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Thursday, April 26, 2012

A Journey Not So Smooth

By Kiara Tatum
Kiara's Family On Path to Stone Church
I was noticing that over the last week there were more postings of people with PH venting and feeling down on the PH Family Facebook page.  Although I didn't post it, I also had a couple of low days last week.  And one day, I stayed in my bed all day long because I just couldn't face the day and wanted to hide.  This PH journey isn't a smooth, a steady or an easy path that allows you to simply take medication, and you will be cured.  It's an uneven, bumpy, rough and difficult path.

Kiara and her nephews
I was reminded of last summer when I went on my first hike since I was diagnosed with PH.  It was a place I wanted to go to for years.  I printed up the brochure in 2007, and I told my family and some friends that I wanted to go to Stone Church in the Town of Dover, NY.  Knowing I was on oxygen and I could barely walk a block at that time, I had to see it.  During my six-minute walk tests, I would have chest pains, dizzy spells, would have to slow down and hold my chest, so going on a hike to Dover Stone Church just seemed impossible.  But I wanted to do it.  So summers would pass, and I never went.  I knew I wasn't physically ready to go.  Then in the fall of 2010, I started Remodulin subcutaneously, and it gave me hope to reach my goal of going on the hike to Dover Stone Church.  In the summer on August 20, 2011, I made the journey. 

Stone Church Entrance
We had to drive up and around the mountain which presented thinner air as we got closer to the site.  I had to climb stairs, I had to cross rocky paths, I had to walk over slippery wet rocks, walk up a mountain, but I did it.  I slipped, but I didn't fall; my oxygen tank rolled the wrong direction, but I pulled it with me.  I had to let my mom hold my oxygen tank for me, but I kept walking; I had to stop for breaks, but I never gave up.  I had to catch my breath, but I had more breaths left and I reached the top, and I saw Dover Stone Church.  When I walked inside the cave, I knew my journey was complete.  I was so proud of myself, and my family was proud of me as well.  It was so beautiful and so serene.  Knowing what I had to go through to get to that point made the journey so much more meaningful and powerful for me.  I had the strength, courage, faith and hope I needed to take on that not so smooth journey to see the natural beauty of this world, and I did it!

Path to Stone Church
So sometimes you may want to give up because you feel like you don't have any more strength to fight, but hold on a little longer.  It's not going to be easy or straight, and you're going to feel depressed and angry sometimes.  Just remember there is going to be something--a medication change, an inspirational song, an encouraging word from a phriend, or anything--that will give you more hope, courage and strength needed to fight another day and another day to get out of bed, to take your medicine, to do the simple yet hard tasks of the everyday.  Also remember you are not alone; you have your family, friends, and phriends to help you through each day.  Have hope on this not so smooth journey!  And maybe one day, we won't have to fight any more.


  1. Thanks I really needed to read this.

  2. So happy for you! Thank you for sharing. Victories like this give us so much hope!

  3. What a fantastic blog! Thank you for sharing your story . . . I truly hope that we can learn from you and never give up on our dreams!

  4. Is a great pleasure for me to read that your article. I have done too in Greece one blog for pulmonary hypertension, but unfortunately here do not talk openly about this!
    I try to make the world be interested in us ... we are here in GREECE only 300-400 patients and there is considerable research to us! learns from you on new developments and transfer them to my PH friends here in my small country. We all together, from every corner of the globe to join forces to listen, to know us! Thank you all FOR this help! (Sorry for bad english) God bless you all! This is my blog (the translation may not be very good, but your support the counts for us ) Thanks !!!