About The Author

Diagnosed at eighteen, Haley has made it a lifetime goal to educate on her rare lung disease, Pulmonary Hypertension, and often ignored brain and emotional health issues accompanied with lasting injuries and diseases. Haley has become the proud recipient of the Tom Lantos Scholarship in 2013, and the Pulmonary Hypertension Association’s Outstanding Young Adult  PH Citizen Award in 2014. Haley is also striving toward her goal of becoming a published author after winning National Novel Writing Month 2013.

“Summing someone up into a disease that we define as “it has you, and will kill you” is such an insult to our Creator. He made such beautiful things, including you; like you. Not just your body, but you.”  – Phenomenalhaley.com – Look Beyond the Medication

Rocco Ricardo at her side, this cat lady of course believes in loudly proclaiming the world as yours. Famous for feminist words and ways, she is not a stranger to this constant developing society, but promotes emotional honesty and healing as well as personal strength. Finding activism within her Native American heritage weaves its way into her words in hopes to make society more aware of exactly what culture is quickly disappearing.

Haley will continue to “PHight” hard for what she believes in and what she has endured to discover herself, and her capabilities. “I am blessed to finally have the knowledge that I am not a normal 24-year-old nor do I have to try to keep up like one either. I am simply PHenomenal.”

Questions or comments? Contact Haley at haley.ann.92@gmail.com
Follow Haley on Instagram! haleyann92

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34 thoughts on “About The Author

      • Do you tweet? Do you know about the hashtag #raredisease and the Global Genes Project? I clicked and clicked on some blogs (I love doing that!) and found yours. 🙂

      • No, I have never heard of it! I do have a Twitter but I hardly use it due to only having like 3 followers. haha. Im so glad you found mine! 🙂

      • They are a nonprofit that are helping to raise awareness for rare diseases. I didn’t have followers to start but now I have some. 🙂 If you were interested in becoming an advocate their link is on my blog. 🙂

  1. Hi Haley,
    I am a PH suffer too and I saw your t-shirt article on Facebook. I would love to order shirts for my friends and family. Please keep me updated on the status of your shirt orders.
    Thank you,

    Christina

  2. I really like your blog and I’m glad that you are doing so well with your Pulmonary Hypertension. You made me smile while I read through some of your blog posts. Thanks for educating others about our disease. =o) You can vacation in the mountains with PH?

    • Well thank you so much it is seriously a miracle! I hope you are doing well with yours too! 🙂 I enjoy writing and I definitely hope the blog is relatable but can create smiles as well. Yes, I vacation every summer in the mountains (New Mexico) since I was at least a month old. Its never really effected me and the past 2 times I’ve been after being diagnosed I did great! I don’t have shortness of breath or anything, but I always taken oxygen just in case. I’m not suppose to go into anything with high altitude but I’m not the most obedient patient. 😉 Oh well!! Take care and keep in touch! 🙂
      -haley.

      • Hi again Haley,
        I know this my sound like parental nagging but something you should consider purchasing since you vacation at higher elevations is a pulse oximeter. You probably already know what that is but for those who don’t, it’s something that you clip onto your index finger for an oxygen saturation readout when you feel short of breath. In fact, I need to go get another one because my dog, Rocco, chewed mine into pieces! LOL!

      • Haha I actually have one! When walking around it used to drop around 75 but my last test (2 weeks ago) it dropped to 88, so that’s progress! How funny, my cat is named Rocco! 🙂

  3. Howdy Haley Ann- I’m relatively new to the blogosphere but have already connected with many similer ppl with lung issues. I’m very familiar with lowered o2 levels and o2 relief. I hope we can become buddies in the future and join others as an oxygen friendly community! Bless You – Tom

  4. I was diagnosed at 20. My Dr was able to help me manage PH for twenty years then it got so bad I got listed for a transplant. My heart was fine and after only 5 months I was blessed to get my double lung transplant. This happened 5 years ago, but I still keep helping and hoping for a cure. Stay positive and stay healthy. May God bless you always.

  5. Dear Haley,

    I came across your blog on one of the facebook pages, I have fallen in love with your blog because I can completely relate. I was diagnosed last year and I’m 22. It was severe and still is but is being managed mainly by flolan (although its a great drug and I feel so much better than I was, its such a pain to have). For me also what i struggle with most is one not being able to become pregnant and two how difficult having children will be when I am ready to do so, as all I have ever wanted and couldnt wait to be is a moyther. I am a midwife and have struggled returning to work and being the best midwife due to the emotional roller coaster this condition takes us on. So now looking for other positions/jobs. I completely admire you and your ability to write so well and bring awareness to pulmonary hypertension through your blog.

    Much Love from Australia,

    Jess xx

    • Jess,
      Aww I just loved waking up to this!! Thank you so much for the kind words and I’m so glad the blog means something to you. 🙂 This is definitely a reminder of why I do this!! Yes, not being able to get pregnant shook me to the core and still does here and there. I had a boyfriend who constantly reminded me of that imperfection and once he was out of my life that really helped. I think what’s helped me somewhat get over it, is being with my kids at work. It is hard to see them have such awful parents however, I know it’s my job to be mom and dad for the day (that is what teaching is all about) so I get to be their support for a whole year. And they quite literally turn into my babies. Also, I’ve watched a good friend just adopt the most adorable and loving little girl ever, so seeing that process unfold was cool. And knowing surrogacy is always possible helps as well!! It is hard, but we KNOW that we will never take our children for granted because we worked so hard to get them here. People like us make some of the best parents ever. I truly believe that. Keep your head up and pushing forward!! Good luck with the job!! 🙂 IT IS SO COOL THAT YOU’RE FROM AUSTRALIA!! I hope you participate in the contest because I bet it is beautiful out there!!!! 🙂 You can see all that info under the contest tab. Keep reading, share and stay in touch!! 🙂
      -haley.

      • Agree with all that you are saying!! I will enter the contest, just need to wait until its not raining, Its winter at the moment and I live about an hour out of melbourne on the Mornington Peninsula! I absolutely love it here, for about 8 months last year lived in Cairns, but Melbourne is so much better!! So when I am able I will get a photo! 🙂

  6. Hi Haley, I enjoyed reading your blog. My PH diagnosis story sounds very similar to yours. The doctors were looking for a hole in my heart and stopped the procedure when they discovered the elevated pressures…PH. I am older than you (the big 4-0). I was diagnosed at 38. Like you, I feel much better now. I am not short of breath and my meds seem to be working. My dream of becoming a mother came true with the adoption of a little girl this past September. There is hope for PH patients to be mommy’s…if that is what you want. Thank you for sharing your story. For me, I enjoy meeting others that are similar to me. I makes me feel less alone in my PH journey.

    • Wendy,
      I’m so glad you enjoy reading! That means so much and reminds me to keep doing this. I’m so glad you’re feeling better and that you got to ADOPT!!! I definitely want to hear more about this because I SOOOO want to adopt someday! It just sounds scary! haha. You are definitely not alone and that’s one thing I’ve discovered doing this blog. I hope you keep reading and stay in touch. 🙂 You should participate in the current contest right now! The winner gets 3 shirts, second place gets 2 and third gets 1! And I even have children sizes for your little girl. So check it out under the contests tab. Also, you can submit your story as a chance to be featured on Survivor Sunday (haley.ann.92@gmail.com) and you can also win a shirt through that. 🙂 I’m so glad you found the blog and I hope you keep reading. You are an inspiration!
      -haley.

  7. Thnx so much for this site & your blog. I am recently diagnosed with PH. Fortunately it is mild @ this point & just started Sildenafil 3x’s a day. My doc is optimistic that it will slow the progression. I will continue to follow your site. You are so right about the sick understanding the sick.

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