Prognosis and Emotions

Monday night was difficult because I shared my story with friends and family.  I was unsure whether I wanted to because this is supposed to be a happy time in my life and I didn't want people to feel sorry for me.  Although my news made some people sad, they were encouraging and I appreciate all the prayers and support.  It was also a sad night because I read about a mother my age, 38 weeks pregnant with her third child, that passed away unexpectedly less than two weeks before my Lovebug was born.  According to the Houston Chronicle article, she died of PPCM which she did not know she had.

I woke up the next morning extremely grateful.  I think I had PPCM for a while before it was diagnosed.  I remember being short of breath before my trip.  I am sure I thought it was nothing to worry about.  I even found it hard to let Lovebug lie down on my chest and I didn't suspect anything at this point either.  I am grateful that my symptoms bothered me to the point that I insisted on finding out exactly what was wrong with me.  It’s scary to think what could have happened if I had gone home with my inhaler and waited two weeks to see if it helped.  BUT I didn't and I get to be here with my family and every day that I am with them I am blessed.

Prognosis and Emotions

So, the first thing I did after diagnosis is google mortality of congestive heart failure and I found the CDC Heart Failure Fact Sheet.  According to this sheet, the about 50% of those who develop hear failure die within 5 years of diagnosis.  I immediately had a meltdown.  I could only have five years with my Lovebug.  Why was this happening to me? I had just become a mom and I have the most beautiful baby girl that needs me.  Will I get to see her grow up?

Then I did a little more research specifically regarding mortality and PPCM.  I still don't know what the right answer is because I've read statistics from several studies and they all vary.  Many estimate that 50% of women recover, 20-30% improve and the rest need a transplant or die.  Others estimate that the mortality rate is 1%, another 1% require transplants, and 75-90% recover.  The best outcomes are usually seen in women with an EF greater than 30%.  That doesn't mean that it’s impossible for me to recover but it is less likely.  Fortunately, I have heard stories from women who fully recovered that had 10% and 15% EFs at diagnosis.  Most importantly, even if I don't recover, there is a good chance that I can improve and manage PPCM while on meds.  For now, it’s one day at a time.  I wear my life vest, take my meds and spend as much time as I can with my family.

Further, it is estimated that 20% of post-PPCM pregnancies after a full recovery result in a relapse.  It is also advised that women who are not recovered (with an EF lower than 50% to 55%) avoid any subsequent pregnancies.  This is a little hard for me to deal with because baby number two was going to be our BOY (wishful thinking).  It is also very difficult to answer the questions, "When will you have your next one" or "How many more are you planning".  We just smile and say we don't know but the reality for now is there won't be baby number two.  Even if I recover, I am not sure I would want to risk relapse.  I would much rather be here for Lovebug and Sean.