Life With PH

This Is Your Sign

Ok loves! I’m finally getting down to business. The past couple of days has been about unpacking, getting settled and I completely re-did my room because I added a much-needed desk. 🙂 Woo-hoo! Anyways, just remember Survivor Sunday is coming up like SUNDAY so I need you to submit your stories to at the chance to be featured AND if you are you get a Just Breathe T-shirt.


Moving onto serious things, I was reflecting just a bit this past week and came to the conclusion that I don’t think I’ve ever been terrified of this disease until this week. I’ve been battling with my cardiologist that I no longer want to be on coumadin therapy. It’s a pain, its expensive and I’m just flat-out tired of it. My pulmonolgist was fine with this and said to take baby aspirin and so I’m thinking I’m good. My lovely cardiologist calls and wants to speak to me about my decision and while at this appointment, I tell him that I’ve been having severe pain underneath my ribcage, I’m nauseous all the time and it almost feels like chest pain with how much it hurts. He tells me I’m too young for gallbladder problems (HAHAHAHA) and that he thinks I have a blood clot in my lungs. At first, I’m not sure if he’s serious or just trying to scare me into taking my coumadin again. Long story short, my D-Dimer blood work came back positive for a clot but my scan shows I have none! I’m still very scared at the chance of a clot because that has been one of my worst fears with PH.

I was asked this week through email if I’m dealing with anyone that is still in denial with what I have. There are a few people here and there that look at me funny from time to time, but the worst person I deal with is myself. Yep, you read that right. I guess that in a way I finally feel normal for the first time in my life so I tend to shrug this disease off like no big deal. I skip weeks upon weeks of medication at a time, go hiking in the canyon, I don’t wear my oxygen and I vacation in high altitude. However, that last part is never going to change. But yes, I KNOW, I’m terrible. I guess the clot somewhat woke me up that my health is not a “no big deal” type thing and I’m going to have to really work hard to take care of myself so I can just be here in general. So this week I’m trying to make a turn around of working out, eating healthy, taking ALL my pills and just overall trying to get back on track. However, I refuse to go to my cardiologist office to have that done. So yes, I deal with denial but not because I hate all this (well, I kind of do) but because I feel fine so I really thought I was. But don’t worry, that’s all been changing! Time for a new week, a new start and hopefully a new future with NO BLOOD CLOTS! I don’t have time for all that ridiculousness. So just in case you needed a sign to wake up and take care of yourself, HERE IT IS!



6 thoughts on “This Is Your Sign”

  1. Hi Haley!

    My name is Pam and I live in Utah. I too, have Pulmonary Hypertension. Just wanted to tell you that I am enjoying your blog! Sounds like you are a great person. Keep up the hard work of blogging, and staying healthy!

    1. Hi Pam!
      Wow that is great, you should definitely submit your survivor story to my email sometime at the chance to win a shirt. 🙂 Thank you so much for the kind words and I hope you stay in touch and keep reading! 🙂 Please stay healthy as well!!

  2. My story!!! i was dx in sep 2009! i had a hyso july of that year.. something went wrong!! My bp dropped went into shock and renal failure!! i had a hard time walking up stairs!!! i have been on the following meds tyvaso acirdia letris and folan!! i almost lost mt life ti ph in 2010!!! it has been a journey!! i do pulmonary rehab!! i also have three teenagers 16 15 and 13!!! thank you

    1. Thank you so much for sharing your story Cathy! 🙂 The randomizer chose our Survivor yesterday, however your story will permanently be in there until you are chosen! Hopefully you will be featured soon. Thank you so much for participating! I’m so glad you are still alive and I hope you continue to do well! 🙂

  3. I can relate to this, so much. I’m on my 10th year with Ph now and am on Flolan, so I don’t have to take any pills.
    I AM supposed to take warfarin….. but I just don’t. Ugh. I should start again, and I keep meaning to.. I am just so bad at taking pills.
    Anyway, I understand.

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