Re: Joy

[Guest guest]

You're right, I was so shocked to see my family and myself in there. Did you just put your name in the Google box? That's what I did, or did you do something else also?

To: bronchiectasis From: magickalmum@...Date: Sat, 5 Apr 2008 14:50:23 -0700Subject: Joy

Hi Joy

I am disgusted I googled my name and as you say there is all sort of stuff with our details.

What can be done about this I wonder. i also did my daughters name, she will be shocked when she too reads this.

Thanks for pointing this out.

Cheers Lee

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[Guest guest]

Lee, couldn't help responding. Don't let anyone control your life. Only you know what is best for everyone and don't let anyone initimidate you. I think your decision to not let your dad go is the right one. It would be too much for him.

To: bronchiectasis From: magickalmum@...Date: Sun, 27 Apr 2008 14:41:45 -0700Subject: Joy

Hi Joy

Yep went to bed at 11pm up again at 1am then again at 4am

Grrr it was 0 overnight brrr but a lovely looking crisp morning now.

I have such a dilema now.My uncle died Sunday, aunty rings me to see if my dad is going to the funeral(sort of saying he has to be there) but she forgets dad is 87 and 6 hours drive away with a wife who is frail with alzheimers. She put it that my uncles dementia was worse and trivialised my mums.Geez she should live here. I cant take mum out of her comfort zone and take dad or get someone to stay with mum cos dad wouldnt have it. Mum wont go into respite nor will dad put her there so I do not know where I am going.I hope they respect dads wishes to remember his brother how he was. Also my uncle is being cremated which my dad couldnt cope with that. he isnt a well man so I am concerned the trip and the stress will put him in hospital too.They cant understand that, I spoke to my cousin and she cut me off cos her mobile rang and thats the last I have heard from them. grrrr

families what do ya do. It is making me feel sick worrying of what to do and who to please.

Thanks for letting m whinge so early in the day

Hugs Lee

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[Guest guest]

thanks Joy

I really hoped I would fee in top form by now but alas no..I have to put my cpmuter on no mail for a week as son in law is taking it to check it over.

Hope you are keeping well..catch up when I get back online

To: "bronchiectasis " <bronchiectasis >Sent: Sunday, 17 May, 2009 12:34:04 AMSubject: Re: question-anaesthetics

Hi Lee,Sorry taken some time replying re surgery / anaesthetics recovery. With 20+ surgeries by 20 yrs old (mostly ENT or related). I realised eventually I had a hard time ‘surfacing’ & recovering. It’s hard enough to breathe after surgery, so much pain, airway bruising - but with a chest incision ...! aowwhhh! It may be a cliche some things get easier the more you experience / do. But this kind I think no, definitely not. I hope you’re getting some TLC and nursing..... .the least you deserve after all you do for others. It really does take time - AND nurturing to heal. Hope by this time you’re feeling much much better... And getting the help you need. Joy

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[Guest guest]

Hi Joy, Sorry but I'm afraid that Aspergillus Fumigatus IS ABPA. The allergic broncho-pulmonary aspergillosis is a direct result of having A.fumigaus in the lungs. However the A.fumigatus is one of the less virile forms of fungal infection, Invasive aspergillus and the form that grows into a ball in the lungs, aspergilloma(?) are far more serious. There are several levels of severity relating to ABPA, when mine was active it was classed as severe, causing very bad attacks of asthma, blocked lungs, collasped lung and breathlessness. Now however it seems my bronchiectasis is causing most of my problems as the fun guy appears to be in remission, I think I'll be in very deep trouble when the fungus comes back AND the bronchi is severe!

OK, so where am I? Err . . . Ah yep I know, Cornwall! On the far extreme of the south west peninsula of UK. I'm actually in mid Cornwall near the ancient town of Fowey, exactly at the opposite side of the coast to Newquay.

Recently I've been to Liverpool and Manchester and yes, you're right, everywhere seems to be cleaning up, removing pollution and generally taking an interest in the environment.

The National Health system though, stills operates as randomly as it always has! I'm lucky to have a very good, very understanding and very good looking GP . . .! My consultant in Truro is helpful and friendly and I also have to see a professor in Manchester in relation to my ABPA. He's one of the leading specialists investigating aspergillus in the world! Sorry but I can't pronounce the name of my Immunologist in Plymouth, but see also seems to be very capable.I have tried the saline nebs but never again! My lungs went into uncontrollable spasms and I very nearly died! Here is a list of my meds,

Itraconazole

Carbocistene

Lotratodine

Flixotide inhaler

Salbutamol (Ventolin) inhaler

Prednisolone

Tiotropium (Spivira)

Salbutamol nebs

Atrovent nebs

Home oxygen

These are only the ones I take for my breathing, I also have to take meds to help fight the osteoporosis acquired from a life time on steroids, anti-cholesterol's and pain-killers.

Apart from that I'm great!

Cheers, Mike (Chip) Chapman

Subject: Re: ChipTo: "bronchiectasis " <bronchiectasis >Date: Monday, 10 August, 2009, 8:32 AM

Hi Chip,.... I did wonder about the ‘fun-guy’ - used here likewise but thought you may have been referring to seeing a dr – another variety of fun...not!I was dx w/ Aspergillus fumigatus in March this year via bronchoscopy/lavage, told was ‘very minor, don’t worry, it hasn’t colonised’. But, having been told that about Pseudomonas nearly a decade ago & now have several vars of it, I’m a tad sceptical, feel like it’s another time bomb along with Ralstonia (both nocosomial as is Psa) and Serratia (also in environment as is Psa (Pseudomonas). I did a fair bit of research on A fumigatus, sounds like maybe not toooo serious (yet?), not in same league as APBA...I can’t afford to have a day off doing physio with neb ht 6% saline or Mucomyst, lying down self-percuss. If can’t manage that I ring up to get

assisted percussion, & have managed to prevent infx build-up to severe enough levels putting me back in hospital. Like you I’ve been lucky to have a few days at a time ‘ok’ in between infx bouts but this time – am up to 3 mths 2wks since last bad infx (it’s there all the time really...). so, just hoping the physio will keep the numbers game in my favour s what I have read on any of the above isn’t nice bed-time reading for sure. And now it’s getting late for my above mentioned physio (lungs sure let me know, can’t ‘forget’ it by accident!)Have you tried saline or any other form of neb management? Maybe it’s worth a try? btw, I was born in Sheffield – have sometimes wondered if I’d have had better management of bronch – maybe a lung transplant if had stayed in UK, tho living in Tassie, several other States and now in the tropics of northern Australia I’m glad my

family moved away from bitter winters and ‘black snow’ - tho I gather soot pollution has been much cleaned up – did a bit of and google-earth & Wikipedia on Sheffield, my street looks like it has a park opposite where we lived – certainly wasn’t there back then!Where abouts do you live now? How do you cope during winter? ttfn,Joy