Choosing to survive is one thing that’s within my control

For the past few months, I’ve been fighting a body that feels like it’s knocking me down. In addition to my chronic hypoxia and pulmonary hypertension (PH), my gastrointestinal (GI) system has continued to lose function. I’ve needed an increased amount of oxygen and have been more dependent on my breathing treatments and therapies.

The fight against my body has felt like a losing battle. When I feel that all my physical control is gone, the only control I have is choosing to survive.

A year ago, when my feeding tube was removed at my request because of all the pain, infections, and hospital visits it caused me, I promised myself I’d never get one again. Removing it was liberating. For once, I felt I was making my own health decisions and putting my quality of life first. I felt free.

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What I didn’t expect was that a year later, just a few weeks ago, I’d be faced with a difficult choice. My doctor sat me down as my face was streaked with tears.

“You’ve done everything in your control, and now it’s up to us to help you with a feeding tube.”

I knew that, besides my GI problems, my weight loss was critical and my health was suffering. I simply had to get a feeding tube placed again.

In that moment, I felt like all my control was ripped from me. I sat frozen in the doctor’s office, knowing that I needed to make a decision: whether to get a feeding tube again or to continue to decline. Agreeing to it felt like defeat. Acknowledging that I needed the tube meant a future with continued complications from it.

But I chose to accept the plan that my doctor and surgery team were laying out in front of me. I chose to give myself a chance to survive.

Surviving, in fact, has been my immediate focus. But living in that mode is a challenge, both physically and mentally. Trying to get through each day with a body that’s felt like it’s constantly working against me has been difficult. In so many moments, I’ve questioned how much more I can endure.

My health has changed drastically over the past few months. Beyond my increased demand for oxygen, my heart has grown weaker, my nutritional status has declined, and I’ve been living with so much fatigue. It’s been a struggle to get back a feeling of control over my own body, but I’ve come to accept that I don’t have much control right now.

The harsh reality is that health declines happen. I’ve done all I can for myself, and now I’m at the point where I have to accept help and additional support. Although I feel frustrated and angry at my body, I continue to make decisions that will help me survive. No matter how difficult and painful it is, I choose to live.

I’ve realized that the choice to keep going is the most important decision that’s immediately within my control. At the end of the day, it’s the only choice that matters.

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, and are intended to spark discussion about issues pertaining to pulmonary hypertension.