Wednesday, November 24, 2010

Happy Thanksgiving!

I can hardly believe that the holiday season is upon us.  When I first came home from the hospital, the days dragged by in slow succession.  This past month, as I've tried (unsuccessfully) to catch up a little, it seems the days went by in a blink.

My amazing tennis team, with whom I have not been able to play for over 2 years now, had a 100 days party for me!  I was able to make my first "public" appearance in--if not a crowd--at least an intimate group of healthy people.  It was such fun to see my good friends and catch up on everything I've seemed to have missed of late.

I've taken in a boarder, of sorts... a friend called with stories of a beautiful homeless horse; so, unable to resist, I welcomed him into my life... if only for a while.  He's in the photo on this page, with my trainer aboard.  We will see.  It's the first truly crazy, impulsive, shall we say "Holly-thing" I've done in several years.  It felt GREAT!  The excitement of seeing him come in off a trailer in the dark, unsure what color he might be, and then riding him these last few days and seeing what a gem he is... it makes me feel young at heart.

The only thing that doesn't make me feel young at heart these days is my dang heart.  I saw my pulmonologist today to review the latest echocardiogram.  She suggested a referral to the heart failure clinic.  My heart is showing "global hypokinesis" and a low "ejection fraction."  Although initially assumed that these issues were related to the lung disease, and may still be, several doctors have now suggested that scleroderma is in my heart causing the same stiffening of the tissues.  This does not allow the heart to relax properly when it needs to... like... every beat.  So, this can lead the heart to fail as a pump.  Medications could be changed, things could be addressed, but not with impulsive Holly (who needs to get right back to the stable) driving this car.

I talked my doctor into another 4 month check.  These data seem pretty similar to August, and I still have to hope that the hit my heart took during transplant will recover.  After all I went through to regain my health, I just need to keep hoping that the heart can bounce back.  It got hit from all sides--high pulmonary pressures, interstitial lung disease, huge chemo doses, and now this scleroderma infiltration (presumed) causing diastolic dysfunction.

But my heart told me what it needs.  It just needs more time at the stables, to let go of it all and do some riding.  :)

Happy Thanksgiving to all.  I wish I could be with you, but know you have my love, and that you are the blessings I count on this day and every day.

Wednesday, November 10, 2010

Life to the Theme From Star Wars

It's a typical evening at the H-W home.  Luke and Jake are practicing piano.  Jake is learning... you guessed it... the Theme from Star Wars, which I have come to know and love.  :)

It's wonderful for me to see life returning to its usual rhythm, with its usual ebbs and flows.  I feel such an incredible weight off of my shoulders now that the stem cell transplant is behind me.  I know that I have done everything that I can do medically to overcome this disease, so I am freed from the worry and angst of what I should (or shouldn't) do next.  I still take my handfuls of pills each day, and still have plenty of symptoms, but that nagging feeling of impending doom just seems to have floated away.

It may have found you, or someone else I know and love.  Possibly the worst thing about having scleroderma is the conversation I have all too often... it always begins with, "I know this doesn't compare to what you are going through..." and ends in any number of personal crises.  I am sorry if I haven't been the kind of friend and listener I once was, but I promise--I'm back.  Bring it on.  If I can help, if you need a shoulder, or just a good ear, please let me know.

And for those who haven't seen me lately, I'm finally growing some hair!  And eyebrows!  And eyelashes!  I don't have a real photo, so my Mac Photo Booth will have to do for tonight.