Which advice would you give to someone who has just been diagnosed with Aspergillosis?

See some advice from people with experience in Aspergillosis to people who have just been diagnosed with Aspergillosis


Advice for Someone Diagnosed with Aspergillosis


Receiving a diagnosis of Aspergillosis can be overwhelming and raise many questions about your health and future. It is important to remember that you are not alone in this journey. Here are some key pieces of advice to help you navigate this condition:



1. Educate Yourself: Take the time to learn about Aspergillosis, its causes, symptoms, and available treatment options. Understanding your condition will empower you to make informed decisions about your health and actively participate in your treatment plan.



2. Seek Medical Expertise: Consult with a healthcare professional who specializes in Aspergillosis, such as an infectious disease specialist or a pulmonologist. They will provide you with accurate information, answer your questions, and guide you through the treatment process.



3. Follow Treatment Recommendations: Adhere to the prescribed treatment plan provided by your healthcare provider. This may include antifungal medications, lifestyle modifications, and regular check-ups. Consistency and compliance with treatment are crucial for managing Aspergillosis effectively.



4. Maintain Open Communication: Establish open and honest communication with your healthcare team. Share any concerns, symptoms, or side effects you experience during treatment. They can adjust your treatment plan accordingly and provide necessary support.



5. Take Care of Your Overall Health: Focus on maintaining a healthy lifestyle to support your immune system. Eat a balanced diet, engage in regular exercise, get enough sleep, and manage stress. These practices can help strengthen your body's ability to fight infections.



6. Seek Emotional Support: Receiving a diagnosis can be emotionally challenging. Reach out to friends, family, or support groups to share your feelings and experiences. Connecting with others who have faced similar situations can provide valuable emotional support and coping strategies.



7. Stay Informed about Research and Clinical Trials: Keep yourself updated on the latest advancements in Aspergillosis research. Clinical trials may offer new treatment options or opportunities to contribute to scientific knowledge. Discuss these possibilities with your healthcare provider.



8. Be Mindful of Environmental Triggers: Aspergillosis is often associated with exposure to mold or fungal spores. Take precautions to minimize your exposure to these triggers. Keep your living spaces clean, well-ventilated, and free from excess moisture.



9. Plan Ahead for Travel and Activities: If you have travel plans or engage in activities that may expose you to Aspergillosis triggers, consult your healthcare provider for guidance. They can provide recommendations to minimize risks and ensure your safety.



10. Stay Positive and Seek Joy: While living with Aspergillosis may present challenges, maintaining a positive mindset and seeking joy in everyday life is essential. Engage in activities you enjoy, spend time with loved ones, and focus on your overall well-being.



Remember, this advice is meant to provide general guidance, and your healthcare provider should be your primary source of information and support. By taking an active role in your treatment and making healthy choices, you can effectively manage Aspergillosis and lead a fulfilling life.


by Diseasemaps

Take the condition very seriously and make sure you follow exactly medical advice to avoid lung scaring, ( bronchiectasis) If you suspect a chest infection ( ie continual coughing up mucus) insist on a sputum test asap so that you can commence antibiotics as soon as you have the results, if not earlier.

10/18/17 by Peta 3110

Be grateful.You have a positive diagnosis, and the worry that it could be much worse has been taken away. I have had it for 12 years and even though I have had to adjust my lifestyle I have still managed to create a situation where life is well worth living.

10/18/17 by Vaughan 2500

My advice to you if you have just been diagnosed with this condition is to study at look into everything that you can about it join a support group and get an advocate for yourself if you do not have a loving person with you who is willing to help you with this experience it will be very difficult the medication that they give to save your life often is as a debilitating as the condition and you will need help. My experience is that it is better to move yourself into being your own superhero rather than a victim if you are not already living a good clean lifestyle it's time. I think it's important to give yourself time to grieve for the things that you may lose for me it was a very physical lifestyle all of my pets that I loved and my farming lifestyle. It is good to learn unattachment and that things will not bring you the happiness that you seek being creative and being able to do something for someone else we'll bring you more happiness. Even though you may have had to quit your job and go on oxygen at home when you are feeling well enough you can write cards to others and encourage them maybe people from your workplace or people from your life it's important to try to stay connected somehow. It's important to eat good healthy food and have someone willing to help you fix that if you are too tired yourself.

10/21/17 by Boni 1450

Try to get referred to Wythenshaw hospital if you are in the UK as there is a specialist department for this. Do not "get by" if you have a chest infection - you will need antibiotics for this. no gardening and stay away from anyone using compost. soil, wet leaves. do not put wet clothes on a radiator. Again all of this is on the aspergillus website.

11/9/17 by Sam 2500

Get out and about and research good sites like this one or NHS have a good site too. Stay away from wooded areas I loved walking through woods and didn’t realise that the leaf can cause mould spores. Beaches and open areas I find to be the best. And I discovered myself the HEPA air purifier best advice I can give works wonders only had it a week.

8/14/18 by StuartMcKelvie 4050

The best advise I can give is first calm down. Do not be frightened, then learn EVERYTHING you possibly can about Aspergillosis!! Ask your doctor and health professionals questions and concerns, also eventually sometimes you can even inform them because many do not know much about this. What I would have done different the first few years is get much more informed!!

8/8/19 by Patricia Fletcher 2500

Knowledge is power and will help you live as close to a normal life as possible. You will find lots of important information at https://aspergillosis.org The UK National Aspergillosis Centre runs large and active communities on Facebook https://www.facebook.com/groups/aspergillussupport - join it and follow the many threads.

10/16/19 by GAtherton 3100

find out as much as you can about the condition - don't be afraid to ask questions, however silly you think they are I had very helpful advice from hospital in Manchester which was extremely helpful as others, such as my gp didn't really understand it. Be well informed, as if you are admitted in an emergency, it is unlikely the hospital staff will understand it

10/17/19 by Linda Galbraith 2500

Find a very good specialist who understands the condition. Also go to alternative treatment, such as naturopath, herbalist, homeopath etc. Take photos of things you cough up, to show your doctor. Insist on a sputum test for fungus detection. A blood test can then determine the type you have. Get a lot of rest, don't try to push through, if you're in the middle of outbreak - sickness, coughing, difficulty breathing etc. Get information to tell your family and friends. People don't realise how serious it is. A chest or lung infection is not the same as having a fungal infection blocking your airways. Try to stay positive

10/19/19 by Pam Mars 2500

Be your own advocate. Do your research for your unique circumstances. Knowledge is power. Understand what is being prescribed, how to take it, what to avoid and what to best improve your health.

2/15/20 by Dayna 1700

Take medication and remain calm. It's not the end of life!

8/25/20 by Coco2020 1000

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