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Monday, February 10, 2014

Mark's Perspective - Waiting for a Heart

I’ve had so many dear friends reach out since my latest heart challenge.  I’m overwhelmed with the care and concern so many of you have expressed both in words and actions.  All I can say is “thanks” but it doesn’t seem near enough.

You’ve probably kept up with my “progress” through a couple of posts Jami took the time to create that helped folks stay current and get a sense of what my whole family has been going through since this started. 

Here are some touch points and reflections along the way from my perspective.
Our Christmas break in Florida was the first indication that things had changed with my heart, and that I was probably going to find myself on a different path than I had been on since being diagnosed 7 years ago with dilated cardiomyopathy.  Once we were back home I went to my cardiologist that confirmed my symptoms indicated a turn for the worse.  This was not a surprise to me or my cardiologist.  A crude but accurate analogy would be to compare my heart to a car you might own with 200k miles… you keep topping off the oil and just drive it into the ground.  I guess on my best days I hoped that I was special or uniquely equipped to sustain a bad heart into my 70s and that would be good enough.  I don’t think my cardiologist ever believed I would get to 7 years without seeing the heart fail completely and require a transplant.  He only expected my to last 2 years with heart as badly damaged as it is.  To give you some perspective heart health is in part measured by it’s ejection fraction, the force it generate for push blood out and through the body. Normal EF is around 50… mine is probably around 15.  One of the things I’m thankful for is my small size.  I not only fit easily into my MINI Cooper… but my heart doesn’t need to work nearly as hard to move the blood around.

Jami and I were as ready as we could be for our next visit with a transplant cardiologist… we weren’t expecting her to immediately check me into the ICU at the end of appointment.  She not only confirmed me needing a new heart she was very concerned that my heart was near imminent failure.
Next thing I know Jami is saying “goodbye” and leaving the ICU to somehow break this news to our daughters.  Nurses and doctors kept visiting taking blood, inserting IVs, checking vitals, and making decisions about the cocktail of drugs that might reverse my downward spiral.  Around midnight the flurry of activity faded.  It was dark and quiet except for the beeping sensors monitoring my vitals.  I laid there and cried for a long time.

I having nothing but good to say about the care I received.  The nurses and doctors were all very empathetic and caring.  But the ICU is a place to keep from dying not a place to really start healing.
The med cocktail worked and I showed a lot of improvement.  I was taken off nitroprusside a drug defined as a vasodilator taken to lower my blood pressure.  I’ll remember the wicked headaches, nausea and vomiting.  The irony was my medication took a U-turn and now I was taking dobutamine intended to constrict my heart and actually make it work harder.  The doctors were trying to figure out how to sustain my vital organs while I waited for a transplant.  The good news was that I responded so well to the drug they were able to lower the dosage to threshold that started a new conversation on whether or not I could actually live with an IV of dobutamine at home as I waited on the list.

At first Jami and I were devastated that I would enter the list as a 1A candidate (top of the list) vs 1B waiting at home.  In hindsight it has been a real gift.  I can’t tell you how thankful I am to be home and semi-mobile.  I’m able to get out each day for coffee, go to Mass.  I’m sporting a stylish Napoleon Dynamite-style fanny pack with my meds and pump… no room for tots, and I can’t travel more than 2 hours from the hospital, but I’m so thankful to be at home with my family and access to friends that I consider it a minor inconvenience.

I’ll try to use this blog to help me make sense of my experience and all the scary, crazy and good things that have happened and are happening, and give my friends a glimpse into our new normal.
More to come…

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