Heart of Darkness

Last Wednesday, 6/18/03, I had a right heart catheterization procedure at the U.W. Medical Center to measure pulmonary pressure. I have been diagnosed with pulmonary hypertension.

The catheterization was initiated to measure how my heart is functioning. A Swan-Ganz catheter was placed in my aorta (juglar) vein in the neck and "floated" (or rammed) down the aorta into my heart chamber to measure pressure inside the heart chambers and assess output-blood flow-- of the heart.

My pulmonary pressure was at 91 with normal pressure at around 30. The Doctor described the situation as "serious". He informed me that he would definitely not recommed me for a liver transplant at this time as he was concerned that I would not be able to live through the trauma of a transplant with pressure readings this high.

Plan B is that I will return to the hospital in two weeks time to undergo the installation of a drip into a vein just beneath my collar bone which will constantly administer a drug called "Flowlan" which is comparatively new, but has had a 85% success rate to date in bringing down pulmonary pressures. If that is successful after 4-6 months, then the Doctor will recommend me for a liver transplant. They will also place the catheter into my aorta again and suture it in place so that they can frequently moniter pulmonary pressure. I will have a tube running from my drip down to a med-pac strapped around my waist which will contain the Flowlan medication. I will mix the medication at home every day, which sounds quite complicated and I will need a caregiver or assistant who is my "mixing partner", who can take over preparing the daily medication if I should become too sick to mix it my self. I've always wanted my own personal assistant, but not exactly in this form.

Although this recent news was very disappointing, I remain upbeat and optimistic. Surrounded by some very incredible friends and support here in the Olympia and throughout the country. I have been rolling with the punches with this situation for 10 years now and have come through some difficult hurdles. Nothing's going to stop me from forging ahead. Whimpering fearlessly!

Ironically, my head and heart-at least the emotional and spiritual part-are in the best shape ever. I am in my center; balanced and serene. Beauty walks before me, Beauty walks beside me, Beauty walks behind me. And love is all around me.

For perspective, I have recently viewed the four-part series with Bill Moyers on Dying on Your Own Terms. What an incredible work of compassion. It's not at all about doom and gloom. It's about bringing the illumination of death out of the closet and empowering terminally ill patients to pass through this transition state with Joy, Love and Dignity. Our culture is in total denial regarding this and I now see that whatever comes to pass with my healing, I would like to bring death out of the closet, celebrate it and become it's greatest advocate as a tranformative process. Death completes the Sacred Hoop of Life.

Don't be Afraid.

Love, Simon