Year-round, the parent company of this website, Bionews Services, strives to provide pertinent and updated information about complex, rare diseases. Staying current with medical research is a key component of effective self-advocacy, but personal experience is also a gold mine of valuable information and inspiration. Bionews recognizes this by…
National Donor Day in the U.S. was on Feb. 14. However, every day when I look at my son, I feel inspired to raise awareness about the lifesaving benefits of organ, eye, and tissue donation. And what better way to spread awareness is there than sharing Cullen’s transplant story?…
Pulmonary hypertension (PH) is an incurable, life-threatening disease. This reality is a gaping wound that patients and loved ones try to cover and protect with hope. But at some point, we are all forced to peek under the bandage. What do we do when PH starts progressing, treatments stop helping,…
Second in a series. Read part one. Grief and guilt are not easy to express or explain. It has been five years since my son’s heart and double-lung transplant after a lengthy battle with pulmonary hypertension (PH). I am thankful and overjoyed that he has continued to push through…
First in a series. Many pulmonary hypertension (PH) patients and caregivers experience survivor’s guilt. During my son’s battle with PH and the five years since his heart and double-lung transplant, a staggering number of patients have died because of PH and post-transplant complications. Each time I learn of another…
It is said that good things come to those who wait. But when you are waiting for a loved one to get out of surgery, patience has nothing to do with the outcome. Neither does worrying. Fear is difficult to subdue under these circumstances. The longer the wait, the more…
Over the past decade, my son and our family have been through an intense journey from pulmonary hypertension (PH) to transplant. Most of the big, scary, sad, joyful, and incredible moments were squeezed into the past 10 years. Cullen was two years into his diagnosis when the world ushered in…
I recently read that the World Health Organization has declared 2020 as the Year of the Nurse and the Midwife. In honor of the 200th anniversary of Florence Nightingale’s birth, I hope you feel inspired to unite with people around the globe by celebrating, thanking, and supporting nurses.
In my previous column, I encouraged those who are celebrating Christmas to gift themselves with the feeling of peace this holiday season. However, you don’t have to be a Christian to welcome peace into your life, and everyone can practice goodwill. If you are living with pulmonary hypertension (PH),…
When I was a child, I wrote in a journal that my favorite part about Christmas was the feeling it created. It’s not just the joy of holiday lights and carols, the peace and awe of midnight Mass, the anticipation and excitement of presents, or the contentment that lingers throughout…
It is said that laughter is the best medicine. My son’s battle with pulmonary hypertension (PH) and post-transplant struggles made me a believer. However, the humor behind the laughter has often been gross, silly, a bit dark, and sometimes a little off-color. I remember the first time Cullen fell…
As Pulmonary Hypertension Awareness Month draws to a close, the complexities of this disease have been exemplified by the sharing of personal battles. Our community has cried out in memory of those who have died to raise awareness of pulmonary hypertension (PH) as a life-threatening condition. We have explained…
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