I’m constantly looking back on my life trying to pin-point exactly when I started showing symptoms of pulmonary hypertension. When did I start feeling tired and fatigued?  When did I start gaining weight?  When did I start noticing the shortness of breath? These questions swirl through my mind all the time.  I’ll be doing something and randomly start questioning and wondering.

The problem is that there is no real answer.  There is no way to pin-point the exact day, or even month when the pressure started building in my pulmonary artery and the vessels in my lungs started shrinking. When I was first diagnosed my cardiologist told me that we can only make a best guess.

I know I was running regularly and exercising consistently through out 2001 and 2002 without problems.  I think I started slowing down around 2005 and progressively exercised less until about 2006 when I started noticing that I was tired easily.  It was around the Fall of 2006, soon after I switched jobs.  Carol speculated that perhaps one of the factors that lead me to quitting teaching was the strain it was having on my body and I wasn’t conscious of it at the time…

I started noticing the shortness of breath and weight gain around 2007.  In 2008 I first noticed the edema and went into the doctor that summer to figure out what was happening.  At that first office visit I learned that I had gained nearly 30 pounds over the last 6 months.  I knew I was gaining weight, but I didn’t know it was that quickly.  I never in a million years would have guessed that it was all water weight from left heart failure.

By this time I’m sure my PH was quite advanced.  It’s so crazy to me how the disease slowly progresses quietly in such a way that it was masked as just simply being out of shape and overweight.  Typical female stereotypes.  Who would think to test my heart?  Who thinks to get an echocardiogram as an initial evaluation tool for someone who’s overweight and out of breath upon activity?   I should have known something was seriously wrong when exercise and eating right did not help.

I often wonder what would have happened had I caught myself earlier.  What if I had gone to the doctor sooner?  What if I had paid more attention to what my body was telling me?  What if I, what if, what if?  Had I been diagnosed sooner when the PH wasn’t so advanced, would I still have had a transplant?  Would I be living as a PH patient on medication to control the symptoms?  Would I have eventually gone into cardiac arrest somewhere else?

There are days when I really miss my pre-PH life.  I miss the amazing feeling you get after finishing a good solid 5 mile run through the presidio on a beautiful San Francisco day.  I miss being able to pre-plan vacations and fun events without any worries about having to cancel last minute.  I miss feeling included.  I miss being able to go out on a whim without worrying about medication and germs.  I miss not depending on other people to help me with everyday life things.

Where is that old Susan who loved to run outdoors, the old Susan who hiked all over Mt. Tam and through the headlands with a bunch of 3rd graders, the old Susan who would go all around town despite parking and lines to find new places to eat, the old Susan who would take day trips all over the bay area on short notice just because it was a nice day?  I guess I’m still mourning that person.

Of all the unexpected things in the world the very last thing I would have imagined was to be diagnosed with idiopathic pulmonary hypertension – out of nowhere with no rhyme or reason.  Two in a million per year.  Really?!  What if I told you that you’ll wake up tomorrow and be diagnosed with an incurable disease that would change your life in a very short amount of time.  You would laugh it off as something ridiculous – that would never happen to you.  I was that person who would have said you were out of your mind, except that I was that two in a million.  Why?!

I know I’m very lucky to be alive.  I know I’m very fortunate to have had not only one transplant, but two.  I know that so many people waiting for lungs right now would love to be in my position.  I know what a fabulous support system I have.  I don’t take anything for granted, and I know that life is precious.  I truly do appreciate everything that has been done for me.  But sometimes, I really just miss the old Susan.  I suppose being on all kinds of medication and steroids that mess with your hormones doesn’t help either.

I do have good news to share. The IRS sent me a letter stating that I failed to claim a tax credit (!) so I’ll be getting more money back, my new sock club package came today, and on Thursday I’m going in for my first meeting with a physical therapist at Kaiser to start pulmonary rehabilitation.

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