A question for the Pulmonary Arterial Hypertension Community

If your or your loved one’s experience living with this condition were a book, what would its title be and why? And what would you name the chapter you are currently in?

Answers from the Community

I guess the title would be “PH Warrior Survival Guide.” The current chapter would be “Learning to Navigate and Find Resources to Help Me Fight This Disease.”

The name of the book would be “My New Normal,” and the chapter I’m in right now is “My Journey Thus Far.”

The title would be, “Always Be Your Own Advocate” and the chapter that I’m on right now is “Just Take it a Day at a Time,” because with health changing and the entire world changing during a global pandemic there really is nothing you can do about what tomorrow looks like.

“Just Living Life to the Fullest.” A chapter… Hmm… The chapter I’m in, it would be more of maybe chapter five. I just say that because I’m 49 years old. I’ll be 50 next year, and I’ll just take a chapter of each decade of my life. So, just looking forward to the future, and everything we have planned for retirement and things like that. We just bought land; built a new house on it, and just looking forward to the future and what it has to hold. Hopefully, there will be no setbacks, but of course, as with everything in life, there’s always setbacks, but you just got to deal with them the right way. So hopefully, I can do that, and with the help of my husband to get me through everything. Like I said, he’s my number one support system.

If it would be a book? That’s a great question. “New Normal,” maybe for the title. The current chapter would be “Quarantine,” for obvious reasons, because I have learned I can live a normal life. It’s just a new normal life. It’s just a little bit different, but for the most part, it’s a normal life. I mean, I can do almost anything. Right now, I am quarantined for the most part, so that is the chapter.

I would call this book “A Life Forever Altered” I think, because that’s exactly what happened when I was diagnosed with PH. And I think I would call this chapter “Back to Life” as I become more and more active and back to my regular daily activities.

The title of my book would be, “God is Good: A Pulmonary Arterial Hypertension Story.” The chapter I’m living in right now would be, “Neverending Quarantine,” cause I’ve been in quarantine since March and I’m not allowed to go anywhere and my poor husband’s going to all the grocery shopping and everything but God is so good.

I would call it “Grace” I guess, or “God’s Grace.” And then the chapter that I’m currently on would be “Blessed” because I have been put and pointed towards certain doctors throughout my journey and each time I meet a new doctor it always gets better. My condition is stable, but it’s not worsening and I’ve seen other peoples worsen, but I’ve gotten to the point where my doctors just keep me stable, it’s not getting any worse and I can bear what I have right now, I can handle it, but if it got any worse I don’t know if I could handle it. And it would be better if it just completely went away, but it’s not curable at this point so I would just want to be stable and not get any worse and have to bear more than I can bear.

The book would be “Our Road to Survival.” And actually, I know it says your, but I would have to include everybody in it because it’s not just my survival, it’s everybody around me that is living with it. What chapter am I in? I like to think I’m in the middle of the book, although I know I’m probably three-fourths of the way through the book, but that’s where it’s at.

I think a chapter of my book would be “Living my Best Life at 40.” “Chapter One: Now I’m 40.”

It would be entitled, “Today and Tomorrow: My Journey Through Lung Transplant.” I’m obviously at the tomorrow stage now, and truly grateful for everything that has happened in my life even the adversities because I truly believe that everything is sent to us for a reason, and I personally believe that my condition was given to me because I could handle it.

I’ve thought about this many time and the title of my book would be “This Old Heart of Mine” because my heart is messed up and flawed, although it has opened my eyes to so many other things in life. I would encourage my loved ones to read what a daily struggle it can be, but also the positive things you get out of it and learning how to love life for what it is.

If my experience living with this condition were a book, the title would be “Overcomer,” and it wouldn’t just be for this condition. It would be with everything that I have dealt with medical-wise. I would name it “Overcomer.” Why? Because I can remember as a small child being in the hospital, in and out of hospitals as a child. Now at the age of 36, just had a knee replacement, so hospital has been my second home. So that’s where I would name it. “Overcomer.” I’ve overcome several different challenges that has been thrown at me in my life. And the chapter, the name of the chapter that I’m in would be “Almost There.” And I would name it “Almost There” because I’m feel like I’m at the end of the tunnel, almost at the end of the tunnel. I wouldn’t have to deal with a lot of these challenges. I’ve been maintaining all my medicines and my health has been doing better, but like I said, I’m almost there.

It would be called “Each Day Different.” Each day’s a surprise, and so each day is different. You never can predict how you’re going to feel. And the chapter I would be in right now is called “Progressive,” from seeing the disease start to turn progressive physically within my lung pressures and my heart overworking. So I’m really starting to deal with the disease now as it progresses.

The title of my book would be, “I Never Knew What This Could Be Like, but There is Hope.” And the current chapter that I would be in would be “Restarting From Scratch.” So basically, been through numerous trials and errors of medications, have had some ups and downs. So I’m restarting from scratch again, but it’s not a bad thing. The thing is to just keep moving forward and keep pushing forward, allow yourself to have the bad days. Allow yourself to have great days, and just remain positive.