How I became the Funky Heart

It’s a pretty interesting story. You see, I was born on another planet. Right before the planet self destructed, my father placed me in a spaceship and sent me towards Earth –

No, wait a minute, that’s someone else’s story. Sorry about that! This is more of a Dragnet type of story… the names have been changed to protect the innocent.

I had gone to The University of Alabama at Birmingham (UAB) Hospital to have the Fontan procedure, and it had gone wrong. Scar tissue normally forms over your heart after you have open heart surgery, and surgical teams know that and expect it. I had had two previous heart surgeries, so I am sure they felt like there was a good chance that I could have more than usual. But what they didn’t know was that there was a lot more scar tissue than normal, and that it had formed adhesions with the back of my breastbone.

So when they split my ribcage that scar tissue tore, and blood went everywhere. The surgery was canceled and I needed 20+ units of blood to survive the operation. So even though I never had the Fontan, I got all the pain associated with having heart surgery.

*Sigh* The fun was just beginning. I got better and was sent home. I was recovering but the incision wasn’t healing, and finally began to leak pus. Back to the local hospital, where I was quickly transferred to a larger hospital. There the Cardiological team studied me, and finally said “Yep! It’s infected!”

OK, doc, what do we do?

Debridement!

Wikipedia says that debridement is “the medical removal of a patients dead, damaged, or infected tissue to improve the healing potential of the remaining healthy tissue.” How that works in the real world is they sedate you, haul you down to the Operating Room, and scrape out the infected tissue. It’s not fun.

So I was debrided. They re-opened my incision, scraped the dead tissue out, packed the incision with gauze and covered me with a large bandage, sent me for a short stay in Recovery and then back to my room. And not knowing any better, I went along with this.

Important Safety Tip: For a Debridement to work, you’ve got to get all of the dead and infected tissue out. The best way to do this is to 1) Scrape like a maniac while in the Operating Room; and 2) give the patient antibiotics. The problem is, my crack team of local cardiologists didn’t think the antibiotics were necessary. So what could have taken one trip to the Operating Room turned into three.

I was not happy. They opened up my bandages and peeled back the gauze every day, and when they said “Looks like we have to debride again” I literally cried. What in the world was going on here? Why couldn’t I get any better?

And this time, there was no safety in numbers – I had a Cardiological Service, with several doctors who rotated. I saw a different doctor every day, and every one of them had a different opinion:

“I think we can get you out of here by the end of the week.”

“Two weeks, tops.”

“At least two more weeks.”

“I don’t feel comfortable making a prediction yet.”

After that third debridment we had a late night visitor. A nurse came in, made small talk with Daddy and I, and finally said, “Most of the nurses think you need to seriously think about going somewhere else.”

Now THAT is a sign – saying such a thing can get a nurse fired, so when they get to the point that they are advising the patient to grab his stuff and go, listen carefully. So Daddy called the Cardiologists at UAB the next day. They took care of all the arrangements to return and have me admitted.

The first UAB doctor I saw was not a Cardiologist, but a Plastic Surgeon. “Here’s the plan,” he said after he examined me. “We’re going to start you some antibiotics and run them around the clock. I want you to drink a serving of Ensure at each meal and before bed to promote tissue growth. And then I am going to take a long weekend.”

Huh?

“My daughter is graduating college, so I’ll be out of town. And it’ll take some time to see if the antibiotics and the Ensure are working. I’ll examine you when I return and we’ll plan what to do then.”

So the time passed, and Tuesday morning, as promised, he was back and examined me again. “It’s going to take a while to heal, but we’re on our way. I don’t see the need to do any more debridements.”

In two days I was on the way home. I spent six days in Alabama, while my “adventure” at the other hospital had cost me seven weeks. And I came out knowing that the only one looking out for me all the time was – me! So I needed to stop being passive and start taking an active part of my health care.

And that’s where the Funky Heart was born.

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11 Responses to “How I became the Funky Heart”

  1. Casey's Mom Says:

    Wow, that does not sound like fun…but thanks for sharing! How old were you at the time of this episode???

    • Steve Says:

      Twenty Two – I graduated College about a week before, almost had the Fontan on May 31 (Dad’s Birthday) and had the infection nearly all summer.

  2. carolyn compton Says:

    Thankyou for sharing this. I really appreciate that you hold back on your stories and let little bits leak out. I can see a book on your thoughts and stories…about yourself and others. I am looking forward to the one you’ve contributed to. You are a writer, no doubt.

    My little 2 year old heart boy, Clarence, smacked his chin tonight…we were all in the shower, he’d left a little deposit in the bath and while i was cleaning that out, he and his twin brother Fergus had an altercation in the shower, he slips; cuts his chin. We ended up at the local GP’s at 8pm. He needed “stitches” but there is a new glue that is fantastic, so he had that. We were in and out in 1/2 an hour.

    It is so different to some of the care we have had on this local level, (usually from receptionist decisions) and all it took was a doctor who saw that it would take 15 minutes out of his day OR hours out of our day. Care is just that, isn’t it? Care. Sounds like your nurse knew more about care than the others.

  3. mina Says:

    I am glad you finally got the care you needed, and a lot of credit goes to the nurses who put their jobs on the line and gave you advice. We feel so blessed to be geographically close to UAB; that is where my son’s broken heart was repaired.

  4. Jen Says:

    Hi Steve – too bad they didn’t have Repel-CV back then (they didn’t for my son’s surgery either). Its a new film that is put onto the heart to prevent adhesions – you may want to google it.

    Love your blog.

    Jen
    Mom to Roman, 20 months old, DORV, single right ventricle, TGA, awaiting Fontan in 2010.

  5. Jen Heath Says:

    Ughhhh… My daughter Gracie has been through two sternal wound infections. The first one landed Gracie six weeks fighting the infection with a wound vac in the ICU. The second sternal wound infection landed poor Gracie an additional three weeks of hospitalization in the ICU with an irrigation system. Gracie has the Fontan coming up in two years, and the concern is that her sternum is so compromised at this point that she may always have to deal with an infection after surgery. What type of infection did you have? Gracie’s was serratia (gram negative bacteria). Have you had heart surgery after that episode, and if so did the infection come back?
    Thanks! Jen, Gracie’s mom
    jenpaulgrace.blogspot.com

  6. Andrea Himmelberger Says:

    I love that story! Well, not the part about getting reopened unnecessarily or 7 additional weeks in the hospital, but the part about being your own advocate and taking control! I think too many of us instantly fall in love with our surgeons and never even consider that there might be someone better qualified or more experienced than the person at the hospital we happen to live closest to! Thanks for using your story to teach us to be our own advocates!

    Drew had quite the adventure with a sternal wound infection last year. Six weeks of some hard core IV antibiotics, a couple of debridements and twice daily packed dressing changes (which is the only part he remembers and doesn’t like) and we got out of there.

  7. Amanda (Liam's Mom) Says:

    So, you’ve never had the Fontan? Infections are awful, Liam got one after his Fontan, the sternum actually separated in the wires and they had to go back in the OR to scrape and reset it. He was about 90 minutes from going septic when they got in there to irrigate his heart and he came out of that with 7 chest tubes and a chylothorax. We only had to stay in the hospital for three weeks after that, but he was on Vanco at home for six weks postop. We learned how to manage a picc line though – bonus!

    You’re so right about managing your care and advocating for yourself. Good for you for taking the best from that horrible experience. I really enjoy reading your blogs even if I have to catch up at times. Hope you enjoyed your trip to CO!

    Amanda
    PS – A Facebook quiz tells me I should live in Alabama – lol!

  8. Tina Says:

    I just found your blog and have enjoyed reading through your posts. They are quite entertaining. My son is a 14 year old chd survivor that was undiagnosed until he was 5 years old. When he has his surgery for his coarc
    we chose an epidural for pain relief. Since they entered through his left side for this surgery it is great for pain relief. He kept complaining that his back was hurting and they assured us it was not really hurting. Huh? How did they know? When they removed the epidural the wire was embedded in his back and actually bled when they pulled it off.it was this nice curly line on his back where the wire was taped to lay flat. I learned that day to listen to my child when he says he hurts. I was a newbie and have learned too much since then.
    We live in GA and traveled to Boston last year several times for him to have a stent placed in his aortic arch. His is way too small andprobably should have been repaired during the first surgery. Long story but all is well because he dropped 40 lbs after the procedure and feels better than he ever remember feeling in his life! Yay!

  9. Patients for a moment: First-Ever Edition « DUNCAN CROSS Says:

    […] at Adventures of a Funky Heart explains “How I Became the Funky Heart” – and how he learned the hard way to play an active part in his own care. In fact, this is a lesson […]

  10. Tori d Says:

    Hi im writing to you because i enjoy this website. I like to read about the other problems that these kids have. I have one myself , its called vsd. i am very fauned of this website. I enjoy all the videos that you post on this website.

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