This is not a photo of Phil but of the new man bra life vest he’ll be wearing. And to be clear, his eating habits and lifestyle have nothing to do with his heart condition. He doesn’t have clogged arteries. He has electrical problems. I believe he has genetic problems, and that I need to have the sprouts checked out (if only so in the future we have a control, some record). Phil’s cardiologist gave me two names of pediatric cardiologists here in Austin. The onset of Phil’s symptoms weren’t until late in life, so it’s unlikely they’ll find anything, but it’s still good to check, and then figure out how regularly to get the kids checked from there.
Phil’s on his way home now. He had a scheduled appointment at a doctor’s office, where they’d take blood, add a good helping of radiation to that blood, then put it back into him. That’s right, radiate him, on purpose. I can’t help thinking about the lead vest they make you wear at the dentist’s office, how we’re supposed to avoid things like radiation, unless we’re dealing with cancer, which thank God, we’re not. Next, they do a scan of his heart, a MUGA, for a much more accurate reading of his Ejection Fraction (how much blood is pumped out of your heart). A healthy person has ejection fractions between 50% and 60%. Phil’s we just learned today is at 20% and is trending down. It would be one thing, if we knew he was sticking at 40%, and over time, as we watched it, it stayed there, or was going up. But each time they monitor Phil and check his ejection fraction (over months now), each time, it’s a lot lower. His doctors are very worried.
Phil just walked in, and Lucas and I ran over to hug him (Abigail was holding out for a Gummy Vitamin), to find out how he was feeling, how it went. "I’m dying," he said with a laugh. Well, we’re all dying, I thought. "She’s really worried," he said about his doctor. He never admits the weight of things to me, or others, always playing them down, refusing to admit the severity of any news. But this time, he was still very short with his answers, cracking jokes, but he also let me know that I have every reason to worry now. "She said my heart can stop at any moment now, and I’ll just drop dead." Sudden death, I thought. It was one of the symptoms listed under cardiomyopothies. Is this really happening? Then I imagined him driving the car, with all of us in it, just dying, with his foot on the gas. I’m shaking now.
This is about him, of course. But in a moment like that, my mind goes into preparation mode, a string of inappropriate thoughts rush through me. Where are the papers? The important ones? Should we move now? Will he be here in three weeks when they install the playscape we just bought for the kids? Then I look down at Lucas, smiling, asking for more applesauce, and I think, we should get more videos of them with their father. They light up when he enters the room. How can they grow up as people who’ll end up saying, "I don’t remember my father, really. He died when I was really young." All these thoughts crowd out the sounds of the house. And I find it hard to breathe.
Phil’s father died at age 32 of a cardiomyopathy. The pump in his heart just got too weak. Phil is 41, and his heart is getting weak, weaker every time they check it.
This is a man who loves me even when my fat pants are too small. Even when rolls of fat hang out. Even when… any "even when" I can think of.
He hands me a bunch of new papers the doctor had given him. "I don’t have congestive heart failure," he said as he handed me a piece of paper titled, "What is Congestive Heart Failure?" What he has is asymptomatic LV dysfunction. This means that he feels 100% FINE! "But soon," he said, "I might not, and we obviously don’t want it to get to that point." So what do they do about it?
They put him on new drugs. More drugs. A Beta-blocker: Coreg Cr (carvedilol phosphate). Now, it’s not just blood thinner to help him avoid a stroke. It’s pills to strengthen his heart. Phil is scheduled for an ablation on March 23, which is where they burn a bunch of blood vessels in the heart, hoping to get him out of Atrial Fibrilation (which his pacemaker was unable to correct). Except now he’ll need a new pacemaker with a built-in diffibulator, except they can’t do that the same day as the ablation. So I don’t know what will happen next or first in all this. What I do know is that the list of symptoms he just handed me sound like things I could phone a doctor about on a regular basis:
Call your doctor if you have: unexplained weight gain– three pounds in a day or five pounds in a week. Yeah, while this happens to me quite regularly it’s not exactly "unexplained" now is it you cookie monster? A feeling of fullness (bloating) in your stomach. Extreme fatigue. Coughing during the night… Oh, please. Been there, live that. Still, I’m putting his doctor’s phone numbers in my cell phone.
One of the other things the doctor suggested Phil do is wear this special vest that can read his heart and set off an alarm if his ejection fraction gets too low, indicating that he go to the hospital. It’s a man bra. That he’ll need to wear at all times. Phil turns to me and says, "I feel fine. I’m not wearing that thing all the time." And I can’t help but think of the swim lessons we were planning for the kids, where we’d get in the pool with them and teach them to blow bubbles. If he has to wear this vest all the time, does it mean that when he’s showering or swimming, he’s taking that chance? Ugh. I had a playdate for the kids all set today with the neighbors, but now I’m too anxious to deal.
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I don't even know either of you, but reading this made my heart race. If only I could donate some of that to Phil.
Is heart transplant a last-resort option? Or would it not work?
FROM STEPHANIE: I think they said that it wouldn't work, but I'm not sure at this point. I don't remember.
Hey Stephanie; no words and no platitudes. Just support from a faceless stranger that is sending you guys major good thoughts and well wishes.
Is Phil still doing the same type of work? Isn't that stressful overall, and how does that affect his condition? Life is just one BIG rollercoaster. I will be praying for his (and yours) good health.
I am so sorry to hear that you are dealing with this and am hoping with every ounce that Phil soon improves and his heart grows strong. Thankfully, medicine is better than it was in his dad's time.
Hi Stephanie, I'm really sorry to hear about Phil's health problems. Life is so damn unfair. I will think good thoughts for your family. You guys have overcome so much and I'm sure you will adjust to these new realities, too. Wishing you the best.
I was just feeling sorry for myself when I read this post. No more. I hope Phil wears the vest! I am sorry, Stephanie, I hope they get him in fast and all is well. Will be sending love your way.
This is intended to make you feel better – my best friend has not had any kidney function at all for the last 5 years, and that, in turn, has basically ruined his heart. Two years ago they pretty much told him the same thing Phil's doctors told him, and he's been plugging along ever since. Best of luck, and I'll be thinking of you.
I echo DeannaBanana; I can't offer words that would help, as much as I want to try, but you're all in my thoughts and prayers.
Praying and praying and praying for Phil, the kids and you. Be strong, stay positive and know we are thinking of you and praying for the doctors to do what they do best – make people better!
Sending you all my positive thoughts.
Oh Stephanie..I'm so sorry. I'll be praying for Phil's health and for you and the babies…
As I read this I got that tightening in my chest, that slow squeeze where you feel like it may be hard to breathe in the next minute or so. I cannot even fathom what you're going through right now, but I'm furiously writing his name down on my list of people to shake my fist to the gods about. If, for example, wearing a cup would somehow save my life and let me be with my children for a little longer, then by GOD, I'D BEJEWEL THE DAMN THING.
Just another person you don't know, probably will never ever meet, but who will remember Phil, you and the children as well, in thought and prayer throughout my waking hours. Granted, none of us knows when it will be our last hour or minutes here, but when handed news that speaks of the potential dangers that are very real, SO VERY real, that life as you (we) know it could change in -yes, a heartbeat -I think my advice to you is to know this could happen but try to dwell on the positives in your life together as much as possible. Certainly, this is something we should all be doing, all the time, but given the circumstances, a few extra photos won't hurt anything and should the unspeakable become a reality, then you can at least say "Well, I'm so glad I have this -or that -or these pictures" to preserve all the memories you can.
For whatever peace of mind, comfort -whatever you care to call it -you can take away from the words of all these strangers invading your blog, your life, please just know that so many people will be with you in your walk, willing to do anything we can from afar, to help. Right now, I know, it's not much but is the best we have to offer, given the circumstances.
But do try to maintain as much air of normalcy, of the power of positivity and yes, prayer. It may not cure all the ills, but it does help knowing you have some kind of support network behind and beside you.
Stephanie, I'm so sorry to hear that you and your family are still going through this. If I knew you in real life I would bake you guys some chocolate chip cookies or at least send over a couple of pints of Ben & Jerry's. Instead I'll just send my best wishes for Phil's health to improve.
I never have posted ever here, Stephanie, and this is the first. I am not at all a religious person, and do not believe in organized religion. However, I do believe strongly in God and a universal energy and reason much bigger than we can ever comprehend on why things happen. The amazing power of prayer, and asking for spiritual help and intervention can do some incredible things. Sometimes help comes through in being given strength to get through a dianosis or treatment, sometimes it's being connected to the right doctors, sometimes it's help beyond what we can do from a human perspective.
You better do the driving. :-)
Blessings on you all. You are in my prayers.
Just want to send my best wishes and hopes and thoughts and prayers to Phil and you and your family.
As others have said, I don't know you (besides the blog). I could barely get through reading this–it was so upsetting. My thoughts go out to you and your family. Also, can talk to you about ablation (as a non-medical person), as my dad is recovering from a laser ablation.
Oh Stephanie.. I am really hoping this is just a scare, something temporary.
Since you and Phil are on top of all the medical options out there, I would also suggested talking to a naturopath. My entire family is getting *great* results with holistic medicine, and I strongly recommend it to everyone with chronic conditions. It doesn't mean turning your back on Western medicine; instead, it's complementary. You would be surprised how much changes in diet and some herbs or natural supplements could do.
Please consider looking into this option; I am sure there is a naturopath in your area. Or you could start by contacting my holistic practicioner (she works by phone): Rose Cole, http://www.wellnesswithrose.com/contact.html
Best.
And keep the play date.
I can feel the panic in this post. We just finished our estate plan this week and our minds have been racing with the possibilities of what ifs, but for us it (fortunately) feels very hypothetical. I can't imagine what this must feel like for both of you.
I hope you can take a big family vacation soon and relax together, taking tons of video and photos.
My positive thoughts are being sent your way, Stephanie, with the hope that Phil's doctors hit on just the right thing to improve his health. (((((( All of you ))))
What's up with this post? Regarding the gravity of the situation, you sound utterly detached. I do not find in there any of the feelings that I imagine go along with such a devastating diagnosis and grim perspective. I don't read any fear of losing the man that you love. You write that the man at risk is a man "who loves me even when my fat pants are too small" (yeah, who want to lose t h a t??) and list organizational inconvenieces…to me, very strange.
That aside, I wish you strength, and may Phil's heart be strong and keep on beating for a long, long time. Hope they make the vest in waterproof. Make him wear it always, always, always.
Looking at this from the best possible angle – at least you have the warning to make every possible moment count. So many people don't see how precious the time with their family is. There really is no time in life to get upset about the bullshit. I am sending tons of good vibes your way.
You are so blessed to have him and my heart aches for you just reading this. You both have been through so much that I am praying that in this time of uncertainty and stress that you find some peace.
Oh Stephanie, my thoughts and prayers are with you all.
Dear Stephanie-
I have been reading for a couple of years now, and wanted to offer my sincere thoughts, prayers and whatever else is needed.
Jen
I don't know what Jewish folks believe about faith but God doesn't want us to live in fear. Have you thought about getting involved with a church/temple or wherever Jews go to get their faith stronger. I love reading about your life ad I know that this blog is your outlet, but you need some people who will pray for you and with you as come to grips with your life. Everytime the doctor says, "this is serious "it may very well be serious but sometimes I believe God (or whatever deity you believe) allows us to experience health challenges to bring us to a place where we focus on him and the most important things in our life. I remember when Lucas was sick and now it looks like he is better. All sickness isn't until death. But know nothing matters more than our faith, our families and our friendships. My prayer for you is that no matter what life brings you, you have the faith to believe and the strength to handle the uncertainty. To whom much is given much is required. You are a wife and a mother so you gotta put your dukes up and get ready to fight. As life will beat the crap out of you if you have no faith. Even when you have faith you get beat up pretty bad but you'll have grace and peace to withstand. My best to you and your family.
I don't know what Jewish folks believe about faith but God doesn't want us to live in fear. Have you thought about getting involved with a church/temple or wherever Jews go to get their faith stronger. I love reading about your life ad I know that this blog is your outlet, but you need some people who will pray for you and with you as come to grips with your life. Everytime the doctor says, "this is serious "it may very well be serious but sometimes I believe God (or whatever deity you believe) allows us to experience health challenges to bring us to a place where we focus on him and the most important things in our life. I remember when Lucas was sick and now it looks like he is better. All sickness isn't until death. But know nothing matters more than our faith, our families and our friendships. My prayer for you is that no matter what life brings you, you have the faith to believe and the strength to handle the uncertainty. To whom much is given much is required. You are a wife and a mother so you gotta put your dukes up and get ready to fight. As life will beat the crap out of you if you have no faith. Even when you have faith you get beat up pretty bad but you'll have grace and peace to withstand. My best to you and your family.
My thoughts and prayers are with your family. Is this something that a transplant would cure? I know that's none of my business, but you're so near one of the best transplant centers in the world it simply occurred to me.
Just wanted to say I'm so so sorry you're dealing with this. Thinking good thoughts for all of you.
Ditto what everyone else said and then some. Take care of each other, cherish every day, and do everything you can to prevent this from getting any worse.
Phil, wear the vest! Stephanie and the beans need you hang around for a while. Get it? Please put your pride aside and help ease their fears. If not for you, do it for them.
Stephanie, my heart hurts for you reading this. Praying for you and your beautiful family.
to Ali E:
Wow, it seems like you and I read two completely different posts. To quote Stephanie: "I'm shaking now." "And I find it hard to breathe." Etc. What else does she need to say to convince you that this is terrifying and tragic? Everyone deals with fear and anxiety differently. . .where one person might be incapacitated, sobbing on the floor, another person becomes stoic and takes care of the business at hand. Either way, judging someone for how they deal with grief/fear/anxiety is cold and egotistical.
Man, I never would have thought the trolls would come out even on a post like this one. . .people never cease to amaze me.
I am a reader of your blog too. Never have commented but feel now is the time to pledge my support for you and your husband. I know this is a difficult time for you and pray for your strength and discernment.
That said, I am quite dismayed by one of the reader"s comments. How rude to suppose what someone should or should not sound (in this case write) like when they speak of such news. I find this terribly closed minded and quite presumptuous. I am offended for Stephanie and her husband that ANYONE in the guise of support could state something so clearly without basis or merit. Shame on you whom ever you are and God forbid you should ever find yourself in the same position. Judge not lest you be judged.
Ali E – Seriously, where's your compassion? For someone so bent out of shape about a lack of emotion, you're not showing much yourself. People feel, express, deal with emotions in many ways – there's no right way to respond to such news. Stephanie – I'm sorry to hear it and will keep you and your family in my thoughts and prayers.
Stephanie,
Good luck and God bless you and your family. I don't have any advice or words that won't sound trite or annoying, so I'm just going to send you my best wishes.
This is tough. I've done the cardiomyopathy dance with, let's see. Mom, Sibling, Other Sibling, two cousins, my grandfather, and an aunt. It's rough. And what's really rough is the not knowing part.
That being said – and this sounds weird – is that if you're going to have heart failure, you'd really rather have congestive heart failure. My mom's had it twelve times thus far, and will probably get it again soon. My grandfather has had it a whole whack of times now, and he's still ticking. One thing that's a dead give away in my family of an impending attack is SERIOUS crankiness and finicky behaviour – starting fights over nothing, over not doing something perfect, and not ever being pleased by an attempt to fix it. We call it cardiac irritability. The other is the tips of fingers turning a bluey grey, and water retention. A cardiac cough.. I don't know. It sounds *different* from a cold, but I don't know how, precisely, to describe it. But once you know what it sounds like, you'll remember, and you'll prick up your ears whenever you hear it.
But the good news is, they put you in a hospital, they put you on oxygen, and most of the time, you recover no problem. They get your heart beating properly or put in a pacemaker and it all works out. Like I said, my mom's had this happen, with a myopathy, twelve times. It's scary, yes, but in a weird, odd, sick, twisted way… it's a routine. and you kind of get used to it.
My brother had hypertrophic cardiomyopathy (I'm not sure if this is the precise kind your husband had), and when he was sick, they removed the offending muscle and he's … well, he's running wild as mid-twenties boys are wont to do.
The only other advice I really have is… get the kids checked. It does seem to run in families.
Sending all four of you the best healing energy, thoughts, and wishes from across the pond.
Wow–I've had your blog favorited for over a year. I think I came across it thanks to my sister Jamie. I recently started my own. I'm going to continue you reading. Take care!
Stephanie I am so upset about your news – but while you worry you should not give up hope! No one ever knows how long they have…This news really sucks but I believe God / fate put you two together – to have those beautiful little beans and to show you both that it's possible to have a loving marriage. I give you so much credit for being able to put this all in words and share with us…you guys will figure this one out and eventually Phil may wear the vest but right now his pride is hurting too. I will pray for you guys!!!
Hi Stephanie, I am so sorry that this is happening to your family. Last year my husband was diagnosed with lung cancer right after his 45 birthday. At first things looked great – it was only in his lungs, he was responding great to treatment. Things would be ok. Also our girls, 2 and 4, didn't really have any idea about how sick daddy really was. Now a year later the lungs are clean but the lung cancer has moved into his brain. He has had seizures, brain swelling, and radiation. The doctors recently told us the surreal statement that his body does not respond well to radiation. What a non-normal thing to know about yourself. He is now on a new chemo treatment that will hopefully reach the cancer in his brain. Jeff will always be managing his cancer for the rest of his life. We have to take things one day at a time. The panic sucks! The brain goes to crazy stressful places. MY advice is really be that team that you think a married couple is – stay close, stay honest, talk when you need to but laugh as much as possible. Anything can happen but usually people are lucky. Get the help your family needs in every way. I will be thinking, hoping, and praying for you, Phil, and the kids.
– Lots of love from a reader who has been let into your life by your wonderful words.
Ali E….I totally agree.
I'm praying for you both. My husband had no symptoms 3 years ago and just happened to check his blood pressure, that was high, and his right artery ended up being 90% clogged. I know how you feel.
I really really hope things get better – that level of anxiety is just so hard to deal with. It's horrible.
Thinking of you, and wishing you well so much…
One more person thinking of you . . .
No words…just good, old fashioned best wishes and good vibes being sent to your whole family. I may not know you all personally, but I feel like I do. Big hugs to everyone.
In situations like these, everything I think to say seems not quite right. So, just count me among the many friends you've never met that are hoping for the best for you and Phil. p.s. My Dad had a massive heart attack when he was 38 and almost didn't survive heart surgery a year later. I still remember being summoned to the hospital in the middle of the night when I was 8 because they didn't think he'd make it to morning. He is getting ready to celebrate his 70th birthday.
Stephanie – I will call out Phil's name before mishaberach (public prayer for those sick in body or heart) when I'm at services next week (or the week after; not sure when next services are; tell him to sit tight ;) )
I know someone that I think had the same problem. He had a pacemaker installed with a diffibrulator. He died last year in his 60's, but not from the heart problems, from other problems. That man was an ox; he wanted to live and so he did despite a myriad of health issues. Phil can get through it and so can you.
Try to stay positive. Best wishes!
My dad came from the hospital with one of these for his rapid heart beat, I think. He’s 1000 miles away and I’m doing research to see what it is he has. I know that he has to wear it 24 hours a day except when he showers. I’m wondering if he is allowed to drive when he is wearing it. My dad’s apparatus will shock his heart. Does this one do the same?
Do you have any updates? How is he doing now?