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 naïve 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!

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.

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.

The Unpredictable Road Ahead

By Kiara Tatum

It’s the New Year 2014, and we made it through the obstacles of 2013.  However, it doesn't mean that 2014 is guaranteed to be easier than the previous year.  Life is a journey or perhaps it is more like a cross country road trip with family and/or friends, and you will have great moments and memories along the trip. However, you will also run into bumps on the road. Whether it’s a flat tire, running out of gas, overheating of the car, disagreements along the way, it’s definitely not an easy trip. Having PH makes our journey a little bumpier than others.

2013 was a very difficult year for me. I was grieving a loss of my good friend, who died from PH complications.  I had built up anger, and I was feeling very depressed and hopeless.  Also, my family grew with a brother-in-law and his family as well as a new baby nephew.   I started teaching two classes a semester at the local community college, so I had stress from work.  I started dating which is another posting in itself.  I was even hospitalized at the beginning of the year.  And I was involved in some conflicts that I was getting into throughout the year because of my anger and being on that emotional rollercoaster.

But I learned a few lessons in 2013 that will help me get through 2014.  I would like to share some of those things with you which you may already know or practice now.  

1. Let go of the anger.  I’m so tired of being angry about having PH.  I want a life that is not controlled by PH, a PH free life, but I know that doesn't exist for me at the moment, so I have to learn to live within the bounds of PH.  By giving up PH’s control over my life, I see that I have accomplished more this year than I thought would have been possible.  I've taught two classes each semester, spring 2013 and fall 2013 despite being hospitalized in January 2013 just before my first time teaching two classes a semester. I spent lots quality time with my family; I went to Boston for PHA on the Road; I spent time with friends near; and talked to friends afar.  I think I have spent enough time being angry about PH.
2. Be content in every situation.  I was reading a devotional one day, and it talked about being content in every state. It's a hard lesson to learn, but I'm learning it. Whether I'm spending time with my family or lying in a hospital bed, I will be content.  No matter what the circumstance is, I have to learn to be content.  No more wanting something different, no more anger, and no more hopelessness.
3. Know you’re never alone.  As a patient or even as a caregiver, family or friend of a PH patient, we take on a lot of the burden all by ourselves.  Situations become more difficult for anyone to handle all by yourself.  There was a moment when I was so low that I didn't know what to do, so I prayed and then called a friend.  She talked to me, and then after work she came to my house and stayed with me for a while.  We had dinner out and talked about what I was going through. Through my faith, my family, and friends, I knew I wasn't alone and that I was loved by a lot of people.
4. Have ME time.  I realized that I need on a daily basis at least 15 minutes to just be with myself.  I take that time to get away from others, my cell phone, Facebook, and television.  I take that time to either write in my journal or read a devotional. Make time to be with yourself.  This can be a time for meditation, a hot bath, or whatever you need to do for yourself to relax, renew yourself, and refresh from the day.
5. Be hopeful.  Stop faking being hopeful; just be it. Throughout the year, I was trying so hard to be hopeful, but I couldn't feel it inside.  I was so hopeless about my situation of having PH, not being able to have a child of my own, and feeling lonely.  But as I said before, I'm never really alone. I'm seeing that my family is growing, I have so much love in my life from others who care so deeply about me.  I let the hope of a cure, finding love, and so much more fill me up, so that I can make it through each and every day.  

These may help you get through 2014 when you come across those speed bumps on the road.  I have been able to get through those challenges, troubles, storms, obstacles along my journey to make it through 2013, and I am going to try to make it through 2014 despite PH.  Have a wonderful New Year!!!