Living with Aspergillosis

I have to be honest and say up front that some of the things on this site may be replicated on my tuberculosis site Healthy Lungs Tuberculosis.  Things like healthy living and diet apply not just to Aspgerillus or Tuberculosis but a healthy life in general.

Some of the physical and psychological things are the same even though Tuberculosis and Aspergillus are two very different diseases.  I now know that my tb scarring has probably made me more likely to get an aspergillosis infection than an ordinary healthy person. This part of the site is for patients living with Aspergillosis.

My story isn’t just about a diagnosis; it’s about a journey. It’s about the shadows of tuberculosis and the slow, hard-won return to light. For a time in the 2000s, TB defined me. After being diagnosed, I felt numb.  I felt forced to leave my place of employment because I was known as the woman who caught TB.  A couple of people whispered whether I also had HIV or aids.  I knew people would be prejudiced, but I expected better from colleagues working with me at the student registry of a major university!

Two years ago I  was diagnosed as having Aspergillus.  I was told I was probably infected for two years.  During that time, I had many chest X-rays and even a couple of scans, but Aspergillus was missed. I am therefore LIVING WITH ASPERGILOSIS.  Who knows if things would be different?  But for the last few years, I have had so many other problems that, in a way, I am glad I was not diagnosed at the time I had my other troubles.

I’m a survivor. I’ve walked the long road of treatment, faced the side effects, and learned the true meaning of patience. I’ve discovered the strength that lies within, a resilience I never knew I possessed. I still have Aspergillus.  I’m likely to have yet another spontaneous pneumothorax (collapsed lung), having had five within three months and catching covid during a stay in hospital 3 times.

It was a battle fought in isolation, the overwhelming sense of shame, plenty of pain, plenty of side effects from the medication and a constant, gnawing fear.

But that’s not the end of my story….

I count myself very lucky to be in the hands of a wonderful group of doctors and nurses at NAC. They run a really good Facebook forum, but I didn’t feel it was for me.

Seeking information was challenging as I lacked the knowledge and terminology to articulate my questions, which hindered me from reaching out to staff for help. Past negative experiences with online platforms, particularly on Facebook during question and answer sessions, further deterred me from seeking help in that manner. Consequently, having an online forum like mine became invaluable – a space where I could carefully compose, revise, and edit my posts without the fear of judgment or misunderstanding.  People can be so picky over spelling, grammar, repeated questions and, in particular, questions that don’t make sense to them.

I found myself in need of a purpose as the days seemed to slip away ever faster. It was then that a fond memory resurfaced – my old TB website where I’d made a difference in people’s lives by sharing knowledge about the disease. Building a website was a monumental task for me at the time since I couldn’t justify spending on pricey website builders. Instead, I embarked on a journey to self-teach computer code languages like HTML and CSS. Although it consumed a great deal of my time, the resulting website proved to be immensely fulfilling. Not only did I acquire valuable insights into both computer science and tuberculosis, but I also formed meaningful connections with others who were grappling with the same ailment and the stigma attached to it. Through this digital platform, I found solace in helping others navigate the challenges of living with tuberculosis, much like I was doing.

I’m a survivor. I’ve walked the long road of treatment, faced the side effects, and learned the true meaning of patience. I’ve discovered the strength that lies within, a resilience I never knew I possessed. I still have Aspergillus.  I’m likely to have yet another spontaneous pneumothorax (collapsed lung), having had five within three months and catching covid during a stay in hospital 3 times.

Now, I’m passionate about sharing my experience to:

• Raise awareness: TB is still a global health crisis, and many people don’t understand its impact. I want to break the stigma and spread accurate information. Aspergillus is also a worldwide problem and is less known than TB. I can use my little voice to shout about it
• Offer hope: If you’re facing an Aspergillus diagnosis, know you’re not alone. Living with a diagnosis is possible.  Aspergillus does not rule your life.  You can still be productive and live with it
• Support others: I want to connect with fellow survivors and provide encouragement.

This site is a reminder that even after the darkest of times, there’s always the possibility of a brighter future. I am more than just an ex-patient; I am a person who is still struggling, but I am grateful for every new day.

There are many things I would like this site to be. For a start

1. Explore the daily challenges faced by individuals living with aspergillus, highlighting the physical, emotional, and social impacts of the condition.

2. Provide a comprehensive guide on managing Aspergillus, including tips for symptom relief, lifestyle adjustments, and the importance of regular medical check-ups. I hope this content can serve as a valuable resource for patients and their families.

3. Share inspiring stories of resilience from individuals.

and if all that isn’t enough for you and you want to know more………..Discussion Forum Introduce yourself

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“I wish it need not have happened in my time,” said Frodo.
“So do I,” said Gandalf, “and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us.” – J.R.R. Tolkien