Patient story

Charlotte McCabeCharlotte McCabe

We had been living in Flagstaff, AZ since 2001 and we loved our new home and community. I was creating and expanding new health outreach programs for the elderly of Coconino County through their Public Health Department and I loved my job and the wonderful colleagues I was working with. I had quit smoking over a year before I was diagnosed. Over that year my colleagues, husband and friends were all being wonderfully supportive and they all kept assuring me that my breathing would "get easier" and yet, each day, I was feeling more and more short of breath. Even my Primary Care Provider said to "hang in there". All of my labs at my annual physical had been perfect and my blood pressure was only up a little bit. I was working on that with diet and exercise. A cardiac stress test was scheduled for the coming week.

It was April 21, 2005 and I looked at my hands after walking from the parking lot to my desk in clinical services, a flat surface all the way. My fingers were blue. I took out my pulse oximeter (it measures oxygen saturation at one’s finger tip via a clothes pin apparatus) and my saturation was 72%. After 15 minutes my saturation was still in the 80s% and I should have recovered to 89% or above within three minutes. I called my provider and he said to come in immediately. I called my husband and he met me there. That was the last day I worked in my career, that was the last day my life was normal, that was the last day we would live at 7000 feet above sea level.

After having emergency ex-rays and an EKG at the hospital I saw the cardiologist who was going to do my stress test that Friday. He did another EKG, tested my oxygen saturation and did an echo-cardiogram and then told me to "get off this mountain.....NOW! And get some portable oxygen on your way downstairs." He told me I could never live at that elevation again and gave me the name of a Pulmonologist to see on Pheonix ASAP. He gave me prescriptions for four cardiac medications and sent me on my way. That all happened on a Thursday. We were in Phoenix at a hotel by Friday morning, had oxygen and had an appointment on Monday morning with the Pulmonologist's Nurse Practitioner. They started me on two inhaled pulmonary medications and I spent the next month having every diagnostic test in the book to determine what the cause of my PH might be. It is a process of elimination to get to that point if one ever gets there at all.

After it was determined that my PH was connected to COPD and was Class II, I began Pulmonary Rehab for 10 weeks while we continued to live in hotel suites in Phoenix. So, this had us living in Phoenix, AZ during one of their hottest summers on record, in two room hotel suites with our dog while my husband was commuting to Flagstaff to pack and store and sell our belongings and move out of our home. Being that it was 112 degrees or hotter every day we were in Phoenix, and that rehab required that I did some form of exercise daily, my husband, dog and I would rise by 4:30AM to walk with our dog for 30 to 45 minutes (that was my tolerance level) and then we spent the day in A/C to survive. All this time we were living on credit cards while paying for our home until it was re-rented and there was no foreseeable return of my income until long term disability kicked in the beginning of November.

When Pulmonary Rehab was completed we decided that we definitely did not want to continue living in Phoenix and the only places we were interested in living in AZ were at too high an we packed up the cars and headed out to return to Washington State where we had lived in years past and where my daughters and their families still lived.

Charlotte McCabeWe have been back in WA just a little over a year now. I have a Primary Dr. and a Cadiologist that I really like and trust. I have a Pulmonary Dr. that I don't really see as my Cardiologist is the one who follows me for the PH. I have spent this year trying to take Tracleer (an endothelin antagonist that increases the elasticity of the Pulmonary Arteries) as a full dose and again as a half dose....and I am one of those folks whose liver really doesn't like this drug. I am again on no specific treatment for my PH, just the medicines for the high blood pressure, heart failure and COPD.

It is the Holiday Season, I am still here to enjoy my family, we are in debt so high from that six months when my income was cut off and we had to live on credit (and I thank the powers that be that we had that credit to live on) that I think that my husband and I shall never see the light at the end of the tunnel, and there is still no treatment out there for my PH that my body can tolerate at this point. What I am doing are alternative wellness practices.....and I believe they are helping me to have more stamina. I have an acupuncture treatment every month, I am taking herbal supplements to cleanse my liver, maintain my heart function and circulation and supplement my diet, I am doing a gentle yoga stretching and exercising routine daily, I am visualizing healthy pulmonary arteries and I am walking with my husband and my old woofer for about one and a half miles per day (my current limit). Every morning when I wake I know it is a good day because I woke up....and I take my life one day at a time. I meditate on all my blessings, what I am grateful for daily, my husband (he is definitely my hero), my loved ones, my new grandsons, my new home, my medical team, and this glorious day to live fully and unconditionally one day at a time.


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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.