Normal Lung Pressure Adds Pressure to Live to the Fullest

Normal Lung Pressure Adds Pressure to Live to the Fullest

My anxiety skyrocketed last month without any medical triggers. I celebrate my 26th birthday this weekend, and my third transplant anniversary is a couple of months away. I’m doing great physically, but I don’t feel like I’m getting enough done or that I’ve gotten enough done or that I’m going to be able to get enough done — certainly not enough to satisfy myself.

The years tick by, and there’s a voice in my head reminding me that I’m running out of time. As much as I eschew survival statistics, I’m still thinking about median survival rates of six to eight and a half years. Three years down, and there’s no telling how many more to go.

There’s a downside to living every day like it’s my last. Subconsciously, I feel like I need to do all my personal projects today, lest I don’t wake up tomorrow. This can mean feeling tremendous relief whenever I complete a goal, for instance, hiking Half Dome or publishing a book (whoops, still haven’t done that one). But it also means crippling anxiety that I won’t accomplish everything I plan to.

Bookstores make me anxious; every time I go into one, I’m overwhelmed by the sheer number of books I will never get to read. Another of my deepest sorrows is being unable to provide the desired level of love and support to people I care about.

My boyfriend’s mother has Alzheimer’s disease, and it has challenged all of us. Still, we truly enjoy spending time together. I adore her! She lives in Kansas and I live in California. The fact that I cannot be present every day to paint her nails and show her how much I love her son is a painful reality for me.

I am indebted to other people. I owe my life to them, and I add that layer of guilt and pressure to myself every single day. The list of thank-you cards I should write never ends: my organ donor, my donor’s family, my surgeon, my parents, my friends, strangers, etc.

But “thank you” seems insufficient, and some people simply cannot be thanked, so I tell myself I will pay it forward, and I do. And yet, sometimes I fall short of how much I expect myself to pay forward.

Sometimes I can drop everything to support a friend or family member, and sometimes I can’t. That disappoints me so much it can paralyze me. Facedown on my bed, I despair that I’m not enough: not generous enough, not grateful enough, not good enough.

Then I consider giving up on all of it. If I can’t read every book in my lifetime, why bother reading one? That makes no sense, Kathleen, we are all thinking, but my anxiety doesn’t make sense. Most of my other emotions don’t, either.

I don’t have a solution or a satisfying ending to this piece. Undoubtedly, I need to be more present in the moment. Wincing, I try to let go of the pressure I put on myself to be present in the moment and the judgment I have for myself for not being present enough. You see my dilemma.

This piece isn’t good enough, and it might not be good at all. If it’s not going to be good, then why bother writing? The closest I’ve come to an answer is that I don’t want to let my anxiety continue to keep me from showing up.

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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.

After fighting Idiopathic Pulmonary Arterial Hypertension with combined intravenous and oral therapies for 17 years, Kathleen Sheffer received a heart-lung transplant on July 1, 2016. Now 24, she works as a photographer in San Francisco, California, and writes about the transition from life with PH to life with chronic immunosuppression. See her photography at kathleensheffer.com.
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After fighting Idiopathic Pulmonary Arterial Hypertension with combined intravenous and oral therapies for 17 years, Kathleen Sheffer received a heart-lung transplant on July 1, 2016. Now 24, she works as a photographer in San Francisco, California, and writes about the transition from life with PH to life with chronic immunosuppression. See her photography at kathleensheffer.com.

10 comments

  1. Darlene Moore says:

    Hi, I’m new to this, I find your messages “interesting”!
    I had no symptoms, that I know of, heart Dr found a problem, didn’t specifically comment on any info, sent me to a Pulmonologist & I’m having a lung CS this week!! His only comment was it might be mild or severe! I can’t find or read any info that relates to me— I’m 82 years old, active but do get tired easily, no SOB ?? I’m so confused, don’t know what to look for or when!! Thanks for any info you could share!
    Darlene

    • Greg Snyder says:

      Darlene: Welcome (potentially) to our world. If your tests say you “qualify” to be in the PAH club, you’ll find the “no info” syndrome gets only marginally better.

      In fact, I feel “lucky” to have even gotten a PAH diagnosis–after wasting 5 years in the information wasteland of the pulmonology world’s wilderness. My cardiologist triggered my first move in the correct direction! Get to a Regional Certified PAH Guru ASAP.

      Don’t waste anymore time. You’re at the right place to find one. Good luck–here’s hoping you don’t qualify for our club!🤔

  2. maureen hudson says:

    i have had ph for 4 years, i am wondering is there anything out there that works, I cannot walk to far without becoming short of breath ( i also have copd & everything that goes with it) I go to ph rehab as a outpatient, they all say its not going to get better only worse? any help out there i would appreciate it.

      • Beth says:

        Thank you! Do you want to give me your email address so I can email you? I don’t see it anywhere here, but I’m wondering because my brother lives in Vegas.
        Thank you
        Beth

    • Tony Wiley says:

      Hi: their are 3 meds that work very good .triple therapy adempas, uptrave,Opsumit I take all three, it works great for me.Hang in their it will get better.

  3. Betty Roberts says:

    Hello, I’m new to this site. My husband was diagnosed with PAH last month. They say he’s probably had it for 4-5 years. He’s 76 years old. The trail medication they put him on is Opsumit. Our insurance company said our co-pay will be 1,000 a month. Does anyone know if there is a medication that helps that is cheaper. He’s been on it a month and no change yet. I’d appreciate any information you have. Thank you!

  4. STEVE SALLEE says:

    Currently in VA Health Care system. Diagnosed last year with PH. Was told “no cure”. Having difficulty running my business. I am a sole proprietor with my girlfriend helping me and no other employees. Applied for SSA disability which was denied. Reason was I make too much money. Thinking of closing the shop but don’t know how long it will take to reapply and still don’t know if it will be approved. Has anyone been in a similar situation? Very nervous about closing shop but at this rate I will probably not be able to make the overhead in the near future and lose it anyway.

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