Our Journeys

Patient story

"I am at sea within a horrendous storm; she is a doozy, her name is PH and she can be a violent one."

- Mack McCarthy

Mack McCarthy

As I lay upon my pillow at peace like a baby lamb in no pain, my PH lays in wait like a Tigress waits for her prey. I stir; she twitches in anticipation. I wake; she strikes like a bolt of lightning and thunder at the same time. She tears at my lungs like nails down a chalk board and roars out at me to say I am still here, you cannot escape my wrath. I stand and cringe, then, when done with my bathroom visit, I weigh myself and she slaps me so that I am dizzy and nearly fall. I slowly go to the kitchen table as she takes my morning breath away. I sit, and with her still tearing at my lungs, I am nauseous from the pain. I eat to calm my stomach. I take my morning medication and she slowly releases her death grip on me as the medication takes effect. I pray I can make it through another day. She stays with me throughout the day like a cat playing with a mouse. The day is ended, it is time to rest. I take my sleeping pill and fall into a restful sleep as she waits, grumbling in her throat like a purring kitten waiting for another day.

Mack and MaryIn March 2011, Mack went to a doctor appointment and found out that he had pulmonary edema. In an email he commented that fluid retention is a major problem for a lot of PH patients and wrote the following about the experience:

I am at sea within a horrendous storm; she is a doozy, her name is PH and she can be a violent one. Her waves toss me up and down like children on a seesaw on a playground. Suddenly I have been hit by a powerful wave; like the force of two locomotives colliding! I am forced overboard into her rough seas and under water and I struggle to get to the surface, my lungs have filled up with water. With great effort I make it to the surface; I fight to breath, she has done her damage as the water overtakes my body like an invading army; I swell and continue to struggle to breath. Lord calm these seas I have been caught in and let me breathe.

Final Hike – written January 2012

I am on the trailhead called PH; what a hike she has been; real doozy. I’m on a wicked switchback as I finish the final hike. Each turn has created new problems, which led to heart failure then kidney failure and new trouble and more problems. In October I reached a precipice and then took a bearing to what way is the best path to end this hike for me with dignity. My bearing pointed me to the Hospice Care trail and get off the switchback, which had no quality of life. This Hosp ice trail has more dignity with more comfort and quality of life. Like a slow drip of a faucet, my life is slipping slowly away like a consistent drip of a leaky faucet as I finish this hike. As I take my last steps, I will enjoy life the best I can with my partner who has supported me with all the care and love she could muster to help me with this wicked hike. She is my sunshine who comforts me.

 

 

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NORD

The National Organization for Rare Disorders (NORD) awarded PHA the Abbey S. Meyers Leadership Award in 2012 for outstanding service to PHA members in advocacy, education and other key areas.