IPF Interviews: Anita Demchenko

Anita was diagnosed with IPF in January 2018, and was fortunate enough to receive a lung transplant by the end of the year. I reached out to her and conducted a short Q&A to learn about her experiences with IPF, and her lung transplant.

Q: “How has IPF impacted your daily life? Your life overall?”

"IPF had significantly impacted my everyday life, turning once simple actions into demanding obstacles (now that I have a transplant, things are completely different). My energy levels plummeted, requiring me to rest more frequently and making tasks like walking my dog or socializing with loved ones more difficult.

Even simple activities like conversing, going to the park, or going to the shopping mall caused spells of coughing, attracting unwelcome looks in public, and interrupting my sleep.

The ambiguity around the progression of my IPF has been a continual cause of concern, casting a shadow over my thoughts and making it difficult to focus on the present. While I tried to adjust to my new reality, the physical and mental toll of IPF was obvious."

Anitas diagnosis impacted various aspects of her life...

Mental Health: “The uncertainty and progressive nature of IPF have caused anxiety and depression, affecting my overall well-being.”

Financial Burden: “The cost of medications, treatments, and medical appointments put a strain on my finances and created additional stress”

Reduced Mobility: “Simple tasks like walking up stairs or carrying groceries become challenging due to shortness of breath.”

Social Isolation: “Feeling embarrassed about my cough and limited energy led me to avoid social gatherings and outings with friends.”

Difficulty Sleeping: “The constant coughing and discomfort made it hard to get a good night's sleep, leaving me tired and fatigued during the day.”

“The limitations imposed by IPF had necessitated adjustments not only in my daily routine but also within my family's schedule. Simple tasks required more time and consideration, impacting the way we plan our days and allocate resources.”

For example...

Meal Preparation: “Cooking used to be enjoyable but the simple act of chopping vegetables or standing at the stove left me breathless and exhausted.  My husband had to take up food planning”

Housework: “Cleaning the house, which was once a weekly chore, was spread out over several days with plenty of rest in between tasks…fumes from cleaning products triggered intense coughing fits.”

Family Outings: “Family outings became less frequent and more limited as we had to consider my energy levels and choose activities that wouldn't be too strenuous for me.”

Playing Sports: “Team sports or even casual games with friends like tennis or playing pool were no longer an option as I couldn't keep up with the physical demands.  Even swimming took everything out of me.”

Q: "Could you tell me more about your lung transplant journey?"

"In 2010, my respiratory health declined, leading to an IPF and CHP diagnosis in 2017. Given 6-12 months to live, I spiraled into depression but was placed on the transplant list in June 2018. After a severe pneumonia scare in October, I miraculously recovered.

In December, I received a lung transplant. The journey was challenging, with post-surgery complications and health issues, but I persevered. By Christmas Eve, I was home with my family.

Now, I cherish every moment and advocate for organ donation and lung condition research. Studying art therapy, I aim to support others facing similar challenges. This journey has been one of resilience and gratitude."

Q: "Whats something that you've learned from your journey that you think others who have received lung transplants should know or could benefit from?"

1. Advocate for yourself: “Ask questions, seek second opinions, and participate in your treatment decisions.”

2. Build a support system: “Surround yourself with family, friends, or support groups who understand your journey and can offer emotional support.”

3. Prioritize mental health: “Seek therapy or counselling if needed, and practice self-care techniques like meditation or journaling. Focus on gratitude, celebrate small victories, and maintain hope.”

4. Stay informed and connected: “Research your condition and connect with online communities. Learning from others and sharing experiences can be incredibly valuable.”

5. Don't give up: “The journey may be long and challenging, but never lose hope. A lung transplant can be a life-changing experience, offering renewed energy and a fresh start.”

Q: "Is there anything you'd recommend to others with similar challenges?"

Early Diagnosis and Intervention: “Early diagnosis and treatment can significantly improve outcomes.”

Pulmonary Rehabilitation: “Participate in pulmonary rehabilitation programs to improve lung function, and quality of life.”

Nutritional Support: “Maintain a healthy diet to support your body and immune system.”

Physical Activity: “Engage in moderate-intensity exercise to maintain strength. Consult your doctor for appropriate activities.” 

Vaccinations: “Stay up-to-date on vaccinations to protect yourself from infections that can worsen lung conditions”

Medication Adherence: “Follow your doctor's instructions on medications.”

Keep a journal: “Documenting your journey can help you track progress, identify triggers, and express your emotions.”

Give back: “Consider volunteering or sharing your story to raise awareness and support others with lung conditions.”

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Disclaimer: This content is for educational purposes only. It is based on personal experiences and perspectives and is not direct medical advice, nor should it replace it. Consult a doctor for further clarification and questions.