abnormally normal

In ALL, ILLNESS by Stephanie Klein50 Comments

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"Hi, is this Philip?"
"Yes, hi doctor, thanks for getting back to me."
"Sure, sure, how are you?"
"I don’t know; how am I?"

The news is that there is no news. "I guess you’re just abnormally normal because everything came back fine. We’re just waiting on one test that doesn’t come back for another 24-48 hours. Electron Microscopy."

It’s wonderful news, but still. I mean, I’m thrilled there was no bad news, I am. But to find nothing? I mean, he was in A-fib with complete heart block and very low velocity on his heart scans, etc. It makes no sense. What caused all this? Nothing? And there’s the matter of Phil’s father, who died of heart complications at age thirty-two. They just didn’t know then what they do now… and even now, they’re still learning so much. I still can’t help but be nervous about my children, too.

We’re waiting for electron microscopy results, still, and Phil has more doctor appointments and still cannot use his arm much. Can’t lift the kids for a month, at least, but it doesn’t stop the monsters from crawling all over their abnormally normal papa. I brought up to the doctor the possibility of "Desmin myopathy," randomly really, but the doctor said no stains were done because all the biopsies came back normal, so nothing more was needed. All his blood work came back fine too. They did a 24 hr. urine collection, and he’s not leaking proteins, all normal. I’m at a good hmph, and don’t know whether to just leave it alone or to continue (reasonably) until we get an answer or some kind of explanation that makes a modicum of sense. We at least, in the words of a friend (who’s also a cardiologist) need someone to prove to us that he DOESN’T have a cardiomyopathy.

Obviously, we’re not looking to do anything super invasive unless it’s absolutely necessary, which it doesn’t seem to be right now. Not today. Not this weekend. But more testing does have to be done. It’s confusing, but maybe, like with what happened to Lucas, we might never know. Still, Phil has a pacemaker and follow up appointments, but it feels like there might be some celebratory rose wine in our future. At least for tonight. Thank you again, to everyone, for all your comments, emails, thoughts, and quite frankly, for being here with me through it. I cannot thank you enough. I’ll post the follow-up (deep within the cells themselves) results in the next 48 hours when we get ’em. Then we’ll work on figuring out the next steps in all of this, including genetic testing, aside from monitoring Phil’s heart very closely over the next few months and years.

Comments

  1. Fantastic that there's nothing to pin those thoughts and fears to. Frustrating that there's nothing to pin those thoughts and fears to. BUT, in this case, its seems like no bad news is REALLY good news. If he's stabilized with the pacemaker and the docs feel like he's "ok", then I'm so happy that you can enjoy that rose wine shortly. :)

    I feel so good for you!! Thank you for sharing with us so quickly. Hugs!

  2. That's great that all these types are coming back normal. I hope you find the cause, just to put your minds at ease. Best thoughts to you all.

  3. Sure, it's scary to have no answers, but it beats the hell out of hearing something terrible. Enjoy life; drink the rosé; treat yourselves to whatever; and just pick up where you left off before the cardiotrauma. Mazel Tov!

  4. Thanks for the update and sharing so much with us all. I am relieved to know that what ever it is (if anything) is not so serious for now. Yay! Have a glass of wine and enjoy the news or the no news. Let go of it all even if it is just for tonight. So happy for you both. You both will remain in my thoughts. Hugs for you all including the Beans.

  5. Nothing is good news, but, man, no sense of closure, no clear cut plan of attack on how to fix what's wrong. That's got to be frustrating. But, yay!, nothing is good!

  6. Great news. But as someone who has lived at MGH (Man's Greatest Hospital) & who survived husband's 4-way bypass, etc., etc., plus an ablation that didn't work for me, watch & wait one day at a time. Learn to indulge in a moderate diet (little, no caffeine; low cholesterol; but go for moderate amts of red wine & even chocolate). Walk a lot; laugh more, and avoid stressful situations. Things will improve. Trust me.

  7. I am just catching up on all this – WOW. I am just – wow. I think I've got an email brewing to write to you. I'm a girl who's watched her husband endure two battles with a cancer he should never have at this age; the 2nd time around, all we got was "well we've never really seen this before…" OH man. an email. coming. don't worry. hurray for good news right now, but boy do I know how you feel…confused? hesitantly joyful? stunned? relieved yet totally disbelieving? yeah.

  8. Great news…and yes frustrating…but I am so happy that things are good so far, and we'll keep you guys in our thoughts until you know for sure what's going on!

  9. Hurray – I'm so happy that they didn't find anything, even though I know that's still very frustrating. Enjoy it for now – there's always going to be something else waiting to pop up and have to be dealt with (optimistic attitude, I know) so enjoy the lull, or as much of one as you can get. Drink the wine and celebrate!

  10. Stephanie and Phil,

    What great news! Still keeping you all in my thoughts and hope that no bad news comes!
    Take a deep breath, give each other a huge hug, and celebrate!

  11. Glad to hear that all seems ok. I know it's frustrating not to have answers…My husband recently went through something like that. You just want to know WHY so you can be proactive (if possible) and there is no f'ing answer. But, it IS better than bad news, so chill the rose wine for that celebration.

  12. WOW!!! What fantastic news. WOW, all normal?

    I am so happy for you both :)

    Keeping you in my prayers.

    Jen

  13. I am going to be happy and optimistic for you right now. So far so good and hopefully things will be on an even keel for you all for a long time to come.

  14. Hey Guys,
    Hang in there. Take a deep breath and just live in the now.
    It's easier said than done but try make it your daily mantra…we are rooting for you Phil.

  15. I'm so happy for you both! Now relax, drink something chilled and stay in the a/c. This heat is brutal…

  16. Stephanie Klein.

    This is terrific news. It means you can have many more moments that are good and clean and messy and ugly..but all with P. Best, best, best.

  17. Stephanie,
    Glad to hear that things are coming back all right. I was thinking about your reading in LA at Book Soup, and seeing Phil standing by the door. I kept thinking how weird it was that I'd never met him yet knew a little about him through your blog… it made reading about this week a little bit more 'real'. And yes, we're here with you. Take care.

  18. How is Phil actually feeling? I am assuming he had some symptoms before all these tests and procedures were done. Are those symptoms now gone?
    Sometimes the tests can show weird results; I think the latest news are very positive and wouldn't recommend worrying about additional tests unless Phil's symptoms reoccur.

    Good luck with everything! Hang in there!

    FROM SK: Phil NEVER had any symptoms, nor does he have any symptoms now. He feels exactly as he had before all this. Again, you have to remember that Phil's father died at 32 of heart complications, and it would be irresponsible of us not to look into this further given that knowledge. Thanks for the good cheer. I'm still totally stressed, but the good news is… whatever he has, he's been walking around with it, feeling fine. At least NOW he's still walking around with it, but we know about it. Things were done to help, and we'll keep an eye on it, and hopefully figure out what's going on.

  19. Yay! I'm digging the good news, and my thoughts are with you and your beans — all three of them. Take care of yourself and your family, Stephanie. We're all rooting for you!

  20. >Phil NEVER had any symptoms, nor does he have any symptoms now.

    His asymptomatic body is telling him he's got nothing to worry about, and now the doctors and medical tests have–mostly–arrived at the same conclusion.

    Break out the champagne, because this saga is nearing its conclusion.

    You've got a wonderful, devoted husband. Episodes like the "rubber band ring substitute" are an inspiration to your married male readers (like me). You've both shown exceptional courage, too.

    But now it's time to celebrate–with real pizza for a change.

  21. Celebrate today. It's better to find out that a whole bunch of things are normal than to find out a whole bunch of things are wrong. Atleast you have reduced the list of things that can ail!

  22. Hello Stephanie, so pleased to hear Phil's results today were good. I think you are wise to have follow up consultations and wish Phil all the very best. Take care.

  23. Good news! I hope you can have a nice relaxing weekend, eat some good food, drink a little wine, and enjoy each other and your children.

  24. Well, that's great news. It's a relief, but a frustrating what now kind of relief just as Lucas' was. But it still qualifies as excellent news! Now go chiffonade something in celebration.

  25. So glad to hear the good news. You two must feel exhausted after this week of waiting. Definitely relax with some wine.

  26. I liked the recommendation for more wine, chocolate and laughter.
    So glad that things are moving in a positive direction and that you guys can relax (a bit) and enjoy your weekend :)

  27. Thank you for sharing this great news. I am so glad to hear also that Phil is feeling fine. Surgeries take a lot on your body and your emotions. Btw, I too love the rubber band story. Do you still have that rubber band? If it made it through all the hospital (necessary) grossness, perhaps you could frame it?

    Phil is a good egg.

  28. Thank you for so faithfully keeping us posted. This is wonderful news and we'll keep praying for the health of your family!

  29. Great news!!!!! Take a moment to just let it all sink and a breathe a huge sigh of relief.

    All of you will still be in my thoughts and prayes.

  30. So glad to hear good news!!! Abnormally normal…heh. I think I have that.

    The no clear answer thing drives me batty too, but I say celebrate!

  31. Hi Stephanie
    You don't know me but I have been infrequently visiting your site since you started your blog long, long ago. I just clicked on the other week and was saddened to learn of your husband's health concerns. You are in my thoughts and my prayers are with you, your little ones and with Phil for a clean bill of health.
    Take care,
    Faith
    Families Against Breed Bans

  32. Hoping the best for you and family. I have done the Afib route myself. Still don't know what caused mine either. Have you thought about bringing Phil to the World Renowned Texas Medical Center in Houston? I lived in Austin also and now in Houston and thank my lucky stars I live here with the medical facilities we have. Check out St. Lukes Houston or Methodist. I can not stress enough how excellent they are. Best to you.

  33. I hope so much with you that Phil's normal test results are the real deal. Thinking of and praying for you all.

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