Once again, I’m putting off that post I started a while back. Just in case you’re wondering…it’s about FOOD! LOL However, after reading Cathy and Mac’s posts this week, it got me thinking (that’s always a bad sign) because their posts touched on a couple of things that hit really close to home over the past 30 days.
Ever heard of SADS? What about teens dropping dead on a playing field doing athletics? That’s SADS or sudden arrhythmia death syndrome. There are numerous causes, but one specific cause is Long QT, which is a disturbance in the heart’s electrical system. Layman’s terms — the two chambers of your heart alternate the task of pumping blood through your body. When one chamber finishes its pumping action it signals the other chamber to beat (pump blood) with an electrical charge. The difference in time between when a charge is sent between the chambers is reflected in one’s QT on an electrocardiogram (EKG). When the electrical charge doesn’t go off the heart stops. Hence sudden death.
The Movie “John Q” Got It Right
There are different types of Long QT. Some are easily detected by symptoms, others can only be determined through genetic testing. Here’s where insurance is a real pain in the ass. Natalie said it best in her comments. Insurance companies are evil, greedy monsters. Getting preauthorization is understandable. But when they question you, your family doc and even a specialist as to why you need a test it’s frustrating. They act like they know more about what’s good for you than your doctor. Umm..hello?? Did I miss an appointment with you for a one-on-one evaluation? So tell me, what part of “pay $900 for a lab test now, or pay millions when I die and my DH sues your pants off” don’t you understand?
Ok, after a fight the test is approved. You’d think it would be easier to get the girls tested? Nope, we’ve been rejected three times now. The doctors might have to arbitrarily authorize surgery for Oldest and Baby just to err on the side of caution. Why would these insurance idiots refuse a test when the mother is POSITIVE? These people would drive a Vulcan into Pon Farr even if their mating cycle weren’t for another five years.
With blood drawn and out for testing, I buried my head in the sand trying to forget my 50/50 odds of having one of the five Long QT genes. Do I sleep? Nope, I’m tired and afraid. Do you think I spend my time writing? Nope, I’m too depressed because I’m tired. I don’t write, I don’t sleep, but I DO eat chocolate. Four or five pounds of milk chocolate maple creams in the past month and a half. Yeah, if the gene doesn’t kill me, chocolate will. But then death by chocolate might be a good thing. Of course if I live, I have to go back on a diet! Grrr.
The genetic results come back. Bad news. I have Long QT. But WAIT, I don’t just have the ordinary Long QT. I have Long QT3, which is the deadliest killer of them all. It makes your heart stop in your sleep and unless someone is monitoring you. Bam! The party’s over. The fat lady has sung and left the opera house. If you’re not an opera fan, then that’s probably not such a bad thing. Naturally, the good news doesn’t stop there. Long QT3 isn’t treatable with oral medication. So what are my options you ask?
Door Number 1, Door Number 1 or Door Number 1
Well, there’s this little invention someone created back in the late 60s called a pacemaker. The doctor began explain the procedure and got three sentences out about how they would insert it into my chest before I held up my hand and said, “I think I’m gonna be sick.” Minutes later, the DH is scheduling my surgery while I sit next to him in a numb state. I knew it was a possibility, I just didn’t really think it would come down to the wire. I thought I was being a drama queen. I really thought I was over-reacting like I always do. Turns out I wasn’t. For an Alpha female, I was quite malleable for a few hours. The DH actually lost a BIG window of opportunity there!
Instead of taking advantage, the DH insisted I have surgery right away. He knew if I waited, I’d try to talk my way out of the surgery. In fact, I tried that very thing up to the last minute. And by last minute, I mean I was lying on that cold, steel table with tears rolling down my cheeks ready to scream out that I didn’t want to go through with it. But then the nurses started asking me about my girls, and I knew I couldn’t back out. The risk of dying without the pacemaker installed was greater than my dying from the operation. So a little more than 72 hours after my doctor’s visit, I had bionic equipment installed. It took less time to install that pacemaker than when we got our new garage door two weeks ago today! What is it with me and Thursdays? LOL I now have a 4-ounce mechanism the size of a credit care inside me that feels like it weighs close to a pound. While the installation procedure is relatively simple, the emotional aspects are far more complex.
With the surgery over, I can joke about how I prepared a notarized medical directive (with specific instructions for religious types and politians), wrote special letters to each of my daughters and my husband. I organized my affairs with friends, my agent and publishers. I planned out my funeral. My funeral would have RAWKED with songs like Gloria Gaynor’s I Will Survive (there’s an oxymoron! LOL) and Elton John’s Funeral for a Friend. I expressed my wish for a Xena-style funeral pyre (ok, so I know that won’t happen in Virginia, but a girl can dream!) but I settled with knowing my ashes would be spread in Douthat State Park. Finally, I dictated my funeral be a party. A big, loud party, just like me. Oh and my request that folks send $45-75 to the SADS organization instead of buying a floral arrangement that would die just like me.
In truth, there’s nothing like looking death in the eye to make you rethink your priorities. But I did more than just look death in the eye. Technically I was dead at several different points during the operation for up to ten seconds each time. They have to test the pacemaker to make sure it’s working. The only way to do that is kill me off a few seconds each time. Wasn’t it Natalie who recently had a topic entitled Killing Your Darlings? I can sooo relate here. ROFL I’m just wondering if my psychic powers will be enhanced by these death-defying moments. (And YES, I’m serious!)
The next big hurdle will be next week when we take the girls to an electro-physiologist. Surgery may or may not be in the picture for Oldest, while Baby might be safe for the moment. So I’m still not out of the woods emotionally. How do parents with sick and dying children manage? It’s scary and heart wrenching. You have stay cheerful outside when inside you’re falling apart.
Home For The Holidays
With all that explained, I’m going to kick back to Mac’s post about the hustle and bustle of the holidays. For the last few years, I’ve not gotten so frantic over the holidays. I’ve decided it’s okay if I use the Pillsbury pie dough as opposed to making mine from scratch. This year more than in years past, I know it’s going to be okay if supper is a little late getting to the table. I’m with my family. The choices we make in life can never be confirmed as the right ones; primarily because we don’t know what the outcome would have been if we’d made a different choice. What I do know is this. Even if it means I have to give up my beloved shoulder-restraint rollercoasters that do loop-de-loops at blistering speeds, I made the right choice to go bionic. And trust me; you can not imagine how earth shattering it was to be told I couldn’t ride Apollo’s Chariot again. *weeping* Rollercoasters are life’s blood to me. I LIVE for air time! (Whispering here so the doc doesn’t chide me) ….the pacemaker’s rep said I might be able to try to ride in a year. WOOT!! Now I have to convince the DH to let me ride. *grin* Remember when I said he lost a window of opportunity? He didn’t get my promise that I wouldn’t try to ride again!! LOL
Cathy, Natalie and Mac (my GabWagon.com cohorts) — thank you so much for your thoughtful, caring support through all this. I’m blessed and honored to count you among my friends. When it’s all said and done, I at least have a new experience to draw from for my writing! However I do have to get accustomed to being the bionic woman. I just wish the part came with the body of a drop-dead gorgeous redhead with green eyes and a body to die for. Some days I just can’t catch a break. *grin*