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Line Care Tips: That Infection Control Life

The  holidays are approaching and with that being said the simple goal for me is to stay out of the hospital! All chronic illness peeps understand this scare especially if you have celebrated your holidays among a sterile, lifeless and turkeyless environment. Last Thanksgiving I spent the night in the hospital, and the next day I had a PICC line inserted. After I was discharged (and very doped up) I chose to stop by Starbucks (cue the magic) to grab my holiday drink and their holiday turkey stuffing sandwich. It was an amazing duet with my high at the time, but it doesn’t replace all the holiday plans I had. With all this being said – hospital visits are out of our control, and it is never your fault you have landed on a gurney.

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Anyone who has a central line has probably been through all the lectures about preventative infection care. A central line, PICC line, any kind of anything placed into your body is an open wound and should be treated as such. This is where you can hold up your end of the deal and hopefully work with your body and medical providers to limit risks and hospital visits. The longer we have these lines in, the more likely we are to become used to the exposure and risk. We flat out become lazy in our routines – this is how a lost my first line in less than a year. We all do it. Mixing our meds is endless, line care is just the norm and sometimes a slip up can lead to complications which can ultimately land us in the funhouse. Yes, I know there are some people who have chronic infections which can be out of their control. If this is you keep reading along and tell me your story! Here are some quick tips to re-establish a routine, and keep your life line healthy this flu season so that maybe just maybe you can spend the holidays shopping in your PJ’s while drinking hot coco. Cue the snowflakes!

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  1. Keep Everything Covered

When you clean your line, change your tubing, mix your meds – anything – always keep your hands and face covered. If someone is peeking at your line or helping with a dressing they need to wear a mask as well. Limit your germs – washing your hands isn’t enough -YOU NEED ALL THE GLOVES! And breathing on your line? UM  no. Cover up!

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2. Those Nails Tho

I’m a female, and just as tempted to treat myself at the salon and get some flashy fake nails. Nails are a breeding ground for bacteria. There is nothing wrong with your salon treat – however – invest in a nail scrub brush and always cover your hands when mixing, changing tubing, and handling the cleaning of your line.

Nothing gives you joy like using your hold or mute button. | 20 Signs You’ve Been Working In A Call Center Way Too Long

 

3. Bleach Everything

Really though, clean surfaces are everything – especially your shower head if you sometimes shower without a dressing. Bleach your shower head – anything that can come into contact with your line.

 

4. The Air too yo

This is already a good idea for us PH’ers but invest in an air purifier. You can pick one up at Walmart and the correct filters! They are great white noise and fans as well. When changing tubing, or changing a dressing it is also a good idea to stop your fans five minutes before to let debris and particles settle instead of flying right into what you are doing.

 

5. Yo – Hair is Nasty

In patient care the infection control chapter was enough to turn me into someone who doesn’t even want to touch door handles. Hair though, HAIR!! There is a reason you have to cover yours in surgery and often it’s the first thing pulled up for anyone in the operating room. Hair is loaded with all the nasty. Pull it back when changing dressings! Do not let it get all up by your line.

 

6. Clean Your Pump and Your Phone

Your pump has probably been all over the place just like your phone. We end up setting it on so many surfaces which touch our hands again. Take your alcohol prep pads and wipe your pump and phone down a couple of times a week! Especially during Flu season!!

 

7. You Do You

I’m not going to give you advice on your actual dressing. Dressings are so personal to a patient depending on our skin and it’s always changing! What worked for me six months ago doesn’t work for me today because I developed an allergy out of no where. What you are cleaning with, what you are covering with is up to you and consulting your doctor. My only advice however is to give yourself a loop within your dressing or tape. If your line gets tugged you don’t need to feel it, and put your line at further risk. Tape down more line to give yourself tug room because it will happen.

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The loop and some Veletri blood leopard rash

…And cue the speech about infection! Only you know how your line usually feels, and if it feels questionably “off” then call your doctor! My early signs are a soreness at the line and a swollen “puff” around my line entry. The infection I was hospitalized for on my first line (pictured below) happened within hours. I saw my doctor the day before and drove home happy as a clam with a healthy line. The next day I awoke to a sore line. While getting ready, my chest around the line felt sore and hot. I kept watching too as I applied my make up, and noticed a red tint around the opening. Three hours later the red was huge then tracking perfectly up the line. My doctor responded with – “I just saw this line yesterday I cant believe it! You have to come to the hospital now!” I was a textbook example of infection. By the time we made it to the hospital my entire chest on the right side was extremely sore and painful. The faster you act the faster you will help yourself, and the longer you may be able to keep your line!

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All of these extra precautions (and probably even more!) to make you feel like you are working in a lab…I know, I get how sucky it feels to be extra. But this is your life line, and should be treated as such. You are high maintenance and it’s worth ittttttt.

If you have some tips or an infection story please comment below to help us all out! Also have you seen what products are up?! Check it out under the SHOP tab!

-haley.

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It Was Worth It.

“I thought no man would ever want to touch me again.”

Nakeyah and I giggled on the phone the other day over existential crisis thoughts, tubing issues, transplant and relationships. One of the most important things I finally chose to do was to start making connections with other young women with my same disease. It lightened the sense of alienation, and it truly gives you a feeling that you have finally found your own species. You can exchange insurance rants, your wishes to be a mom, and your paranoid thoughts with people who will not judge you for not being “positive enough” but instead collapse with you as they know exactly what roller coaster you have been unwillingly placed on.

Nakeyah writes “I have met quite a few women in the community that I connected with on a positive and spiritually growing level. We support one another whether it be helping each other understand information, or supporting one another through difficult times or experiences. It is great to be able to talk to people who actually get and understand where you are coming from.”

It is not uncommon for patients to avoid IV therapy – almost to the point of risking their lives. Why? Simply because what people will think of them. That was my story – living up almost 9,000 feet in altitude and avoiding IV therapy like the plague against my doctor’s advice. “Why?” she would ask. Simply put, for the one hundredth time, I didn’t want to be attached to a pump. In the days after it was placed, laying in the hospital, I told my mom I did not want to go back home. I didn’t want to be around people again, and I didn’t want to be around men. I had already been with men who judged me for not being able to birth their children – what about now? I was worthless to the human race.

Having a machine attached to me has been a process of regaining self-confidence whether it is through the exposure of my chest, or rocking a cute ass fanny pack because the fanny pack is truly freedom for anyone with a pump. A year and a half later, I will always be self-conscious in some situations. But I have grown into my necessary medical care despite it’s trials of trying to walk around home only to hear your gameboy device crash behind you, or the famous “what happened to your chest” questions. Nakeyah joins the army of young women with Pulmonary Hypertension who simply put – are bad ass,  beautiful and sexy.

“I struggled so much with having to be connected to a machine 24/7. My self-esteem dropped dramatically and I feel that it made me over think how others were looking at me. Its tough being young and still having to deal with the pressures of fitting in with your peers, and the world when others are so conditioned to judge others based on their looks.”

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“When I was about 14 years old, I began experiencing episodes of shortness of breath, dizziness, sweating and feeling as if I’d faint whenever walking up stairs to go to classes. I never understood the issue, but I knew something was not right. I told my mom about my concerns and she brought me to my pediatrician. I was told over the course of the next three years that I was overweight (I was about 160 lbs then.) I’ve suffered losing myself and trusting in myself. People are conditioned to view sickness or sick people a certain way.  When you have an invisible disease, it is difficult for some to believe in you or your day-to-day struggles. I have been through numerous situations with doctors, nurses, paramedics, and other healthcare professionals that do not understand the disease and try to discredit my word, or say I am not as sick as I say I am – simply because they don’t understand the disease. I had to go through years of rumors, lies being made up about me and judgment all because others don’t get what Pulmonary Hypertension is. This has taught me to have thick skin but also to trust myself and not try to prove myself or what I am going through to others.”

Ladies – and men – who currently have a tube in your chest; do you remember your final pre pump days? Do you remember how terrified you were when you realized that doing the simplest thing sent your heart rate sky-high, intense pain flooded your body and you literally suffocated? We will never forget that pain. The pain of literally starving our bodies of oxygen. Coming home from the hospital was paranoia city trying to trust that my body could simply walk to the car without trying to die. To feel the weight of our pump but the freedom in our chest made this life changing and appearance altering treatment worth it. Sean Wyman texted me in the hospital in my spiral of hatred towards the pump, “but you are alive. This will be worth it.”

“It used to be no man is ever going to touch me, and now it’s you’re lucky I even let you touch me.” Nakeyah laughs. Her photo above is proof that we are living in the new world where old ideals are dead. Disabilities have become abilities, and people attached to machines are people.

It. Was. Worth it.

-haley.

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Start Giving Patients the Freedom to Heal.

Barely one month after being released from my hospital stay in February of 2017 someone messaged me that I was “doing it wrong.” Those words exactly, and that I needed to reflect more positivity. Resentful is an understatement that I felt within that moment, and every once in a while I still allow this intrusive message to continue to plague my thoughts. Yes, I have given it more power than I should, but the truth is that the message she sent actually does have a lot of power. In my weakest moments sometimes remembering that message is a deep cut.

You see, this hospital stay was an emergency admit, in the middle of peak tourism season in which I had just opened a store only a month prior, oh, and I sold flowers and Valentines Day was fourteen days away. Did you get all that? Exactly. I was trying to run a store almost four hours away, in severe heart failure, and I was in the ICU having a specialty team put a tube in my chest that would remain there forever. As far as I could see (which was through a filter of complete panic) my life was over. The doctors told me I was dying around the time I was finally doing something I had dreamed of, and it was interrupted in the most intense way. I was hospitalized eleven days; eleven days of constant beeping, cardiac alarms, palliative care, counseling, transplant doctors, and entire team staring at you and taking notes at least two times a day. That doesn’t include the insane pain, crying, nausea, and trauma. Eleven days I laid there barely making it out in time to immediately turn around and have everyone’s Valentine flowers done. I was extremely sick; I had lost around thirty pounds, was still throwing up around three in the morning every night, and being a new IV patient which includes learning about the machine as well as the medications attached to me. I was still extremely angry that I would get up to do something and would feel my pump slam down behind me, tugging my tubing. Or that showers now meant maneuvering tubing, and feeling the warm water hit a bunch of plastic taped to your chest. The reality was setting in that I was finally attached to a machine – my worst fear. My invisible disease was finally visible, and I was on the last leg of therapy – one step closer to organ transplantation. Okay, I’m done with the existential thoughts but you get the point.

I am just now comfortable with IV therapy…a full year and a half later. I finally mix seven cassettes to put in the fridge so I am changing my medication on time. I am finally taking care of my central line after losing my first. The road is just now gentle because that’s how long it took to accept my pump, work out all the technical kinks – and I am not alone. A lot of us PH’ers struggle with IV therapy, and years later it is common to still have a flood of emotion come over you causing you to be self-conscious about your disease, your body, and to be angry or sad. It is completely normal to suddenly “see” your pump for the first time in forever or to watch people swim and scream “WHY” inside your head. This will continue – not most days but it will happen at least one of those three hundred and sixty-five.

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The point is, when I received this message I was only one. month. out. Need I repeat myself but barely a month – that’s not even the amount of time you need to even recover from the new medication. Your entire body has been invaded and is changing among a very powerful life altering drug running through it twenty-four seven. Your entire world has been shaken by trauma, paranoia about your own death and future, and you open your messages to see “you’re doing it wrong.” This is nothing against this person – because she is a good person, but to this day those words are penetrating and wrong themselves. However, they awoke me to the reality that she speaks for the common voice and attitude in America – and that’s a damn problem.

We often are so bothered by things that we can’t comprehend so we blanket them. Patients ourselves do it some time before we truly develop an understanding of our disease. If you have something serious, invasive, life threatening, or mortality awareness in general about you – you are blanketed, unfollowed, or reminded that you need to be happier. Instead of people volunteering to visit you in the pits of hell, they decide to pretend it doesn’t exist. The pain, and trauma you lived through is really a happy story – and you should be thankful. YES, IT IS but it is NOT RIGHT NOW. The right thing at the wrong time is still the wrong thing. Things need to be felt, acknowledged, and sort through. In a year it is a happy story, and a transcendent story of personal growth and pain, but right now it is barely escaping with my life. It is not okay to rush any kind of healing. It is not okay to pretend someone’s pain doesn’t exist because it makes you uncomfortable. We should be uncomfortable quite often in life – that is if we want to keep moving forward. Things that count, helping other people, feeling all the feelings often comes from a driving force of being uncomfortable, and wanting to change that.

Being diagnosed incredibly young has been a process of learning about mental health, trauma, and where I fit into in this society. A society that is obsessed with perfection – we can’t deny it. We would gladly drop a thousand dollars at Hobby Lobby making our home amazing to take Pinterest pictures for our Instagrams to prove to everyone how perfect we are. We all do it – all of us deep down wants to be a Pinterest perfect woman. Being a physical reminder that things are quite imperfect, medical bills are piling, and coverage is being threatened can have you cast out of a lot of situations when it comes to fitting into society. It is extremely hard to find a place for yourself when your reality clashes with their ideals. More and more I hear about PH’ers horrifying experiences of being corrected, made fun of, not welcome, and overall just not supported.

I get that we are unrelatable in a lot of aspects. Our pets are our only children, we post pictures of mixing our medicine, and maybe our stories on Instagram consist of hospital stays with the caption being a slight mental breakdown. We are literally looking death in the mirror everyday and trying to fight and cope with it. In a country where we have been deemed “too expensive” for medical coverage, and a “burned down house” AKA hopeless cause – difficult is an understatement. We would just like a little time to vent and be heard just like you get to after spilling coffee down your front on your way to a meeting with screaming kids in the backseat – only for us maybe it’s congress messing with our healthcare rights or our copayment is $4,000 this month. We just want to vent to our friends then move on to shopping at target too.

You can think we are doing it wrong, you can be that outside perspective and see that we are suffering, and you can do two things; you can send us a message saying “you’re doing it wrong.” OR you can send a lunch invite, and over a great meal ask, “How are you doing? How are you coping? What hobbies do you do for yourself? What was it like? Wow, tell me more about that?” like a human would. It’s really that simple.

Please save your criticism for real problems in this world, like healthcare, racism and misogyny. Please save your lousy Facebook messages, and trade them in for connection. We just need time to heal, real connection, laughter, company and we want to be heard – we are tired of being silenced by America’s expectation of normal.

-haley.

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Why M*A*S*H Quiets my PTSD.

Hello my loves – out here in what seems like a time capsule of my not so hottest moments. I have kept this blog out of sight, and out of mind for such a long time. Sometimes I am overwhelmed with curiosity to read through what moved me forever ago – and I tuck it away again – or I come back and jot down quick thoughts with what seems like years in between them. I have debated over and over deleting this website – and finally out of a sheer miracle I decided to give it a much needed facelift and re-boot. I am so so proud and thankful to all of you who have been readers even through my most difficult and “loud” phases. I remember how therapeutic it use to feel sitting down at my laptop nightly, scribbling out all my most inner thoughts to help me process my disease. I went to conference after receiving the Young Adult PH Citizen Award in 2014, came back home so inspired, and then quickly spiraled. I was increasingly unhappy in my environment, and could not focus while my mind was clouded with so much anger and paranoia. My disease was forcing me to look at things with a different shade, and the results were earth shattering and numbing. While writing kept me sane, in some aspects it backfired, but gave me a log to see how trauma and disease changes the brain.  I’ve very very very slowly begun writing over the past two-ish years mainly trying to get to know the new me – who understands my triggers, and who knows when to breathe and re-associate myself with my actual surroundings. I wasn’t fixed the day I was diagnosed with PTSD but rather it has taken two years since then of training my brain, and reactions with hiccups along the way. The person who started this blog is no longer existent which is a very heavy thing to say. My body has changed, along with my cells and skin. I have tubing that pokes out of my chest, new scars, new tattoos, and a less clouded mind – depending on the day. I have come to understand this is natural, and like I have typed before, it is okay to change amidst your survival. Thank you again, for your support and please email me or comment if you would like to get in touch or have questions. All pages on the blog have been updated so please take a peek if you feel like it!

Moving forward…

I was diagnosed with severe Post Traumatic Stress Disorder in the summer of 2016. From around August of 2014 I began to have ridiculous over the top anxiety attacks. I would zone out for hours sometimes, would breakdown over little things, lose my temper, had memory issues, and I didn’t feel like getting out of bed. I tried to take on more work to feel “responsible” to make up for my sudden weirdness, my drinking increased, and I had just quit education because it was really hard to be around kids you adored everyday knowing you could never have your own; unknown to me I was triggered, and my outlook on my disease and treatment was changing. I felt lost, and very much so an outsider – cue the alienation phase. I began dancing in our beautiful winter ceremonies that winter, and it did in fact give me relief until they ended around February. By late April, I was the worst I had ever been, completely sedated and addicted to Xanax, and I decided to move to New Mexico which ultimately opened up so many doors in healing – not only spiritually – but also with a new specialist team who knew how to deal with me. I am extremely thankful everyday that I listened to this internal pursuit to go to the Land of Enchantment.

But before I got to New Mexico it was hard to put down pills and find some kind of everyday relief while I was in my worst moments. Music seemed to bring on more emotion, and could very quickly aggravate and disassociate me. This is when I ran across MASH (the TV show) on Netflix, and attempted to give it a try. It’s basic knowledge to anyone that I love the oldies, and while I never got to really watch MASH I remember seeing it on TV from time to time (like everyone else:)  It’s an understatement to say that I was instantly hooked. Instead of sleeping all day – I would prop my phone somewhere playing MASH while I cleaned my room, or got the motivation to apply for jobs in New Mexico. MASH had a way of dulling the background noise, balancing out my thinking and surroundings to where I could function again.

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Hawkeye – for me – is someone who my soul tugs at. He remains his kooky comedic self among nothing but despair and disaster in the middle of a war. He is relatable how he fights against the trauma and injustice he feels he is experiencing; I can watch MASH and feel heard yet relieved.  Pulmonary Hypertension is my war. Hospitals, surgeries, losing funding for basic life needs, fighting just for your existence. It’s known to lead to some mental breakdowns – as we all know Hawkeye had plenty. He lost Henry Blake, and Trapper John but I lost Sean Wyman and Rebecca Lindenberg. “I’ve been fighting death since I came over here. I’m tired of death. I’m tired to death. They’ll keep coming whether I’m here or not. Trapper went home – they’re still coming. Henry got killed and they’re still coming.” -Hawkeye  Friends pass, others are recovering from the beautiful miracle of organ donation. And here the rest of us are – our oxygen tanks, pills, pumps at our side, continuing to fight for our lives.

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MASH is still an escape, and relief to my reality four years later after experiencing an internal war. I am so grateful for my PH family – my beautiful friends who I feel like they exist in those green tents with me while bombs explode outside. We all share this sense of mortality, and morbid hilarity; as Hawkeye has put, “joking about it is the only way of opening my mouth without screaming.” If you are needing something warm, funny, and relief to an active mind consider this show for comfort! Everyone is different including their triggers. What works for me may not for you.

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All of this and MASH babbling to say that if you are struggling – you are not alone. There will be a day when the clouds clear and anger subsides. Sean Wyman reminded me of that while I sat in ICU crying over the new tube in my chest. The anger has subsided, the paranoia comes in waves, and the grief will always be hanging in the background like some decorative tapestry. That is just the new normal. With that being said I am so grateful today for another summer, beautiful New Mexico landscapes, wildflowers, farmers markets, days with Rocco Ricardo, and groovy records. Peace is possible within this fight.

-haley.

 

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I Am THAT Sick. 

“Do you feel like you have quality of life?” was something asked by my palliative care nurse yesterday. Honestly, who could call this tube and machine attached to me “quality?”

I have been writing for almost five years about living with a terminal disease that is masked by this perceived normal, if you will, and the absolute frustration of everyday ignorance when it comes to people respecting and believing your reality. We are made out to be drama queens, negative, “too much”, and just about any other word humans would like to use as a buffer for their level of comfort. It’s an isolating feeling to know you are surrounded by people who will slap a prayer on a Facebook status, but will indirectly do what they can to keep your “suckage” far away from their steady life. It’s a dull feeling to know that you live among people who are contributing to the lack of early diagnosis problem by once again thinking you are just being dramatic, or negative. Patients literally die because they are told consistently that nothing is wrong.

Late January, death was on my mind quite frequently. My “end of life” wishes, and how they might find me in my home. I was having tachycardic episodes just even trying to pet Rocco, and found myself laying in the floor more often than not trying to calm my breathing, and move past that suffocating feeling. I knew what was coming; my invisible illness was working its way out.

After an almost two-week hospital stay, countless mental breakdowns, bruised arms, bruised hands, new nurse friends, and “mixing classes”- I walked away with a tube in my chest attached to a little machine. I never realized how many v-necks I own, or tops that lace up until I noticed a little white patch peeking out in the mirror. I have attempted to walk across my living room countless times before feeling a little tug reminding me that I am permanently bonded to this anchor. I forgot to enjoy just seeing my necklace resting against my bare chest, or how amazing my weird habit of rubbing my collar bones felt in which now my right one has a tube stretched over it.


Quite shockingly, the amount of “I didn’t know you were THIS sick” messages I received is more sickening than my heart failure in itself. I guess people really do want this justifiable evidence that you are in fact suffering which I guess seems understandable, but; while they see tubing they still don’t see the bills pile up for the expensive maintenance that is required to keep you alive. While they see your pump now they still don’t see you spending enormous amounts of time mixing your medication just right so you don’t accidentally kill yourself. While they see grumpy Facebook updates they don’t feel the mind numbing reality of laying in bed, throwing up, running to the bathroom every five seconds, and doing what you can to manage your pain level. While they see your spotty red rash along with your chest they don’t see your mini hospital that is quickly swallowing your cute home.

Congrats. You have your physical evidence. I am sick. My body is now reflecting its insides – and you know what? Despite whether Pulmonary Hypertension was visible to you or not, it has been this way for seven years – since day one of my diagnosis. It has always been this level of life altering since the moment they told me I did not have a good chance at a quality of life for long. It has been this horrible since the first echocardiogram when I was eighteen, or finding out I could never carry my own child. Open your eyes, listen to people, and gain some perspective on what sick means. The thought, and fact that you are stuck inside of a body that cannot carry you across the finish line, and that will cost you millions of dollars is realistic. You are allowed to feel this way; do not minimize your pain for others comfort.

While I realize I am NOT my disease, I find myself enveloped within it quite frequently. Instead of fighting it, I am making friends with it whether you can conveniently see that or not.

-haley.

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Stay Gold.

Don’t meet others expectations for you. Don’t expect anyone’s understanding towards your suffering, and do not apologize for your pain. Do set your own goals, and meet your own expectations for yourself despite what society wants for “you.” Do feel your pain, acknowledge it, and do not hide your suffering. Stay Gold to what you are, what you feel, and what you do. Stay Gold to what you need, and what you want. Stay Gold to all those little things that appear shattered and broken in your mind, but so delicately and warmly reflect you.

Stay Gold to you.

-haley.

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Awareness IS Power.

I guess you could call me a realistic type of person; for those of us who say that we often border the “negative” side to life. We are hushed, scolded, and covered up while others keep talking about their blessed life, and glare at humans who have an outcry. That’s fine, and all well for you, but my voice and my passion does not exist without a drive…and what drives me are the faults I have been born into. It’s okay to say that. I have a very faulty life. What makes it okay to say that? Well, it’s very hard to keep endless anger and pain locked inside of yourself. My organs are heavy from a daily battle against themselves, and quite frankly, I refuse to let them swim in a secret pain so that others may continuously live a life of comfort.

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The world is in a very weird, and groundbreaking place – can we all agree on that? I think because of the power of social media, life experiences, and just plain intelligence that people (and definitely our kids) are coming in tune with an “awareness.” They get political issues, social issues, climate issues, personal issues, drug issues, racial issues…all of the ugliness delivered to their LED screens, or experience this in their daily life. I feel that America’s new generations are creating a voice for themselves on racial issues, political issues, women’s rights, and yes even healthcare issues because they want to see change. All of the not-so-comforting news that the world has tried to lock away in some secret closet is finally exploding because of the want for change, and awareness. While having your head in the sand might sound lovely, appreciating and trying to help others pain is more rewarding. With awareness I feel it creates intelligent, cultured people who will connect to others easily and form a genuine respect for another persons’ life. A fabulous example of this? Humans of New York. Hearing the struggles behind ordinary faces in turn creates a sea of emotion in us, and a connection to our fellow beings.

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I will not hide my anger, or pain for your comfort. Yes, I will try to be positive while being realistic. I want America to see what such young/ordinary looking people with an invisible illness do daily just to breathe. I want everyone to open their eyes, and mind to what a person really feels with a terminal illness – not just what books and movies let you think. I want the world to see how much companies from movie industries to insurance companies are profiting off of sick beings – including children. I want people to be aware.

Awareness is knowledge. Awareness is power. Awareness is respect. Awareness can change anything.

-haley.

 

Hear what I’m currently jamming to under “song of the week” 🙂

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It’s Not Fair.

My life has been a series of a whole lot of struggles, especially lately. Life will never hesitate to jump out of the bushes, and knock you to the ground. From dealing with my health, jobs, stressful life decisions, and Rocco’s health you could definitely say I’m exhausted.

When I first adopted Rocco I had just been diagnosed. I had nothing to do, was forced not to work, or go to school, so therefore I decided to bring home a very small barely six-week old kitten. He was hard work from day one: he had fleas, he couldn’t receive any flea treatments because he was too young, he had to have baths, and he also had to be bottle fed. When he slept I slept, and when he was awake he was needing to be fed, and supervised (he wasn’t allowed to walk around because the other cats didn’t need fleas – also he was too small.) For being on bed rest, I was a very busy new “cat mom.” I cried by the end of that first week because I was so exhausted taking care of this super young cat. I noticed though the more he grew that the harder his abdomen got. He was this tiny little cat with this very distended bulging belly.

Processed with VSCOcam with f2 presetRocco was diagnosed with Asthma a little over a year later. He has an oversized heart, and lots of fluid in his lungs which causes him to start coughing in which then he literally starts drowning in his own body. My dad and I have spent hundreds of dollars on appointments, equipement, medication and beyond that have spent hours with Rocco trying to keep him breathing. Our other cats were kind of ignored because of this – and we’ve exhausted and ignored our own needs because of the love we have for Rocco.

Rocco is my kid, and he is my best friend. Moving away by myself he of course came with me, and I’ve clung to him even more than before. He is my companion, he is who I come home to at night, and he is who needs me and loves me unconditionally. Our relationship has definitely changed after moving away though. I never spend too many hours away from my home, when I drive to the nearest town for groceries I time it just right, and feel excited/panicky on the drive back because I know Rocco is waiting…even though he is probably asleep and could care less. After I come home from work, he purrs, and is glued to me. When I leave town, he comes with me. And at three this morning while he gasped for air, I cried and clung to him almost yelling at him that he couldn’t leave me yet. That’s when it hit me; how ridiculously co-dependent I am on Rocco.

It’s honestly not fair that he was put into my life with such a malfunctioning set of lungs. It’s not fair how attached we’ve become with always a threatening gloom hanging over us that one of these days his lungs will not keep going. However like I’ve said before, I’m glad he ended up with a mom who also has shitty lungs, and knew how to take care of him while others would’ve had given up on him long ago. I hope my Rocco will stay with me a little longer. His purrs, furs, grumpy attitudes, cuddles, and talkative days are what I need.

I love him so much. It really just isn’t fair. That’s all.

-haley.

Uncategorized

Textbook Breakdown Part 2: Diagnosis.

So, yesterday we covered what Pulmonary Hypertension is in itself. Now today we’re moving onto how we find PH, and who has it. If you missed yesterdays post, then click here to share or read it.

So, since Pulmonary Hypertension is happening in the lungs itself affecting the heart and internal organs, it’s not affecting much of what happens on the outside of this person. In fact, most Pulmonary Hypertension patients are young; kids, babies, teenagers, young adults, you name it. Anyone could be born with Pulmonary Hypertension. Basically, Pulmonary Hypertension hides behind a mask of youth, or “normal.”

Someone may be born with Pulmonary Hypertension, and take years to finally show it. They could be like me, attending public school, participating in physical activities, then one day feel a very unusual and horrid pain all over, and lose consciousness. Most people would either ignore it, or think they had an asthma attack. Even if this young patient was attended to by medical care in a hospital, or doctors office they would never do an EKG (checking heart rhythms) an oxygen test, or chest x-ray…why? Because why in the world would we check a very young person’s heart when they just got tired, and collapsed? When people ask why we collapsed, we tend to only be able to answer that we couldn’t breathe. People generalize those symptoms down into something like asthma. PH doesn’t have a disease appearance because it’s all internal therefore just about every person does not take the person’s symptoms seriously. A PH patient begins to think they might be crazy, are out of shape, and need to learn to keep up. Maybe they’re told that they have an anxiety disorder, or something. Basically, it is very very very rare for anyone to listen to someone suffering from PH because they can’t “see it.”

So what happens after being ignored for so long? The pressure in the heart, and lungs begins to mount and the patient begins to get worse. Not being able to walk, fainting with any physical exertion, and the downfall of their quality of life. Yes, this will even happen to kids. Pulmonary Hypertension patients can die at any time for a variety of things; blood clots, an arteries bursting, their heart rhythm becoming too chaotic, and finally their heart just stopping. If a PH patient is not taken seriously by medical professionals in time, their chances of dying increase every day.

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So what happens when a patient is actually taken seriously, and what does it take for a doctor to find PH? An EKG, and a simple oxygen saturation test should at least show some concern with a weird rhythm presenting a conduction delay, or showing the right side of the heart is working too hard. The oxygen levels should also be low. A chest x-ray, or echo should show that the heart is over sized which a normal physician would immediately want a heart catheterization done. A heart catheterization is where they insert a catheter in the femoral artery (or a vein in the neck) and move it all the way into the heart. From there using fluoroscopy (a moving xray) they can view the actual heart itself to make sure it was formed right. Then they can measure the pressures, and actually see how the heart is pumping so they get an idea of what is wrong. If the heart is formed normally, but is still working so hard to the point of failure then that tells the doctor that the pressure is coming from the lungs…Pulmonary Hypertension.

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At this point the doctor would finish the surgery, and would contact the closest Pulmonary Hypertension Specialist, or Pulmonologist to start treating the patient immediately. Depending on how high pressures are, and what shape the patient’s organs are in, the doctor would now notify the family of the terminal diagnosis, and then the patient with a very grim life expectancy.

What now? Tomorrow we will dive into treatment.

-haley.

Personal Life

Take A Stand.

I’m so sick of the world right now. I’m so done with all the racist war shit that people keep throwing fire on rather than helping. Also, I’m sick of women being attacked. If you are a woman, and a PH patient, you should definitely be re-thinking how you vote, what you support, and you need to take action.

A lot of people are surprised to find out I’m Pro-choice. As if I’m some inspirational girl who supposedly is now an evil queen because I support “killing babies.” Yea, um, you’re ignorant. You see, I just don’t think it’s anyone else’s decision what I do with my life. What color my hair is, where I work, who I talk to, what car I buy, and most importantly when I will have children. “Well you decided to have kids the minute you conceive.” Not exactly, sister Christian. Lots of people like to participate in the act of sex before they ever think of having kids. Like getting married, celebrating that with your loved one, then years later finally deciding that you are “ready” to have a kid. What makes these women so different?

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You know, in a medical setting we can never force someone to do what they do not want to do. I didn’t want to be on blood thinners, and despite my then cardiologist trying to bully me into doing so, I chose not to then fired him. When I was first diagnosed, I had to release everything and give consent that they could even tell my parents what was going on because I was eighteen. Usually, you get such high respect in the medical field of what can and cannot be done to you, and if you don’t then legal trouble will follow. But why do we lose such respect when someone doesn’t agree with our life decision? After all, isn’t this medical?

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Something we are not really familiar with until we get into a bad situation is called Body Autonomy; ones right or control over their own body and it must not be infringed upon. For example, only you can decide to be an organ donor in which you and only you have to fill out paperwork saying to do so. A doctor can’t just walk up to you and say, “I like the way some of your organs are functioning. Since you are probably going to die today, we’ll be taking those after you are gone.” Would you be furious? Yes. Because it is your body. Even after a person has died they cannot just take the organs they need because a dead body still has body autonomy…a dead fucking body still has a right until proper consent is given.

You see, women should be able to decide what they want to do with their body despite what you think. Since when did you feel the need to control everyone’s decisions when you probably couldn’t decide what to wear this morning? What’s scary is the outlaw of abortion if all these psychotic religious nutbags get their way. Women who have Pulmonary Hypertension cannot carry a child due to the eighty-five percent mortality rate. Most just collapse and die from heart failure around seven months into it. On top of that, was the fetus ever getting enough oxygen the whole time? Probably not. So now we just lost a mother, and a child. Prevention? Women with Pulmonary Hypertension already have a risk of blood clotting, stroke, and heart attack. Birth control is a very unsafe, and deadly “option.”

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Why, why, why would you take away someone’s right? Why does a dead body have more control over their body than a woman? Who would ever think that this is okay? If you don’t agree with life decisions then keep on your side of the fence, and love others despite what psychotic outbursts you think you need to be having. I’m tired of “freedom” just being an advertisement for America rather than the truth; after all, what kind of freedom are we progressing into?

-haley.