I took my own advice, I asked for what I wanted.

So, the doctors all agree on one thing, my device is out of the pocket, it is causing pain and could eventually cause nerve damage and it's putting undo stress on the lead that has been recalled. As such, the doctors all agree that it is medically necessary to go back in and move the ICD back into place. While in there, time to pull that re-called lead and replace it with one that isn’t at a higher risk of fracture.

What they don’t agree on is the placement. Since I have lost 34 pounds, the cushion I had that covered the device has significantly thinned out. My activities may have put some stress on the device too, I am not sure. But either way the subcutaneous placement I had before isn’t working anymore.

The first EP, we will call him Dr. No, said that he would move the device to the same subcutaneous placement of before. Even though I pointed out that it would show and would be quite disturbing to me. Dr. No also said he wouldn’t be able to use the vertical incision like I had before, but instead would use the more traditional horizontal incision. I pointed out what I thought was obvious, I am not a small-chested girl and the horizontal incisions are problematic when you got that much weight pulling on the scar tissue. It tends to stretch and pull the tissue resulting in a large obvious scar. He said no, he couldn’t work with the vertical scar. Also, I asked him about moving the device to a sub-pectoral placement so that I wouldn’t have to worry about dislodging it again and when I lose the next 25 pounds it wouldn’t show. Guess what he said, no.
I was pretty bummed out. I wanted that bad lead out more than I can really say, but I didn’t want to have an ugly lump on my chest. I kept thinking that it was easy for Dr. No to say no. At the end of the day, he got to go home and forget about it. I couldn’t. I wouldn’t be able to ever forget about it. Every time I took off my shirt, I would remember.

After I fretted about it for awhile, I brought it up at one of our meetings. I mentioned that felt that Dr. No wasn’t even considering my lifestyle or situation, he was just doing what he has always done. Then I wondered what my first EP (we’ll call him Dr. Rock star) would do.

I don’t know why I didn’t think of it sooner, why not just go see Dr. Rock star. I called and had an appointment within the week. I went in and he agreed with the facts that the device has moved significantly and that the lead should come out at the same time. However, he was completely open to working with the vertical scar and that based on my lifestyle and thinning body, a sub-pec would be the best placement for me. It pays to ask for what you want and it pays to check with more than one doctor. In the bay area, we are very lucky to have the options of many great doctors, it would be crazy not to look around for the one that takes your needs into consideration.

Sex, race, and ICDs

Two studies published last year in The Journal of the American Medical Association (JAMA) found some serious disparities between men and women regarding implant rates of ICDs for primary prevention of sudden death.

One study (JAMA. 2007;298(13):1517-1524) found that among Medicare patients, men were about 2-3 times more likely than women to receive an implantable cardioverter-defibrillator (ICD) for the prevention of sudden cardiac death.

The second study (JAMA. 2007;298(13):1525-1532) concluded that the rate of ICD use among eligible black female patients (28.2 percent) were significantly lower than that of white male patients (43.6 percent).

We need to understand why women (and particularly African-American women) are less likely to receive a needed ICD.

It's hard to believe that sex and race still influence a doctor's decision on whether to offer an ICD to an eligible patient.



 

And I can fly

As my posts show, I have been trying to get on with life and not let the ICD in my chest stop me from having fun.

This hasn't been easy. While I am generally an optimistic person, there have been times that things seemed bleak. Last year was a tough one for me and it took some time to pull out. I was lucky, I had some people around me that cared. I had support that really came through.

This year has been much better. I have come to terms with the fact that there are somethings I can control and some things I can't. At work, I got a better job for a boss that knows what he is doing. At home, I got those fixer upper projects started and well, those still suck a little but at least I am trying. And as for my health, I have things I can control and things that I just can't. I can control my weight and activity level. I can't control the way my heart is formed. I can't control the way the heart cells conduct the electrical signals, or don't conduct. And I can't control when this ICD lights up.

By focusing on the things I can control, I have lost 32 pounds and I have a target of 28 more. I have increased my activities and feel great. Also by focusing on these things, I find that the spector of the things I can't control seem to fade into the background.

That fact has allowed me to push myself a little more. The more I get out and do, the more I feel secure that I can get out and do it. And now, I can fly... well, indoor skydive anyway. It was fun, and I will most likely do it again. Then, I guess I will figure out what I will tackle next... heck, maybe I will even try walking up the stairs someday.

Lead Encapsulation

Every day, as I go to work, I walk by trees that have grown into the metal enclosure that was originally put there to protect them. The metal structures were never adjusted or removed. So, the tree trunks and metal have melded. As the trees grow, the metal rods continue to be enveloped by them. The metal can no longer be removed.

The picture is a bit unsettling, but the trees look quite healthy and keep on living seemingly unaware of their predicament.

I want to be like those trees.

Life with an ICD

When I was first diagnosed with HCM and told in the same visit that I would need to get an ICD I thought life would be over. All I could think of was what I wouldn’t be able to do. I had an image of weak, sick people trying to avoid anything strenuous. Not that I was a health club maniac or anything, but I love going out in the middle of nowhere to camp, enjoy a nice scuba diving or hike where cars can’t go... basically anything outside and near water was what made me happy. It made all those days at work worth it. It is two years later now and I am amazed at what I can still do.

Since my implant, I have gone ocean kayaking on the Sea of Cortez, snorkeling in Hawaii, camping every place I could and even got in some pheasant hunting. Just this last weekend, I went white water rafting. I know it doesn’t seem like much, but when you go from being afraid to get up off the couch to actively seeking outdoor activities, it is a major mind shift.

The bottom line is this… being the recipient of an ICD does not end your life, it just changes it a little. Your heart condition itself may have more of an impact on what you do, but the device doesn’t.

I think now that I can do most things, just with a little modification. For example, I can’t jump out of airplanes but I am going to go indoor skydiving in a couple of weeks. I can’t scuba dive at depths lower than 45 feet (device limitation, not heart) but in February, I will be heading to the Florida keys to do some shallow but scenic dives in the marine reserves there. I can’t go on roller coasters any more, but that is ok… I have been on some great ones in my life. So, life is not over. It is adjusted a bit, but definitely not over.