Rest in Peace

I've been the leader for our area’s Pulmonary Hypertension support group for the past couple years.  Some of my duties include organizing our meetings each month; lining up sponsors for food; arranging speakers to address a variety of topics, like emergency preparedness, low sodium nutrition, PH basics, pulmonary rehabilitation.  Some of the members have Idiopathic Pulmonary Arterial Hypertension like me.  Some have PH secondary to some other disease, like scleroderma or other lung diseases – their primary disease often is manageable but it’s the PH that’s causing their health to decline rapidly.  Some of us are on oxygen full time, some only while sleeping, some only as needed, some not at all.  We range in age from our 30s to 80s.  We all have families and caregivers and lots of doctor appointments.  We are often tired and find frustration in many things, including trying to explain to others how serious of a condition this is when “we don’t look sick.”  So we come together every couple months to learn, to share and to listen.

It’s been very fulfilling and I’ve become close with several of the members.  The downside of a group like this is there’s an inevitability we all must face –we’re all sick with a progressive disease that, you know, progresses.  And the worst part of being the leader is passing along the news to fellow members that a friend has died.  Last week, we lost Eileen.  I hate to say it but “she didn’t look sick.” She was never without a smile and full of empathy and enthusiasm.  She was still working (26 years!) as a cashier at a grocery store.  She had a husband and three kids (the youngest in high school) and was busy planning a Mediterranean cruise with her best friend.  She was on a drug trial for a PH medicine and it was working out really well for her (this is the oral version of Remodulin, the same medicine that I take intravenously), though she was often stressed about how she would afford the medicine when the trial was over.

It was shocking to hear this news, after seeing her looking and acting vibrant at our January meeting. What we’ve heard, though, is that her death can’t be attributed directly to PH – she was (relatively) healthy.  It’s a good recalibration of my mindset to remember that many (most?) deaths come as a shock: you don’t have to have a diagnosed disease to just up and die.  I’ve always said that my fairly positive attitude comes from thinking that I could get hit by a bus tomorrow so why spend too much time worrying about this disease…but I think I’ve gotten away from the truth of that statement.  This past year has been full of me feeling sicker, being told by my medical professionals that my clock is ticking down and that it’s time to move on to the last resort, a lung transplant.  I’ve been so concerned with how to prolong my life that I’m not setting goals (i.e. I still haven’t saved Darfur).  I’ve been moving away from commitments instead of taking more on and though that’s a wise decision on my part (I think “overdoing it” is partly responsible for my dip in health last year and I’ve made changes that allow me to rest on a more proactive, rather than reactive, basis), I also need to keep moving forward. 

It’s easy to say all this when I’m feeling fine – it’s almost startling to me that I feel way better today than I did a year ago.  But probably not better than two years ago so yes, I know I need to keep it in mind that things can change on a dime.  And as Eileen’s death has reminded me, anyone can take leave of this world suddenly, diagnosed disease or not.   Eileen would love to know that she’s served as an inspiration to live life fully. 

Picture of the SnoKing (formerly Everett) PH Support Group in November 2010. Eileen is in the purple shirt, on the right.  I am a giant.