Please help me find some closure with... - Aspergillosis and...

Aspergillosis and Rare Fungal Infection Support

3,802 members561 posts

Please help me find some closure with my husbands death

curiouswidow profile image
12 Replies

Hello...just trying to find some answers to the many questions involving my late husbands passing almost 3 years ago. He had asthma most of his life. I believe it got worse over the years till he ended up in the hospital. He also had low iron to the extent of iron infusions. The first hospital stay they did xrays, ct scan, and lung function test. They said he had copd sent him home with oxygen. The next 3 months his condition got worse...breathing, cough, etc. Went back to hospital and they immediately vented him and said he had severe respiratory distress and then got pneumonia, DVT, & a large dose of blood thinner. After several days(9) and he didn't improve they finally tested him for aspergullis. It came back as Aspergillus fumigatus...I'm guessing it was ABPA? He finally passed away after 21 days he was only 49 years old. My questions are:

Could he have had this Aspergullis for many years undetected?

Could it had been the infection causing all the symptoms of copd?

Is there early signs and symptoms of ABPA that I could have seen?

All the tests they did while in the hospital both times..why didn't this show earlier?

Is there something on an xray or ct scan that stands out?

Is it possible he could have asthma, COPD, and ABPA all at the same time?

Please forgive me if these questions have been answered before, I have tried to search for these answers but it seems so complicated. Thanks for any help!

12 Replies
GAtherton profile image

Hello - sorry for the delay in my reply

COPD is fairly commonly associated with Aspergillus infections of the airways as it can infect the scarring and areas that have poorer immune protection. It is most likely that COPD came first as it is that damage that encourages the fungal growth.

ABPA would probably have closely resembled COPD & asthma in terms of symptoms and may well be undetectable with so much other damage in the lungs - there was nothing you could have done about this as currently the diagnostic tests we have are not sufficient to reliably detect aspergillus infection.

ABPA may complicate asthma and there may be a type of asthma that is worsened by fungal infection - so all three could probably exist at the same time.


curiouswidow profile image
curiouswidow in reply to GAtherton

Thank you so much for your reply! Since I've written this I have come to find out that he didn't have COPD at all, that is was his long term Asthma and I guess the aspergillus that was causing his illness.

I have read that there are tests.....such as skin tests or a scope that can detect the infection is this correct? Assuming that aspergillus is suspected?

GAtherton profile image

Perhaps there is a suggestion that he had SAFS ( which might mean that exposure to fungi worsened his asthma.

Broncoscopy can help diagnosis in some cases (like in ABPA) but I have not heard of it being used to diagnos SAFS as we are not yet convinced that there is growing fungus in the lungs of a SAFS patient.

Skin prick tests are useful but not definitive - other factors like unstable asthma that doesnt respond to antibiotics are also important see

Quimera profile image


Just to answer a basic question, yes, all three can exist simultaneously.

COPD is the big umbrella under which fit

Chronic bronchitis, asthma, emphysema, etc.

And then on top of that aspergillus, --sure. His lungs were battling, so it's an easy "home" for such menaces.

I'm a bereavement counselor. I can't help but comment on your letter. I am very sorry for your deep loss. Losing a spouse leaves you not only with the enormous job of re-discovering life in the tiny pieces you can tolerate, but this time, re-discovering who *you* are, as it is all different now, and your name is alone. Where did he end and you begin? Aside from the sheer heartbreak, you have quite a job to do, but the path will unfold with time.

I wish you the best of luck from Northern California,


petersonkc profile image

I am not a doctor, and I have far less respect for the title than I used to over 5 years ago, before I succumbed to my mold illness. I am one of the lucky ones; I expect to fully recover.

Based on my experience and research, here's my response:

1. Yes

2. Yes

3. Yes, but with so many differential diagnoses out there and the difficulty of standard, reliable bio-testing for mold-related illness, you almost have to know you're looking for it. I still don't have a real diagnosis... it's on my disability paperwork as an unidentified disseminated fungal illness. I couldn't get lab results to show positive for aspergillus. I only know based on symptom description, tissue samples, microscopic comparison, etc. The clinical frontline on the battle with mold is still learning what microbiology science figured out years ago. Seems like fungus is surprising the hell out of everyone; most primary care doctors don't know how, when, what to test for. Even dermatologists, pathologists and infectious disease specialists - UCLA - failed to diagnose and treat properly. Ultimately, an urgent care doctor took a risk and even lacking full lab results, recognized the symptoms and started me on antifungals. God Bless that woman; she probably saved my life.

4. Don't know. We need to put pressure on the medical community to come up with better tests and treatments. The data's out there; need the clinical side to catch up with the science.

5. There are specific imaging techniques that should be applied to get the visual data they need to see. Example: a regular CT scan of my lungs came back clear, but my lungs were NOT clear. The scan image couldn't differentiate the different tissue types from fungal colonies or other weird anomalies??? I guess??? Don't know how... damn fungal infection was EVERYWHERE. If you Google for it, you'll find the data... which imaging tech to use. The other problem is the doctors and insurance companies don't always understand the need for deviating from the "norm" even when that standard isn't helping the patient.

6. Yes, all can coexist/overlap.

Bottom line... did the physicians screw up? Legally speaking, the answer requires defining the "standard of care" for your husband's illness, and then identifying deviations from that medical standard in terms of malpractice/negligence. Personal example... our primary care, infectious disease specialists and a dermatologist at UCLA all decided that my husband was suffering from "delusions of parasitosis" and offered anti-psychotics instead of biopsies, cultures or other options. When the blood tests came back negative, all of these physicians morphed into Mighty Mental Health Professionals Without Training and produced a mental health diagnosis that was ultimately very, very wrong. UCLA's own pathology lab finally cultured and grew a specimen; we were notified of the results NEVER. I found out by logging into the UCLA Health portal and finding the test result myself. Nobody ever notified us, or apologized for their bogus mental health assessments, etc.

Mistakes??? Oh yeah, and those are just a couple of examples of malpractice. They also violated HIPAA and their Hippocratic oaths. After they figured out how bad they'd screwed up, they tried to deny the validity of the lab results (citing possible lab contagion), tried to get rid of us as patients by referring us out and away and wouldn't put my husband on an antifungal regimen. It was the urologist at UCLA that finally put my husband on antifungals. We obviously have different doctors now, but I'm no less disgusted, pissed, shocked, hurt, or devastated than I was at the beginning of my medical saga.

I am going after those doctors. But I may not win, and it has nothing to do with right or wrong. It has to do with the statute of limitation, the quality of lawyer I can get on a contingency malpractice in a state with a $250K cap on malpractice (personal injury is different... we may be able to go that route), the publicity and public support I can get as backing, my own physical stamina (which can very greatly, day to day) and emotional bandwidth to cope. I need to be in real fighting condition when the "conversation" really begins.

I am so sorry for your loss. I can imagine the grief, shock, pain, chaos and rage it must cause you at times. I hope you're recovering and taking care of yourself. It will take time and healing can really suck... but maybe your attitude is more productive than mine and you won't let your anger or fear eat you up. I really hope so and I'll add to you and your husband to my prayers tonight. I pray for your relief, peace, health and happiness...

petersonkc profile image

Wow... you originally posted 2 years ago and I replied today, LOL! How are you, though? Are things clearing up?

petersonkc profile image

Wow... you originally posted 2 years ago and I replied today, LOL! How are you, though? Are things clearing up?

Betaji profile image
Betaji in reply to petersonkc

How and when you diagnosed for abpa and how you treated it successfully..any thing changed in diet and lifestyle

curiouswidow profile image

Thank you all for your kind replies! Yes things have slowly come together after his passing, although this time of the year is especially hard. My anger has turned into a passion to bring awareness to this disease anyway I can! There is a lot of work to be done, as you are well aware, the medical community just does not recognize this. I'm so glad you were pro-active in your care and we're able to get the correct treatment, unlike in my husband's case even after they found the fungus he was not treated for it:( I so wish I knew then what I know now, I believe he would still be us. So my advise to you is keep fighting although Mal - practice is a joke in this country and it will be a hard fight. But if it helps bring awareness and can help 1 person it's worth it:) Thank you for your prayers and you will be in mine as well!

Fransmoi profile image

Dear Lady ,

My hubby was an asthma sufferer since over 30 years but when we lived in a moldy cottage he took Pneumonia and was very ill indeed leaving his lungs inflamed and open to infection. He was then diagnosed with Aspergillus and was treated for a long time with Itraconazol and various antibiotics then steroids.We have seen his lung XRays which appear to show he has but a quarter of one lung functioning.He has COPD and Bronchiectasis and at 85 is lucky to be alive after all these years. His steroids have been much reduced as it is said they encourage infections by lowering his immune system. However he still enjoys life though we know what is left may be short .His days can be breathless and cough ridden but like you I dread the outcome and am thankful for the 30 years we have had.We are between the devil and the deep blue sea - Comfortable while on steroids or open to fatal infection without them.We are indeed fortunate to enjoy UK's NHS and our GPs are second to none sometimes ringing up to enquire how he is and visits from his COPD nurse are a boon. I hope you find the strength to start life anew knowing he wanted the very best for and you not blighted by a lack of closure.

Betaji profile image
Betaji in reply to Fransmoi

Mam can a person survive with this fungus for so long time?

Mindismom profile image

I have a chronic inflammation on my tongue and in my mouth. I have had this for 2 years, found fluconazole will almost take it away. The Doc that did the biopsy doesn't even want to give me fluconazole. One time he relented and said he would call in 3. LOL The next day the assistant called and said he changed his mind. My PC sent me to a infectious doc. He barely stepped in the room, had me stick out my tongue and was like 3 feet away when he said "You must have bit your tongue. Take ibuprofen and it will clear up in 2 weeks and he left the room! So I am still searching. But I THINK I know what it is now. I just have a few more appointments to go and see if someone wild blood work. I think I have sjorgrens.

You may also like...