Sunday, November 14, 2010


Original Date: February 5, 2010 
At PHA  they have a section called “Journeys” ( It is a place where patients, families, and caregivers tell their stories. I’ve always found the name to be quite fitting. After all, from the second you get your diagnosis it is a life-long (and life-changing) journey. We all travel it differently, but in other ways end up in very much the same place… hospitals, doctors, tests, more tests, medication, and more and more medication.

Well, the next step in my journey is here, and (surprise, surprise) it was the result of a one-day stint in the hospital, a very busy but very attentive doctor, a crappy test (see former posts on Right Heart Catheters), and now… more medication.

The time has come for the next step – where PH inevitably seems to lead – what we’ve been doing isn’t working as well as we might hope, so let’s try something new, something more. I am about to embark into the world of Tyvaso – an inhaled medication taken 3 to 4 times a day. We’re adding this to my other therapies, currently all pills, bringing the grand total of medications up to somewhere in the $200,000 per year mark and a total of nine doses of therapy a day. Oh, how my insurance company must love me!!

Tyvaso is new to the market as of this past September, and I’ll be the first in my clinic to go on it. In some ways it isn’t such a big deal. An inhaled medication is easier than a continuous IV one in many ways. And the number of treatments and time it takes for each treatment is about half that of an older inhaled med that is available. I’ve been feeling like crap for the last month, signs of PH I never had cropping up at the most inconvenient times (all times to feel your PH are inconvenient). So, I know it is time, and I’m pretty much at peace with that.

Yet, I just spent about a week being pretty messed up about all this – it is very hard to accept that PH is doing just what they say it will. Then I feel like some sort of hypocrite because I preach the positive all the time… but I’m still scared silly sometimes. And really angry, and really confused.  It reminds me of Hebrew Block Logic – a decidedly non-Western way of thinking. This was a concept I was introduced to in college that has always stuck with me. My professor, Dr. Marv Wilson, put it this way:

“Concepts were expressed in self-contained units or blocks of thought. These blocks did not necessarily fit together in any obviously rational or harmonious pattern, particularly when one block represented the human perspective on truth and the other represented the divine. This way of thinking created a propensity for paradox, antimony, or apparent contradiction, as one block stood in tension — and often illogical relation — to the other. Hence, polarity of thought or dialectic often characterized block logic….Consideration of certain forms of block logic may give one the impression that divine sovereignty and human responsibility were incompatible. The Hebrews, however, sense no violation of their freedom as they accomplish God’s purposes”

He later goes on to call this whole thing a “dynamic tension“. How fitting.

Miraculously, I found this quote online when trying to find a source for Block Logic – and it just fits so darn perfectly! Never mind the source – I know nothing about it or anything else they say, but I’ll post it here in effort to be a responsible writer and so I don’t have to go digging through dusty boxes for the actual text – which all these years later still hangs in the back of my mind. Good to know my education stuck!:

So… I’ll tap into my Jewish roots here. I can be 100% full of faith in a cure and 100% human in how I feel about the whole danged thing happening to me. My human responsibility is to move forward with the treatments I need while I wait for the divine sovereignty of a cure. Okay. That works. This past week I found myself asking for “the peace that surpasses understanding” (Philippians 4:7) and I think I just found it.

By the way – speaking of Journeys – have you heard about the big one in the PH world yet? Please check it out and support me while I support the cause:

No comments:

Post a Comment