by his wife, Mary
It’s that time of year again. November 1st marked the beginning of Pulmonary Hypertension Awareness Month—something that is very dear and near to my family. My husband has pulmonary hypertension, and this is our story.
We first noticed a problem with my husband four weeks after I gave birth to my second child. We were raking the leaves in the front yard and for some reason David could not keep up with me. He began to blow the leaves off the roof and within minutes he was drenched in sweat and looked like he was going to pass out. My “little wife/mother alert” went off. I knew something was wrong. This is a man who teaches whitewater kayaking, runs around with my son and rock climbs. He should not look like this after blowing leaves off a roof.
I had to make the appointment for David because in true “man” fashion, he did not have a regular doctor. Initially he was diagnosed with having asthma, but his doctor had enough good sense to realize maybe there was something else going on and scheduled a stress test a week later. David used his little inhaler for a week with no improvement in his ability to “catch his breath.” He was so tired and slept a lot. David left for his stress test and I stayed home with my two year old and the new baby. I thought nothing of it. My world changed that afternoon and we have never looked back.
David collapsed during his stress test and was rushed to cardiac intensive care. He was rushed into the cardiac lab and had a left sided heart cath. I rushed to the hospital after finding friends to take the babies. We sat in intensive care for three days and were discharged with a vague diagnoses dealing with the epithelial tissue in his heart valves. We got no answers.
A few days later, on July 3, the doctor called us back and said he looked at David’s chest echo and noticed that his heart was extremely enlarged. He wanted us to come back in on July 5 for more tests. We frantically started to Google the words enlarged heart on the internet. These words kept coming up— “Pulmonary Hypertension.” Then we clicked the link. “No cure….continuous IV drug therapy….heart and lung transplant….five years to live after initial diagnoses.” Our world came crashing in.
On July 5, 2007, the doctor met with us in a little sterile blue room and said those dreaded words, “you have pulmonary hypertension. You need to find a specialist at either Mayo or Emory to receive treatment.”
We had our first meeting with the doctors at the Mayo two weeks later. David was put through a series of tests to try to determine the cause of this disease. We learned it is usually secondary to a number of other diseases. They found nothing and diagnosed him with having idiopathic pulmonary hypertension, which means there is no known cause. One in a million they say.
We learned at the Mayo through the wonderful docs and respiratory therapists that this is not a death sentence. There are new drug therapies being discovered and new drug trials. David is currently taking up to ten medications a day including his continuous drug therapy through a catheter in his chest. We have had a few setbacks, but for the most part he is doing better. We had good news at our last visit to the Mayo. He is no longer being considered for a heart and lung transplant because his heart function is starting to get better.
David has had to stop working and now runs the house and takes care of the kids (better than I ever did). On the flip side, I have taking on all the other responsibilities. I have gone back to work as a full-time speech therapist and I have traded in my house slippers for work boots. I never thought I would ever use a jack hammer to tear up concrete in the back yard!
So, if you see me running through the hallways with purple in my hair—yes, purple—it’s my way of spreading awareness for PH Awareness Month. David and I wanted to take this time to say thank you to our huge network of friends and family. We cannot do this without you.