- Aspergillosis
- Interviews
JeanR's interview
How did all start?
Severe cavitation pneumonia in 2011. Follow up 6 months later diagnosed with Aspergilloma
Do you already have a diagnosis? How long did it take you to get it?
Yes about 6 months and referral to National Aspergillosis Centre in Manchester who recommended starting Itraconazole.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Treatment started with Itraconazole but severe gastrointestinal side effects so this was discontinued.
What has been the most useful thing for you so far?
Information exchange through Aspergillus Trust and Facebook support group. Support from the Consultant who allows me to make decisions about my care.
What have been your biggest difficulties?
Tolerating anti-fungal treatment. Having chest infections that take a while to clear up,
Coughing spasms that I have difficulty controlling sometimes. Disturbed sleep if coughing at night.
How has your social and family environment reacted? Have your social or family relationships changed?
Socially having to to limit some activities because of coughing spasms e.g. theatre. Otherwise family understanding
What things have you stopped doing?
Mostly theatre and concerts. Occasionally some meetings with groups that I belong to.
What do you think about the future?
I think if I manage my condition and diet, my future will be reasonably good.
So far, which years have been the best years in your life? What have you done during them?
Working and family life, worldwide travelling, working on projects in UK and abroad.
What would you like to do if you didn’t have your condition?
Probably more travelling and activities that require more energy
If you had to describe your life in a sentence, what would it be?
Rather less sociable than I would like. Trying hard to maintain my own health with support from nutritionist and weekly Pilates.
Finally, what advice would you give to a person in a similar situation?
Keep as active as possible even if you don’t always feel so good.
