Individuals with pulmonary hypertension (PH), their friends, family and health care professionals who treat the disease will come together in Fountain Valley, Calif., on Sept. 14 to participate in the Pulmonary Hypertension Association’s (PHA’s) 2019 Southern California O2breathe Walk.
“I have been involved in PHA’s Southern California O2breathe Walk for two years; the walk [this year] will be my third,” shares Colleen Daniel, Psy.D., a pediatric neuropsychologist who was diagnosed with chronic thromboembolic pulmonary hypertension (CTEPH) in 2017. “My first year I walked while on oxygen. It was hard, but I made it.”
“My hope is to have an even larger team this year,” she continues. “It is amazing to see so many people in the community come together to support such a rare condition; it is also difficult to know that so many of us have been impacted by PH in one way or another. My heart goes out to those who walk in memory of a PH patient, but it does help to reinforce why it is so important for us to continue to look for cures or treatments for PH patients.”
Colleen’s diagnosis story is not uncommon. “It took a while for me to be diagnosed,” she says. “I had to be a pretty vocal advocate for my health, repeatedly telling my doctors, ‘I do NOT feel well; something is wrong.’ My symptoms developed out of the blue when I was 35: one day I could not catch my breath and felt all day as though I had just sprinted a marathon. I was diagnosed with pneumonia, during which I developed a chronic cough and extreme fatigue. I was falling asleep at 6 p.m. every night and was out of breath after doing simple things, like washing my hair. For months I was at my doctor’s office or urgent care, repeatedly complaining and being given cough syrup or antibiotics. Nothing helped. I took a pulmonary function test, which came back abnormal, and off to the pulmonologist I went. A CT and a VQ (ventilation-perfusion) scan, given to me ’just to be on the safe side,’ showed multiple pulmonary emboli.”
Colleen was started on medication, with the expectation that life would soon be normal again, but seven months later, she showed no signs of improvement and felt even worse. “I had echocardiograms and a right heart catherization, both of which showed increased pressure in my pulmonary arteries and right-sided heart failure.” It was then that Colleen received her CTEPH diagnosis and was referred for pulmonary thromboendarterectomy (PTE) surgery that removes blood clots from the lungs.
She shares her surgery story:
“I love research, so I dove into the medical journals and researched CTEPH and PTE surgery ad nauseum. There really aren’t words to describe how you feel reading about your condition and its unfortunate deadly prognosis if left untreated; or about the curative surgery that is very technically complicated and frankly, terrifying. Terrified sort of covers it, but it’s more than that. So much more. I went to therapy through most of this, which gave me a great space to process my terror, cry, feel sorry for myself and talk through the big, ‘what ifs’ I couldn’t talk to my friends or family about.
“After a three-day evaluation at UC San Diego, I was approved for surgery and given my surgery date: June 1, 2017. I cannot say enough great things about my treatment team: this was a very scary and hard process, and they were incredibly patient, supportive and informative. PH is such an unknown condition, so it was amazing to meet people who were not only experts about it, but who cared about my outcome and well-being.
“PTE surgery is no joke and was hard physically and emotionally. I cried saying good bye to my daughter, I cried while in the pre-op area, I cried being wheeled into the operating room. My treatment team was very kind through all of my tears. Surgery went great. I was awoken the next day, taken off the ventilator and allowed to breathe on my own. Even though it was initially difficult, I felt as though I had new lungs, and I was not out of breath constantly! Eight days after surgery, I was discharged with my trusty tank of oxygen, ribs held together with surgical wire and a better prognosis. Today I am doing great; I had my two-year follow up VQ scan and echocardiogram and am considered ‘cured.’ I run. I lift weights. I am back to being an involved parent and wife.
“I took about eight weeks off from work to recover from surgery. I am self-employed, so the financial aspect of taking time off from work was difficult, but I also knew my patients needed me, just like I had needed my psychologist. As a pediatric neuropsychologist, I work very closely with families who have children with chronic or life-threatening medical conditions. It isn’t always easy, although I do feel that most kids are far more resilient than we acknowledge; the families tend to struggle more with the diagnoses and complications than the kids do. I used my patients as inspiration for getting through my struggles: yes, I felt as though it was ’unfair’ that I was diagnosed with a terrible condition, but if a 10 year old with a brain tumor can still smile and not dwell on her prognosis or limitations, so can I.”
“Even though I no longer have CTEPH, I choose to support PHA,” Coleen concludes. “While PH has begun to gain increased awareness and funding, there is still a great deal of work that can be done to spread awareness and advocacy. If we want to have better outcomes for PH patients, we need to be vocal and each do our part to bring about awareness, funding for research, and support for patients and families.”
Click here to register to join Colleen and other families and health care professionals at the Southern California O2breathe Walk! Those who are not able to attend the event may also register as a virtual walker or make a donation.