Chronic pulmonary aspergillus

Hello all this is my first posting on here, to cut a long story short, My Husband who's 53 was firstly diagnosed in 2008 with Acute myeloid Leukeamia (good risk) which was successfully treated and now been in remission for 7 yrs, but on his last cycle of chemo he developed a rarer well in UK anyway, invasive fungal infection called Zygomycetes, his consultants didn't think he would survive as it had spread to liver,spleen and bone, but he was treated with IV Ambisome and oral Posaconazole, treatment for 1 year in total, outcome: treatment successful and consultant thinks he even coughed up fungal ball in lung cavity as the cavity was clear on final CT, great life back to normal.

All has been fine until Sept last year when he developed a severe persistent cough, the worst cough I have ever heard!

Went to GP, who ordered an X Ray which they said did not look much different to last X Ray, cough still persisting, referred to respiratory Consultant said she would arrange a CT, explained we were about to go on holiday to Egypt , she said fine to go.

Whils there my husband had quite large hemoptosis so ended up in hospital,this resolved, on return home back to consultant, bronchoscope performed, non conclusive, 3 sputum samples were put in for cultures, they showed Aspergillus fumigatus ( scanty growth) but consultant was adamant no treatment necessary and his body would probably eradicate on its own, I was not happy with this especially due to his past history !

I was practically begging them to start some treatment but they stuck in saying none necessary, it all blew up in January when he had a large hemoptosis, and they had to have an embolisation of 3 vessels, it was only then and I feel after I had got his haematology consultant involved they decided to start some treatment.

They started itraconazole oral 200mg twice a day, he is well in himself and very fit.but on a recent sputum sample it showed moderate growth for Aspergillus whereas the month before it was showing light growth, his consultant feels there would be little benefit on changing the anti fun gals to another one, but I feel it must be worth trying, we are as now waiting to see what the micro biologist says.

My main concern is his life expectancy, and is there still chance after nearly 8 months of itraconazole it could still work, or anything else !!

I would be grateful for any help or advise

[fcag2001]

Try and get a referral to Manchester University lung centre of Excellence - Prof Denning . He is the top man and in UK you cannot get any better a person for fungal infections In the lungs - Push hard .

[Hidden in reply to fcag2001]

Thanks fcag2001 we live in Devon and Manchester is a long way for us I will wait and see what micro biologist says about changing the itraconazole and will probably be talking to his haematologist too.

As for now hubby is very well in himself with no obvious symptoms, working and keeping fit cycling and kayaking.

[freefaller in reply to Hidden]

I got a referral to Manchester for my CPA. Only confirmed at my visit last Friday. I live on the tip of Pembrokeshire and it is at least a 6 hour drive for us. It is a long way a lot of petrol and one or two night's stay there but worth it. On average spend 3 hours there, consultation, blood tests physiotherapy and talking to the nurses. Now I have started my medication will need to go there every month for a while. I hope your hubby gets better help. He is lucky to have you to look out for him.

All the best

Sian

Xoxoxox

[Mariongisela]

Hi - It's hard for us wives when our husband's have these illnesses - I feel so frustrated with it all and stressed up to my eyeballs not knowing what the future holds. My husband has aspergillosis in the lung and at the moment his problem is the coughing apart from that he is a lot better than he was - no one has mentioned anti fungal drugs to us. My next step is to try and push for a visit to Manchester, although we are inKent . I am dreading the winter weather...... At the moment we are on holiday in California where the weather is very hot and dry and I think that has helped the cough slightly.

Take care of yourself .

Marion x

[Hidden in reply to Mariongisela]

Hi Marion thanks for your reply, I am a bit surprised your husband is not yet on any Anti-Fungals, maybe he is only showing scanty growth, my Husbands horrific nearly constant cough stopped virtually within a week once he had started Anti-Fungals, he only coughs a bit first thing in the morning now, which is bareable, hope you have a lovely holiday and he gets sorted once your home

[freefaller in reply to Mariongisela]

You should have no problem getting a referral if I can get one in Wales as our NHS is devolved I had to get special permission but Manchester got my referral within two weeks and they then try and see everyone in two weeks. This is what happened with me. As it is the UK centre of excellence patients come from all over the UK and the world. It is absolutely wonderful there Everyone is so helpful.

Good Luck

Sian

Xoxoxoxxoxo

[Mariongisela in reply to freefaller]

Morning Sian,

We had , on the whole a very good holiday in Californina. John was well nearly all the time dipped with his 02 readings on two occasions and these were when we in areas affected by the huge California forest fires - in fact for the first time in 18 months he slept the night through without coughing and having to get up to get rid of mucus muck,.....However upon our return he has been coughing all the time - back to separate bedrooms again.

We have no appointments booked with the local chest specialist - last. One being July when he was prescribed the antibiotic he takes three times a week and told to have this for four months - so course will finish beginning of November . Have booked him in to,have his flu jab today and then to,have a pneumonia jab - although no one has mentioned this to us. He really wants to give the anti fungal a go so my question is can a gp prescribe this or does it have to be a chest specialist...... Although through research I do see you can actually purchase it on line.....

Glad Sian that you seem to be in good spirits.

Dreading the winter and the constant viruses and germs we all get subjected to.

Best wishes

Marion xx

[freefaller in reply to Mariongisela]

I really don't know whether a GP can prescribe it? Best thing to do is ask. Does John have a consultant? Don't think it is a good idea to buy it in line. Need liver function tests every month to make sure it is not harming your liver. Also not sure that you would be getting the genuine drug on line.

Talked about the pneumonia jab today with my Doc. I have had two because it used to be thought you needed one every 10 years. One in 1995 and one in 2005. I am going to ask in Manchester next time whether they think I should have one this year.

Where do you live? I would recommend the National Aspergillosis Centre to everyone. As it is THE National Centre we all have a right to be referred there. Your consultant should really tell you this but I know they hardly ever do. I was surprised when my consultant mentioned this. My BLF Nurse I was in contact with online had told me about it but I was waiting for the result of my biopsy before asking for it. Once they receive the referral letter you shouldn't have to wait longer than two weeks for your first appointment. Though when they are busy it may be a little longer but I only waited the two weeks.

Glad to hear you had a good time in California and John did so well there. Maybe we should all emigrate?

Love and hugs

To you and John.

Sian

Xoxoxoxox

[garyjames]

I have had 5 lung specialist over 5 years.

No treatment from 4.

Now in thailand on itraconazole oral 200mg twice a day.

Have been told by all it MAY reduce cough but will never cure.

I start canabis oil in 2 weeks.

Vapourise,oral & suppositories.

good luck God help us

[Hidden]

I am now assuming due to minimal responses to my post that my thoughts are correct, that the prognosis for chronic pulmonary Aspergillus is between 1-5 years which is what I have been reading, thanks to those who took the time to respond

[freefaller in reply to Hidden]

I don't think this is so these days. This may have been so decades ago but I meet people in Manchester who have had this for far longer.

[freefaller]

Can't message you as you are hidden. Hope you get this. It looks like you read the same things online that I did when I first heard the word Aspergillosis and Aspergilloma from my consultants. Just remember a lot of this is out of date. These days anything over 2 years old can be deemed as out of date,. You really need to get to a specialist centre like the National Aspergillosis Centre - look them up online. They also have a good website where they tell you the current thinking and facts as they are known about Aspergillosis. You could also contact a British Lung Foundation Nurse. I am so glad I contacted BLF online but you can telephone - don't have the number to hand as in bed but will post it tomorrow if I remember. It was thanks to my BLF Nurse that I got myself referred to the National Aspergillosis Centre. I have also heard that a lot of people go to the Royal Brompton too. My Doc again confirmed today that he couldn't remember ever hearing about Aspergillosis and didn't have a clue what it was. A lot of GP's will be the same as him and will have to look it up and will have no clue as to treatments.

I do hope that they find something that works for your husband.

Good Luck

Love and hugs

Sian

Xoxoxox

PS There are a lot of us Aspergillosis sufferers on the British Lung Foundation part of the Health Unlocked website so come on over and ask us on there too. S xoxoxo