|Hannah with her daughter at a lighthouse in South Florida.|
I can barely believe I’m saying this, but today I celebrate 20 years of life with Pulmonary Hypertension. I was only five years old when I was diagnosed so I barely remember it. Honestly what I remember most from that year of my life is overprotective adults constantly asking me if I was feeling okay. I also had a surprise birthday party that I remember well. Later I found out that it was such a big party because the odds were it would be my last. A year later I was put on life saving intravenous medication that would be attached to me for 10 years. Such treatment did come with hospitalizations due to infections and emergency room visits to repair holes in the central line. It was worth it though. Not just because I am alive today, but because of all I learned along the way.
Today I am no longer on the intravenous medication. Scientists invented a way to inhale that medicine. I do it four times a day. While it seems cumbersome, it is far less dangerous and complicated than my previous way of receiving it. Life is good. I am now a college graduate, married and the mother of a 3 year old. All life milestones that appeared impossible 20 years ago.
My story has been told in newsletters, news broadcasts, online and in speeches. I’ve told it to classmates, and my mother told it to doctors. It really is a miracle, but after hearing it so much I forget how miraculous it is. An educated medical professional estimated my life would end in two years and instead it is still continuing 20 years later. This is indeed a miracle! What makes it so much more miraculous is along the way I have seen many face death because of Pulmonary Hypertension, but I have been spared.
I do not have guilt because I’m alive and others are not. I have sadness because I miss them and I know their families do too. I have joy because I see the way that the relatives and friends devote their lives to make the lives of people with PH better. My mother has heroically volunteered at the Pulmonary Hypertension Association since I was in grade school.
It really is a brutal disease. So complex that no one knows why some patients get PH. So complex that the patient is often the one educating the nurses, doctor and residents before their hospitalization is over. Patients have a much better prognosis when they are diagnosed today than when I was diagnosed. It is promising, but I still need a medication that is more consistently administered and with milder side effects.
I don’t know if 20 years from now I will be celebrating my 40th anniversary with this disease. I don’t know if a few years from now my health will downward spiral and I will be in heaven, and my body will be no more. That is the beautiful part of having a life threatening and unpredictable disease. Everyday means so much more. I think I have accomplished more meaningful things in my 25 years on earth than I would have if I were never given this diagnosis. There are few things in this world that are worth more than knowing how short life really is.
It is a two-part equation. First is learning that you are really not as untouchable as you think you are. You are not capable of making your own heartbeat and not capable of making yourself breathe. At any moment it could all be over for any of us, or all of us. That is what 20 years with PH has taught me. The second part is now that you know this, what does it matter to you? For me it matters because I know that life goes on after death. My theology is that you go to heaven or hell.
A diagnosis with Pulmonary Hypertension changes everything about the person you thought you were. The disease does not define patients; we are just limited by it. Our calendar is filled with doctor appointments, our cell phone bill is stacked with calls to the insurance company and our bodies take longer to fight off the typical cold. Denial does not take away the disease. This past 20 years has been an uphill battle, and I know it will always be that way. That is fine though because when I look back on the 20 years, my character has been defined and redefined by these struggles. I am grateful for these past twenty years. Today is an anniversary that I celebrate!
Hold fast, a cure is on the way!
P.S. This month my sister's women's soccer team is honoring me in the Commodores Compete for a Cause that is being held at Vanderbilt University. It is a competition between the sports teams to see who can raise the most money. The money raised by her team will be donated to the Pulmonary Hypertension Association. Click here to learn more and donate: Women's Soccer Commodores Compete for a Cause - Razoo