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?