New Chapter for my Daughter … New Chapter for Me

At 1800 hours, on May 10, 2012, a new chapter in my ultra running resume begins. I will participate in the McNaughton 200 mile run hosted by Peak Races in Pittsfield, Vermont. It is a beautiful location filled with epic stories, challenging uphills / deceiving downhills, and most importantly a new challenge for every participant on the trail of 10 mile loops.

Many folks know of my plans to successfully complete the 200 miles. And most of my conversations go well….something like this:

“Your training to run 200 miles!? Why would anyone want to run 200 miles!? You must be crazy to want to run for 3 days straight!”

These three questions are just a few inquiries I hear constantly everywhere I go from everyone that is not an ultrarunner. Marathon runners just look at me in amazement at my physic and wonder how the hell would I do these long distances and Not why would I do it.

By now I am used to the shock of folks eager to know about this entire process. I, nevertheless, do share as much information as I may depending on the time available to chat and the desired depth of knowledge/information the person is willing to hear. Sorry to be blunt here but I can read through the bullshit and answer accordingly whether one wants to hear or pretends to hear.

So to answer these questions I sometimes remind people that my daughter has been the main motivation for my desire to get back on my feet when I weighed nearly 245 lbs . My daughters constant struggle with her illness (primarily pulmonary arterial hypertension) has been the fire within my soul to become active … at least through running. When she was diagnosed with congenital diaphragmatic hernia (CDH) in 2008 it was truly a shock to me and my family (also her mother’s family). The chances of survival were very bleak. To top it off, she was born with a right-sided CDH and according to statistics females with right-sided did not have a good prognosis. According to this article published in 2008 by the Division of Pediatric Surgery, Columbia University College of Physicians and Surgeons New York, “right-sided CDH carries a disproportionately high morbidity and mortality”.

Now that my daughter is four years old with all the training and races I am down to 180 lbs and my fire is still burning as her pulmonary arterial hypertension continues to linger at extremely high levels. She looks fantastic and if you look at her you would not know she has been on medication such as Sildenafil for nearly four years to decrease the pressures. After years of monitoring her health with constant echocardiogram, EKG’s and several cardiac catheterization’s…another strong drug was introduced to further assist in reducing her vascular and arterial pressures. Tracleer was introduced to my daughter around August of 2011 which needs monthly kidney monitoring.

As shown in this article (one of many), the combination of these two medicines should have assisted her health significantly. However, she has fainted three times in the past two months indicating that the pulmonary hypertension continues to be of grave concern for the doctors. This severe concern has introduced new options to improve my daughter’s health … not cure it. The next step / next chapter in her life will consist of treprostinil provided in two formats remodulin and tyvaso, intravenously and inhaled, respectively.

Tyvaso is the first step which we will attempt in transition to these medications. She will have to use these medications (which ever her body accepts) for life. Both options cannot be interrupted and if she faints again she will need to have the remodulin (broviac) placed immediately. It will take a lot of effort by both her mom and I and the support of our family and possibly friends.

So…this is the main reason why I have chosen to run ultramarathons. I could keep writing about this topic but there is so much to write about this topic. This is all we know thus-far as she has not been provided the medicines yet because the insurance companies continue to negotiate who will pay and how will these medicines will be paid.

My fire is totally ignited again with my daughter’s new chapter in her life. I have never forgotten why I place my foot at the start of any ultra I have participated in. I have never forgotten why I go through all this pain and agony on the trails…to attempt to feel somewhat of what she felt as she laid throughout her six months in the hospital and continuous pain she feels in her heart/pulmonary system daily. My pain during these ultras last for nearly 24 hours…and for this 200 it will linger for 72 hours. Her pain and other babies is every second of their life. So think twice of why you see people out there running a 5K, 10K, half-marathon, marathon or ultra…there is a reason.

Just like my daughter smiles daily…you do the same.

Smile its a beautiful day!

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3 Comments

Filed under Misc.

3 responses to “New Chapter for my Daughter … New Chapter for Me

  1. me leuner

    Luis I wish all the best for your daughter and may she get better.

    It is incredible what you are doing to share in her experience and I have a lot of respect for that. Good luck with McNaughton. I know you will you complete it. -ML

  2. dad

    Louis, you are truly an exceptional person and a gift to those who are fortunate to cross paths with you. I’m not running McNaughton this year but good luck and maybe I will see you down there.

  3. Ray

    Hello!

    I am a 34 year old who suffered from right sided CDH at birth. I am currently training to run my first Half-Marathon. I am very healthy, with a wife and 3 great kids. I, like many other kids born with CDH, apparently had a rough time when I was little — although that’s really a distant memory at this point. I just finished running a quick 5 miles and thought “huh, I wonder if other people with this condition like to run?” and googled it. That is how I found your blog.

    Anyway, I just thought a quick message might help you. Pulmonary arterial hypertension is something I am not familiar with, but I would imagine your daughter is going through quite a lot. Your running is admirable — keep being there for your daughter. Good luck!

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