Tomorrow, October 11th marks the 5th anniversary of my diagnosis of Pulmonary Hypertension.
My condition at the time of diagnosis certainly didn't bode well for the future. I was in moderate to severe heart failure, my heart was surrounded by fluid, and it was pumping at less than 50% capacity. I slept....more than even I, the professional sleeper-inner had ever slept before. I remember (ironically) not being able to remember things. Words escaped me. Due to oxygen deprivation, I couldn't come up with the simplest phrase, and working hard to do that was too taxing. Most of my days were spent horizontal on the couch, watching the boys play. Thank goodness my job as "mom" was not one from which I could be fired because, well, I wasn't exactly doing much mothering. That was the hardest part emotionally.
Nathan was 18 months old. I had lost my voice (paralyzed vocal cord that we later realized was yet another symptom of PH) and I could only speak, read books, or sing songs to him in a whisper. I realized after awhile that he spoke normally to Andy and Matt...and he whispered when he talked to me.
Matt was in 1st grade by then. He is such a good kid and he just forged ahead like any 6 year old. It all affected him though and I hated that he knew something really wrong was happening to us...not just to me, but to our family as a whole.
The cardiologist who performed the heart cath told me to get my affairs in order. He told my 36 year old self that he was sure I wouldn't see my 39th birthday. I wished really hard for him to break something...like his face, but he was just the messenger, albeit a poor one.
Thankfully, I was diagnosed with PH at a time when new medications were/are being developed all the time. Researchers keep finding new angles from which to attack this dreadful disease. I guess I have sucky luck, but good timing.
I've also been fortunate in that I have been under the care of amazing PH specialists. The knowledge and experience they bring to the table has been life changing. The pulmonary doc who diagnosed me saved my life. But the specialists since then gave me my life back. And they even put up with my neurotic need to know info, test results, upcoming clinical trials, dosage questions, treatment options, and the like. I'm pretty sure I'd drive me crazy if I was my doctor.
5 years from diagnosis, the survival rate is around 50%. But that number continues to go higher as people like me benefit from all of the new meds. Here I am. Take that PH.
And here's the fun part. Not only am I still here, I'm LIVING! I'm not watching from the sidelines or barely getting by, I'm a typical mom and wife. I volunteer at school, actively participate in an awesome church, discuss boys' stinky feet and incredible appetites on the sideline of soccer practices, play Bunco, go out with friends, take care of our house, shop (unfortunately for our budget), walk the dog, travel, and well, normal, every day life! I often envision letting that cardiologist know how inaccurate his advice was 5 years ago...sending him a picture of myself at the 5K this summer, or tubing on the lake would be a fun place to start.
I'm not just a Survivor at this momentous 5 year point. I'm a Live-er. There are no words to describe how thankful I am. Some days when the trash bag opens on the curb and crap goes everywhere, or Nathan has once again emptied the milk jug at 9pm at night, or when Murphy brings a baby bird into his kennel, I remind myself that THIS is living and not that long ago, I was watching it all from the sidelines.
I never thought I'd consider PH a gift, but it is. I mean, I'd prefer diamonds, but well, I got PH instead. And PH does NOT have me! It's a part of me, but it doesn't define me and for that I am immensely thankful. My faith has grown so strong, and so deep and I don't know if that would have happened if not for PH. Really...what a blessing it has been.
I pray daily that I continue on this path and that new meds and treatments continue to be developed. I pray that the medical community finds a cure for Pulmonary Hypertension. For me. For all of my PH friends.
5 years and counting...and living.
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