should you be alarmed when your nurse starts to cry on your behalf?

In ALL, ILLNESS by Stephanie Klein50 Comments

Phil had an appointment with his cardiologist yesterday. It was a scheduled "stress echo," where they were planning on taking photos of his heart at rest, and then every three minutes, as they upped the speed on a treadmill. That didn’t happen.

Since Phil’s had a pacemaker (9 months ago), his ejection fraction (the percentage of blood pumped out of your heart) has trended down from 60 to 40 to, as of March, 23.5 percent. A normal LV ejection fraction is 55 to 70 percent. Once he hit 23.5, he had to wear the man vest–an external defibrillator that will shock him if his heart stops. He was put on medicines, that they’d hoped would work. Yesterday we learned that they haven’t.

The nurse put stickies on his chest and began an ultrasound of his heart. I sat there watching, thinking about the times I was on the table beside a nurse, when Phil was where I was, waiting to hear two heartbeats. Again, we were waiting to hear good news. It’s not as if we could interpret what we saw on the monitor. We weren’t trying to determine if there was a penis or three white lines this time. Instead, as we waited for the doctor to come in and read the screens, we tried to guess if his ejection fraction was up at 50 or 67.2. It was like playing roulette and putting all your chips on your favorite number.

The nurse excused herself for a minute. "I don’t like that," Phil said once she’d left.

"Like what?"
"Well, if she saw that everything was looking good and fine, she would have just told me."
"Stop reading into things. You don’t know that. And you’ll know soon enough anyway."
"No, she went to get the doctor, so she can be the one to tell me I’m dying."

The nurse returned, then the doctor, who glanced over at the machines shaking her head. "Well, that’s not good," she said. "Not what we were hoping to see."

Not words you want to hear from your doctor.
"What, my ejection fraction isn’t any better?"
"No, it’s not. It’s actually worse."
"If you had to give it a percentage, what would you say it’s at?" I asked.
"Well, it’s not exact because his heart is just that funky, but I’m calling about 15 percent."

After more talking, Phil’s cardiologist left the room to go speak with Phil’s electrocardiologist, the one who’d put in Phil’s pacemaker. The nurse was unclamping wires from the stickies on Phil’s chest, when she began to cry. "I’m so sorry," she said as tears streamed down her face. "I was just so hopeful for you. I mean, I was sure it was going to go up. I told one of the other nurses that she’s got to give you the echo next time because maybe I’m just bad luck." She wiped her face and apologized again. "I need more sun," she said. "I’m so sorry for getting so emotional about this. I just really wanted it to be good news."

I know that sounds extremely unprofessional, but actually, it was comforting. She cared. It was touching. She knew it was inappropriate, apologized several times, but I understood. She was showing what I couldn’t.

Phil got dressed, and we were lead down the hall to meet with his electrocardiologist, an unscheduled appointment. "So, I’m guessing Dr. S. explained to you about what she saw, huh? She said your heart looks crappy. Well, not just crappy, REALLY crappy. She told me your ejection fraction is at 10 percent. So it looks like we’re going to have to put in a three-lead pacemaker with a built-in diffibulator, a device that’s 5x bulkier than the one in you now, and with leads that are far more apt to get dislodged. And there are risks involved that we need to go over." Pulling out the leads he has now could cause internal bleeding. And the new leads can fall out. If he bends a certain way, the third wire will brush up against something else, that will cause Phil to have hiccups. I can live with hiccups. These devices, he said, have a 7 percent chance of going off needlessly, meaning, it can electrocute Phil while he’s driving, holding one of the babies in the pool during swim lessons. And there’s nothing we can do about it. Even if he pulled that statistic out of mid-air… he wanted us to know about the risks. "Also," he said, "there’s a chance that putting in this third lead won’t help your ejection fraction at all. We can only hope." So that’s what we’re doing. We’re hoping. Despite all the risks, we have no choice. This is what he needs. Period.

Today Phil is working on scheduling his new operation (though I wonder if they refer to it as a ‘procedure’). Again, the new device will not cure him of the atrial fibrillation that’s causing even more damage… but it will save his life if his heart stops.

Some background:
In March, Phil had an ablation, where his electrophysiologist Dr. Natale burned vessels in Phil’s heart, hoping to get Phil out of atrial fibrillation (which is damaging his heart). Natale got a lot of it, but said there was a portion of his heart that he couldn’t get to because "It was highly diseased" and thick, scarred, from all the a-fib perhaps, and that he’d risk perforating the heart if he pushed too hard to reach the vessels. Phil has a familial cardiomyopothy. The hope, though, was that the ablation would knock him out of a-fib or a-flutter, or any of his other arrhythmias. Combined with aggressive settings on his pacemaker, they were hoping to get him out of atrial-fibrillation, 100% of the time. But. But. But. But he’s still in atrial-fibrillation (which is causing more damage) about 50% of the time. I’m not sure about that percentage, but the truth is, for right now, that’s not even the most concerning part. An ejection fraction of 10% means of all the blood pumped into his heart, only 10% of it is leaving at a time. And given that Phil’s father died of a weak heart pump… it’s appropriate that they’re monitoring this situation as closely as they are. It’s also amazing that through all this, Phil is thankfully asymptomatic. That is, he’s never felt anything has been wrong with him. He isn’t in pain or short of breath. Short on patience… well, yeah, but that’s for another day. Smooch.

AS FOR A HEART TRANSPLANT: We haven’t discussed it. The doctors haven’t brought it up. I asked, and they said, we weren’t at that point yet. I don’t know how long a person is on a waitlist or how it’s prioritized. I also don’t know that we’re there yet. I do know that he doesn’t have familial amyloid cardiomyopathy (which would’ve prevented him from being a candidate for a transplant). So we’ll just jump from that bridge if we ever get there.

A YEAR AGO: Fat Girl Slimish
4 YEARS AGO: Bowling For Soup
5 YEARS AGO: Seduction

Comments

  1. Dear Stephanie, I am in the medical profession, and everything that you've written sounds like the MD's are taking things appropriately seriously. It does sound serious. Has Phil been or will he be evaluated for a heart transplant. The MD's may have talked about this. I would ask them about it. You need information, to possibly meet a surgeon.

  2. I'm sorry it wasn't good news. It sounds like it's extremely confusing to follow all these different numbers and conditions and meds etc.

    Have his Dr's said anything about a transplant? (I'm sure you'll get asked that a lot, and I apologize if it's not a question you want to address)

  3. Stephanie, I'm sorry to hear the news. I hope for you and your family's sake that the new pacemaker helps your husband. My thoughts are with you.

  4. You know, some shit is JUST. NOT. FAIR.

    I know you guys are fighting along, doing what you have to do, but all of this shit?
    NO FAIR.

  5. Stephanie, I wish it was better news for you both. Keeping you and the beans in my thoughts.

  6. Wow, Stephanie, I am so sorry. This really, really sucks. I'm sending positive thoughts your way and hoping right along with you.

  7. I lurk too often, and say too little.

    Don't really know what to write here, except I am sitting in my living room, a stranger, wishing and hoping for better news. I'm so sorry.

  8. I'm so sorry and we are praying for Phil, you and the little ones. If it is any comfort, I have two friends whose parents had heart transplants and lived very full lives for 20 years after the procedure, so if that is what it comes too, there is a lot of hope for the future. Sending lots of love and positive thoughts your way…

  9. I'm glad seeing that nurse's human side helped. Thinking good thoughts for you and your family…

  10. I'm sorry.

    As for the nurse, I think it's beautiful that she cried for you.

  11. I'm sorry for the bad news, as someone with heart issues this was hard to read. But it does sound like the cardiologist and electrocardiologist are being good at not sugar coating and getting him in quickly so that should be very reassuring. Crossing my fingers that this next operation (i hate the word procedure) does the trick and sending good thoughts your ways.

  12. Oh Steph… I'm so sorry. For what it's worth, I sat here crying while reading your post. There are many, many people praying for you all.

  13. Ditto what everyone else has said.

    Now the hard part — you know I've almost never taken Phil's side in any of these spousal things, even before you were married. Men are jerks; we all know this. That said, maybe you should lay off on some of the hocking re household chores, childcare, etc. I assume he's keeping up a full work schedule; maybe he should just rest/read/chill/watch TV when he's not engaged in earning money. I'm no husband coddler, but mine has had some health problems, and while he's coping with whatever changes he's going through, I shoulder more than my share. And he hasn't had anything even close to the seriousness of Phil's issues.

    Sorry. Don't hate me.

  14. I hope the test was wrong. Bass ackwards. And I send positive internet vibes for you and yours.
    If it's at all comforting, my fiances' father had severe heart issues. All odds were stacked against him. He had to live 2 years at the VA hospital hooked up to machines. BUT he got a heart. A young, healthy heart. And he left the hospital and had 10 years more. And his heart wasn't the issue then, cancer got him in the end. But I wanted you to know that all his Dr's never thought it'd happen, that he'd get better. BUT HE DID. He never gave up the fight and his determination and the Dr's skill and care saved him and gave him a new lease on life. I can only imagine how scared both of you must be right now and it probably sounds glib to say, keep positive. But do anyways, if you can. I think it helps.

  15. Wow, how strong you must be, and must feel you have to be… you're in my thoughts and prayers.

  16. stephanie, I'm really sorry to hear this news and will keep good thoughts and prayers coming your way.

  17. im so sorry to hear that you all have to go through all of this. im sending some positive vibes your way.

  18. God, I wish I would have read this before I sent you that freakin' fundraising Brooklyn gourmet thing.

    I'm glad they are watching him like a hawk. At what point will they declare him a candidate? I mean, wouldn't make more sense to get on the list NOW just in case?

  19. I'm so sorry Stephanie. I hope the new pacemaker works as intended and that things turn around for Phil.

  20. I am so sorry the news wasn't good. You and Phil and the tots are in my thoughts.

  21. WOW! I don't envy you one bit. But I do wish you strength, perseverance and patience. It sounds like you have extremely capable doctors who are doing all they can. So we'll all cross our fingers and hope the next outcome will be more positive.

  22. Just when I want to have a pitty party for myself, God reveals to me struggles greater than mine.

    I'm sorry to hear about this and will pray for your family. I too, have a friend who received a heart transplant in 1970-ish. He was one of the first to receive a heart transplant and he's still alive today. That was then, can you imagine what advances in medicine can do today. For today, you only need what appears in the next 24 hours. Its all we're promised.

    God Bless

  23. Damn, I was hoping it wouldn't take this turn.

    I think I'd discern the nurse's reaction as simply humane. Perhaps she reads your blogs.

    Phil, hang in there. I cannot begin to imagine what you're going through, or the thoughts flooding your brain. One day at time, it's all either of you can do right now. I'm sending positive vibes. Lots and lots of positive vibes.

  24. Long time reader.

    I cherish your honesty, your sharing and your strength. I'm here for you, Phil and the sprouts.

    Trish

  25. I'm sorry it wasn't better news. Sending tons of good thoughts Phil's way.

  26. Seriously, that's really, really, REALLY sucky news. I'm so very sorry.

  27. I'm so sorry to hear this. My ablation in February was quite successful and I was really hoping that Phil was getting the same results. I have an ICDS installed, a defibrillator/pacemaker combo and it hasn't gone off all the way since I've had it, about 4 years. It does reset my heartrate, which feels like itchy vibrations, but I've not experienced the kick of a mad horse that would be what the real potent reset is supposed to feel like.

    I was recently informed that my cardiomyopathy (hypertrophic obstructive) makes me not a candidate for a transplant. Which was very hard to hear since I had been told otherwise for years. But once your heart is damaged beyond a heart pump, they'll assess Phil, look at his habits and his needs (drinking, smoking, drugs will disqualify him) and then put him on the list. Where he is on the list depends entirely on his need. If he can stay alive on an external heart pump, someone who can't will jump ahead of him. It can be a long wait or a short wait, depending upon his condition and the availablity of a match.

    Meanwhile, make absolutely sure he's restricting his liquids (it's SO hard). Get him a lot of decent sugarless candy to suck on so he can at least keep his mouth moist. Use the lasix religiously to keep the edema down. He should be at his dry weight every single morning when he does his first vitals of the day. Do you have an external vitals machine that sends in his vitals to the doctor daily? You should set this up so they can monitor him for any weight gain as well as O2 depletion. As his cardiologist about it. It's a big pain in the ass, but it keeps you on an even keel and that's really what you want, right?

  28. Prayers are with Phil, you and the beans. You have such an amazing life and this just won't stop you guys. Phil is so strong. Together you'll figure this all out and it will work out. Good thing for precautious doctors and caring nurses. In the meantime, meditation and candles to calm all your nerves…Love the family pictures from this weekend btw. Picture perfect family. You can see the love.

  29. Stephanie, my thoughts are with you. Believe things will get better as much as you can.

  30. Sending prayers and good luck vibes your way Stephanie!

  31. I hope everything turns out well for you and your family, Stephanie.

  32. Stephanie I'm a nurse, I used to work in cardiac critical care – the nurse is only human and she truely cared. I've cried a few times at work – mostly when it's bad news for the patient/family or when there was a death\comforting a patient's family. The nurse probably was very hopeful for you and your husband – it's so unfair really that this has happened to you guys. I do think you should look into getting on a list for a transplant (is that ever discussed?)
    My thoughts and prayers are with you two and those wonderful little beans.

  33. I ABSOLUTELY AGREE.
    In the light of this, its incredibly petty.

  34. Stephanie

    This is my brother in law (through marriage)well ex brother in law actually. Super nice guy though and supposedly a genius….close to you in proximity as well??

    http://www.bcm.edu/baylorheart/?PMID=3238

    Not sure how the medical system works in the U.S. but can you possibly get another opinion???

    Good luck with everything…..

  35. I sooo suck at finding the right words during emotional situations, yet I always feel like I should say something.

    We don't know each other, but you are in my thoughts. Good thoughts. If anyone close to me is in the hospital dealing with a major situation, such as this, I can only hope that we have a nurse that cares that much.

  36. I'm sorry Stephanie. Hang in there and take care of yourself so you can take care of Phil.

  37. Add me to the list — another stranger, crying, sending good thoughts.

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