Thursday, November 12, 2015

Paint Me Periwinkle.

Its November!....
I am not totally sure from where or how we got to this point in the year, but here we are mid month and only a matter of time before we must begin the annual Polar Vortex #3...

There is something about this time of year that is somewhat significant to my everyday life. November is Pulmonary Hypertension Awareness month.  PH is high blood pressure in the pulmonary artery and places a lot of pressure on the right side of the heart. This in turn causes the heart to overwork  and get bigger and weaker, thus creating right ventricular heart failure, difficulty breathing, tachycardia, swelling, fainting, and untreated- death.

Normal pulmonary artery pressures are typically between 10-25mmHg. My number on diagnosis was 56. That's double what it should be. I know many patients that are much higher and into triple digits. Its a pretty relentless disease to have. There is also no cure at this point, only medication to help maintain and hopefully lower pressures. Now at this point in the blog post, I am done laying out all of the cold hard facts, because it sounds pretty pessimistic. And it would be if Western Medicine wasn't so amazing! The realm of PH therapies has grown exponentially in the last decade. It's a good time to get diagnosed with PH because there are over 10 different types of meds, in the 1980s there was 1.

Now you're probably wondering, how did this all start? Well here is the skinny version of the last almost 6 yrs:

Let's hop back to January 2010: I went to visit Joey in South Korea over winter break my junior year of college. We hike, climb mountains, walk, and climb some more stairs. I can't quite seem to catch my breath most of the 2 wks I am on Jeju Island. I have always been active, but maybe it was the mountains on the island that I wasn't used to. Fly back to America. 5 days later attend a YMCA bootcamp extreme class with my very good friend Jess. Faint and face plant after running up 4 flights of stairs. Wake up to find multiple people in the class hovering over me thinking I had a seizure. The entire time this is happening the "Waking up in Vegas" song by Katy Perry is playing. This song has permanently scarred my well being ;) Go to ER-CT scan-observe overnight-cardiologist on call was smart enough to order an echocardiogram with a bubble study- boom diagnosis.
boom- death sentence. do yourself a favor and skip any website on a google search unless its provided by the PHA or mayoclinic. Transfer care to specialist in MKE. Started meds. Fight with Carroll University nursing program because the dean of the nursing program is a freaking dingbat and decided for me that I didn't need to be spending my last 2 years of life in nursing school. Achieved the sweetest justice the day I graduated 1 1/2 yrs later. Eat it Angie, you are so lucky we didn't take you to court for medical discrimination. (If you couldn't tell, my family and self included are a little bitter to Carroll Nursing...!) Heart remodels itself from the miracle drugs I am on. Move to Milwaukee. Work for my cardiologist for 3 years. Meet some incredible friends. Get engaged in the Swiss Alps. Adopt the world's most adorable puppy. Start work at the Milwaukee VA.  Continue the Slattery tradition in getting married in the UP. Honeymoon in Thailand. Enjoy every aspect of my life that I am capable of. etc, etc, etc :)

Now it sounds pretty fluffy, especially once you get to the last part. Let me fill you in on some of the details of this past year.

I was mentioning how awesome modern medicine is in the the above paragraph, well I was maintained on inhaled therapy for about 3 yrs solid. Then Orenitram (oral version of the same inhaled drug) came on the market. I was trialed on this pill for about 4 months and came to find out I had experienced rebound. This means my pressures were maintained around the mid 30s for more than 3 yrs and they shot up to the 80s in that short time span. I got the phone call from my cardiologist on December 4, 2014 after finishing my yoga class that my heart had "deteriorated." I had lost 2/3rds of my normal heart function. That pretty much destroyed any zen I had going :P I had to be admitted to the hospital to be started on IV drugs if there was any hope of saving my right ventricle. My body just never quite took to the Orenitram like it needed to.

After getting this news, I felt like the world's largest failure. I had been so rock solid for those 3 years. My doc would ask me to talk with newly diagnosed patients, interviews with various media, etc- I felt like I was somewhat of a poster child for PH. To have that all taken away in a matter of 4 months... really hurt... deep. This meant I had an activity restriction for the foreseeable future and anyone who knows me knows how difficult that is for me...  The hardest part was that it took only 4 months to have my heart completely fall apart and a much longer time to get it back to where it was.

Now there is nothing ideal about being on continuously infused IV medications. I am tethered to a machine all the time. It is an extreme medical emergency if my pump ever stops running. I have a central line coming out of my chest AKA "boob tube :)" I am constantly fighting the risk for central line infections.  Showering is much more complicated. I can't swim in water. I have to perform alchemy (mix my drugs) every 2 days because the drug half life is so short. My drugs and supplies are over $25,000/month. A month! The drug being infused directly into my heart is a systemic vasodialator. This means it causes my blood vessels to be extremely open, thus side effects create lots of wicked headaches and bad flushing. Sounds like fun, right?! This is my cons list.

Here are the pros:
I have life again.
This IV miracle drug turned my huge, floppy, and hot mess of a heart into the healthiest its every been in a little less than a year. Pressures 12/14 were 80. Pressures 8/14 were 34. That is better than my normal when on inhaled therapy. I can run at the park with my dog. I can walk up the big hill at work for my 12hr shifts. I could start road cycling again. Joey and I went to Eastern Europe for 3 weeks a few weeks ago and averaged walking about 12 miles and climbing 70 flights of stairs a day. I feel like I did when I was a teenager, in my pre-PH days. Insane amounts of energy. I never realized how sick I was until I had gotten better. Some moments I forget that I even have PH. I am the strongest I can ever remember being.

I am once again back to PH living with me, and not I with it. I will always acknowledge how insanely blessed I am that my heart responds to the drugs. I also know how blessed I am to have my medical team, family, co-workers, and friends. These are the people I know will always have my back and provide support.

I have also learned a lot in the year of 2015. The biggest lesson is to always appreciate what you can do. Tonight, I went to hot yoga and my focus was on staying balanced in warrior 3 because I am strong enough that my heart isn't racing at 170/beats a min trying to go through a single flow. This was a first, and a wildly healing moment for myself :)

Well if you've gotten to this point in the blog post, you probably know way more personal stuff about me than you could ever want to, but that is also kind of the point of raising awareness. This is the first time I am publicly opening up about my past year, daily experiences, and successes. There are only a few select people that even know I have PH because that is how I like to keep it.  However the point of raising awareness, is sharing your story.

So basically,
Thanks for reading. Thanks for supporting. Thanks for putting up with my shenanigins :)
And if you were confused about the "Periwinkle" comment in the title, thats the official color of the PH ribbon.

No comments:

Post a Comment