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Patient story

Kimberlee Ford

Kimberlee Ford

Around April 2009, I started to feel sluggish all the time, and it became difficult for me to walk up the stairs to my apartment, do laundry, and take care of myself without being short of breath and feeling faint. It got worse, so I scheduled a complete physical with my primary care physician (PCP). A month later, I still felt awful, so my PCP referred me to a pulmonologist, and I was diagnosed with asthma. Despite the diagnosis, my symptoms continued to worsen, so my PCP referred me to a cardiologist, and I scheduled an appointment for August.

On July 27, the day after I saw my PCP, I was at work and found that I could barely walk and breathe. I had horrible chest and leg pains, and I left work early to go to my parents’ house. After driving 45 minutes on the Capital Beltway around Washington, D.C., I made it to my parents’ house and collapsed on their couch. The ambulance came and I was taken to the emergency room, and the doctors could not figure out what was wrong.

They transferred me to another hospital that specializes in cardiology. I was in intensive care because I had blacked out for a few days. Some people didn’t think I would make it. Upon waking up, the doctors told me that I had primary pulmonary hypertension (PH). I was transferred to a recovery ward for eight days, where I was seen daily by a number of medical professionals—pulmonologists, cardiologists, neurologists, radiologists and physical therapists. The team was great, but not well-versed in PH, so they brought in PH specialists. I was released on day 12 with prescriptions, supplemental oxygen and a list of “dos” and “don’ts”—and one of the “don'ts” is pregnancy. Currently, I am on IV Remodulin, Letairis, Adcirca, Procardia XL, Lasix, and lots of other medications for the side effects. I also use supplemental oxygen during exertion, sleep, and as needed.

I had to give up my apartment and move in with my parents so they could care for me. I am currently unable to do some daily living activities alone, and I am not able to return to work or school. I know that one day; I will be able to have my own home again, return to work and nursing school, and live a somewhat normal life. For the time being, I am living one day at a time while continuing to see the PH specialist and attending cardiopulmonary rehabilitation, eating a heart-healthy diet, educating myself about primary pulmonary hypertension and my insurance plan, and being an advocate for PH awareness.

I pray that I will get better because I would love to return to some normal living activities and have children of my own in a few years, if it is God’s will for me. I read that PH is a deadly, incurable disease, but I believe the only cure for PH is trusting God Almighty. I have good and bad days, but the good outweigh the bad. PH has changed my life emotionally, physically and financially, and through all of this, I am very thankful for my parents and the rest of the family, and meeting PHriends.

I will not allow pulmonary hypertension to master my life.

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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.