PHighting Beyond Life Expectancy
Life expectancy is on my mind. Maybe it is because we are in the new year. Maybe it is my impending doctor’s appointments and tests that will update me on the progress I’ve made in my PHight with pulmonary hypertension (PH). Maybe it is because life is fragile and, chronic illness or not, nobody is promised any set number of days. There is something beautiful in that uncertainty that binds us all together.
A few days after the doctors delivered my PH diagnosis, they could not guarantee that the disease wouldn’t send me back to the hospital in the near future. PH is a rare disease that affects the heart and lungs. There is no cure for PH, and without proper treatment and monitoring, I can count the estimated years of life expectancy on one hand. While this was terrifying to learn in the spring of 2016, it remains unnerving today, constantly on my mind, yet also something I am repeatedly pushing to the deep recesses, shut away not to be thought of, if I can help it. Still, every time I feel my heart race or I find myself gasping for breath, I wonder if a hospital visit isn’t far away.
Life with a chronic illness or rare disease can muddle one’s sense of time. Thanks to a mixture of good days and bad days — not to mention a raft of side effects — I’m never really sure if I’m running a quick sprint or building stamina to make it through a hard-fought marathon (figuratively, of course). People around me constantly tell me to slow down or take it easy. Is there a secret to slowing things down? I can’t help but wonder if slow and steady means an extra day marked on the calendar.
My stubborn nature makes it hard to slow down. Throughout my life, I’ve done my best not to let any health challenge define my day-to-day activities and professional ambitions, or limit my sense of how far I could go — no matter the destination. You can imagine how I have felt adjusting to the “new normal” that comes with a PH diagnosis, and the need to make sense of where my life is headed next. Three months after the hospitalization that led to my PH diagnosis and completion of pulmonary rehabilitation, I took a new job. I made the switch because I did not know if I would be able to fulfill this professional goal later on in life. While I enjoyed every minute of that job, it also helped me realize the importance of self-care in managing a chronic illness, and how taking the time to put my health first has the potential to keep me healthy for other new opportunities.
Thoughts of life expectancy with PH also drove me to start writing this column. I always knew I wanted to write more but I walked through life as though writing was some far-off goal that I would get to … eventually. I also wanted to give back to the other PHighters in this community who helped ease my emotional anxiety in the aftermath of my diagnosis. Reading about other survivors with PH living longer than the typical life expectancy gave me a sense of hope and optimism for many more days and years ahead.
Life is what you make of it — how you celebrate during the good times and persevere from one hardship to the next. How you make sense of what might seem like unfathomable or unfair hurdles when you just barely have the energy to jump over them. It can be challenging to maintain a posture of stamina for that hard-fought marathon that is often necessary when your journey includes a rare, incurable illness.
My friend recently hosted a gathering to mark the 19th anniversary of her cancer diagnosis. This was a special number for her considering she has been living and fighting with a rare form of cancer since before she turned 20. A survivor who continues to defy the odds, she pursues her career passions and lives her life out loud. She embodies perseverance and goes out of her way to use her story to help others struggling with their own health issues. Cancer and PH are obviously different diseases and my intent is not to equate the two here. My friend and I face very different battles, but I think it is helpful to look for commonalities in how people with significant health challenges can support each other and persist despite the uncertainty.
I’m a few months shy of the two-year anniversary of my PH diagnosis. While the daily sprints might leave me feeling winded some days more than others, I am doing my best to look ahead to that 10-year mark, thinking not in terms of life expectancy but stamina to face that uncertainty that unfolds before us all.
Follow Mike Naple on Twitter @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.
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Comments
Donald J Savage
Great article Mike. Looking forward to seeing you again at Harvey's Lake this year. Stay well... Doc Savage
Janet
Hi mike. I think you wrote about dancing once before. Keep dancing, fighting, and writing. I enjoy your columns. I too worry about life expectancy and disease progression. I keep thinking I’m new to this and realized recently I am five years into this journey. I want to give you hope. Although my pressures are up a bit my doctor is very pleased and feels like my PAH is somewhat stable and in the milder range. Do what they tell you to do and just do your best. I will keep you in my prayers. Good luck with this.
Andrea Rice
Beautifully written, Mike Naple. I, to was recently diagnosed in 2016 and have been given two years to live because I am dying and even though the expiration date is out there I am optimistic and fighting hard to move past the expiration date and survive longer.
You are very fortunate that you can work, although I haven't thought of asking my cardiologist if I can work and am on disability. I had a career as an educator long ago but can't do this because I also have PTSD after a severe car accident that landed me in a deep depression after I was told I can't be around children with PTSD. A career I loved was taken away. PTSD changed who I once was. I used to have lots of patience and enjoyed working with the little kids, now I have no interest in kids and my patience runs in the negative numbers.
Having Severe Pulmonary Hypertension is a blessing in disguise for me because it made me choose between living and dying. Before I existed so it's great to be living again. Don't want to clock out yet only 55 years old yet when I was hospitalized and on the cardiac floor I was told by many that I'm young but I don't feel it or see it when I look in a mirror because many on the cardiac floor are many years older than I, so I felt out of place there.
I don't know anyone where I live that has this chronic illness without a cure because there aren't any support groups in my immediate area. I live in a smaller city but there is an option for me to start a support group in my area. I have the time on disability but would like some help from anybody to help get it started.
You are way ahead of me because it has been talked about me going to pulmonary rehab but I'm not there yet and have a long way to go. I'm on short term goals which means that I have to ride in a wheelchair for the long walks unable to do recommended by my doctor. My 26 year old son enjoys pushing me in the wheelchair and I enjoy doing things like going to the movies saving one day I'd like to try a hip-hop dance class and bowling again when I get to the long term goals. For me my days are spent in reflection remembering my past life and my current life and where I will eventually end up.
I have an awesome son that doesn't want his mom to die matter of fact he says I can't die, and my best friend that says I have to live, so being as optimistic as I can is one of the keys to living day by day and enjoying each moment of my life in the here and now.
I have a great team of medical doctors working to slow down the progress of this expiration date that will be here near Halloween 2019. I have committed myself to working with them and so far the medicine I take is working great because I have never felt better in my life. I don't plan on passing away in Hospice I want to lie in the snow the cold numbing any pain I have without being hooked up to any wires or tubes and not taking any pain medicine and have those that want to be there present and then when it's close to that time, take one last shot glass of Morgan Brandy to remind me of the brandy my grandmother used to drink so when I close my eyes and am gone I will be on my journey to see her again. I can't wait. It's been too long. She died when I was 30 years old and she was 96. I look forward to sharing times with her as she was a great influence in my life as well as other family members that died that I didn't have the chance to know them to. Afterwards, my doctors can take my organs and give them to people waiting for organ donations. I don't want them sold on the black market for profit. Then my skeleton can go to the medical schools so the upcoming medical students can work and learn on me. Nothing will go to waste. No coffin, no grave, no wake, no funeral, remember me as I was when I lived.
I don't push myself nearly as hard as you do. Did when first diagnosed and learned it doesn't work. I, to, am used to doing everything fast, and this is because I grew up in Chicago and life was fast back then but when I walked as fast as I was used to, I would run out of air to breath and have shortness of breath and less energy much to the point that I would have to rest more than usual. I looked at walking at a slower pace as old and I'm not old at 55. I made it to middle age the speed limit! Much to young to die but I can die at any time with or without a chronic illness. Being in a severe car accident changed my outlook on life big time. There are no guarantees in life especially when I didn't put safety first and followed what my friends did or what I was attracted to. I got mad at the medical field for not educating the public about life changing events with car accidents but then I realized they have, they advise not to drink and drive but many people do it anyway, they also advise not to smoke or drink alcohol during pregnancy and people do it anyway to. So, now matter how many times people are educated about the pros and cons individual people make decisions regardless of what they know. I started watching tragedies for research to see what mistakes others make so hopefully I won't make them myself if out somewhere in public. I watched the Station Nightclub Fire that claimed the lives of over 100 people in less than 3 minutes and even though never been in a fire the trauma is the same, your life is forever changed and you are a different person for life.
Your right making choices to learn how to weather the storms puts you on the right path toward survival. Life isn't a straight shot, there are many bends, curves, bumps on the road that we must figure out how to deal with hopefully in a positive, optimistic approach.
Thank you for your beautiful written story. I to, want to write and educate others. I also want to meet others that have PH so I can identify with others that I can hopefully learn from their experiences with this chronic illness without a cure.
Please consider contacting me if you choose. I welcome anybody with PH to write me as your opinions are important and I love learning from others.
Thanks for listening.
Diane Ruppel
Thank you for sharing. My PH seems to be more stable and I am having another sleep apnea study. I have not used the CPAP machine due to not handling the mask. I hope there are better masks now to help some of my symptoms.
Diane
Diane L Ruppel
Mike. Thank you got your message. See my pulmonologist in the AM. Making decisions about ?starting medications.
It is something when people say how well you look.