First, let me bring half of you up to speed.

In 2004 I was diagnosed with cardiomyopathy while 22 weeks pregnant with my 3rd child.  My ejection fraction (EF) was 5% (normal is around 55%) and the cardiologist had no idea how I walked into his office that day.  He gave me the diagnosis and then sent me home with a pamphlet on end of life issues.  No kidding.

I spent the next month in the hospital with cardiologists and their fellows parading into my hospital room saying things like, “oh good, you’re still here.” And, “Wow, you’re sitting up.”  Sometimes in the late, late or early, early hours of the day some (not all) of the L&D nurses would stop in to chat (because I was their only patient not in labor and able to carry on a conversation, I think) and tell me what was in my chart – what the doctors had talked about behind my back.  My cardiologists were very blunt with me – I would be transplanted.  Arrangements were made.  The delivery of my 12 week early daughter went without a hitch, though every possible contingency was planned for.

When delivery and the unbearable lightness of just being proved not to be too much for me to handle, I was eventually discharged from the hospital and  put in the care of one of the best cardiologists in  his field.  He immediately told me that I should expect to live no more than 5 years, 12 with transplant.  Each visit – first every month, then every three months, then twice a year – brought continued assertion that I would be transplanted.  The years came and went and my EF raised and fell and raised again, but the news didn’t change.  When I hit my 5 year mark in March of this year, the prognosis did not improve; sure, the new medications have bought you time, but they won’t buy you eternity.  The end is still the same, we just got worse at predicting the timing.

And I guess you can only hear this so many times before you believe it.  Resistance is futile.  I studied – learned all I could about transplant.  Actually, I learned enough to know that I do not want one.  It seemed to me that I’d be trading one disease for another.  The new disease promised a slow and painful death due to rejection or infection or cancer.  The one I already had would make me very sleepy and one day I just wouldn’t wake up.  Which would you choose?  So I continued to see my cardiologist – the chief of cardiac transplantation at Duke University, but my goal was always to lengthen the amount of time I had between the present and the inevitable – not to actually go through with a transplant.

And let me tell you, this took a toll on my marriage.  My husband viewed this as giving up.  He believes that if I cared about our family – about him – I would fight with every weapon in the arsenal, including transplantation.  That I would want to be here as long as possible, no matter the price.  And once the idea that I didn’t care entered his mind, it ate at him like Kierstie Alley at a midnight buffet.  Every thing I said or did, every plan I made was viewed through the eyes of contempt.  He resents me for giving up.  And from his perspective, why wouldn’t he?  After he spent so long caring for me, for our family, worrying about whether I’d live or die, and I was willing to just go without a fight?

The fists full of pills that I swallowed daily just to maintain the status quo, pushing through the fatigue just to put dinner on the table every night, enduring the implantation of an ICD (and subsequently the traumatic experience of a malfunction that caused inappropriate shocks) – none of that counted.  I think it would have, had it been viewed in the right context.  But it wasn’t.  In his mind, I was just waiting to die.

Of course, I had no idea any of this was going through his mind.  As the seriously ill often do, I turned inward and focused on myself.  I wasn’t aware of what he was feeling and he didn’t make an attempt to tell me.  So 3 weeks ago today (after having barely just moved to a new city) when he stepped out of the shower and, while still dripping, told me that he no longer wants to be married to me, I was stunned.  I am still reeling.  While he’s had years to let this anger completely destroy our marriage – well, it’s still brand new for me.  I’ve just been dumped in the icy waters of some horrible alternate reality.

And physically I didn’t handle this very well.  My symptoms increased; shortness of breath, fatigue, chest pain, palpitations.  My general practitioner thought that it could be anxiety, but since there’s no test for that, decided it would be prudent to do an echo cardiogram and look into the next most obvious source.  We learned that my EF had again dropped – this time back to 10%.  Additionally, there was a greater area of hypertrophy.  My Duke cardiologist immediately conferred with my new cardiologist – whom he trained under – at Johns Hopkins University.  Another echo was ordered and Mr. JHU Doctor felt that the muscle of the heart wall was too thin to attempt a biopsy.  He scheduled me to come in to his clinic sooner than originally planned and said we would discuss a plan of action then.

 Today was that appointment.

 I met with my new doctor at Johns Hopkins University (Chief of Clinical Cardiology) for the first time face to face.  We didn’t discuss doom and gloom.  He took a history, did an exam and sent me for another echo.

 Having seen my echo from 3 weeks ago, he didn’t trust what he saw on today’s echo – so he did another one – this time, himself.  And then he informed me that if not for the peculiar placement of the 4 ICD wires (something I will ask more about later), he wouldn’t believe he was looking at the same heart.

 My ejection fraction, ladies and gentlemen, is now 40-44%.  Wait.  No “.”  Make that a “!”.  Actually, make that “!!!!!!!!”.

 He said he believed in miracles.  He said he’s seen similar things happen in all his years of practice – but not often.  He gave several possible medical explanations, but then said again that he believes in miracles.  Then he said exactly what I needed to hear today; We won’t be transplanting this heart.

 I cried tears of joy.  He even spilled a few tears, too, when I told him what I’ve been told for the last 5 ½ years.  To him, I am not a chart.  I am not a heart.  I am a whole patient.  And he cared what cardiomyopathy has done to me, not just my organ.

 I will be going back next week for an Angio-CT.  And then I’ll be going back in 3 months for another echo.  And then again 3 months after that.

 I know I’m not ‘normal.’  But I’m damn close.  I feel like I have been set free.  No, it’s not in time to save my marriage.  But it is just in time to save me.