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.

http://www.phassociation.org/AboutPHA

Tuesday, April 21, 2015

Back at it...

In case anyone has been wondering if I am still up to no good (after more than a year being exempt from blogging) the answer is yes.  That is the would possibly be the most outlandish question I've heard in awhile.... :P

Anyways, hey world. I would love to give the excuse and say that life has been super busy, but that would be the longest reigning lie, because life is never not busy. So let's just say that I've been living it rather than writing about it. I am on an early evening coffee break and decided to pop down across the street to the good ole Stone Creek to publish some of thoughtlings.

I like 2015 so far.  The winter months scooted by and left the world with that strange cross of 70's one day and 45 and snowy the next. Regardless of whatever mother nature wants to toss around in the month of April, there is green grass and the hope of May in just a few weeks. May is such a glory month.  It brings back nostalgic thoughts of walking around the fox river at the end of spring semester or pick up ultimate frisbee games on Carroll's football field. More so, I've learned to love May for the fact that it kind of marks the beginning of temperate outdoor cycling season. Also, I love romping with the dog in the woods to watch everything bud and turn bright green. Ah, so enlivening.

We made it on another international adventure about a month ago. This year's tropics trip was the with the Slattery women. We found ourselves in Jaco Beach, Costa Rica for a glorious week. I usually get pretty stir crazy and crispy the few weeks prior to leaving. CR came just in the knick of time, like I didn't even have the chance to realize how badly i needed it until we returned...

It was the perfect week of sunshine. It was pretty much upper 80s-90s everyday. Its considered dry season March-September.  We didn't rent a car this trip, so it was back to the good ole fashioned walking barefoot on the beach to get anywhere... yeah, it was as awful as I am making it sound. My favorite morning activity was waking up and hanging out on the balcony for hours. Hear and feel the breeze, enjoy the warmth but not be directly in the line of the UV rays. To me there is nothing more glorious than waking up, sipping local coffee, and dancing to Pitbull on the 5th floor condo balcony. Total.Soul.Rekindling.

We had a few excursions planned as well. On Friday afternoon of our week there, we found ourselves in the rain forest canopy ziplining through the treetops. That is a pretty fantastic to see the coast line from a distance in addition to appreciating the jungle. One of the groups ahead of us had this huge, burly guy that looked like he must've been some sort of athlete. I later found out it was the Miami Dolphins center, Mike Pouncey. To say the least, I am not a fan. Anyways, I would highly recommend anyone in a rainforest to check out the ziplines. It helps a lot if you don't have a fear of heights, its easier to appreciate the scenery around you rather than freak. Don't worry, by platform #6, my mom had nailed it.

Another activity we partook in was ATV tours through the back country side/jungle. We had our own private group of just us. It is an awesome way to check out the country side. We came across a lot of farmers harvesting a ton of things: avocados, palm oil, bananas. Missy (my SIL) had pointed out a neat fact, the brahman cows looked so happy, proportionate, and healthy. CR lacks the human growth hormone in their drinking water that America is so abundant with. Our guide was freakin awesome. He took us to a waterfall to explore around and dip into before we headed back. This time of excursion also helps if you are comfortable on ATVs b/c those machines are work horses and need a lot of respect. As stated above, with it being dry season, there was a TON of dirt kick up. They prepare a rider well with face shields on the helmet, sun glasses, and face masks. Much needed. I haven't been that dirty in awhile. The roads were pretty steep on the open end, often times the valleys deep below you b/c we were riding on the mountain sides. Amazing panoramics. We stopped at a roadside bar along the river for a few local brews before hitting up the last lag of our journey home. We stopped at an overlook to see all of Jaco Beach at sunset. Its probably the view we had of the whole beach all vacation.

We walked a ton, probably close to 5-8 miles a day just because anytime you wanted to do something, eat, shop, etc it required us to walk from our far end of the north beach to town. Town was 2 miles round trip. On Saturday morning, my mom and I walked the entire length of the beach and back, it was probably at least 2 hrs of walking. I think I actually walked so much on the sand that it started to eat my feet raw. I was uber excited to break in a new pair of chacos this trip as well. The last ones had to be retired after Thailand this past October.

We ate really well this this vacation too. It was pretty easy to figure out which places to check out. Ask around or hit up tripadvisor and see what the top 5 restaurants were- this served us well at least. The evenings in Jaco were the best: 75 degrees with no humidity. Our favorite place ended up being this place called "Side Street Bistro" which was a specialty sandwich shop. I could've sucked down way more Strawberry Mint Moquitos than i allowed myself to. It was awesome because this shop had a sister restaurant we went to our last night in CR. This was the most expensive evening for food. At this point, its not about cost and its the enjoyment of company and appreciation for the food and how eclectic it really was. I mean really, coffee and cacao encrusted steak tenderloin. Oh baby. This is exactly why I could never be vegetarian.

It really was an awesome girls trip and I am so glad I got to experience it with my mom and Missy. It was awesome b/c we would wake up in the morning and decide what we wanted to do for that day (unless it was a day we had our excursions planned). Most of the time is was just walking the beach, hiking along the coast while the tide was out, or just hanging at the pool next door. CR is such a neat place to experience. There was one early evening we were in the pool I heard some sort of bird overhead and I looked above and there are two scarlet macaws. What we have in the great gray squirrel, CR has in all types of iguanas/lizards. The last full day we had in CR, we went hiking up along the mountain side and heard some rustling and screaming in the trees. Next thing I know, there are 2 monkeys playing tag in front of us! Sweet.

I will not lie, the way back the MKE was probably my most memorable time traveling through the airports... We left for San Jose around 10:30am for a 2pm flight. We made it through all of the airport stuff and to our terminal by 11:30AM, so we stopped at the airport Quiznos for a sub. My mom and I stopped to grab some munchies for the plane ride at the convenience store and spent $40 on 3 granola bars, a bag of twizzlers, trail mix, and some chocolate covered almonds. I forgot to mention above: Costa Rica is a little more pricey than I expected, although any airport is gonna kill you with their prices. This will come into play later on.

San Jose-Charlotte NC was suppose to be a 4 1/2 hr flight. This is truly no problem when your last trip was 19 hrs. In the bag. I talked with a man in his late 60s pretty much the entire flight. His name was Forrest the snowbird who lives in Indianapolis 1/3rd of the year, AZ 1/3, and CR the last 1/3rd. He had been traveling to CR for more than 20 years. It was fun discussing culture and culture with him. He ended up going to visit a friend his first trip ever and met a ton of locals through all the road cycling he did. He had some pretty amazing stories of riding the mountain roads in CR. Forrest was sitting on my right. On my left was this 17yr old Canadian boy that preceded to tell me about his love story with this Austrian girl he met 5 days prior. "Her name was Angelica, which means from the heavens. And she had the bluest eyes of anyone I've ever met." I then asked him, "so blue, they were creepy??" He didn't quite get or appreciate my sarcasm. That's ok, I remember being his age and being on my 1st independent international excursion. Its pretty mind blowing in the best possible way :) I just let him jabber his guts out about his few weeks surfing and first love. It was mildly entertaining. He also look like he hadn't showered in about a week, however he didn't smell. I think I appreciated that about him the most.

Once we landed in Charlotte, I didn't realize how late we really were landing. We had an 1hr 20min before our plane to MKE. Pretty much everyone on our flight had another flight to catch within the same amount of time. We all got off with the feeling of rush at its finest. We got off basically running to immigration to get the passport stamped (which pretty much took forever), then bolted over to the baggage claim. Missy got her bag- had it rechecked and ran over to security. Good ole American security which requires taking off of shoes and pretty much all clothing as a general rule. While we waited in line, I could just feel the adrenaline pump through my veins. This is my domain. I love this shit. Unfortunately, i have been in this situation more times than I care to admit, but you learn to love and laugh at them because what else can  you truly do?! Also, we were already in the US, so what is the worst that could happen? My mom was just a nervous wreck (she's a newbie ;))  We hiked our way through security and checked our boarding pass, which was entirely wrong on Terminal and Gate numbers. In the heat of the moment, we kept running on the fumes of epinephrine and ran to the gate our tickets said without checking the screen. Well, there was no "A12," in fact we were on the entirely wrong end of the airport and we literally had 8 minutes get back to the other end. Those people you see running through airports like ridiculous fools, yeah that was us. I forgot how fast you fly on those walking conveyor belts when you reach the end of them. By the time we finally made it to our rightful gate, it was 10min after take off time. We would've known that our flight had been delayed an additional 30 min if we would've checked the screen, but it was so much better after all that sweat and rush to find out upon arrival to the gate. We made it. I can honestly say, I didn't give up hope once. The very moment I found out our flight was delayed I was dripping sweat and so filled with joy. This is the best kind of natural high a person can experience. Screw the illicit drugs, become an airport runner. Boomshakalaka.

While I am on my high, we had to walk out on to the tarmack like in the 1970s to board out plane. This means we were outside, where in Charlotte it was a gorgeous 65 degrees and breezy. I facetimed Joey while piling our bags on to the tram and waiting to board. I don't think he heard a word i said but at that very moment I felt the most empowered I had in quite sometime with that wind blowing through my hair. Winning. Thank God, the woman ended up sitting next to was as chatty as I am. Fastest 2 hrs ever.

Once we landed and had all of our things collected, it was close to 1AM and all the Slattery women were STARVING. The only thing we had was subs at 11:30am, a granola bar a piece, and a tid bit of trailmix. We preceded to eat twizzlers and chocolate covered almonds at these wee morning hours. Then the idea of breakfast struck our fancy. We found ourselves on the eastside eating omelettes at Ma Fisher's with the regular colorful Tuesday morning crowd. Joey was even there to meet and greet us.

After all was said and done, I gave my puppy the biggest hug and fell over asleep.


All in all, an amazing vacation from start to finish.

Since then, just been living the dream.  Saving lives to pay the bills. Enjoying married life a lot. Watching the loved ones around me grow up with us. A few are starting to have kids on purpose. Taking advantage of time off and appreciating life's happenings. Its funny how blogging always gets me reflective, puts me in a good place to remember that I am a pretty stinkin blessed individual to be living the life that I do. That being said, its time to peace out. Its date night and we're making mussels and drinking good german reisling.

Later world. Thanks for always bringing me back to that happy place. :)