Tuesday, November 20, 2012

A Semi-Charmed Kind of Life (A Thanksgiving Post)

Because of PH I am thankful for (in no particular order):

1) Dr. Joseph Marakovits: a cardiologist out of Bristol Hospital who diagnosed me. Most patients go months or even years seeking answers. I wasn't even aware I was sick yet, blaming my symptoms on other more benign things. I landed in the ER for something unrelated, and after the x-ray there showed my enlarged heart, his office did my first echo cardiogram. I am certain he knew I had PH at that moment, and he fast-tracked me to the right testing, and then to the right specialist, in record time. He may have saved my life.

2) My son: I got pregnant at an "inconvenient" time. So inconvenient in fact, that I was sure that God had some sort of plan I didn't know about yet, and that's why it happened when it did. Shortly after my son turned one I found out that not only did I have a life-threatening disease, but that to get pregnant again would almost certainly kill me. Had things happened in "my time", I would not have ever had a child.

Dihann Wilcox, APRN and Dr. Raymond Foley
3) My excellent medical care: I am lucky to love and trust my doctor, nurse practitioner, and pretty much his whole office. I am confident I am getting the best care possible, that they have my back, and that they will listen when we have a difference of opinion.

A One Month's Supply
4) The advances of science and medicine:  Prior to 1995 there were exactly zero treatments for PH. Now we have nine (I take three of them), and more on the way. Without them I would be either severely disabled or dead.

5) Medical Insurance: We estimate that my medication will cost upwards of $245,000 this year alone. That's before all the doctor visits and thousands upon thousands of dollars in annual testing.

6) My friends and family: Who support me unconditionally, even though I "don't look sick", or even need a whole lot at the moment. They are still there at the drop of a hat and rally for anything.

7) My hot Irish temper: Even though it pains me to "get my Irish up", even though I despise the feeling of vulnerability it insights, and the fact that I'm likely to burst into tears right after, the fact that I can get mad sometimes does get results. I'm seeing real change in some medical related practices because I got mad enough to say "THIS ISN'T RIGHT!" (and then do something about it). And frankly I think getting mad enough at PH to fight back all that much harder can be a really healthy thing too.

8) The Pulmonary Hypertension Association: Who has created my PH community, who gives me an outlet to fight back, and who was crazy enough to put the relatively young and more than relatively outspoken patient on their Board of Trustees and take their chances with the results. I feel like I can make a difference here, and I think that helps me continue to heal just as much as anything.

Members of PHA's Generation Hope gather in NYC

9) Other PH Patients: Who give me a reason to fight harder every day. Nobody should go through what so many of them go through. Nobody should bury a child with this disease. Nobody should fear leaving their child without a parent. Nobody should suffer the way PH and even the medications make us suffer. And there is no real rest until all of this is only a thing of the past.

And so, I find that with all of the struggle and fear of this disease, it has also brought about some amazing things. Things I would not otherwise have been cognizant of.

If you were given the chance to make your life infinitely better, but had to loose something precious in exchange, would you do it?

PH has afforded some pretty damn incredible opportunities and I would be both ungrateful and stupid if I overlooked them, even for a day, and I would like to think that I've taken this rotten situation and made a difference.

Of course I wish I'd never gotten PH, But, if given the chance, would I give it all back tomorrow? Would I trade all I've been able to do and see, trade in the incredible people I've met, for my health and some sort of peace of mind? I honestly have no idea. Would you?


  1. My mom often regrets the fact that had I not been diagnosed even a few months earlier than I was, I MAY have been able to avoid my life with PH by correcting the holes in my heart. I'm not even sure that was able to be done back then. But I keep telling her that I am who I am today because of PH. I believe it's made me a more understanding person, and I truly want to help others learn more about this illness. Would I love a "normal" life without PH? Of course. But what exactly defines normal?? :)

    1. I always say there is no guilt quite like Mommy guilt! :) You are telling her just the right thing... I for one am VERY grateful you are here and who you are! Hugs!

  2. Colleen, your question is making me think real hard... Would I give up PH, and all the good, bad and ugly of it, to have a "healthy" life? I don't know. of course I would love to get the CURE for us like yesterday, but that would mean that I'd still have all my friends, all the experiences I would never have had if I didn't have Pulmonary Hypertension: Speaking to nearly 300 nurses, singing on television, raising all this awareness that we have been doing.. I wouldn't know the strength that I have, to be able to deal with chronic illness and pain.
    Awesome question! awesome post! HUGS

    1. I'm with you on the cure part!!! But yeah... what if it is all for a reason? We're given this disease, a totally crappy hand to be dealt, but we're also given the power to make something of it. It's a gift... in a weird sort of way. Hugs to you!