The Black Cloud Lifted: Becky Mack
2015 was not a good year. Not a good year at all. “Annus horribilis,” as Queen Elizabeth would put it. Early in the year, I lost my husband to cancer, and a few months later I was diagnosed with pulmonary arterial hypertension (PAH). I was reeling. I was fortunate enough to be seen by the crack team at the University of California San Diego (UCSD) for the treatment of my PH, and was on autopilot for that whole first year or two.
Then it came time to reclaim my life, or what would be the new definition of my life. Single, alone, sick. I joined the Pulmonary Hypertension Association (PHA), found Team PHenomenal Hope, joined the local support group, and joined PH Facebook groups. When I started interacting and conversing with others who had the same disease, and could share my fears, worries, tips, and tricks, the black cloud lifted.
One of the most crushing things I felt upon diagnosis was ALONE. Alone with a rare disease. Alone without a partner. Alone with no kids next door, or down the street, to share with, to console me, or help me. Alone, painfully, totally alone.
But, there were others with this same disease! Others walking the same path! Logistical help, a shoulder to cry on, all those things that come with being in “a village.” We could share pictures, share about our experiences with eating out, how to hide a pump in your bra, what to keep in your emergency stash. All those things that you don’t think about at first, but soon become important in order to get on with life. I’ve enlisted my son and daughter-in-law to take me to conferences, hear speakers, and I am looking forward to the big conference in Anaheim, California this June.
One of the most wonderful things about conferences and support group meetings is being able to meet your online friends in person. You develop friendships and share personal experiences. You find other sufferers with the same combination of problems. For example, I have idiopathic pulmonary arterial hypertension. I also had my mitral valve replaced with a mechanical one 15 years ago and have been on a blood thinner ever since. I was also tested and found to have alpha-1 antitrypsin deficiency, a gene abnormality. Being able to talk to people who have even heard of these things is a blessing.
I’m hoping that a PH Run or other fundraiser will happen in San Diego to bring awareness to PH, and to enlist friends and family to be in Team PHenomenal Hope’s Let Me Be Your Lungs program with me.
We all know how expensive medical care is, and I was blessed to be left with good care. With a loss of income and the inability to work because of PH, finances are tighter than I ever thought they could be. With the help of Team PHenomenal Hope’s Unmet Needs Patient Impact Fund, I will feel that burden lifted a bit. I couldn’t be more thankful or blessed.
Becky is a recipient of the Team PHenomenal Hope Unmet Needs Patient Impact Fund. Learn more about how this fund supports PH patients at teamph.org/unmetneeds.
