considered this rare. Not the only he’s seen, but the number was tiny, particularly in comparison to the number of devices he’s seen.