worst case scenario

In ALL, ILLNESS by Stephanie Klein50 Comments

 mg 4968

Anyone who exhales a second of "See, what you’re dealing with now is KARMA! Ha, you really are a Greek Tragedy!" needs a big ol’ hug. Not from me, but surely, they need more love in their life. The people who wish poor health on anyone and question if it’s okay to wish or say such mean things should really stop to consider why they have room or energy in their lives to devote to wishing harm on others–or to snickering in schadenfreude, almost rejoicing (while apologizing) in the delight of someone else’s pain. You obviously don’t know what it is to experience pain, real, to-the-bone pain. And I hope you never do.

To everyone else, thank you so much for the wishes, the emails, the comments. They help. Phil has been reading them, and amazingly, Phil’s friends have been reading them, calling me to say, "the comments on your site really made me feel hopeful and better about the whole situation, since I have no experience with cardio stuff." So thank you. Even the latest readers, the ones who heard me, breathlessly, join on the radio today, LIVE on NPR, Talk of the Nation, who already have reached out with well wishes. I did my best to keep on topic, but I was obviously distracted about the latest…

So, here it is: They did not operate today. Instead, they made us transfer hospitals from St. David’s to Seton Medical. Why, exactly? "Oh, because at St. David’s we don’t do heart transplants." How did the word "transplant" come into play? I thought we were talking old-man contraptions with a cute little card you tuck in your wallet that gives you front-of-the-line access at the airport. "Well, we need to do a heart biopsy, and the ones who do that are the doctors who handle transplants." So Phil giddy-upped onto a gurney and took a ride in the wambulance, while I made my way out of the visitor parking maze cursing like a fishwife in heat.

His surgery has been postponed. The heart transplant doctor needed to speak with us about the biopsy before actually scheduling it… to see if we actually wanted to go through with it. "Look, I don’t like what I’m seeing here," she said warmly, "but I’m also not just going in there until you know the risks. So, in a transplant patient, to do a biopsy of the heart to see if they’re rejecting it, isn’t a big deal, but with you, Phil, the risk is five-fold. And it’s by no means a simple, little procedure. If you want, I can go in there and biopsy, but when I do that, the heart can tear and make a hole, which, well, isn’t good. See, the heart is like fajitas."

No, please tell me you didn’t just say that.

"You know how a flank steak can just tear? Well, essentially, I’m going in there and taking bites out of your heart. I’m telling you all of this because you need to know the risks, and some people would rather not have the biopsies. They’d rather not know what’s going on."

Why, exactly are biopsies needed? "Because given all you have: atrial-fibrillation, complete (stage three) heart block, and most concerning in all of this a very low velocity and very erratic heart trace, something is wrong and very abnormal. Something bigger is probably going on. Now usually, you have symptoms. You come in complaining about your gallbladder or something, and we narrow it down to the heart, but everything about this situation is, well, something we’ve never seen before."

All I can think when I hear this is: Lucas. They said the same exact things about Lucas. They were sure I must have licked a cat while pregnant, that I feasted on uncooked pork, that I gave my son (but not his twin sister sharing the womb) toxoplasmosis. They were wrong. He didn’t have toxoplasmosis or any other disease, and the cyst in his spine eventually disappeared on its own, without surgery. But this, this is different. Phil’s father died of heart complications at age thirty-two. We’re told it wasn’t genetic, but really, who knows? I have a very hard time believing there’s no link. Technology wasn’t what it is today.

"If we do the biopsy, hopefully we’ll be able to rule out certain heart diseases, namely infiltrated cardiomyopothy, amyloidosis, myocarditis, but other things as well. The bad thing with doing a biopsy, aside from the risks involved with tearing is that sometimes a biopsy yields nothing." Meaning, the disease/problem areas aren’t everywhere on the heart, so she can biopsy a part that’s healthy/normal, so biopsies come back normal, even if there’s a major problem. "Another thing to consider," she said, "is you might not like the results. I might tell you that you have something that cannot be cured, that even a transplant won’t fix. And some people don’t want that kind of knowledge, so they elect not to do the biopsy. I’ll let you two talk it over." We didn’t need to. "I want to know," Phil said. The biopsy is scheduled for 9AM tomorrow, August 1. I don’t pray, really. It almost feels like jinxing things. But…

Phil just turned to me and said, "Stephanie, I just have to say it. One thing I’m scared about is that I’m going to die tomorrow." And that’s when I brought myself to pray. I believe in the power of it. It worked for Lucas. Thank you, in advance, for all your prayers, even from those of you who don’t pray, who aren’t religious, who don’t really believe. Thank you for keeping Phil in your thoughts. This bites the big fat hairy moose cock, for sure.

Comments

  1. My prayers go now not to you but to the wonderful caregivers. May they find the balance between expediancy and caution. Interweaving wisdom and experience with gentle care.

    And to you and your family, be strong and of good courage.

  2. Wow. Stephanie, I don't post much but please know my prayers are with you and your family tonight. Please keep us updated.

  3. I'm not normally a praying type of person, but this is a good time for me to put you in my prayers. I wish I could look into my magic 8 ball and tell you that the "outlook is good", but here in the real world, all I can say is that there's lots of people out here who are praying for you.

  4. Stephanie,
    I have been following you since practically the first day you started your blog. When you had your twins prematurely, I told you that my sister had a preemie. Well, that same sister also had open heart surgery at the age of 31. When I say I've been there, I mean it. I know the feelings you are experiencing, the fear, the anger, the frustration, the love. Please, if I can do anything, feel free to drop me an email.

    This sucks but it will pass…and you will be stronger for it. (I know you probably hate that, and I'm probably saying the exact wrong thing, but guess what…nothing is ever the "right" thing when you are going through something as terrifying as this). Just know that you are not alone and people have gone through this and come out the other side and can look back and reflect on it. You will be on that other side of this scary situation soon. My thoughts are with you and your family.

    best,
    Jocelyn

  5. Stephanie —
    I've only recently started reading your blog, after falling head-over-heels in love with your two books. I want you to know that all of you are in my thoughts and prayers, and I know that you will all come through this. (Good for y'all for facing it, instead of just never knowing. I think the not knowing would be the worst.)
    Hang in there.
    Crist

  6. Sending the best thoughts and prayers your way and wishing you a quick answer and a plan for treating this.

  7. Stephanie this whole situation is absolutely heartwrenching and I hope you and Phil both know how many people here are rooting for you guys to fight this. I wish there was more that we could do for you.

  8. I may not believe much in a higher power. But I do believe in the energy of Love and Kinship. There is so much faith,love, hope,belief, prayers, and toes & fingers crossed- eyes squeezed tight energy coming your way. I am hoping for all the
    best. All the absolute best.

  9. Your post brought tears to my eyes. I can't imagine what you're dealing with, and you are so strong. Best of luck to you and your family.

  10. I don't usually pray but I will now.

    I have known people who have gone through a lot of heart surgeries and they are alive and kicking and annoying the hell out of people. Not that Phil annoys people but I bet he's going to have plenty of opportunities to in the future if he so chooses.

    All my best to you both.

  11. you and your family are in my thoughts and prayers…may you find comfort in knowing friends (familiar and not so) are raising your family up and may courage come to you from the place where we all hide our inner strength until we need it most. i'll look forward to reading your post updating of us on phil's success and recovery.

  12. Stephanie,
    My father in law had cardiac amyloidosis, a heart transplant, a stem cell transplant, and it was an incredibly long and trying road but he is FINE and doing great 5+ years out. It's a miracle. My mother had cardiomypathy and healed on her own with no surgery. I can relate to all of the fears and wish you the best. Obviously if anything in the stories is helpful (amyloidosis is very rare) please let me know!

    Lindsey

  13. I am sending you support and well wishes. I really hope everything will work out. Your family is in my thoughts.

  14. Oh boy. Just checked in after a few days- very scary stuff. My thoughts are with you and your family.

  15. I don't know how you are holding up, but I imagine you are looking much better than you feel. Because reading this made me queasy (and that was before I got to the end). Needless to say, I will pray for a successful surgery and speedy recovery. I am in awe of your strength and ability to post so clearly in times like this. Thank you for sharing what must be so difficult to face (and with humor too!).

  16. I, too, will be praying for you. God is good no matter what, but I'm praying the what will be a healthy Phil.

  17. At 9am tomorrow morning I will send every good thought I have in stock and send them on over to Seton's to find Phil. I will be thinking about both of you and will be anxious to hear that all went well.

  18. Many people say that God only tests those who can handle it. Its quasi-comforting I suppose but damn, haven't you dealt with enough? This just isn't fair. I'm wishing the very best for your family and for Phil.

  19. Sending lots of positive light and thoughts your way.

    I don't pray a lot, but tonight I am saying a prayer for your whole family.

  20. Stephanie, you, Phil and your family are in my thoughts and prayers. Thank you for sharing this with your readers–I am hoping for the best for you all!

  21. I'm waving electronic pompoms in support of Phil and the whole family! You'll be in my thoughts.

  22. I'm so sorry you are going through this. My thoughts are with you and will be so tomorrow. Best of luck with the biopsy.

  23. Stephanie, I believe in the power of positive thinking, whether it be in the forms of prayer or just shouts to the skies or anything in between.

    I'm praying, crossing fingers, believing, wishing, and thinking for you both. I'm so sorry you are going through this.

    Lots of love to you, to Phil, to your families. Love and strength.

    xo

  24. My thoughts are with your family. I will send good healthy vibes towards Seton tomorrow morning.

  25. My family and I will be praying tonight, and tomorrow before his surgery. We're going to cling to faith, that his surgery is not only successful, but they come up with what's wrong and how to fix it!

    Much love, prayers, and healing thoughts, Stephanie.

    3T

  26. I am so sorry to hear this. I will be praying for you and Phil, thinking positive thoughts and sending warm wishes your way tomorrow. You are tough as nails and I know you will get through this no matter what happens. Big hugs to all of you.

  27. i dont pray either so i figure this is an appropriate time to join in

    i am sending prayers along for you, for your love, and for all of the people who you both love. and i pray for the doctors.

  28. You know what? I do believe in prayer. And you and Phil will be in all of mine tomorrow. For peace, for strength, for good answers.

  29. Stephanie,
    my ex had a heart attack at 35 and quintuple bypass surgery, then, a few years later, and angioplasty and then triple bypass. He is 51 now and doing just fine. I remember how I felt the night before surgery, the fear, the eerie calm, the refusal to consider anything but the very moment at hand. I am sorry you and Phil have to go through that. It sucks. I don't pray either but I remember a very kind nurse back then who took the time to talk to me. She told me when the most dangerous part of the surgery would be starting so I could concentrate and send, for lack of a better term, "good vibes". I did and it made a world of difference, I believe.

    I am following you on Twitter, let me know when to think of Phil and I promise I will. If you just want to talk to somebody who's been through something similar, let me know and I will send you my phone number.

  30. Stephanie,

    All those who you have touched, we are with you . . .saying prayers and offering high hopes.

  31. As I was reading this, I thought this is so similar to what happened with Lucas. And then I read the part where you say the same thing. I'm not congratulating myself. I'm pointing out that they don't always know before they know.

    I'm glad Phil opted for the biopsy. And I will be praying right along with others who care that your husband gets the treatment he needs so he's back home soon with his family. Always the best place to be.

    I'd say stay strong, but stay whatever you need to be. And your readers will stay here waiting to hear how things are going for you and your family. And praying to whomever they believe in that Phil, you and the beans knows good health and love.

  32. Oh Stephanie. I'm so sorry you have to go through this. You and Phil are in my thoughts and prayers.

  33. Stephanie,

    My prayers for Phil and you. You are such a great couple and wonderful parents. Waiting for the good news on the blog.

    Emily

  34. Hi Stephanie-I'm a friend of a good friend of yours and read your blog daily. Good luck with everything. Just went through a heart scare myself-all soved with a little white pill. It scares the hell out of you.
    Your family is in my thoughts.

  35. I have had my head in the sand and JUST read all this about Phil's heart. Oh my god Stephanie! You two must be freaking out! My thoughts are with you both.

  36. I will send positive thoughts your way Stephanie. I know you have many friends and family but really if you do need anything please let me know. I live in Austin.

  37. New reader since BlogHer. Just wanted to wish you the best and of course I'll say a prayer. As the comics in the Catskills always say, "It couldn't hoit."

Leave a Comment