Somebody Get That Girl A Sandwich!

Now, the doctor didn’t say those exact words. Some guy on Captain America did, only Captain America wasn’t a girl. Point is … “Get that girl a sandwich” sums up Dr. Wilkoff’s advice. Let me explain:

Biggest news is that I’m not having heart surgery (!!!!), because:

ONE: There are lots of features on my pacemaker. So far, two of those features don’t bode well with my situation. One feature has already been tweaked back home, which improves some of my symptoms. The other was tweaked today, and the hope is that it will hopefully get rid of the remaining symptoms. The feature that was tweaked today should’ve been set to a 2.0 voltage, but was set at 5.0 voltage. So they lowered the voltage, in the hopes that it’s what could be causing the zapping sensation that I’ve had since surgery two years ago. As Doctor W said … let’s just do the next logical thing, which is to tweak a pacemaker setting that’s obviously not working well.

TWO: Because my BMI is 16, the Doc thinks I may very well be feeling the electricity from the leads simply because I’m too skinny and because I’m malnourished, which tends to make your muscles sensitive and twitchy and not operate well in general. Shaun and I had wondered if maybe the reason I’ve feeling the electricity could be physiological, and now we know that’s at least possible. Time will tell if it’s physiological, or due to high voltage.

THREE: The benefits of a lead extraction surgery do not outweigh the risk – at least not my situation. In essence, he’s willing to be risky, but he said he’d have to have something to offer me in return, and he’s got nothin’. I don’t have reserves enough to heal from a surgery like that – at least not well – and the benefits of doing the surgery are just not great enough to risk life itself.

We talked about the idea of whether it’s safer to do the lead extraction surgery now rather than when I and the leads are older. But he did not agree that it’s necessarily better, especially if I can “figure a way to gain some weight” and fix my malnutrition in the meantime. The leads are already super old, and I am super not well. So if we can get me well, and there comes a day where the surgery can’t be put off anymore, then at least I would be in a better position to handle the recovery.

Also, technology is fast growing and ever changing. They have pacemakers now the size of a .22 cartridge that they insert through your leg. But the problem is, I need a dual lead pacemaker, and these new itty bitty pacemakers only come in single lead. BUT – who knows what the future holds? He seemed pretty confident that if I can make it through with my current pacemaker until the battery dies (about nine years), it’s possible technology will progress and the itty bitty pacemakers would be dual lead by then.

‘Twas funny when he brought out one of those tiny pacemakers from his pocket, and placed it in my hand.

“You just carry the pacers of the future around in your pocket all day, eh?” I asked.

His face lit up like a happy Halloween pumpkin, and he said “This is what I do!”

Anyway I held the itty bitty pacer in the palm of my hand and stared at it. It’s amazingly small, with prongs that stick out of it that look like cricket legs.

“I’ll definitely take one of those,” I said.

It would be awesome to get rid of this clunky, oversized piece of machinery in my chest. I’m grateful for it, and weary of it all at the same time. I’m dependent on it for life. How could I not love it? At the same time, after four of them, two that have caused me much heartache and stress and money, I’m ready for something new and improved and … small. Real small. Cheap is something I’ll probably never get.

Last but not least, he really would like me to pursue ways to get some nutrition. When I told him what my diet has consisted of for the last decade or so, he was fairly horrified. I tried to be excited about my newly tolerated carrot juice, but he wasn’t that impressed. A body can’t live on chicken, yogurt, and carrot juice for years on end, and he knows it. So … he suggested either get in contact with someone who is open to administering parenteral feedings (tube feedings), either at the Cleveland Clinic, or possibly the University Hospital close to us. We will do some research on that when we return home.

It was amazing to me that he even acknowledged my gastroparesis/celiac/malnourishment as a problem. I’ve been trying to get someone, anyone, to address these issues, but gastroparesis is such a difficult disease. It’s called idiopathic gastroparesis for a reason: nobody knows what causes it. Therefore, nobody knows what to do about it. I’m not looking for a cure, per se. Just a way to work around the problem, and find a way to get me some decent, well rounded nutrition.

In closing, I am relieved (SO relieved), as I was not comfortable undergoing a serious heart surgery, due to the state of my general health. So when he acknowledged my concern with me undergoing this surgery as being totally legit and even an overriding factor, I took it as an answer to prayer. Now I’m not forced to make an agonizing decision as to whether to have the surgery, because Doctor W made it for me, and that’s a huge answer to my prayers (my docs back home told me it would come down to what I wanted – dangerous surgery now or more dangerous surgery later). And now that I have a big wig doctor from Cleveland suggesting I find a way to get some nutritional help, I have some leverage when I go about trying to make that happen.

Doctor W said it all when he said “Right now, the heart problems are not your biggest problems. Go figure a way to beef up, and maybe we will see you at a later date.”

So now you can pray for whoever God might put in my path to treat the malnutrition. Just what you wanted, huh?

Thanks for following. Thanks more for praying. I am ever so tired of talking about myself, and I’m looking forward to blogging about something besides me, myself, and I. I mean, it’s been real. It’s been fun. But it ain’t been real fun!