My Adcirca “Review.”

After giving much in-depth explaining on what PH is, and how we find it, I thought I would now talk about my treatment. Pulmonary Hypertension is usually first treated by a very generic version of Viagra called Revatio if Doctors think it’s even a possibility. A lot of patients actually stop reacting to it very quickly, so most doctors just skip over the whole “Revatio” option to begin with. That brings us to more high-tech, crazy strong vasodilators and other medications to keep the blood vessels dilated so we can breathe. If that doesn’t work, they might try an inhalable solution, or finally be put on a IV Remodulin Pump that is comparable to a diabetic’s pump. If the Remodulin doesn’t change things then heart and lung transplant options are discussed.

So, because my body miraculously reacted to medication, I don’t know much about experiences with the other treatments. Therefore, I would love to give a little medication “review” on what my treatment does for me.

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I was put on Adcirca and Norvasc almost six months after my diagnosis. We tried Revatio at first, which failed, and then they discovered I reacted to the others beautifully. These are very high-powered vasodilators allowing me to breathe, but causing all sorts of other issues throughout the body. My first year on Adcirca and Norvasc was absolute hell. The swelling was the first to hit. I began to notice that my feet would ache, and feel “tight.” When I looked down I didn’t even recognize my feet at the start of this swelling “adventure.” Over the next couple of months it just “grew” to be worse. My feet would swell around my shoes only permitting me to wear these open type of moccasins. The pitting edema was so bad that you could push into my feet like memory foam, and the fingerprint would remain. Not only was this extremely ugly (for an eighteen year old I thought it was the end of the world), but this was very painful. Finally, like magic, I woke up with skinny ankles, and the swelling initiation disappeared.

…Until the warm red patches started. It started in my knee’s with an extremely hot sensation. When I took my pants off, I noticed that I had a straight red line right above my knee’s, and continued right below them. It literally look like someone took a red marker to my legs, and on top of that I, myself, wasn’t warm, but my knee’s were probably a thousand degrees. I would seriously make my co-workers feel them just to make sure I wasn’t going insane. From my knees, the red sensation moved to the back of my arms, and my face which is now where it currently sits from time to time. What’s so strange is that I am physically cold, and want to cover up, but my skin is on fire. If I’m in the sun, or if my body temperature elevates, then the red patches strike! On top of the red insanity – I already have rosacea in my face. When you put this Adcirca rash over it, I look INSANE. This is why my makeup is so sacred, and is like an art to me. I have a lot of uncomfortable, and not so cute things to cover up due to medication, my natural face, and skin damage.

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For those of you suffering from “Adcirca face” I recommend a green concealer that eliminates redness! LA Girl Pro Conceal has been my absolute favorite to use so far, and yes, it’s very affordable at only $5. Use a sponge, or a brush to even the green out over the red area and you will notice how it “tones” it down. No, this isn’t a magic wand so you will still have some red. On a bad day, I recommend using it underneath foundation, and again over the foundation if need be.

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On top of the redness, Adcirca, for me, causes a lot of pain. If I ever skip a dose, then start again it’s almost like having the flu. Adcirca dilates all the blood vessels in the body – not just the lungs (kind of like how chemo kills everything – not just the cancer) therefore the skin turns red, and the vessels in even your eyes, and head are dilated too. When that happens an extreme headache follows, and for me body aches and chills. Also, my eye doctor told me that Adcirca has pretty much destroyed my vision. Every year I go we have to check on my eye pressures, and anyone around me knows I can’t see shit.

Overall, Adcirca does the job, and as long as I’m consistent the troubles will be few depending on how it wants to act up. I however wish we could find something that could cooperate with our bodies just a little more, and maybe just maybe an actual cure. 😉 Have a lovely Sunday! Check out the “Song of the Week” to flashback to a very uplifting tune, and also check out the Facebook for the NEW T-SHIRTS!!

-haley.

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Thank Y’all.

Finally, I am home. I have nothing left but exhaustion, and happiness. This was such a perfect trip! I wanted to thank my readers, and the PH Association for making it possible. This was an absolute highlight of my life. Most of you followed on Facebook, and Instagram, and thank you for that! I am so glad you got to see the events unfold online. To those who I finally met in person, that was such an uplifting experience. As most of you know, I was nominated for the Young PHA’s Outstanding Citizen Award which still baffles me. I watched so many other PH’ers get on stage to accept their awards, only to hear about all the amazing things they’ve done. They are some PHenomenal people doing PHenomenal things! It was hardcore proof of the importance of connecting with other people who are affected by the same disease as you. Get involved! It will change things. Congrats to all of those who accepted an award, got to attend conference, had an amazing time, branched out, and learned. Everyone has done amazing job in the PH community.

As I’m coming up on my fourth year anniversary of being diagnosed, I’m reflecting heavily on my original feelings towards this disease. How absent I was, blank, unresponsive, and I possessed not an ounce of fight. When you are diagnosed with anything it’s really starting a challenge of overcoming yourself. That sounds easy; you know you better than anyone else. Except, most people leave out one huge detail about a diagnosis. You are no longer you anymore. From day one, you are wearing a completely new skin, adapting to what feels like a completely new body, treatments, a new circle of people (or survivors) and everything you thought you once knew about yourself is dust. Well, some of it. Now you will be tested on your mental, and emotional strength, how far will you go to physically overcome, and to one day make it to an infinitive finish line called “survivor.” Overcoming yourself is not easy; it’s the hardest thing you will go through. In the meantime remember, that mental dominates physical. If you can understand, comprehend, and get a handle on this mentally…your body will catch up. Mind over matter. I had to dominate my own self, swallow pride, not listen to certain thoughts, cut certain people out, let doctors in, and really figure out what it is I exactly needed. It really is possible to pull yourself out of that dark place. The only thing keeping you down is you. Look at yourself and heavily evaluate what is going on, and what needs to be changed. It took almost four years exactly to get somewhat on the right track. You will fall off every now and then, or take a wrong turn. I struggle mentally, emotionally, and physically. This is a lifetime disease, and until we can get that cure, it will be a lifetime battle. Find the will to live, and hold onto it. There is beauty in this struggle. Who knew I would get to wear glitzy shoes, and accept a ridiculously heavy glass award, meet fans, take pictures, stay in a four star hotel, have people ask me questions, and have my face and story all over the world because of PH? Quite frankly, I’m thankful.

Train your mind to see the good. Mind over matter. Thank you to everyone for showing me the good side of PH! Its been a trip. Pictures are below! Thank y’all again.

-haley.

Instagram! @haleyann92

Facebook.com/phenomenalhaley

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