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!

In Spite of PH

Kevin and Karen poses with some of their parade
walkers after Marietta's notoriously hot and humid Fair Parade.

It’s November and I am fired up. Is it because it’s PH awareness month? Possibly. Is it because I have learned a lesson in my life with PH and I am excited to keep going from here? Maybe. Final question, is it because I feel the last year has taught me something great, and I am burning to share it with the world? Well... it is a combination of all three, really. A year has passed since my first awareness month, and I have learned so much in the last year; talked to so many people; and I hope, helped one or two people along the way.

In January 2013 I decided that I was going to run for office in my hometown. It is something that I have always wanted to do, and I figured “why not now?” I am feeling better than I have in years, and I figured that if nothing else was learned, I would need to keep myself organized for my health, and to keep my PH from getting the better of me. At the end of the campaign though, as I look back at it, I realize I did something else entirely. As my wife, Karen, and I reviewed everything the other night, as we talked to our friends, the campaign volunteers, and the city officials who helped me prepare for my run for office, we came to a startling conclusion that hit us over the heads after my friend and fellow PHer Teresa Hayes stated “You live your life in spite of PH.” That’s when it hit me, she is right. Karen and I didn’t let PH rule us this year like it did last year; We lived our lives in spite of it; we did not let PH guide us, we controlled it, we took this “new normal” and just made it our “normal.” I didn’t let my pulmonary hypertension deter me, or hold me back. I actually used it as a springboard to start the conversation, I used my PH as the motivation to do this, to live this year with purpose and drive, and I didn’t realize I had done it until Teresa made her observation, and until Karen informed me that I had, in fact, done just that. Not at any point in the last year did we let PH deter us. If I had reservations about anything, Karen helped me find a solution that was beneficial to us both. I walked, I talked, I attended every event I could fit into my schedule, and I did it on my terms, in my way, making PH work for me. 

I understand that for every one of us, something may be different, that what works for me or you may not work for someone else, but it is possible to redefine ourselves with PH, and not let PH redefine us, at least not in a negative light. I have heard patients say that they feel different now, that the new normal has changed them. In some regards that’s true. Perhaps it’s a quiet fishing day now instead of a canoe trip on the lake. Perhaps its a relaxing car ride when before it may have been a bicycle ride. But you don’t have to let pulmonary hypertension change YOU; who we are at the core of our beings. That person who laughs; that person who enjoys a good book in the backyard; that person who strives to make their community better, they still exist. The only thing that changes is the means that we use to achieve our ends. You can still do what you want to do, you can still strive for something more than the sum of your parts. We, as chronic patients, have to deal with a myriad of things that “normal” people do not. That doesn’t mean we can’t make the disease work for us. I already see it in so many patients; people who have taken PH, and found a new cause, a new purpose, a new way of living that doesn’t restrict them. It empowers them to work for our community, and to work for a common cause. As patients in general go, we can do the same thing, but for our families, for our communities, and for ourselves. We don’t have to let PH define us, we can define it, and determine what this disease is to us. Is it the end of our world, or just a new chapter in our lives that we already have so much experience living? Is pulmonary hypertension a reason to curl up, or a reason to redefine ourselves and our purpose on this Earth? I think that it can be just that, a redefinition of not who we are, but what we are here to do.

Karen and Victoria play on the front porch. Life with PH
doesn't mean changing who we are, it just means altering
how we do things. Sometimes if a bike ride is not possible,
it's time to break out the bubbles for our family's
outdoor night.

I have learned so much about myself in the last year and how to live with pulmonary hypertension. This disease motivated me to throw my life into another gear, to do what I could with what I had and strive to make my world a better place to live. I used PH to start the conversation, and then to springboard from it into how we were going to make my town a better place to live. I took so much motivation from my fellow patients who have redefined themselves, and do not let this disease rule them, they rule it. We have to live with pulmonary hypertension, that is an unfortunate fact, but I believe we each can let PH rule us, or we can rule it. This last year, I learned how to not just live with PH, but how to make it work for me, how to use it, instead of letting it use me. I know one thing for certain, if I can do this, without realizing it, then there are so many more of you out there who can do this, too. We all need to find the exact path that works best for us. That is why I am fired up this November, because I have learned that I made my entire year an awareness event, without even trying. I may have lost my election (by 275 votes in a city of 15,000), but I feel I did so much more than just run a campaign, I feel I did so much more than learn to live with this disease; I learned how to redefine myself, I learned how to live my life in spite of PH, and I have learned that anything is still possible, we just have to learn for ourselves how to achieve it. 

"I Breathe; Therefore, I live." A Life Lesson From My Grandmother

By Kevin Paskawych

I know we all have heroes. We look up to athletes, celebrities, politicians; the list goes on. Patients are no different, though our heroes include spouses, children, parents, doctors, and even other patients often make the list. I have to say that my biggest “PH Hero” is someone who taught me how to deal with a “new normal” and life in general, years before I ever knew I would need the lessons. Charlotte Mayhood lived her life completely, raising five children, and centering herself in the lives of her grandchildren. She was a published poet, a cornerstone of her community, and above all taught her grandchildren to use our imaginations. My Grandmother taught me so much, but perhaps her biggest gift to me I didn’t realize until just this last year. Sadly, it was 6 years too late to thank her for the lesson, so I figure the best way I can thank her is to pass on these teachings... are you ready for it? “I’m still breathing, so I guess I can’t complain.”

It seems like an odd lesson, if you can call it one at all, and it has been my standard response to greetings for years. I picked it up from my Grandmother Charlotte, who used it as her standard response, although that is precisely why I find it special. My grandmother was diagnosed with severe Rheumatoid arthritis at an early age, doctors predicted she would be crippled by 40... and they were, more or less, right. When her first grandchildren started arriving she was beginning to stiffen, and by the time her last grandchildren were born the bones and joints in her hands and feet were fused, as she had had several surgeries to replace her ailing joints. Despite her limitations she would still play as well as she could with all 12 of her grandchildren, write her poetry (with a pen for the longest time until finally she began using a typewriter.. using her middle finger on each hand to type) and try to make herself as involved in our lives as she could. Through all of it, and the 24 years that I knew her, she never complained. If you ever asked her if she needed something, or if you simply wanted to ask her how her day was, the response was almost always “I can’t complain, I’m still breathing.” 

My Grandmother wasn’t that stubborn, don’t get me wrong. If she really needed help with something, she would ask... it just wasn’t incredibly often. After my Grandfather passed away, our family openly worried about how to take care of her, and she answered our concerns with remodeling her house with chair lifts and special furniture that made her life easier. She spent the next twelve years living mostly on her own, still insisting that most family Thanksgivings be held at her big blue house, even though it meant more work for her overall. Ok... she was a little stubborn... but her light heart made up for it. Even though she could barely walk, she loved being outside. Despite not being able to use her hands, she loved to write; and although she was in nearly constant pain for much of her life, she loved living. It’s why I admire her so much even to this day, and when a friend asked me several months ago how I was dealing with PH and my “new life” so well, I knew how to answer him. My Grandmother taught me how.

The Author with his Grandmother Charlotte, circa 1986.

 I realized that as long as I was still breathing, things could be worse, and that I needed to stop fretting over what was wrong with me, and start enjoying the world around me. It’s not easy, as I am sure all of you know, and I still have my bad days, but every time I hear myself say “I’m still breathing” I have to smile a little, and realize that in fact, I am still breathing, which means I am still here. My Grandmother was the first person who taught me to use my mind, and it lead me to study the philosophical concepts of Descarte and his “I think, therefore I am” idea. I guess now I should say “I breathe, therefore I live.” It is something I think that everyone, no matter who you are or what you do, needs to contemplate; but for us, for patients, this is something that can really help us on our down days, and make the good days even more enjoyable. We all have things we can complain about, and we do. But they are trivial when you look at the big picture. I like looking at that big picture, and even though I can’t make a friend’s wedding because of a doctor’s appointment, or my Adcirca gave me a wicked headache today; I was still here to have the headache, to see the doctor and find out how I’m doing. I am still here, I am still breathing. I can’t complain about that.

I know it’s not an easy lesson, and some patients may think that it is just hot air, but I am telling you, it works. Take a few minutes every day, and just breathe. It doesn’t matter if you are having an up day or a down day. Just breathe. Contemplate your day, think about the world around you, and when someone asks you how you are doing, I dare you to try it. Answer them with “I can’t complain. I’m still breathing.”, and see how you feel. Try it once.... I triple-dog dare you.... and remember that “I breath, therefore I live.”.... and when you crack that little smile, and the next breath you take smells a little sweeter... say a Thank You to Charlotte Mayhood somewhere in your mind, I always do.