PULMONARY HYPERTENSION

What is Pulmonary Hypertension? Oh its simple. My lungs don’t really work the way they need to, so my heart picks up the slack.

Going into detail, PH is a high blood pressure in the pulmonary arteries of the lungs causing breathlessness, dizziness and fatigue, and a lot of people pass out…like me. These arteries carry our blood flow and oxygenated blood back into our heart to be pumped out to the rest of the body. Well, these arteries in my lungs are small and not large and open like most people, therefore it doesn’t travel as fast, and gets backed up. My blood and oxygen doesn’t get to where it needs to in time, so my heart pumps double the rate it would to get blood and oxygen through faster so I get it where it needs to go. With my heart working harder, it grows and gets bigger just as any muscle would when you’re working it. So the right side of the heart is huge, and usually ends up going into heart failure.

 

 

Diagnosis? Most doctors don’t find it until it’s too late. When you go to your family doctor and say “I can’t breathe” that branches off in so many directions. The first thing they think is asthma, which they aren’t wrong to do. But if you’re passing out you should ALWAYS ALWAYS ALWAYS have an EKG done. This should’ve been done, but they would never attempt one of me because of my age. Who thought a sixteen year-old had heart problems? Nah. By the time they catch it it’s because something went horribly wrong, or you found a cardiologist to talk to and its progressed. My noticeable symptoms started in gym class when I was eleven. I had an EKG done two years later for a science project (that I still have today) and it was completely normal. It takes a while for the strain to show on your heart, and really until then no one knows. I was diagnosed when I was eighteen, and told I had two years to live if we didn’t find treatment immediately. Oh yes, its serious.

Treatment? There is no cure for PH, but there is treatment which is geared for making the symptoms go away. Things like vasodilators (calcium channel blockers), coumadin (to thin the blood avoiding blood clots), being on a IV pump, and many more thanks to research. About ten years ago there was hardly anything other than a pump or transplant. Transplant?! Yes. Some people don’t react to treatment therefore undergoing both heart and lung transplants. I’m lucky enough that my body responds to medication.

Symptoms? If you can’t walk up a flight of stairs without stopping or passing out, you have a problem. Any exertion at all (even walking through the store) should cause chest pain, an immense amount of pain all over, breathlessness, passing out, extremely high heart rate and things like so. If this is the case you need a Cardiologist or Pulmonologist who will know what to look for.

I was blessed to finally have an answer to my “bizarre” symptoms and I fight this disease daily, and will for the rest of my life. Learn more or get involved at phassociation.org

-haley.

COMMON PH QUESTIONS

1. How are you told you’re dying, but you look so normal?

Awesome question. This is THE root cause of why patients are diagnosed ridiculously late (me, seven years), and by the time we’re diagnosed, we’re lucky if we’re alive. PH is an internal disease, not affecting much of what goes on outside of you. Since we look “normal” most doctors fall for that trap as well, and misdiagnosis us, or ignore it. PH is completely internal, and is a silent but terminal monster.

2. What can you do physically?

That differs from each patient, and what stage of PH they are ranked. I was diagnosed stage 4, and at that point I could not walk from the parking lot into the actual building before having a cardiac episode and passing out. A flight of stairs was impossible, and basically any physical activity in general. I’m now stage two (lets hope it stays that way) and I can climb stairs slowly (woo!!) Walking into buildings from parking lots leaves me a tad winded, and I can do things like Yoga, and Pilates but with managing my breathing. Little things you don’t think of (bending up and down, getting out of bed) can cause a cardiac episode for me still.

3. Wait, so it’s a lung or a heart disease?

It’s a lung disease that makes my heart work harder, therefore causing heart failure.

4. Who can get PH, and is it contagious?

Anyone of any age can get PH. You could be training for a marathon, and pass out one day, then get diagnosed. This disease is insane, true story. I’m so contagious!!! No, I’m not. 🙂

5. So, kids have this disease?

Yes, even babies sometimes. This disease is ridiculously hard on every patient, but with kids it hits extremely hard. Not only is their physical activity limited (instead of playgrounds) most of them have pumps. If they’re “sick” enough to be showing symptoms that early for a doctor to look at them, and actually tell something’s wrong, it’s usually not a good prognosis. It’s very unfortunate to say, but PH has taken a lot of kid’s lives.

6. Why have a never heard of this?

Pulmonary Hypertension is ignored because it is complicated. It’s an ugly, complicated monster that exists sometimes within the DNA of people, and its ridiculous to figure out. There used to be no research, no resources, and within almost twenty years we’ve seen actual treatments, specialists, support groups and awareness. Awareness is hard because it’s not as simple as saying, “I have cancer.” Cancer is awful, and not simple at all to those patients, but when they say they have it the public automatically understands. When you say “I have Pulmonary Hypertension” people think we just have high blood pressure. They don’t want to hear anything else because its complicated, time-consuming, and hard to wrap your mind around. Therefore, getting support, and awareness is a challenge. I bet if they saw the kids that just received lung transplants that are still in the hospital, or the amount of people in just one year PH has killed then they might give their time; this world is a mess.

7. Is it serious?

At eighteen they told me I wouldn’t make it to twenty. I have friends that have had transplants. I’ve known kids who have died. Does that answer that question?

8. Can you live a normal life?

Yes, and no. Its a new type of normal filled with surgeries, treatment, PH patient friends who are wonderful, and worrying about things that a twenty-two year old shouldnt have to.

9. Is it expensive?

In this country, its like the government, or insurance or whoever, thinks that we signed up to be sick. They get mad when we don’t pay for these expensive surgeries, or treatments yet they fail to realize, we’re trying to scoot by like every other American yet we have an enormous amount of medical bills that we “have” to pay just to keep our life. My dad and I totaled up my first year of billing when I was diagnosed, and it takes around $2 million dollars to keep me alive every year before insurance. You can imagine what that is after insurance. Having a disease is expensive. I have to decide between living my life, or actually staying alive. America’s system is backwards. I’m off my soapbox.

10. I’m so sorry you have this disease…

I’m not. It sucks for every patient who has it, but I really am thankful for the amazing changes it made in my life. It has some major downs like dying, and money, but overall I’m not sorry. I’m just…over it, in a good way.

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11 thoughts on “PULMONARY HYPERTENSION

  1. You are an amazing person. Thank you for such a lay mans way of explaining our disease. It’s so hard to explain sometimes. You are an inspiration to all!

  2. My daughter was diagnosed at june when she was 6. Her body responded to medication very, very good. Next fall she started school like any healthy kid. Then february 2014, just 8 months after diagnose She suddenly died. Serious? Yes. Monster it really is.

  3. 24 years old now. I wasn’t diagnosed until I was 10 years old, however doctors said I’ve had PH all my life. I’m currently 25 weeks pregnant with my first child. I’m on the IV drug Veletri. I’m considered Stage 3, however you would never know looking at me. Prayers go out to every PH family out there who has had to deal with this silent killer. Just know you are not alone.

  4. I was diagnosed with PH two years ago after 3+ years of visits to a myriad of doctors and tests. So far, my progression has been slow (Thank God) Because I looked healthy, many friends and family members were quite suspicious of me, the medical field. and what this pulmonary hypertension is all about. Now, I spent 10 days in ICU with ARDS–never heard of it before—very serous. Now, I have to focus on me and ignore what friends and family comment on my “so called” illness.. My focus is on the positive . Attitude !!!!!

    • Mary Ann, this situation is all too common!! If only we could turn our bodies inside out so people would believe us, and take us seriously. Keep your focus on the positive, and cut out anything (and anyone) who isn’t!! Thanks for stopping by, and keep reading!! 🙂
      -haley.

  5. My sister has this. In fact she posted a link to this article. I have seen her go from being very active, & doing everything, to not being able to do anything.. She still drives herself to all of her specialists & Doctor’s that she has to see on a regular basis.. Refuses for me to go with her to the specialists. She is a very private person, yet needs me & Mama so much . (Mama passed almost 3 yrs ago) I try & do everything I can for her, yet she still tries to do some stuff herself, which I think is great. This disease NOT only has a death grip on her, BUT also on me as well.. I do NOT want to have to bury my baby sister.. I love you Jody so much.. You are always in my prayers….P.S. thank you for posting this link, I have learned more than I ever knew about this horrible disease)

    • Dee,
      Sending positive thoughts your way for not only your sister, but everyone she impacts. 🙂 I am the same way (we kind of want to do things ourselves) but I’m glad you are there for her. Thank you for stopping by, and keep reading. -Haley.

  6. Thank you so much for sharing your story. My 20 yr old brother was just diagnosed with PH 2 weeks ago. He’s always been healthy and coughed up blood out of the blue at work so he went to his family dr, and she sent him for an EKG well they discovered that his heart was enlarged and diagnosed him with cardiomyopathy then a month later they wanted him to have an ECG done and that’s when he was diagnosed with PH. At first they were saying he would need a heart and double lung transplant now they are just saying lung. He seems to be responding well to the IV medicine they have him on.

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