In Memory of Lawrence Del Monte Lyon

Last week we had to say our goodbyes to Lawrence.  He had been an active member on our Facebook support group for years.  He had been suffering from Aspergillosis for 13 years and after a discussion with his loved ones decided that the pain was too much as he had no quality of life.  A very brave man and an inspiration to all of us.  He will be missed.  Rest in peace Lawrence.

I have attached a piece that Lawrence wrote for Fungal Awareness Week in 2017.

Fungal Disease awareness week.
A Dutch contribution.
After a life long problem with bronchitis and other lung issues, 11 years ago I was diagnosed with Non-Pulmonary Tubercolosis.  At that time I had lost like 45 pounds and was on the verge of collapsing.

I had 2 courses of meds for 6 and 9 months because they thought it came back after 2 years (rare but possible).  At this point in time, I was already completely disabled and off work and was put into disability allowance.  5 years ago I got sicker again and was thinking that it would be impossible to have a third relapse to TB.   So my specialist starting to search again.  I was losing like 4 pounds per month and my wife and kids were very worried I would not survive this time.  Again after a long period of testing my specialist decided he had to do a bronchoscopy and see for himself what was going on. Xrays and scans showed bad scarring and other structural damage but gave no further reasons or clues. After the scope, I remember my specialist just saying to me you’re full of them and they’re all infected.

When we went for the official results I was told I had necrotic chronic pulmonary aspergillosis (NCPA)with several aspergillomas (fungal balls in cavities).  Necrotic means the fungus also can thrive on healthy tissue in the lung.  I immediately knew that was bad news because I had knowledge of the disease. So now I”m 5 years down the road.  I had itraconazole (got resistant) voriconazole (bad side effects) and posaconazole and still getting used to it.  My social life is nearly as good as gone  My family life (and a loving one I have) is revolving around me because I’m too sick most of the time.   I just had a week of screening for a full lung transplant because that is the only option left that they can do for me.  28 August results day, yes or no. In case of problems, I cannot be resuscitated because lungs will collapse etc. etc.

But On the whole, I’m an optimistic life loving person who lives intensely if only on a square yard. I have 5 children 3 small grandchildren, a beautiful caring wife and refuse to be put in any corner.  Respect and love people, teach what I have learned and fight for what I have. Despite knowing that I might not have a long time to go. Aspergillosis in all forms is a horrible disease and must be fought and preferably cured in the future.