Chronic pulmonary aspergillosis (inquiring RT student)

[amwoods92]

Hello all, my name is Amber and I am currently enrolled in a respiratory therapy program in Augusta, GA. I am interested in learning more about how this disease may be impacting your life and what you would like to see more out of from your clinicians, particularly your Respiratory Therapists! I want to be able to grasp a better understanding as to how the patient is affected rather than just learning the textbook definitions and treatment protocol! Help me become a better RT!

[GAtherton Administrator Fungal Infection Trust]

Hi Amber - get back to me with your medical/student status and if approved I can put you in touch with many patients who may be able to assist. We run several patient support programs at the National Aspergillosis Centre in Manchester, UK. [e-mail]

[amwoods92 in reply to GAtherton]

Excellent! Thank you so much for your help! I am a respiratory student in my senior year! I am taking pulmonary disease and would like to know what I could do as a RT for patients with a more rare lung condition such as chronic pulmonary aspergillosis!

[Pooeysuey in reply to GAtherton]

We would be interested if we can be of help.

[BillCull]

Amber,

good for you! I live in the U.S. just outside of Sacramento, CA. I applaud your interest in serving your patients. I'm strong advocate of improving education and suffer from severe asthma with aspergillious or ABPA for the last 15 years. please send me an email and id be happy to provide you with my perspective.

bill

[amwoods92 in reply to BillCull]

Thank you so much for supporting me and helping me further my education! I look forward to hearing from you! My email is: [e-mail]

[MAScott]

Hi, Amber, I was on Voraconazole for eight months after being extremely over 10 years. I have done a great deal of research over those years in order to stay alive. After attending a professional conference via Internet, I are used the medication in my inhaler. It was extremely effective! It took about two weeks to recover, but my long capacity increased by 1/3! I have more energy, do not have to use any inhalers, and I can breathe again!

Yes, it is still being investigated in the U.S. Yes, I was reprimanded by my Infectious Disease Doctor and my Pulmanologist. But, for 20 years I progressively got sicker and eventually was debilitated. The aspergillosis did not begin to appear until last year. Despite the clear evidence that my home of 17 years was toxic and had to be torn down in 2005, no American medical doctors would address the mold issue because it didn’t show up on tests. I am a teacher. I do research. Spices, herbs, diet, and peroxide kept me functional for many years. Mold is aggressive and destructive. I could not have won without the newest research.

Sincerely,

Maryrose A. Scott

[amwoods92 in reply to MAScott]

All of the information you provided me is extremely helpful! Thank you so very much! I may be getting back to you very soon with a few more questions, if you don’t mind sharing more?

Thanks in advance,

Amber Woods

[amwoods92]

What is one thing you wish healthcare providers would do more of for people with aspergillosis?

[GAtherton Administrator Fungal Infection Trust]

There is a good deal of confusion between ill effects suffered from living in a damp home and those with aspergillosis.

Aspergillosis is a rare infection of our lungs and airways - see aspergillus.org.uk.

Those health effects people experience when living in damp homes are not usually aspergillosis. I think some run blood tests to discover some sensitivity to Aspergillus and assume (not unreasonably) that because it has been found 'in their blood' that the fungus is in their blood. That is not the case in most instances as most test run look at the IgE component of our immune response and that is simply a measure of exposure. In a damp home, you might be exposed via inhalation sufficiently to cause this response. These are allergies which can be treated but the best 'cure' is to discover why your home is damp and to prevent it - there is usually much the occupier can do to help nacpatients.org.uk/damp_pre...

There will be a few cases when there is an infection, often of the sinuses and that may show up when testing blood for IgG.

This distinction is important. Aspergillosis must be treated by a specialist often using antifungal drugs. In the UK we have the National Aspergillosis Centre (nationalaspergillosiscentre....

People who have allergies have a quite different needs but most of all do not need to be concerned about the information they read about aspergillosis, some of which can be very stressing!

Neither condition is well understood by all clinicians, aspergillosis is rare so many doctors will never see a case. The ill health caused by damp domes is poorly understood and the internet rife with 'experts' trying to sell you a special understanding or 'cure'. The only real cure currently is to avoid contact with the damp home that is causing the problem and ensuring any future homes stay damp free.