PHighting Words: A Column by Mike Naple
Greetings! If you’re reading this post you most likely are: Living with pulmonary hypertension; have a loved one, family member or friend who is fighting this rare disease; a healthcare provider; or have joined the fight to find a cure in some advocacy or research capacity. Whoever you are and however you landed here, welcome to this space.
My name is Mike and I’m a 30-something living in Washington, D.C. I met my PH diagnosis in April 2016, and it has been a fraught relationship since day one. More than “it’s complicated,” I would say, “it’s exhausting!” My PH is considered idiopathic, so doctors have no definitive understanding of what is causing the disease. They just know it’s in me. It can be controlled, but not killed off completely. There’s no “Mortal Kombat” conclusion to this fight.
But that doesn’t mean you don’t suit up for the battle.
This initial entry has been months in the works. Plagued with writer’s block that produced many fits and starts, I didn’t know what exactly I wanted to say. I felt unsure about what I could add to the conversation. I already had written about the journey to get my PH diagnosis (you can read about that here), but surely I have something else to say beyond the struggles I faced just to get to the place I am at today. As a communications professional, I believe it’s important to offer one’s unique perspective rather than be just another voice in the crowd. Yes, we all are fighting this disease together and there is certainly power in numbers. But we also deal with it differently, as individuals, each with his and her own set of circumstances.
Some patients have been fighting PH for years. Others, like me, are still adjusting to the “new normal,” also known as experiencing breathing struggles all the time. I was at a birthday party over the Fourth of July holiday and I danced only two songs before I had to stop and use my oxygen. Boy, was I sweaty! Some of us are fighting this disease while juggling the responsibilities of parenthood, a job, or taking care of a family member. Some of us don’t like our doctor. Some of us are better advocates for our health than others, while some in this crowd are still learning and testing their limits. Some of us are unable to access certain medications or treatments with or without affordable health coverage. And many of us struggle with the stigma and vanity at play when wearing oxygen in public, yet have an understanding that it is the oxygen that helps us live fuller lives.
I have spent nearly a decade working in political and public policy communications. I love using words and storytelling to create narratives that help advance policy changes that directly affect people’s lives. It’s vital that we create spaces for people — including those living with rare, chronic illnesses — to foster dialogue about their experiences. It’s what helps drive the kind of change and awareness that can lead to new policies, investments in research and, of course, potential cures. Just look at what we’re seeing with the U.S. healthcare debate. On a personal note, I also find myself writing whenever I’m trying to work through an issue or make sense of some of the weirder or scarier things that can happen while walking the road of life.
With all of that in mind, I thought I would take to writing this column. In this space, I will chronicle my experiences with pulmonary hypertension and discuss the different ways that PH can shape someone’s life. Another reason I’m writing this column is to offer a voice as a youngish male patient living with pulmonary hypertension. After my diagnosis, I looked for stories from other people about how they manage living with their disease. The overwhelming majority of testimonies I found were from the female perspective, until I came across a Facebook group started by men to build community among male PH patients. As I wrote earlier, while we’re all in this fight together, it is important to create space to discuss individual experiences. This platform often will offer my perspective as a guy struggling to live with PH.
I named this column “PHighting Words” because when I suit up for battle, I like employing words to fight for my space and to advocate for myself and others. I look forward to cultivating this column as a space for raising awareness — for dialogue about PH, disability rights, advocacy around rare and chronic diseases, answering questions from readers, and learning from others along the way.
Follow me on Twitter at @mnaple.
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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
About the Author
Andrea Rice
Hello Mike Naple: You were diagnosed in April of 2016 and I in December of same year. I remember when I was in my 30's 2, young and determined not 2 let anything weigh me down. It's great 2 be this optimistic going 2 a birthday party socializing without the oxygen and then going back 2 it when you see how sweaty and out of breath you are. There will come a time perhaps sooner than later when you won't be able 2 enjoy social functions as much because getting there, socializing, and leaving will become difficult. I also understand guys because I have an adult son and he has the same optimism as you do thinking and believing I'll want 2 go places 2 socialize. I enjoy car rides looking out the window seeing nature but have little desire to see human beings. Everyone tells me how young I am, 55 but I don't feel young, I feel 80 years old, I walk slow and am so out of breath 4 me it's better 2 remain where I'm most comfortable my home. You can write all sorts of letters to different people trying 2 get attention for this chronic lung disease but no one cares not unless they have the disease themselves or know someone who has it. Look at the healthcare in this country and this is how long it'll take for PH 2 gain attention. I'm not holding my breath. I do have a question 4 you though, how did you get on oxygen so fast? Just had my 6-minute walking test done weeks ago and I'm still waiting. I've been told I'm a candidate for it, but that's it. I take it from what you wrote you are still working, awesome, because so many of us that have PH can't work, I've applied 2 disability and I wait and wait and wait 4 an answer. My son takes care of me pays all my expenses but doesn't want mom 2 die. I would take the death card any day because I'm not living my life, I exist and every day that I go on is a reminder of this devastating illness that will one day kill me. This is reality as I see it. I am so out of breath my 400 square feet efficiency apartment is 2 big interested in tiny homes for the disabled with about 200 square feet. My feet, ankles, toes, legs are swollen every day and rarely decreases. I can't wear my New Balance shoes anymore because my feet are 3x's the size so my son suggested I wear his shoes, extra wide, baby, and the shoes work. Guys are very interesting people. Independent, don't give up and good luck 4 any woman wanting 2 change a guy. Not happening. So, I get your optimistic fight 2 the end of this illness because you'll have a very long road ahead. I wish you the best on your quest 2 find the answers you seek at the same time be realistic with this illness because if you are on oxygen stay on it, don't get off you are defeating the purpose in the first place. Similar 2 people that are chain smokers smoking cigarette in their right hand and using the inhaler with their left hand. Medical personnel knows it doesn't work the person that's a fool is the smoker which tells me you haven't faced this chronic lung disease in a realistic way. I get you don't want 2 admit defeat, but you will sooner more than later. I was told not 2 get my heart rate up (so dancing like you did & getting sweaty would have been worse 4 me) my heart is beating faster than it should because the high blood pressure in my lungs was so high medical personnel were surprised I didn't have a stroke, so my heart became enlarged as a result. so, I spend my days doing little things until I get tired, then I rest and sleep and then do the process all over again. It doesn't matter your age, I've read children and people as young as their 20's get this illness but you've got 2 respect what you can and cannot do because if you don't, you'll become angry and may sink into a deep depression as a result. I also read being strong-willed helps with this chronic illness and so I am which helps when I want 2 throw in the towel and give up. So, if you wouldn't mind please tell me how you got on oxygen so fast? Appreciate any comments you might want to throw my way. Good Luck!
Mike Naple
Hi Andrea,
You bring up a lot of the frustration I have felt since receiving the PH diagnosis. Accepting new limitations, and remaining hopeful in the face of them, is something that I've struggled with over the past year. It really is difficult, and sometimes I feel it's all I can do just to get to work, be there, and go home - with no capacity to handle additional activity.
When I saw your question asking how quickly I was able to get oxygen, I thought about doing my next column as a response. To answer your question: I had my oxygen about three months before I even knew I had PH - let alone knew it was a disease. My pulmonary doctors spent months struggling to figure out why I had been so short of breath. Short of any real conclusions, they prescribed me in-home oxygen.
Three months later I was hospitalized for nearly two weeks, and that's when a new set of doctors leveled me with the PH diagnosis. So, when I left the hospital I already had oxygen and it continued to be prescribed to me. That said, it took me a month and a half to get my portable oxygen concentrator - that's what I take with me to work and what I depend on daily to prevent episodes of hypoxia. My next six-minute test is in September.
This weekend, I'll be at a wedding. I'll report back on whether or not I get to dance a song or two. Stay positive and feel free to throw more questions my way. Thanks for reading!
Andrea Rice
You are quite welcome! You are an excellent writer very well spoken.
Reading others' posts can be stimulating and also frustrating depending on how I feel if I want 2 be bothered or not. There are so many affected and each predicament is different.
I think if you are going 2 pursue writing letters for some legislation with this illness you could invite the rest of us 4 support so it's not just one person talking about this illness. I would be happy 2 support your quest as you seem 2 have much more energy than I have. Believe a march following in the footsteps of the great Martin Luther King on several floats could be awesome 4 some of us that are unable to walk the distance. We can ride and wave 2 the folks in Washington, D.C. Then, after we are met hopefully we can outfit some of the dudes with a heavy weight like vest that fits over their chest and ask them 2 walk and have lots of energy so they understand how we feel. I see as the biggest hurdle is educating others about how this chronic illness affects our lives. We can all sit and talk about it but unless the dudes get it they'll never understand. What would be more accommodating is if we all got together via computer where we see each other and talk 2 someone in government. The heavy vest wouldn't be worn but it's worth a shot especially when they see many of us on oxygen already. What stinks about this illness is there's no warning and it can creep up on you as it did me. I'm disabled now even though my mind is active my body just lags behind. See what you can do about contacting others with this illness to see if they will support your quest. You so remind me of my adult son, it's true you guys don't give up at all. You are a practicing optimist.
Janet
Hi mike. I"ve had PAH for almost 5 years. Don't stop dancing Exercise is good for you. Just dance slower. Try to live as normal a life as before. Are you on any meds?
Mike Naple
Thanks, Janet! I keep dancing at weddings as much as I can; just last week I was at a wedding and danced a few songs. I try to live more in my new normal, at a slower space. I am on a series of meds right now: Sildenafil, furosemide, and prednisone. What about you?
Janet
I am on opsumit, adcirca, and tyvaso. I walk from south station to my office building in Boston with oxygen to get to work. I don't need the oxygen at work. I hate the stares I get from people but I have to deal with it. I try to stay positive When I go dancing with my husband and it's a fast dance I feel short of breath quickly. I don't push to the point of passing out. I just do my best and hope to stay stable for as long as possible.
Patricia Bon
Not only am I a survivor of Pulmonary Arterial Hypertension for 17 years, I am a brain injury survivor as well. Every brain injury has a story and this is mine.2 years ago, I was at home, and experienced a form of a stroke, called a bleed stroke, caused from a sub dermal hematoma., also known as a hemorrhagic stroke. Due to my husband's quick reaction to this occurrence, he called 911, I was then airlifted to a Hospital, so he literally saved my life. By the end of June 23, 2015, I could not talk or function at any level. I still cannot recall any of what had happened. I did have a procedure performed on my brain, called a subdermal hematoma drain . I can't go back and I will not give up or in. Fear say my health issues are permanent and time says it is too late. I miss who I use to be. I am truly grateful I wake up every morning to another blessed day of life.
Remember: Your life is happening on the journey today. How you react today will help determine how long it takes to reach your goals. Enjoy today, lighten up, laugh a little. Yesterday is history, tomorrow a mystery, today is a gift. That is why it is called the present. No, I am not there yet, but I am on my way. I try to start every morning with a
love letter to God from me. Every body has gone through something that has changed them in a way they could never go back to the person they once were. That something for me was the bleed stroke I suffered two years ago June 23, 2017. Two yearshave gone by very fast for some, so very slow for me, but I have kept the faith. I try to continue to have faith in myself to fight on and to be the best I can be.