How Convenient.

Six years later, and the thought of my upcoming echocardiogram (and other tests) to see if my new treatment is working is still unsettling. In a couple of days I will see my heart glowing on a black and white screen not knowing it’s fate, and I can always tell when the sonogram tech is fresh because they possess no poker face. After that I’ll walk repeated laps for six minutes in a hospital hallway to see how far my oxygen dips, and of course they will jam a needle into my arm to file away my blood in multicolored tubes.

You see, I have been doing this since I was eighteen because that’s when I was told I was dying. Eighteen is when I was being asked what my end of life decisions should be, how I needed to pay for new costly medication, I can never conceive a child, and everything I thought I knew had been completely wiped out. I will never forget all the “we love you”, “praying”, and other types of comments. The phone calls, and the overall “new” concern that fades. People return back to their lives, their normality, and their family…and yes, I’m still dying.

staygold3Dedicated to the lovely Jenny Janzer

I seem cold-hearted to many and even brutal in my attitude, however what you don’t sense is pure exhaustion. While you see my disease occasionally and you put a sad face on a status I made about my anger – I live with Pulmonary Hypertension daily. I don’t have a choice to hide anything, or forget about my lungs. I instead have to take medication, endure its side effects, wear oxygen, drive to the doctors which means appointments at the hospital, and of course the impending task of hearing how far my disease has progressed. Others who are usually the first to criticize get to kiss their children, go for a run, and probably haven’t been to the doctors in over a year. “Life is unfair” someone told me. I mean, really? You feel comfortable saying that to someone who is battling their own body, who blames them-self, and fights unimaginable grief?

Just because you do not experience, or relate to my pain does not mean it isn’t real.

Just because you do not feel my pain does not mean you get to label it for your convenience. The only label I choose to wear is “fighter.”

“She’s crazy, she’s intense, she’s just weird.” No, she’s just fighting death at twenty-four, and trying to cope with that while still alive.

-haley.

A new “song of the week” is up! Take a listen.

Yes, It’s Traumatic.

Once Pulmonary Hypertension was brought to my attention, it’s been nothing but a life altering path I did not choose, but was forced to take. The public has a notion that a disease is sitting in a doctor’s office a little more than once a year, and maybe (maybe) sometimes it gets in the way. When a disease arrives, it brings all of it’s baggage: insurance hassles (or life terrifying moments when insurance threatens not to pay for anything anymore), financial struggles, side effects of medication, unplanned trips to bigger and better hospitals…the list really could go on and on. We learn of something new all the time, and with each changing phase in life brings a new set of baggage from this disease. The load is burdensome. But, the most important, ignored, and heaviest one? The mental, and brain health struggles.

I have been living with Pulmonary Hypertension well, since I can remember, eleven, but diagnosed six years. The past two years have been exceptionally difficult with a prescription drug addiction (doctors pushed Xanax rather than looking into a deeper problem) and I felt like I just couldn’t focus. I was so distracted by pure anger, anxiety, and it felt like every emotion I had tricked myself into believing was not there finally rose to the surface. I tried to fix it myself by throwing away my Xanax, and I picked my life up and moved. Change felt amazing, it took the edge off my problem, but deep deep deep in the background I still could not get control over anxiety, depression, and rage. Lots of it. Finally, I stepped into a therapists office surrendering to my “I will pick myself up” attitude. After a lot of sessions, his biggest concern with me was my PTSD, and severe anxiety. My what? I knew I had anxiety, but PTSD was in my mind someone who survived an attack. “Well, technically you have.” That was his response.

“Chronic illness is traumatic on both levels–the physical obviously, but also the mental and emotional. People who are ill very often display classic symptoms of post-traumatic stress, even if they don’t have the full-blown disorder.” -Psychology Today

“Individuals experiencing chronic diseases have been studied with regard to depression, anxiety, and a variety of coping maladaptions, but negligible attention has been given to the PTSD potential of chronic disease over the life course.” – ncbi.nlm.nih.gov

As stated in my ignorance, I had not even given consideration to the fact that PTSD lingered outside the soldiers category; And the problem with this is that most of the world sees it this way too. We have not yet put together that a majority of chronically ill patients are also suffering from Post-Traumatic-Stress-Disorder because being told “you have an incurable and terminal disease” is trauma in itself. Not including the daily alterations we must make to maintain a new normal that we did not choose, on top of surgeries, and bad news. The dangerous thing about this trauma? We are living inside of it everyday. Having undiagnosed PTSD was not even knowing of its existence, not knowing I had triggers, as well as not being able to identify my triggers, and having no idea I was suffering intensely mentally. Instead I was telling myself that “I was always going to be this out of control”, “Never going to find an escape”, or maybe “I needed to kill myself.” Yes, those are real thoughts in the middle of an attack. They aren’t comforting are they?

“But for some, it might be better not to shrug off problems, but rather to acknowledge the dark side. By recognizing the traumatic aspects of illness the ill person can potentially break through denial, modulate obsession, and lessen rage.” -Psychology Today

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Original art by Haley Ann

 

Since I’ve opened my mind to the presence of my PTSD diagnosis I’m not going to say it has become easier. However, maintaining and openly dealing with the trauma, and triggers has lifted some weight. Now I will be able to communicate to health professionals about how I feel in the moment rather than becoming enraged, and shutting down. It has opened a door in communication that I did not know I had, and developing an understanding towards myself. The best part? I am picking myself up. I just needed someone to show me how.

-haley.

Please understand that mental health is an invisible disease just like PH. Your brain is an organ, and it deserves it’s own upkeep. If you feel like you are suffering then please find a professional to help your pain.

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” 🙂

“Slow Down.”

Having a rare disease where no one knows what’s wrong in the first place is frustrating. A word in correlation with my diagnosis is “idiopathic” meaning of no known origin. No top medical specialist in the world can tell me why the arteries in my lungs decided to shrink. Do you know how many times I have had to explain my condition to even doctors hoping to god they wouldn’t kill me by accident? Do you know how many people think I’m lying about how serious my condition is? So many patients are misdiagnosed, ignored, and not taken seriously for years often escaping a chance to be early diagnosed providing them with options, and yes, some people lose their life instead. Knowing what’s happening inside of a Pulmonary Hypertension patient’s body even during an “episode” could not only help you truly understand what they feel, it also could potentially save their life.

SOO, WHAT IS IT?

Pulmonary Hypertension is not high blood pressure in this whole person’s body. No, I do not relate to your mother’s, sister’s, cousin’s, brother’s friend…that would be regular hypertension. Pulmonary means lungs; I have high blood pressure in my lungs only. How? The pulmonary arteries themselves are very very small therefore oxygenated blood cannot move through them at a regular speed like blood would through a regular very open artery. If you asked an entire high school class to walk down a huge hallway then asked them to all walk down a tiny corridor – which one would they make it through faster?

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When the blood gets backed up in these tiny arteries (the tiny corridor) oxygenated blood is not getting to vital organs in time. The body panics, and the heart picks up the slack by pumping harder and faster thinking it can make up for this problem. Why is this bad? After a while, the heart pumping harder and faster is not a great thing. It’s only one of our most vital organs – why would it be good to over work it? As any muscle would when you work it, it grows. This may have been acceptable for the Grinch, but I’m a human and a growing heart causes heart failure. So now my lung disease is starting to affect other organs. My heart was formed normally, and was just fine until it decided to overcompensate for my deformed lungs.

WHAT IS AN EPISODE?

A lot of people might see me “slow down”, start breathing hard, or hear me tell them to “wait”. This is the beginning of an “episode” – something I have always called the very painful and terrifying moments when my body is receiving literally no oxygenated blood. Just walking around like a normal person, a Pulmonary Hypertension patient’s heart beats like we’re running a marathon. It takes A LOT of effort to pump through these tiny arteries, and get the blood to vital organs. Certain activities that you don’t even think about can upset our heart, and take it by surprise. It differs from every patient – what treatment they are on, what their activity level is, what stage of PH or heart failure they are in, how long they have been living with it…all of this plays into their daily life function.

When I decide to jump up after laying down a while (first thing in the morning, after a nap, after being a vegetable at all) my heart freaks out. My activity level just went from zero to full blast. When walking on a slight incline, or walking long distance, I can feel a dull throbbing in my head and I start to gasp. When climbing stairs, I usually can do about four to five before I have to take a deep breather. On my absolute worst days, washing my hair and applying my makeup can take hours because lifting my arms above my head is nearly impossible. So what is happening during all of these what seem like regular activities? Why am I slowing down?

As stated before, the blood is backed up in the lungs and is not moving through fast enough. My heart starts beating uncontrollably hard to push faster to start sending this oxygenated blood out to all of my vital organs. The first place where I am NOT receiving oxygen is my brain which is why the dull throbbing headache starts. My vision blurs, along with my hearing, I can’t communicate very well, and yes I’ve been known to become combative out of pain and confusion. Having no oxygenated blood in the organ that keeps you awake is kind of terrifyingly painful. If I am even still awake at this point, I usually cannot move my legs, and definitely can’t feel my arms. None of my muscles feel refreshed because they haven’t received blood flow either. This for me leads to extreme cramping, and zero movement. By this time usually I have lost consciousness. When your brain doesn’t receive oxygenated blood, no power source, it shuts off. Hopefully around five minutes later I wake up feeling shaky, and exhausted. My heart just beat so erratically out of sheer panic, and my body didn’t receive the thing that keeps us alive – oxygenated blood. Yes yes yes – we can die from this. What’s even scarier is that it does NOT take a hike to do this. It takes a flight of stairs, a walk across the parking lot, getting out of bed, lifting our arms, getting dressed…it’s just that easy.

Understanding exactly what is happening in a Pulmonary Hypertension patient’s body saves lives. Understanding our bodies helps us feel a little less like an alien too. What can you do around a PH patient who might be having an episode? Call an ambulance, provide oxygen if you have it, and provide the knowledge about this rare disease to medical professionals so they don’t accidentally kill us too. 😉

It’s not dramatic, it’s a life or death situation in the most casual atmosphere of just walking around, or getting out of bed.

Do you remember where you were, or what you were doing when you had your first episode? Do you remember the pain?

-haley.

Close the Fucking Curtain.

Yes, I tend to be a closed off person. And yes, most of the time I can’t be found because I’m tucked away with Rocco. I can only handle so much person to person time, and long for the moments I come home to only a little black cat. With that being said, I feel like it’s somewhat a great time to be alive (eeehhh?!) for introverts because thanks to companies like Buzzfeed, we can now scroll through posts that point out the hilarity in our non social-ness making us feel just a tad bit better about our habits.

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While I’ve always enjoyed my introverted side, I at one point had no problem being an extrovert. I was on stage in pageants (yikes) competed all over the place in dance, and performed many many recitals. The stage was actually quite comfortable. However, this whole disease process has yet again altered my mind and spirit in ways that I didn’t know it could reach.

I have a problem expressing myself because I feel like I have been passed around (quite literally) for many medical professionals, counselors, advocates, and doctors to see. My life has been summed up into “patient info”, test results, numbers, and expected outcomes. Anyone who ever wanted to know me could sit in on meetings that they have after doctors speak with me, and try to discuss with their team what my next life decision could/should be.

On top of my medical life story, I have doctors in my uterus watching carefully to make sure I don’t pro-create. God forbid I act humanly, one slip up, and it’s over. It gets better this time – not only are my doctors going to have to hear about this, but America too! We have all these lovelies protesting at abortion clinics calling people a whore, slut, or sinner. One slip up, and could I even have access to a safe abortion in America anymore?

Besides my medical background, and uterus issues, I also have people shaving my crotch before surgeries just in case they need access to my femoral artery. I have people moving my breasts out-of-the-way to stick EKG cords all over my body so they know exactly what’s happening inside of me too. I have pharmacies demanding pregnancy tests (which is a federal law) before I can get a refill on my new medication. When you add-on all the questions from innocent bystanders all I am left with at this point is the thought of escape. The thought of just not knowing anyone, or anyone knowing me for just one minute.

I feel exposed. I feel naked. I feel like an experiment. I feel like I have no human rights sometimes, and that I am just a body that everyone keeps poking at. So, please excuse me when I don’t update. Please don’t mind when I’m quiet, when I don’t answer, or yes, when I close my measly fucking curtain door.

-haley.

I’m That Difficult Patient.

Something very commonly overlooked when living with Pulmonary Hypertension is the meaning of “progression.” Or at least when it came to me, my brain has a tendency to forget this huge “one up” this rare disease has on us: progressive…it could always get worse.

When I finally became somewhat comfortable with my shitty lungs, and started writing about them I also adapted a very invincible type of mindset. I had my disease, but I felt like I also had control, something that we don’t have very often with Pulmonary Hypertension festering in our lungs. I ultimately had control over how long I wanted to live, IF I wanted to take my meds, and where exactly this disease could take me. It was great to be feeling “healthy”, to be positive, and to ride out the illusion that I somehow was in control of two of the most important organs in my body that already had a reputation for throwing us all curve-balls.

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My newest specialist is someone who in my eyes is all about preventative care. Her biggest emphasis is something that I, and all my past doctors have repeatedly not watched; the fact that Pulmonary Hypertension is a progressive disease, and it could get worse. I, on the other hand am all about the “now”, and gettin’ it while you can as Janis would say. I’ve moved into a rougher environment (which I don’t, and will never regret!), blown off weeks worth of medications, done things that have negatively affected my body for a temporary high, and basically thought I could keep tucking my disease away for a later time. That’s what happens when you are technically still not accepting your disease – hint hint. After taking the guidwires out, shutting down the fluoroscopy machines, my new specialist informed me that it was a great thing we did a new cath after almost four years. My pressures have not changed after all this time, and my cardiac failure has gotten intensely worse. I may feel “alright” right now, but a year from now could be questionable. Which has now led us to three new medications that are going to feel very “intense” for a while until my body starts responding. Here I sit with my morning cup deciphering through my “now” type thinking versus a future that I’m not sure I want to even keep pushing for. Is it worth it? Or is it just doctors leading us on like a cat chasing a string; am I going to be paying a ridiculous amount of money, and living in pain to only be here another ten years?

Overall, it’s a shock once again to the system. It feels like we’ve re-winded back to when I was being told for the very first time that my heart, and lungs both were a problem. After years of writing about PH, I started running from it. I felt suffocated by what I was creating, and felt the need to tuck it away quietly. It has finally come back to find me, and it’s earth shattering, hopeless, and just unfair all over again.

Despite writing, contests, shirts, and everything else I have come to discover that never have I ever been fully okay with my disease, but will we ever really be?

New song of the week finallyyyyy.

-haley.

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.

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.

Textbook Breakdown Series. Part One: PH Itself.

Okay loves this first week in November for Pulmonary Hypertension awareness month I wanted to do an entire cohesive series on the first steps to understanding PH to share with your loved ones,and to help everyone understand just a little better! Each day I will post information about PH breaking down the disease, diagnoses, treatment, and other things about PH that make it hard for others to understand. Here we go!

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So, to start with PH, we have to start from the very beginning; the disease itself. What is Pulmonary Hypertension? Not all the other things that come with it, but the actual disease itself in our bodies. Pulmonary Hypertension is first off, a lung disease that affects many many other things. Where is the “disease” or problem at? In the arteries of the lungs (the pulmonary arteries.) What is wrong with these arteries? Well, they are extremely small, and not large and open like they should be. Why is this a bad thing? Because these arteries carry blood, and oxygenated blood to a major part of our body (the heart) to be pumped out to the rest of our body. Think about trying to move an entire high school class down a very narrow hallway. Imagine that you have to get them through super fast, and in the exact same amount of time that it would take them to move through a very large hallway. Is that possible? Absolutely not, because this class is cramped; they simply cannot move as fast as they originally could in a large hallway. So, these arteries in our lungs cannot get blood, and oxygenated blood where they need to in time, because basically, its small, and cramped in there.

IMG_2467“IPAH” meaning Idiopathic Pulmonary Arterial Hypertension AKA fancy words for PH.

So, here is where it gets a little complicated. If oxygen can’t get where it needs to in time, how does it affect the body? We need oxygen to stay alive, and to literally do everything. If our brain doesn’t receive oxygen then it can’t send out signals to the rest of the body. It literally can’t even stay on, so it would shut itself off (AKA Black out.) Also, guess what else is not receiving oxygen? Your whole body; therefore your arms, legs, muscles anywhere feel like they’re cramping up. A person would literally hurt all over, especially in the chest, would eventually lose consciousness, and stop breathing if the oxygen supply continues to be cut off.

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So, I think we all understand that we have to have oxygen. Now because the heart is the one doing all this pumping, Pulmonary Hypertension directly affects the heart. This organ is the one responsible getting this blood through a very “crowded hallway” or the pulmonary arteries that are tiny. It can’t possibly get this oxygenated blood how fast that the body needs the blood, therefore its receiving signals saying that the whole body is hurting, the brain feels dizzy, and even the heart begins to suffer. What does it do with all this pressure mounting? It picks up the crappy lung’s slack, and works even harder hoping the blood will get through faster. This may get the body by for a while, but what happens when you start working a muscle hard? It grows…just like your biceps would. Is it good for your heart to grow? That may be good for the Grinch, but it’s not okay with anyone else. With your heart growing bigger, it gets tired, the pressure in the heart itself gets higher and higher. Eventually, the heart would start slacking on all its jobs, and then one day just stop; that is heart failure.

PH Heart

A Pulmonary Hypertension patient’s heart most of the time is formed perfectly. There is nothing wrong with the heart, until the lungs come along causing pressure in the lungs, therefore putting pressure on the heart. That by definition is Pulmonary Hypertension (Aka high pressure in the lungs.) Pulmonary Hypertension is a domino game of disease when it comes to the body because eventually all organs become affected, and fall victim to this disease.

There are different types of PH? Yes. Idiopathic, and secondary. Idiopathic means “of no known origin.” There is not something causing the Pulmonary Hypertension in this patient’s body other than they were born with it. A secondary PH patient means they have this disease, or developed PH because of something else.

Haley

Soo, who is PH affecting, and where do we go from here? Then check back tomorrow with my diagnosis breakdown. 😉 I hope this breakdown of Pulmonary Hypertension helps you understand this disease a little better!

-haley.