March 28, 2012


My head is spinning and I just gotta type some stuff out to try to help clear....things....up...?

I don't know if that's possible.

OK. Mark's nephrologist (kidney/dialysis doctor) was really bothered while he was in the hospital that Mark's cardiologists may not have been doing their due diligence for him. He was very concerned that they seemed to want to just send Mark home to die, when they hadn't called any arrhythmia specialists in to see him.

Since being discharged from the hospital Mark's nephrologist has found a specialist who can see him. Apparently this doctor has gone over Mark's charts and thinks he did NOT suffer Atrial Fibrillation.

What?? WTF happened, then? SOMETHING happened to Mark's heart. SOMETHING caused it to stop MORE THAN ONCE, and SOMETHING made everyone think he might not survive.

But we cannot get answers to these questions until we see this new doctor on April 9. Twelve more days.

I need to lay out the series of events.

  • 2/28 - Had tooth fragments pulled
  • 2/29 - Felt really tired and crappy
  • 3/1 - Went to dialysis in the morning where his heart rate first spiked. Went to ER to get this checked out. Heart rate and blood pressure were normal, but was admitted for observation.
  • 3/2 - Somewhere around 2:00 - 3:00 AM his blood sugar is real low, then his heart rate spikes, blood pressure bottoms out and heart stops. Is shocked, intubated and moved to ICU.
  • 3/2 - 3/4 - Remains intubated and sedated and on IV meds to support his blood pressure and keep his heart rate from spiking.
  • 3/4 - Breathing tube comes out and wakes up. Sore throat (from tube) and coughing a lot. Heart rate is till erratic, but not dangerously high.
  • 3/5 - Coughing gets worse until around 9:00 PM when his stats go wonky and his heart stops again. Use meds to get it going but has to be re-intubated.
  • 3/5 - 3/7 Find out he has staph in is lungs (pneumonia). Remains intubated and sedated and on IV meds to support his blood pressure and keep his heart rate under control. Spend this time thinking Mark may not survive this.
  • Night of 3/7 - Let him wake up and be extubated again. I explain the situation to him and he too thinks this might be it.
  • 3/8 - Have a huge family meeting about possibly needed hospice care. No cardiologist in attendance. Nephrologist comes in and is appalled that everyone wants to send Mark home to die. We have his cardiologist paged. When he comes he says there's nothing they can do to fix Mark's heart. He says he consulted with 2 arrhythmia specialists who concurred.
  • 3/9 - We think Mark is rallying, but there's still nothing they can do to fix the problem so he's probably going to get worse and worse. Nephrologist is still insistent that he needs to see a specialist.
  • 3/10 - Mark is doing well enough to leave ICU late that day.
  • 3/11-3/13 - Stable and ready to go home but it takes a long time to figure out what the plan is. Get home afternoon of 3/13.

Since we've been home Mark has been stable. He's still struggling to get all the fluid off that the hospital packed on him. We have been and are in this weird limbo place where we're trying to go on with life, with major changes, while constantly worrying about Mark possibly dying.

Again, today we hear that the specialist Mark will be going to see doesn't think the problem was A-Fib. And this is supposedly good news, because I guess non-A-Fib arrhythmia can maybe be helped with a pacemaker...?

I don't understand why we needed to be teased with this little bit of info when the doctor hasn't actually SEEN Mark, only his charts, and we don't get to meet him for twelve more days.

How the HELL do we not sit around wondering our brains out about what is really going on with Mark's heart?

Nope. I'm no clearer on anything.

And probably just confused the hell out of anyone reading this. Sorry about that. Welcome to my world.

Tomorrow we're going to see Mark's regular cardiologist and I expect will be pressing him pretty hard for some explanations. Mark is not happy with him at this point. All I know is I need answers. I need to know if my husband is going to live or die.


  1. Wow...okay... that is weird... for some doctor who has never seen Mark say he doesn't think his A-fibbed... when doctors who were right there with him diagnosed it... Hummm.... no wonder you are all messed up.

    Anyway you can call an emergency meeting with this new doc? Tell him Mark CAN'T wait 12 days.... Where is he located?

    And I'll just clear it up for you: Yes, Mark may die and Yes, Mark may live.

    There ya go!

  2. oh wow...I'm so sorry...this would absolutely make me nuts...
    but okay, 12 days? not so bad...
    that should have sounded convincing...
    continuing to send prayers for your family....hopefully this new doc can give some good news soon

    1. Yeah, I mean it's one less day than he was in the hospital, right? ;-)

  3. Oh, Jen. I hope you can get answers soon. I know when you're in the middle of something, and you've got people giving you their opinions from every direction, it's so hard to sort out and think straight and know what's really going on. Hopefully this fog of contradiction and information and misinformation will be lifted sooner rather than later.

    1. Greta, you said this perfectly for me. Thank you!

  4. Oh my goodness - why can't they get him into see the specialist sooner than in 12 days? That one doctor who got the specialist for you is wonderful. Oh my gosh though - all this - all you are going through I just cannot imagine any of it. This is just - so huge, and I just do not have the words to say to help you - just know that I'm on the other end of your posts reading them and rooting for you guys.

    1. We did call and ask if there was an earlier appointment, but no luck. It really means a lot to me to know we have a cheering section!

  5. You guys have been through SO much. . .

    I wish I had the answers for you.

    Hoping and praying that this new specialist has the answers that y'all are looking for.

  6. Hugs my girl! I cannot even begin to imagine the sort of confusion that you are all going through right now. Let's break it down . . . it is now less than 12 days . . . there is a long weekend in the middle of it . . . it will be here sooner than you think.

  7. I hope that the appointment on the 9th will bring some more clear information(it would be nice if you didn't have to wait so long). You do an amazing job of keeping track of everything....but it's so much to handle. No wonder your mind is swirling. My continued prayers are sent your way.