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Wednesday, April 9, 2014

Discussing PAH with an Inquisitive Child


Sadly, there isn't a flow chart that can adequately help us know how to discuss our disease with a child when they inevitably ask a spur of the moment, awkward question.  And for that reason I wrote this blog...



If you were a regular at my house, then you would hear on occasion me yelling, “La, la, la, la, la!”  I know it is a bit unusual so let me explain.  I have three small children and quite often trailers for scary movies are advertised during television programs we watch.  The remote is not always within reach so to keep our kids from getting scared, my husband and I yell and distract our kids until the commercial ends.  We do this because we like our children to have boundaries.

Boundaries are good.  It is good to exercise these boundaries when talking with young ones that are close to you as they ask you questions about PAH.  Auntie, why do you always go to the doctor?  Mommy, why does sister have that in her chest?  Why are daddy’s lips blue?  Not all of us are parents, but many of us have a relative, neighbor or a friend’s child that we love.  How then is the best way to discuss with a child the topic of PAH?

The most important key is to wait for them to ask and when they do ask have your answer ready.  The specifics of how to answer vary based on what you are comfortable with disclosing and the age of the inquisitive child.  Some things to avoid include death, life expectancy and the overall severity of the disease.  It is best to gear the conversation towards more positive aspects such as the quantity and quality of treatment available.

A few days ago while I was inhaling my Tyvaso, my three-year-old daughter looked up from playing and asked me, “Mommy, why do you have to do that?”  I briefly said, “Well because I need my medicine.”  Her follow up question was, “After you’re done can I have a snack?”  At the time that was all that was needed to ease her curiosity.  Her three-year-old mind is still developing, and it is best to keep boundaries on the depth to which I respond.  The questions will need a more in depth response as she gets older, but for now that meets her needs.

Her curiosity reached an all-time high when she found these paint tubes!
It has been difficult for me to process how I should introduce my children to the fact that I live with a disease.  The one thing that I keep going back to is the wisdom that “There is a time for everything, and a season for every activity under heaven.” (Solomon)  We must implement boundaries on the information we disclose while also disclosing enough to educate them.  Some children will be very curious while others will barely notice, but as the adult, it is our responsibility to help them understand.

By Hannah Lahmeyer

Wednesday, March 12, 2014

PH Goes To College: Part 2

By Becca Atherton


When I was just a few months old, my parents were told that I had only a 13% chance of living to the age of five. High school, Prom, getting my license and graduating high school were experienced my family never thought I’d get to experience – let alone college! But here I am today, twenty-one going to college, majoring in Psychology with a minor in Family/Marriage counseling. While going to college is an amazing experience that so many of us with PH thought we’d never get to have, there are some things about the experience that will be different for us than it would other college students.

The first PH conference I went to, I was just sixteen years old and I sat in on the ‘PH Goes to College’ panel, wanting to get some tips on how to deal with the stress of college and my disease at the same time. The students on that panel had some wonderful advice such as choosing classes later in the day so you’re not waking up super early, get in contact with disability services, e-mail your teachers before you meet them to tell them about yourself and not over-scheduling yourself when it comes to classes and after school activities. The only thing I wished had been different about the panel was their array of colleges. Everyone on that panel chose to go to a four year university – some even lived in dorms!

Seeing all these young adults up there, some going to Berkley and some even going to college out of state – it gave me unrealistic expectations for myself. I felt that if I went to community college that I wouldn’t be doing enough, that I wouldn’t be good enough. If they can go to a four year with PH, why can’t I?

PH and its symptoms are different from person to person. The amount of stress someone’s body can take is going to be different than yours. I had to remind myself that, and tell myself that at least I was going to college because there are some PH patients who can’t even get out of bed. So if you’re sitting there, thinking about going to college but not sure if you can handle the huge campus of a four year, I want you to know that community college is an option and it does not make you any less of a college student if you go.

Some of the best things about community colleges are its smaller campuses; so your classes won’t be too spread apart and the class sizes are smaller so your teacher will actually know you. When you get into a class of 500, the teacher isn’t going to know you or your health, which means, if you miss a day and need notes from that day, they probably won’t even realize you were gone. I was worried about dorm rooms in college. What if my roommates are up too late? Staying up late and not getting enough sleep has a tendency to put me in a tired mess when it comes to my PH.  What if my dorm mates got sick? I shouldn’t be around that. Staying at home was the option I chose and I don’t regret it for a minute. So I don’t get the ‘dorm experience’, I can just have my friends sleep over on the weekends if I want that.

One thing I noticed was how much cheaper it was than a four year. Sadly due to medical issues, I had to withdraw from classes last semester. Imagine paying all this money and then not even being able to finish the course? I lost money last semester, but not nearly as much as I could’ve.

Because my health was still a problem by the time this semester rolled around, I am taking this semester off and it kills me.  College makes me feel normal. I’d get up in the morning, get dressed and go to classes, hang out after school, come home and do homework. It gave me something to do and it made me feel like I was actually doing something with this life that my parents and I have fought so hard for. Sitting at home all day, not only is it boring but it makes me feel like I’m wasting the precious time that I have. I know that its not my fault and I know that it doesn’t make me some lazy person but I hate it when people ask me how classes are going because I have to answer with, “Oh I’m taking a semester off.” And I worry that I sound like one of those college kids who just got lazy or flunked out so they aren’t going to school this semester. If you are in this situation too, we have to remind ourselves that we are doing the best that we can. The standards for us are going to be a little different and there are going to be times when we have take breaks from college. Yes it means getting our degree later, but at least we are working towards it.

College can be a bit crazy and stressful, but it can also be so much fun. I’ve met a lot of great an amazing people through college and I’ve learned so much. I’ve had amazing experiences and gotten involved in a great club after school. (I did not do more than one club at a time due to stress and activity level). Just take it slow, remember that you don’t have to get everything done at once and that you’re on the right track.

Friday, February 28, 2014

Get Ready For Rare Disease Day!

By Kimberly Smith, PHA Intern

February 28th is Rare Disease Day and it’s time to celebrate! Rare Disease Day was established in 2008 by EURODIS (Rare Disease Europe) and its Council of National Alliances, and is celebrated annually on the last day of February. Rare Disease Day was created to raise awareness and advocate for rare diseases that many people are unaware of, but that so many in the world are affected by. Events are held in countries throughout the world, from here in the United States to Spain, Japan, and everywhere in between! Many people use this day as an opportunity to raise their voices about rare disease and go to their local politicians and advocate, and events are happening at State Houses across the country, sponsored by the National Organization for Rare Disorders (NORD).


The Global Genes Project, a non-profit organization dedicated to rare and genetic diseases, is also celebrating Rare Disease Day with various events and activities dedicated to raising awareness. Their “Wear That You Care” campaign allows participants to order, for a small donation, a “Genes Ribbon” to wear along with their favorite pair of jeans to show their support and raise awareness for rare and genetic diseases. Click to learn more about the Global Genes Project and their Rare Disease Day events.

There are so many ways you can celebrate Rare Disease Day! Here’s a few ways some members of the PHA Community celebrated last year:

  • Last year on Rare Disease Day Colleen went in for a haircut and decided to donate 12 inches of her hair to Locks of Love! She had planned on donating it sometime in the future, and after a little encouragement from her hairdresser, she decided it would be a great way to mark the day.  
  • Rachel made cupcakes with names of rare diseases on them to celebrate last year. Delicious!
How will you celebrate Rare Disease Day this year? Visit www.rarediseaseday.org to find events happening near you! 

Thursday, February 13, 2014

Day of Love!

By Kiara Tatum

It’s Valentine’s Day and everyone, whether you are anti-Valentine’s Day or pro Valentine’s Day, will be celebrating somehow.  This can be hard time for those with PH and single because it’s not so easy to feel free to love someone when you are coping with PH.  And those who are in a relationship may not have enough money to afford a gift for their love one.  PH is a rather expensive illness to treat.  So have three tips for the singles and for the couples.

Single Phriends:

  1. Go out with your single friends.  Maybe go bowling or catch a movie together.  Celebrate being single with other singles.
  2. Stay home with your family.  Sometimes going out on Valentine’s Day is too much because there is red hearts, roses and chocolate everywhere you turn.  So just hang out with family or invite some single friends over to spend time with them.
  3. Take a chance and go out on a blind date.  Use those newest dating apps and find someone who’s single and meet up.  You never know, the day of Love can be a great day to find your true match.

Valentine’s on a Budget:

  1. Have a picnic dinner indoors.  Make a wonderful dinner for you and your love one.  Spread out that picnic blanket on the floor and sit on the blanket and share a cooked meal together.
  2. Write a love poem or love letter to that special someone.  Sharing your thoughts and feelings this special day will make that someone special fall in love all over again with you.
  3. Take your love one to McDonald’s.  Seriously, I hear that McDonald’s is setting up Valentine’s Day seating with candlelight dinners.  That’s sure to fit into anyone’s budget this Valentine’s Day.

These are just some of my thoughts to share with the singles and the couples this Valentine’s Day. You can find other ideas all over the Internet. Everyone have a wonderful day full of love from friends and family.

Wednesday, January 29, 2014

I Can't Believe They Said That!






I Can’t Believe They Said That!!!

From one patient to another, we have all had that moment when we think to ourselves, “I can’t believe they said that!”  Sometimes it is a stranger at the grocery store, a coworker or the na├»ve family member.  Normally the closer the person is to you the more it hurts and the longer it consumes your thoughts.  It is very difficult for others to understand what life is like living with a serious medical condition.  The purpose of this post is for you to share with those most involved in your life.  My hope is that it will be a gentle guide to help the communication between you and them.  The following guidelines pertain specifically to Pulmonary Arterial Hypertension (PAH).


What NOT to say…
  • “You don’t look sick.”  Just because we do not look sick does not mean that we are not feeling poor.  This disease is a microscopic internal struggle between the heart and lungs.  PAH affects millions of tiny blood vessels that branch off from the larger pulmonary artery that is connected to the heart.  Every breath and heartbeat requires more energy for a PAH patient than for a healthy person. 
  • “It’s not that bad.”  A patient struggles regularly to perform daily tasks that would otherwise be simple.  This is incredibly frustrating and an emotional battle.  We struggle with acceptance of the limitations that are placed on us by this disease.  We struggle with the social embarrassments of needing to take breaks because of lightheadedness or turning blue when performing a task that requires an increase in oxygen.  It is discouraging to be meet with non-sympathetic statements. 
  • “I know how you feel.”  You do not know how we feel so please don’t say so.  Our high blood pressure feels very different than the more common type of high blood pressure.  We experience side effects from medications you have never taken.  Multiple hospital stays, doctor visits and medical tests are physically draining.  The way this disease affects us is individualized and it is impossible for you to know how we feel.


What to say…
  •            “I believe that you are sick.”  Instead of telling someone that they don’t look sick, you should believe them.  The way PAH affects the individual fluctuates day to day.  On the worse days it is nicest to know that you’re believable.  Denial of the impact of this disease is only harmful.  Conveying that you believe the patient is sick allows us to feel that you are willing to fight this with us.
  •            “I’m sorry this is something you are going through.”  Sympathy: the perception, understanding, and reaction to the distress or need of another human being.  Telling us “It’s not that bad” while meant to be encouraging is actually naive.  This disease is bad, life or death bad.  To be encouraging say, “I’m sorry this is something you are going through.”  It conveys sympathy to our situation.  It is encouraging to know that our pain saddens you. 
  •          “Help me understand.”  While you may not know how the patient feels, you are able to be more supportive if you gain understanding of PAH.  Listen to us talk about how diagnosis changed our life.  Learn about the science of the disease.  And one of the best things you can do to understand is attend a patient support group meeting.  A few of my friends went with me in college and I clearly remember how enlightening it was for them and how supported I felt.


This is just the tip of the iceberg of what not to say and what to say to a PAH patient.  Please add your own in the comment section below.  Remember share this article with your family and friends!

Hold fast, a cure is on the way.


By Hannah Lahmeyer

Wednesday, January 8, 2014

Looking Back and Moving PHorward: PHighting to Breathe for 10 years: Part 2

On Sept. 6, 2013, I officially achieved "Long-term Survivor" status. To mark the anniversary, I decided to retrace my steps through my old college campus where I was "knocking on death's door." Now that I am "better than ever before," I wanted it to sink in just how far I have come. What follows is part 2 of my commemorative trip down memory lane. To read part 1, see yesterday’s entry.

9/6/13
From here, I go to the art building where I "inexplicably lost consciousness." This eighth passing out episode is where the "official" diagnosed PH journey begins. I keep realizing I never counted those years pre-diagnosis until this anniversary ...

I DID IT!!


The hill that was almost literally the death of me was barely an issue. Campus is quiet; no one else is around. Total "de-ja-vu" feeling – remembering how I was walking right along the concrete columns, how I grabbed onto every other one, then every one to support myself. I was SO out of breath. Then it all happened so fast: unbelievable burning in my chest, black spots, couldn't hear my friend Cassandra finish her sentence. Then, the world went black.
 

By the way, I'm writing this part while sitting on a bench right where I passed out.

Cassandra must have called 911. When I woke up, I was on my back surrounded by medics. I remember being lifted into the back of the ambulance but being so out of it. By the time we got to the E.R., I felt fine. Yet again, I was frustrated and scared, but physically, I felt fine. I let them do blood work but refused any more tests. I had them all done before, and they always came back normal. I couldn't stand to hear another, "I don't know what's wrong with you."
 

This all happened the Thursday before Labor Day. The local cardiologist did a T.E.E. (Transesophogeal Echocardiogram) on Friday. The following Tuesday, we were at an out-of-state PH center where a right-heart catheterization was scheduled for the following week. In the meantime, they sent me home on continuous oxygen.
 

After the cath, I passed out on my way to the bathroom. As I regained consciousness, I was being wheeled into the I.C.U. where I stayed for about a week. And we were off and running. (Wow, poor choice of words, but walking at all sure felt like running.)
 

A lot more is coming to the surface, but it’s almost time for me to take Tyvaso. I need to start walking back to my car. I feel physically really good. I'm glad I did this. Sitting in the spot where I nearly died, feeling calm and conscious. My breathing is fine, and it's beginning to register just how far I've come.
 

Tore out a journal page, wrote a note and left it on the bench. I wanted a symbolic way of acknowledging the fact that I almost died in this spot.

The note said:
"Pulmonary hypertension – A rare, progressively debilitating lung disease that causes right-sided heart failure. Arteries in the lungs are constricted, making it increasingly difficult for the heart to pump blood to the lungs. The whole body is oxygen deprived. You are CONSTANTLY short of breath. A handful of medications can slow the progression, but today there is no cure. At some point, lung transplant may be an option for some patients.

I passed out – right here – seven years ago. A few days later, I found out I had had PH for the past three years and was now ‘knocking on death's door.’ I was 19 years old. Today, I am officially considered a long-term survivor. Please go to www.PHAssociation.org.”

By walking away, I was symbolically leaving the past behind. And if anyone does find it, it's a little bit of PH awareness, too. I felt very "light" walking away from that spot, very free. Classes started letting out, but I didn't turn around to see if anyone found my note. I got what I came for.

I can already hear that nagging, anxious voice saying, "Someday, you'll be back at that point. The disease WILL progress, eventually." But even if just for tonight, can that voice PLEASE be silenced? Let me just relax, physically and emotionally. 


I'm hoping that having officially reached this milestone, I will be able to keep "getting to know myself" beyond just "the girl with PH." I hope it will get easier as time goes on, provided I remain stable like I am now, to emotionally deal with, accept and move on from everything I have been through. I've been in "strictly survival mode" for so long. I'm only just beginning the emotional healing process.


The past 10 years have been one hell of a ride in every way imaginable, and then some. I still can't believe this: I AM a "Long-term Survivor." 


I am a PHighter.
I am a Survivor.
I am PHenomenal.


We ALL are.


PHenomenal Hope. PHenomenal Courage. Every breath. Every day.

Tuesday, January 7, 2014

Looking Back and Moving PHorward: PHighting to Breathe for 10 years: Part 1

It started out slowly, getting out of breath going upstairs or running laps in gym class. They said I had asthma. A year later, I began passing out. They said I had epilepsy even though my "unexplainable losses of consciousness" didn't fit the definition of a seizure. Eventually, I was gasping for air walking from one room to the other. After three years, I was finally correctly diagnosed with PH. I was 19 at the time and was "knocking on death's door."

That was seven years ago. I went from "don't get your hopes up" to embracing my "new normal." Three years later, the disease progressed. In just five months' time, "stable" was replaced with "heart failure" and "borderline kidney failure." Then, after transplant evaluations, I improved to "better than ever." Of the 12 drugs currently on the market, I've been on seven.

On Sept. 6, 2013, I officially achieved "Long-term Survivor" status. I decided to revisit the college campus where I was "knocking on death's door." I wanted to retrace my steps – and the many stopping points along the way – from the psychology building up to my dorm. Everyone else's five-minute walk became my 45+ minute ordeal. I also planned to walk from my dorm to the art building where I passed out for the eighth time. This was finally the turning point that brought us to the PH diagnosis. Now that I am "better than ever before," I wanted it to sink in just how far I have come. I was also hoping to quiet the lingering fear that this stable and, dare I say it, good "breath of fresh air" is all just a temporary, albeit wonderful, dream. It worked.

What follows is part one of the journal entry I wrote as I walked that day:


9/6/13

Long-term survivor TODAY. Weather is perfect.
In the bottom floor lounge of the psychology building writing this. The elevator was my first rest stop. Most days I was able to at least make it that far, still feeling okay. Well, here we go …
My second stop: right outside the front doors. I'm actually SHOCKED right now how short that distance felt. My next stop, a tree in the parking lot across the street, doesn't seem far at all.

I remember leaning on this tree GASPING for air. If I thought about it, I had my phone out ahead of time so that every time I had to stop, I could pretend to be texting. This tree isn't even half way yet, and many times I would be ready to cry already. I did notice a gradual incline as I crossed the street this time.

Crossing the parking lot, which is slightly uphill, was definitely my farthest distance between stopping. It took me under two minutes to reach the big rock across the lot. Felt my heart working a little faster, but I was only S.O.B. for a few seconds. This is the halfway mark. Again, I would be GASPING for air at this point. Still being told I had only "minor" health issues. Looking at these distances now, seven years later, its like, "WOW." They seem so short. It’s hard to believe. This reaction is exactly what I was hoping for. Next, I go around the cafeteria to a picnic table alongside the building. From this point on, it’s all steeply uphill …

The picnic table was gone. I just kept walking. Definitely more of a workout this time. The hill got really steep. Some steps, too. Sitting in front of the dorm now, just long enough to write these few lines, and my heart rate and breathing are already coming back to normal. By this point, I would have been BEYOND EXHAUSTED. My roommate, Kelly, said I was "the soundest sleeper she ever knew." I never realized how completely exhausted I always was by the time I got back to the dorm room.

I can't tell you how many times I felt myself starting to pass out on the way to the English building (uphill from the dorm, a lot of steps into the building). I would tell myself, "Just make it inside. Don't pass out now on the street. More people will see you in the building." We still had no idea why I was "inexplicably losing consciousness." That class is all a blur. I was too worried about staying conscious to care about Shakespeare.

So much is going through my mind. Above all else is the realization that my main thought right now is not: "OH MY GOD, I CAN'T BREATHE!" Or how badly my chest burned with every inhale, like my insides were being torn apart. Or how dizzy I was. Every step, every breath felt like it would be my last.


Check out tomorrow’s blog post to see how my journal entry concludes.