He was in the pediatric emergency room when I found him. It wasn’t my son, but my husband, on a gurney in a robe, hooked up to machines.
Weeks earlier he’d been complaining of stomach bloat, like any woman. He’d stand in our living room and twist, as if he were twirling an invisible hula hoop ’round his midsection. “I can hear it swishing,” he’d said. After attempting a 7-day food fast without any signs of hunger, he wondered if something could be wrong. Tests revealed he was in “complete heart failure,” a term we’d never heard.
“Complete heart block,” sure. We’d been around that block years ago, in 2008, when doctors inserted a pacemaker. His ejection fraction plummeted to 13%, and the pacemaker was replaced with an internal defibrillator with a bi-ventricle lead. He was cardioverted several times (aka, shocked with the chest paddles) hoping to get him into sinus rhythm. He had an ablation. All attempts to get him out of atrial fibrillation. We’ve done this. Old news. But this July, 2019, we’re dealing with cardiac ascites, where an excess of fluid builds up in the abdomen and around the heart. Why? A weakening heart.
The fix: sodium restriction and diuretics. The key: not too wet, not too dry. In trying to find that balance, Phil got too dry. His potassium levels were through the roof. He needed several medical cocktails to bring down his K. A few weeks ago he went into kidney failure. He was taking prescription diuretics and didn’t have to pee. His kidneys stopped functioning. He was rushed to the hospital, the only available bed in the pediatric ER, where I found him.
Today, I’m writing this from the Au Bon Pain hospital garden, with Phil upstairs having a cardioMEMS device implanted into one side of his heart. The device measures changes in pulmonary artery pressure, which are a surrogate measure for fluid retention in the lungs due to worsening heart failure conditions. The system will allow Phil to transmit pulmonary artery pressure data from his pillow to his doctors, who then manage appropriate medication changes to reduce the likelihood of hospitalization and improve survival.
This is all the clinical, the transactions. The emotions have been bloated and heavy, red and angry. It hasn’t been pretty at our house. Scared as hell. Terrified. He doesn’t say as much, but you know. When the doctor mentioned the possibility of a heart transplant, Phil wouldn’t listen. I’ve never seen him as scared as when he said it to me. So of course, things have been stressful. But, he’s in good hands today. And mine are about to be clasped together, asking that the universe align for smooth sailing ahead.
UPDATE: I just got a call from the nurses. Once they were in there, the doctor felt there was a need to check out the other side of his heart. This happens every time they’re inside the man. They always find something else that needs fixing. This actually pleases me. One less thing for me to worry about. Now they’ll get both sides of his heart, just like I do.
UPDATE 2: All went smoothly, and he’s now home. He was told not to lift anything heavier than 10 lbs. for the next two weeks, so I told him masturbation is out. Thanks for all the messages and prayers. It always feels good to know your community has your back!
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I’m sorry Stephanie! I know the fear and pain your feeling, I too suffer from a weak heart! lot of life changes and higher ending action has helped
Improve my heart function. Still love in fear ,
Not fun! Hope he starts feeling better soon
Sorry I didn’t know about this till just now. I would have come and sat with you. I know all too much about heart failure and everything you speak of. Yes we got your back and front for that matter. Big hugs, geez you’ve been through a lot and still look and speak as if nothing traumatic is going on. You’re one tough cookie Stephanie Klein xoxo
Oh, Stephanie! I am so very sorry you are going through this! What a horrific ordeal! Poor Phil! Praying the doctors are able to help him. My brother in law had a heart transplant at Columbia Pres. They were incredible. Holding you all in my heart.
Been following since the beginning- prayers for you all ❤️
Oh my God Stephanie! I’m so sorry to hear this. As you know I totally understand the stress you and your family are feeling… I’m sending love and prayers for Phil’s total recovery! ❤️❤️ Please let me know if there is anything I could help you with. I’m just a phone call away❤️
So sorry that you and Phil are going through this. My prayers and heart is with you all. I’m sending you love. I’m going to pray VERY hard for Phil’s health to get better.
My thoughts are with you, Stephanie! I’ve been reading and following Phil’s story from day one. Hoping his heart mends, little by little and piece by piece.
Thinking of you guys and sending up lots of prayers for Phil and the doctors to get him back on his feet.
Hang in there, Stephanie. Phil is a good man and can handle this. Wishing him a full and speedy recovery.
Gary & Sherri Davis
Your friends from the Members Bar
Barton Creek Country Club
Austin, TX
Oh yes, Stephanie and Phil were so sweet and FUN to talk to at the BCC that evening we first met and always hoped to see them again the next time we went in to have a drink and dinner. If we were lucky, there they would be to greet us with a big smile and an adventurous tales went back and forth. We always went home with a smile on our face and joyful to be around younger folks to laugh with…and didn’t make us feel “old” We learned a lot from you both and inspired us to.stay young…er.. as long.as.possinle
Phil, you is strong
You is smart
And you is important :-) to all of us! Love ya!
Stephanie. Lynne’s not on FB but I sent her the article and she asked me to tell you your in her thoughts and prayers
Oh wow that is a lot to take in and manage. Sending you love and light while you both figure this out.
Oh Stephanie! This breaks MY heart reading this… I’ve been following you and your blog since you just gave birth to your kiddos. I’m a big fan of your style of writing and your sense of humor. Sending healing thoughts and virtual hugs to you ALL.
-from one of your fans…
Stephanie, my heart is with you and with Phil. I went through double bypass in 2004 with my husband and then a heart attack in 2015. No one can really understand your experience but we can love you as you go through it.
My sweet Stephanie, my thoughts and prayers are with you and your family . I hope the doctors will help him with all his issues and he can sail home .
Dear Stephanie
Our prayers are with you and your family. Wishing Phil a very speedy recovery. and you the strength to continue on.
All the best
Hugs from the Kaim family!! You’re in our thoughts. I will binge eat for you if you want Saying prayers!
I’m somewhat lost for words. I pray for him , you and the kids.
Hope he recovers soon. It is admirable that amidst the chaos, you find spaces to share your hard lived lessons. Please remember that you are not alone.
Stephanie, Stephanie, Stephanie….I didn’t know anything about this until now. I’m in NY and was going to see about getting together, but whoa, what an ordeal you must be going through. Yes, you said that some of Phil’s experiences have kept this time from being shocking, but still, this kind of thing can be traumatizing on some many levels even if you think you are weathered with the knowledge that Phil has had some health issues with his heart. My heart goes out to you and to Phil. You will be in my thoughts throughout every day. If you ever want to talk, you have my number. My love to you both.
Stephanie, I’m so sorry to hear that you and your family have any sadness. Love that you still thought to “Phil us in!” I love your romantic and playful side: “Now they’ll get both sides of his heart, just like I do.” Just know my heart is with you both and always wish you and your loved ones the best! ❤️Rita
It all just sucks. Can’t manage to tie a bow on it tonight. I’m sorry.
Sending healing prayers. Let us know if you need anything. We love Phil
You Phil and family are all in my thoughts for a full and complete recovery. How scary for you all. Love from Austin
Stephanie – so sorry that you and Phil are going thru this. I am in a similar situation. My husband has an ICD, has had 2 cardioversions, an ablation, hospitalized for CHF twice and we spent Thursday in the ER. They are talking bi-ventricle pacemaker and transplant. The latter is something I was not able to even verbalize for 2 months. He has lost 35 pounds without trying and is a shadow of the man I married 3 years ago. Its incredibly scary because he already is in stage 2 kidney disease and the high dose of lasik is going to send his kidneys further into failure. It’s been a rough 2 years for us. I feel your pain. I have always felt a connection with you but now even more so. Wishing you strength.
Stephanie, I am so sorry, I didn’t know. My thoughts and prayers are with you and your family. My love is surrounding you and will always be there. Bobbi
You are all in our prayers!!
Sending all the good energy from Ireland to you and Phil. Long, long time reader and admirer of your writing. I literally randomly thought of you today wondering about your blog and then – this. Thank you for sharing and your writing shines even ( or especially) at times like this.
Stephanie,
My Dad had a heart transplant in ’86 at the age of 52. 2nd person ever at Columbia Presbyterian to do so. It gave him new life. ..no more shortness of breadth, was full of energy, felt fully reinvigorated. Was for the most part experimental back then, but now, 20+ years later, its still major surgery of course, but relatively common. The new heart gave my Dad 4 more years after surgery, which in those days was fairly long….and those 4 years were amazing! Complications however arose from unrelated lung issues and problems with arteries, valves, etc. I was too young to understand it all, and won’t ever, but this post brought back those memories.
What your kids are exposed to and dealing with ( a father with health issues) is something I’ve dealt with my entire youth till my early 20’s. I can fully relate. Couple that with my Mom who passed away 4 years after my father with breast cancer. I feel for you, for your kids, and hope and wish the best for you and Phil.
Dear Stephanie,
Nothing tugs at your emotions more than a loved one that has severe medical issues, Lynn and I both know what your going through, your mind going in a thousand directions,trying to decipher what the Doctors say,trying to figure out whats best,not to mention the usual stress of taking care of a home,kids ,jobs, bills etc, to this end, I’d like to add our support, If you need help, please let us know, Even if its only to vent, Having gone through these type of issues with both parents at the same time, I know what its like to feel like your falling from the sky without a parachute,Thankfully Lynn was there to catch me,,so if you need, we will catch you too
prayers for a speedy recovery
Charlie and Lynn
My Dear Stephanie, I am so sorry to hear what you and your Family are going thru. Thru all your problems , You were willing to help me. God Bless All of you. Love & Prayers Angelica
Courage and strength, sweet friend. I’m so sorry you’re going through this. You’re in my thoughts.
Prayers from a blog reader – better health for Phil, strength and comfort for all of you. xo ~suburbanmom2
Is there any update on Phil?
I know several who have had heart transplants and changed their lives for the better. This is a chance at a normal life, or as close to it as you can get with that kind of heart disease. Wishing you and Phil all the best.
Hey Stephanie, so sorry to hear about this. My dad has been very close to heart failure. He was treated at Saint Francis Hospital in Port Washington New York for triple bypass and then had a stent put in a few weeks ago through appointment surgery. My uncle passed away of this in 2012 and my cousin was a freshman in high school, she’s in college and thinks about her dad in heaven to this day. I hope Phil goes through a speedy recovery at this time. By being said this is very impressive and you are very brave. Good job and good luck. My thoughts and prayers are with you!
A long time blog reader and fan – who randomly looked up your blog after a long silence. I am sorry to read about Phil. I hope things are now stable and you are both able to lean into each other for strength to get through this. Hugs to your children. I miss your posts. Take care of you during this tough time.