Pulmonary Hypertension: Next Steps

So, awhile back I publicly let my friends and colleagues know that I had been diagnosed with pulmonary hypertension. I’ve been going along spending time with  my daughter and family, reducing my work load, mentally overcoming what this means, and trying to live my life to the fullest.

Yesterday I had my second right-heart catheterization (commonly referred to as a “right heart cath”). Right-heart catheterization is one of the most accurate and useful tests to get a definitive diagnosis for pulmonary hypertension. This is the only test that directly measures the pressure inside the pulmonary arteries, and gives my doctor the most pertinent information to help her decide what, if any, changes need to be made. This is not the only test she uses; she factors in a number of details and other tests.

My first right heart cath was in 2007, when I was diagnosed with PH.  Yesterday’s showed that my pressure inside my pulmonary arteries had increased and so the doctor was going to review everything and see if changes in my treatment are needed. (I am waiting for her to call; at the time of this writing, it’s been 24 hours.)

Last night I had a weak moment and let myself cry. Unfortunately my daughter caught me (she’s six), and wanted to know why I was crying. As a mother, I told her that my neck hurt, which was true as that is where they inserted the catheter. She is a smart girl and knows more is going on, but hasn’t yet figured out what to ask. She took good care of me, reading her books to me and giving me kisses. When she went to bed, I cried some more. I don’t want to go anywhere anytime soon, and I’m not saying I’m going to do so anytime soon. It just annoys me – no, it makes me mad – that I was once so healthy, I do what the doctors say, and still, I’m fighting PH. Know what? I’m going to be selfish – I’m MAD! It’s NOT FAIR!

That makes me feel better. I know I’m not alone in having such feelings; many of us have those feelings over different things/moments in our lives. I will move along; there is too much to do. Raising and loving my daughter, my husband, family and friends.

I have found myself not being online as much, but it is still a part of my life to stay in touch with friends across the globe. And, I miss working as much as I did. I wouldn’t mind doing some projects here and there. But each day is different and to quote Forrest Gump, “My Mama always said life was like a box of chocolates. You never know what you’re gonna get”.

I have made one decision. If the time has come to put me on oxygen full-time, I’m planning a trip to England.  🙂

Thanks for listening (reading). Let me know of your questions and comments about anything. It’s good to share.

Savvy?

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Susan

Susan Cellura is a marketing communications professional with over 20 years of experience. She is a dynamic communications professional and enthusiastic team-builder, with a progressive history of success in designing and implementing communications programs for global organizations. A strategic thinker with the ability to understand the needs of multiple audiences and deliver solutions, Susan is a results-oriented problem-solver with exceptional interpersonal and negotiation abilities. Having worked in a variety of global industries, she has grown business communications in her current position via a strong mixture of strategic resources, including social media.

7 thoughts on “Pulmonary Hypertension: Next Steps”

  1. Hi, Leslie! Didn’t mean to scare you. If I go on oxygen, it doesn’t mean a timetable per say. I have avoided flying in an attempt (which probably doesn’t mean anything) to put off FT oxygen. Flying takes such a toll on my body. So, I figure, if they decide to put me on FT oxygen, I’m going to fly!!!

    1. I understood… and totally agree! Lemons into lemonade or some such cliche. 🙂

      BTW, if you start hopping back online, join Pinterest (iPhone app too). Kristen, Amy, and I are on it and it’s lovely!!!

      Love to you all!

  2. dammit to hell…it’s totally not fair at all!

    hugs and love and all good thoughts your way susan….love you! we are all overdue to get together again…totally willing to fly your way again if need be!

  3. P.S. Emily does not require bullet-proof Wonder Woman for a mother, she only requires a mother who teaches her to sally forth during the hard times. In this, you are PERFECT.

    P.P.S. I am totally up for flying out your way again, too! So happy to meet up in any way that’s easiest for you. I think we could all use some giggles.

    P.P.P.S. Oxygen is some seriously good shit.

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