Taking Life One Breath at a Time

Amy Gietzen avatar

by Amy Gietzen |

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I can’t breathe, literally! At times I feel like I’m drowning in my own body.

Living with scleroderma can be complicated — not because of the disease itself, which has a mind of its own, but mostly due to symptoms and side effects acquired along the journey.

Early on in my disease, I was also diagnosed with pulmonary fibrosis and interstitial lung disease. At first, I didn’t think anything of my lung issues because at that point, I was still active. I went to the gym, worked a full-time job, and attended classes on campus without any issues.

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Learning to Catch My Breath With Interstitial Lung Disease

But I decided not to take any chances with my lungs after being told the lung damage is irreversible. I went to pulmonary rehab hoping to gain strength and stamina. I bought a Craftmatic bed so I wouldn’t aspirate during the night. I tried everything I could, either out of dedication or desperation.

In the end, all of this preventive care didn’t cure my lung problems, but I did see progress. Rehab gave me more strength. I could walk longer periods at a slower pace. The bed helped me to sleep better. I felt more rested, which in turn gave me more energy. I was extremely happy with the results, but my lungs continued to worsen.

Eventually, my doctor and I discussed a possible lung transplant. We wanted a plan B for when the medications stopped helping. I had thought that at the age of 25, I’d be shopping for my own apartment, not a double-lung transplant.

Looking for lungs is complicated

Some healthcare providers wouldn’t even give me a consultation about a possible lung transplant due to my scleroderma and its effects on multiple organs of the body. Others weren’t equipped to deal with all of the possible complications that could arise when treating a scleroderma patient. I had to find a place that would evaluate me.

Eventually, I found a hospital that specializes in high-risk transplants. Staff there understood what scleroderma is, how it affects the body, and what to expect from a patient during recovery.

I had to meet certain criteria to even be considered for an evaluation. After a week of completing their preliminary checklist, which included blood draws, evaluations, and consultations from pulmonologists, cardiologists, surgeons, skin specialists, nutritionists, gastrointestinal doctors, and psychologists, the waiting game was in full effect.

Fourteen agonizing days later, I received my answer: Sadly, they had turned me down. I had mixed emotions about that. The process of being evaluated was so taxing, and all of that stress and time were for nothing! However, I can’t fathom what the process would entail for those who are accepted.

Why I wasn’t a candidate

The two main reasons I was turned down are that I wasn’t sick enough and I had reflux, which doctors deemed too risky. Their main concern was aspiration, which could damage a healthy pair of lungs. If that happened, the lungs would be wasted on me instead of helping someone else. While it was difficult to hear, I understood the reasoning behind it.

Rejection is a hard pill to swallow when you have no control over the outcome. I can’t just take a magic pill for my reflux, nor do I want to wake up tomorrow and find that my illness is so severe I need an emergency lung transplant.

In a way, I was grateful I didn’t meet the criteria because I wasn’t sick enough to qualify. On the other hand, my disease was still progressing, and I had no way of stopping it from slowly killing me.

What now?

Today, 15 years after my pulmonary fibrosis and interstitial lung disease diagnoses, my lungs are significantly worse. I also have pulmonary hypertension, and my pulmonary fibrosis has gone from mild to moderate. Fortunately, I’m not on oxygen yet and can still get around, albeit more slowly than I might like.

For a patient like me with scleroderma and lung issues that can’t be solved by medication alone, finding other options can be tricky, although today’s medications are more effective than in the past. I stick with what works. Following my treatment plan, embracing my flaws, and keeping a positive perspective are just what the doctor ordered.

Some days are great, while on others I have flare-ups. With scleroderma, my life ebbs and flows to the beat of music I can’t hear. That is less than ideal, but in the grand scheme of life, what do I have to lose?


Note: Scleroderma 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 Scleroderma News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to scleroderma.

Comments

Jo avatar

Jo

Thank you for this article. I too have Scleroderma etc. A positive perspective really helps - mind over body I think. It's not easy to come to this point at all, but I finally did and I feel better for it both mentally and physically.
Thanks for the positivity! It really helps.

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Amy Gietzen avatar

Amy Gietzen

Jo Thank you so much for your interest in my journey! xoxo

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Rosaleen Chao avatar

Rosaleen Chao

Wow, I feel like you just wrote a post of my future🥺. I just got dx with ILD with mild pulmonary fibrosis. They are just starting me on OFEV after four months figuring how to get the medication. I just got into a coughing spell last night which caused me to be like a fish out of water. My husband talked me down from my anxiety attack which has happened once before when I started coughing. It’s scary as hell not being able to control the cough and fighting to get air inward. I too have acid reflux and was referred to an ILD specialist for possible lung transplant down the line.

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Amy Gietzen avatar

Amy Gietzen

Thank you for sharing your struggles, it can be so hard to navigate your journey through this disease!

Reply
Twila avatar

Twila

Thank you for sharing your positive post. Your remarkable determination to stay positive is inspiring, especially knowing what it can be like to live with ILD. Focusing on what you can do rather than what you can't is the best thing to do.
Thanks again.

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Amy Gietzen avatar

Amy Gietzen

Twila- thank you for your positive thoughts

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