chronic cavitary pulmonary aspergillosis

[Goodegg]

Hi there my husband has been diagnosed with chronic cavitary pulmonary aspergillosis , he is 74 yrs of age . I seem to have become more is carer than his wife . he has been ill since last october . He has lost 2 stone in weight , doesnt want to eat , is in pain most of the time , in his lungs head and chest . He has numerous blood tests , 2 lung biopsies , xrays ct scans before ccpa was diagnosed a couple of weeks ago . He has started a course of Itraconazole , initially for a 3 month trial , with weekly blood tests to make sure he is tollerating the meds .

I have this week applied for attendance allowance for him , has anyone else tried to get benefits for this disease and been successful ? would greatly appreciate any replies .

[Mariongisela]

Hello, my husband has just had biopsies done on the lung for aspergillosis - it's a disease that people have never heard of - I certainly never knew it existed until we started on the journey of trying to find out why he was pesistently coughing, breathless in pain and shattered all the time.

My husband is 63 and I am 55 and like yourself I feel I have become his carer.

It has been a positve move finding this site and reading about other people coping with illnesses.

While having a bronchoscope this week they found a poly in my husbands throat and urgently he has now been referred to ENT dept - more worry more stress

I wish you and your husband well and send you warm wishes.

Someone told me to make sure I took care of myself - easier said than done when my first priority is my husband.

Marion x

[Goodegg in reply to Mariongisela]

Thank you marion for replying , my husband had a bronchoscopy too , they found cavities in my husbands left lung . cant believe that just 6 months ago we were going on 10 mile hikes and now it takes it out of him walking round the house . I am hoping the medication will begin to make him feel beter soon . But am doubting that we will ever do our beloved hiking again . This disease has whipped our lives from under our feet . Hope you go on ok with your husband .

Linda xx

[GAtherton Administrator Fungal Infection Trust]

The British Lung Foundation run a very helpful phone service for this purpose

nacpatients.org.uk/helpline

[Goodegg in reply to GAtherton]

Thank you Graham for the reply , we have been successful in obtaining attendace allowance , it will certainly help .

Linda

[Daisy55]

My husband was diagnosed with Chronic cavitating about 4 years ago now , though it all began 13 years ago . He had scans , biopsies . In February this year he was quite ill , coughing 24/7 , fevers , chills etc. They found candidiasis in the sputum , and bacterial infection in the bloods , for which our specialist GP clinic diagnosed pneumonia . After anti biotics , fungals and steroids he eventually was better. Then at his regular hospital chest clinic appt in April , his consultant wanted him back on the Itraconazole , that he has been off for a year due to no haemoptyisis , as a precaution.

After a week he could not eat , so came off them , but being off them made no difference , and he has been steadily losing weight . So he is back on them again .

So now the gp team that deal with eating and endocrine are doing more blood tests , different to the usual monthly chest clinic ones and he has been referred to the dietary clinic for trying to help the weight loss. He is now 8stone 4 lbs

My confusion is that one of the doctors at the Gp surgery said Invasive Aspergillosis , but the Chest Consultant has said Chronic Cavitating as there are cobweb lungs and Aspergilloma .

But after him being so ill in February I am wondering if we are now onto Invasive .

I read that it is all progressive , so does that mean it is life limiting ??

The Consultant has not mentioned a life limit .

He is due to see him again in 4 weeks so I want some answers . We are luckily that the consultant we see works in conjunction with Manchester centre and the lung specialists at Addenbrookes .