My Diagnosis - Part II
I’d like to say that I handled my diagnosis well and that I was a fount of positivity 24/7. (If you missed Part I, check it out here.) I kept a pretty good face for most people, only letting my guard down for those closest to me. When I started back to college, I was missing frequently as the doctors ran all sorts of tests to try to determine the cause for my sudden diagnosis. After probably 14 different tests (not exaggerating), they diagnosed me with idiopathic pulmonary hypertension, which is a fancy way of saying they’re not sure what caused my lung disease.
Idiopathic PH is rare, with only one to three people per million being diagnosed each year. (I love to joke that I’m officially one in a million.) It means that for some unknown reason, the capillaries (or small blood vessels) in my lungs have constricted and hardened, making it difficult for blood to be pumped through them to the rest of my body. This causes the right side of my heart to have to work extra hard and creates high blood pressure in my heart and lungs only. Take my blood pressure on the cuff, and I look healthy as a horse. The first time I passed out in July of 2009 was to be the first of several as my disease has progressed and my medicine has had to be adjusted. Admittedly some of those times were due to poor compliance on my part. Hey, I was an irresponsible 20-something at the time whose greatest challenge should have been making it to class on time - a real challenge (lol), but I was taking pills and breathing treatments four times a day.
I knew the disease was progressive, and my doctor (and my reading) had told me that there were a couple of pills and breathing treatment options but that when the disease progressed beyond that point, IV meds would be necessary. I dreaded that day. IV meds were the best way to manage the disease and treat the symptoms, but I did NOT want to be hooked up to a permanent line. At the time when that was no longer effective, a double lung transplant would be necessary to prevent right-sided heart failure. Transplants are postponed as long as possible, however, because there is an average of ten years before the body rejects the organs, and very few lucky people are granted a second set of lungs.
Man, I was bummed. This was not the life I had envisioned for myself, and I was sure that no one would want to marry me knowing that these would be the challenges he would face throughout our married life. It would take a really remarkable person, and I couldn’t have known then what a remarkable guy I would find.
I couldn’t control the progression of my disease, but I could maintain a healthy weight, keep myself in good cardio shape, and take advantage of opportunities I realized I may not always have. It was this realization that led me to bike across Kansas and later Iowa. I completed an adventure run and a triathlon as well. Granted, I was not the fastest in ANY of these things (by a long shot - lol), but I did finish them.
Biking across the state within a week’s time was one of my life’s greatest accomplishments. Until I had Jameson.
The thing I struggled with the most when I received my diagnosis was the news that I shouldn’t have kids. It wasn’t that I couldn’t, but doctors counseled against it due to the 30-50% mortality rate associated with moms with PH during pregnancy. When Brad and I very prayerfully decided to consider having a family of our own, it meant lots of changes. There were doctor trips to Denver, Milwaukee, and Kansas City. I was required to begin IV therapy and stop one of my other medicines.
There’s a whoooole bunch to all of that, but right now, life is good. My pump sounds every few minutes, but Jameson is 7 months old and snoring quietly in his swing in the room next to me as I type this, the rhythmic and mechanical swinging sound accompanying the quiet clattering of my keys. I couldn’t imagine a more perfect way to spend my day, working from home with my baby by my side, getting ready to see my wonderful husband in just a couple hours. Life is sweet.