lucas’s & phil’s health update

In ALL, ILLNESS by Stephanie Klein26 Comments

We’re assuming our little guy is feelin’ fine on the 1 and 9. Lucas had a spine and brain MRI, with and without contrast recently, and we’re still waiting to review the results with his neurosurgeon. I have to believe that no news is rockstar news. We’ve scheduled a followup meeting, December 7 (Lucas’s birthday), where the doctor will review the results with us, formally. I’m assuming if they’d seen anything harrowing, we’d have been contacted straight away.

october twins stephanie klein web

As for Phil’s heart…we’ve received phenomenal news about his ejection fraction. Now, with his new ICD (Pacemaker with a built-in defibrillator that will shock his heart if it ever gives out), and bi-ventrical lead, his ejection fraction has climbed from 15% to 50%. Which is remarkable, for sure. He’s paced 100% of the time, meaning that machine in his body is working full-time, and without it… it ain’t good. Since it’s working 24/7, the battery will run out eventually, and he’ll need a replacement, but that’s not a big deal, pretty standard. The unfortunate news is that Phil’s still in Atrial Fibrillation 45% of the time. That’s how we got into this whole mess.

So basically, Phil’s on Coumadin, Coureg, Sotalol, Lisinoprol, Simvastatin, and baby asprin. Some twice a day, some just once. But now that Phil’s ejection fraction has improved, he asked if he needed to remain on so many drugs.

"Let me put it this way," his surgeon said, "If I said you had cancer but could take these pills to give you another 10/20 years, would you take ’em all?"

"Of course."

"Well, good, because what you’ve got is worse than cancer because you can die at any moment."

"Sudden death," by far, the most daunting symptom of Phil’s cardiomyopothy. What’s next? He’ll likely need another ablation, because Atrial Fibrillation isn’t a good thing long term, and the longer Atrial fibrillation exists, the larger the heart grows and the harder it becomes to repair. But where we are now, with this ejection fraction climb, we’re happy and celebrating what’s before us now. Without question I’ll be giving thanks this Thursday for the health of all my boys.

A YEAR AGO: I’m a Meredith Brooks Song
2 YEARS AGO: Craps
5 YEARS AGO: Help, I Need Somebody.

Comments

  1. That’s such wonderful news, Stephanie! Congratulations and Happy Thanksgiving to you, Phil, and the beans!

  2. “worse than cancer”

    Wow, that’s not something you want to hear.
    Congratulations on your good news though! Have a happy holiday

  3. I just happened to stumble across your website, and I do have to say… Congratulations on the great news with the kids! I am glad that you will be celebrating the true meaning of Thanksgiving this year! Hope you and your fam have a awesome holiday season! :)

  4. Reading this right before Thursday (THANKSGIVING!) puts a lot into perspective. Thank you.

    G’luck to you and your boys.

  5. Hey Stephanie!

    My dad had three heart surgeries for his atrial fibrillation last year. The first two were straight-up ablations, but the third was open-heart. They were going to try ablations for the third time, but his doctor suggested that instead of burning the heart, they cut and re-sew so that the scar tissue would actually form. (That was the problem before, the heart healed and never made any scar tissue.)

    Of course everyone is different, but I can’t tell you how upset I was my parents told me they were even considering having a third ablation when the first two hadn’t produced any results, and my dad had gone back into a-fib within hours of the procedure.

    My dad’s last surgery was performed by the lead cardiac surgeon at Stanford hospital (in Palo Alto, Ca) and he did an amazing job. The point is that it’s always worth getting a second opinion if the procedure you’re undergoing isn’t working like it should, instead of just hoping it will work *this time.*

    I’m keeping you and Phil in my thoughts as you deal with this extremely stressful disorder.

  6. The good news is certainly something to be thankful for. Phil’s condition sounds terrifying for you both. I hope each new days brings more optimism and even better news.

  7. That boy is just gorgeous. Gorgeous.
    Both your kids are, but that’s a striking photo.
    Very pleased to hear this news about Phil and wondered how you are feeling.

  8. Stephanie, glad to hear about the good news for your guys. Sounds like there is a lot to be thankful for in your family. Continued support and prayers to you and your family.
    Also loving the new look on the site!

  9. MY son has a shunt since childhood. I remember waiting for results of MRI & CAT scans. I never waited for appointments, I harassed the doc for info. I don’t know how you stand it.

  10. Stephanie What good news for Thanksgiving! Phil’s amazing EF must have thrilled you both! I agree that the fact that the neuro surgeon isn’t seeing you immediately is a good sign!

    Have a wonderful Thanksgiving with your beans!

  11. WOO-HOO!!

    I’m sure you’re not ready to stop holding your breath just yet, but it is nice to have a little bit of a break. – I’ve been going through major family health issues lately and am just now starting to breathe again.

  12. I’ve written a lot before about my health similarities with Phil, but in the last couple of months I’ve been in the hospital for 7 weeks with various and sundry crazy heart things that have led to me being in arterial fibrillation 100% of the time with ventricular fib during any exercise. My ICD is pacing all the time, too, and has been adjusted and readjusted so many times it’s just crazy. I’ve had three cardioversions trying to get regular sinus but they haven’t worked. I’m on coumadin too, along with 17 other meds. It sucks, SUCKS.

    So I really feel for Phil knowing how it feels to be exhausted and weak all the time. If you can, tell him that I TOTALLY get it and I hope we both beat this god damned disease.

    1. Author

      ugh, so sorry to hear you’re going through that. Really. Rooting for you over here.

      The weird thing for Phil is that he’s never been exhausted or weak. He’s completely asymptomatic, which I guess is both a good and bad thing, because you feel 100% fine, you assume it has to all be bullshit, and you don’t really realize the risks. Either way, it’s not so pretty, but there is absolutely plenty of hope. Chocolate chip cookies seem to help :)

  13. Very interesting blog post thank you for sharing I just added your blog to my bookmarks and will be back :) By the way this is a little off topic but I really like your blogs layout.

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