British Lung Foundation
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LAM specialist advice

Hello BLF friends,

I had a feedback from the lung specialist on continuous chest infections.

He said it takes quite a while to get rid of it.

He said the rule was prompt antibiotics treatment and bronchial draining with a physiotherapist.

He advised on a treatment of Respimer sachets to clean sinuses for weeks. I ordered the kit and sachets from the chemist’s. I think you have the equivalent in the UK like a Sinus Rinse.

Then he gave me some nebs Terbutaline to start on 3x a day. I will have to wait till I get home as I left my nebuliser behind.

So I’m going to try it all and let you know how I get on.

Love xx

Fran

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Good luck my happy friend,you might like to chuck in some cbd oil,medical cannabis and a couple of salt lamps in as well.all hot topics on the dodgy site at the moment.

Seriously you are very informative and give loads of good practical advice both in the medical area of peoples conditions and the equally important meditation techniques and videos you post for those that find solace in the more cerebral forms of treatment.

take care Fran.love..................Ski's and Scruffy xx

p.s well done France in reaching the semi finals and hoping our English chappies meet you in the final

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Dodgy indeed. 😒 I second that Skis. xx

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you misunderstand me dear cas,i jokingly refer to us here as the dodgy lung site and i love the internet and it's diversity and as far as i am aware like any market place common sense says it is "buyer beware"and use your own judgement as to what you think may do you good..........love Ski;s and scruffs xx

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Yes, dear Skis of course you are correct. People should make informed choices for themselves. 😊 And I am happy to be part of our happy "dodgy lung site". 😀😁😄 Hugs for you and Scruffs. xx 🌹

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A girl’s got to try my dear Skis! Xx

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Hi my dear Fran it's good to hear from you. Glad to hear you've had some advice...I've done sinus rinses they are pretty good, though mine were steroid based aswell :-) . I really hope you start to feel better soon honey. Congratulations on France winning recently! Tres bien! :-) Lots of love to you xxxx

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Hello my dear Anne

Ah steroid based nasal rinse I haven’t had just the spray..

Yes lovely match and now we shall play Belgium and not Brazil!!

Good luck with your match!!

Lots of love back xx

Fran

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Hello Fran,

I hope it helps you and you are doing okay. xx 😘

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Thank you Cas 😊 I expect it will be a long treatment, I will need a lot of patience.. 😃

Xx

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Hi I sometimes use a Salt Pipe!

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I read about those thanks 😊

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Missed you on here recently, Hope the Meds work for you Fran, Like Darceydoo, I too use a salt Pipe have done for 3 Years (mine is a 5 year Ceramic), When I go to Hospital I use it there. My Consultant Knows, But doesn't say "Yeah or Ne". Well done your through, France & Belgium, should be a Good Game. Abrazos y Besitos. XXXXX

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Gracias Carolina!! I have been busy looking after Mum and myself I left on the 16th I’m hoping to go home on Tuesday but taking it one day at a time because Mum got herself dehydrated with the heat, she is 90 and she doesn’t like to be told 😃

Take care Carolina xx

Fran

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Hope it all does the trick for you Fran xx

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Thank you Joyce 😊

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Wishing you well with everything and hoping things work out for you. Xxxx 👍😘💖

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Thank you Carole 🤗🌸💕

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Good luck with all the treatments, I hope you'll soon be benefitting from them - and of course, good luck against Belgium!

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We need it!! What a team!! Thank you 😊

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I hope that you find Terbutaline works as well as it does for me, although mine is a powder delivered via a Turbohaler. It works very quickly and I use it as a replacement for Salbutimol (Ventolin) that only gave me leg or arm cramps with no help to my breathing. I have been using Terbutaline for 18 months now without any issues at all.

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Thanks 2Greys

Sounds good but I have to wait to get home on Tuesday, get my GP to give me prescription for it. I will use what I’ve got at home in the meantime. The Ipratropium/Salbutamol mix.

Then find a respiratory physiotherapist who is around in the summer..when you think that the pulmonology department is just behind my house and they don’t want to deal with LAM apart from pulmonary rehab, they send me to Lausanne, a good 30mn by train, then taxi to the top of the town and those specialists only see me every two years in December.

Health and bureaucracy..

May cross the boarder to France it is 20mn away and cheaper.

Yes Ventolin gives me cramps too.

So I will soon be home I hope except if Mum deteriorates, I will have to consult locally. I can’t see her coming back with me either. So it is one of those things. I have been here since the 16th but she has her own mind although she cries all the time, I don’t know what to do anymore.

If she does come back with me I won’t let her go back to that care home I will find a nice place close to me. Too difficult to manage a 90 year old at a distance.

Thanks for answering me back xx

Fran

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Guess what I got the prescription for Salbutamol nebs despite the fact the LAM specialist recommended Terbutaline..sniff..I suppose it is the cheaper option?

Anyway I have got the nebuliser and the nebs, I have extended my stay until Sunday as Mum is not back to her old self, we have been waiting for a home visit since 8 am..

had my early morning physio, she said she would also come at 7.15 tomorrow, I can’t complain being a lady of leisure!

Life in the South of France is not like in the tv ads 😃xx

Fran

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Hope it goes well for you x

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Thank you Dickinson 😊

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Hope it all does the trick for you! xx Moy

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Thanks Moy 🌸

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Hi Fran, hope you feel a lot better soon. Majt xx

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Thanks Majt, he said to be patient it will take weeks! So Im being very patient 😇 xx

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Dear Fran, so sorry about these chest infections they are a pain. Look after yourself and I hope you'll soon see a improvement. Majt 😙 Xx

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Oh Im ok considering I haven’t stopped..the physiotherapy is the best thing ever, worth the pain lol

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Pleased the physio is helping Fran. Majt 😃

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Good luck hope it works xx

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Thank you Bubbles 😊

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Dear Fran I do feel for you and your predicament. You have more than enough to cope with in your own health. I also had the care of my father and later my mother to worry about. I don't regret for a moment the years I gave to them but my health was not bad at that time.

You really must, in fairness to yourself and to Bea, impress upon your mum that you have to go home and she must go with you. Maybe the time has come for you to make the decision that she obviously can't. Wishing all that's good for you and yours, Sheila xx

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Thank you for your support Sheila 🤗🤗

You can’t tell my Mum what to do 😃She reminds me of the old landlord of The Queen Vic on Eastenders 😮

Mum got very angry that I told the Residence manager last night because I wanted the night duty to know.

They have their own studio flats you know with alarms on the wall but when you are flat on the floor you can lay there till a friendly neighbour finds you.

Which is what happens every time. We had the wrist, then collar bone twice, then the knee and replacement and femoral and replacement..

Dad was different he thought he would live to be 100 and was doing what doctors told him. Poor Dad 😢glad he was in denial..

Anyway she said I was sticking my nose in where I shouldn’t etc so I’m letting go now..I had to have my physio at 8 am, rush to the supermarket and chemist’s, left the goodies, got a mouthful and I said bye for the day..

My brother said you stay till the end of the month I said you come from Singapore to look after her..the dutyful daughter has had it.

As Bea says can’t pour from an empty cup..She hasn’t got dementia or anything she is afraid now so has closed up.

Anyway my daughter needs me, we have to move things out of the flat before the works continues. We already had problems with the windows, they

messed one up and ordered the wrong size for the living-room, I had to deal with a grumpy window fitter 🙄

So it will be Mum’s choice, if not I will hear it every day!!

Sorry if I vented..thank you xx

Fran

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Don't apologise for venting Fran I think I'd explode in your place ! You've done all that you can and now you owe it to Bea and yourself to get on with what you need to do. What is it with brothers ?????? I had three and I loved them dearly but they were of the old school ( and my mother spoiled them ) who thought the female of the species should always step up. Everything will work out, you'll see. Sheila xx

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Oh yes thank you Sheila, things usually work out in time. Too right about brothers!! Still I’m the eldest 😃😉 My brothers know I’m not one to keep my mouth shut if necessary 😇

Well now Mum is unwell so more subdued let’s say. If no better she will see her own doctor on Monday. So leaving on Tuesday maybe too soon. I have blocked my hotel room to the end of the week in case something develops.

Hopefully she will get better but the heat doesn’t help.

Wishing you well Sheila xx

Fran

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Hope it all goes well. Fran 👍😊🌻

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Thanks a lot xx

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Hi there,

I have implemented what your specialist advised about 3 yrs ago and now do not have to do the nasal rinsing and bronchial draining any longer (they both helped clear infections after about 6 months and I stopped doing it). I hardly ever get infections now (0 to two a year) and if I do, a course of antibiotics fixes it straight away now. So be diligent initially it will pay off! xx

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Great!! Thanks for the info x

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Are you living in England because I was never offered this type of treatment under the NHS..

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Hi Happylondon, I am in Australia. Instead of physiotherapy you can use the bubble PEP method - it may also help (readily done by yourself at home and I found it very effective) but really depends on mucous thickness and individual lung anatomy as to what is more effective -maybe combination of both. Check it out here: cincinnatichildrens.org/hea... Good luck xx

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Ahhhh Australia..now I understand 😉 Been blowing bubbles 🥤thank you for taking care 🤗

My problem is cystic you see, I have cysts blocking my airways and giving me trapped air. It is a degenerative rare disease but I am pretty stable and happy most days.

I am very well looked after medically, too much really 😃. They all want to take interest when you are a rare case. I undergo too many tests without proper answers.

Only one doctor has the know how. I have an excellent LAM specialist. I am grateful and lucky to have him emailing me back how to go about things because he is busy lecturing round the world these days..

Wishing you well,

Fran x

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thanks for sharing info Fran,, look forwaredd to hearing how it went,good results hopefully xx

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Good luck Fran 💕

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Sorry to hear of your troubles, Fran. I can certainly identify with you on your mum not wanting to be told anything.

My husband is the same and doesn't have the excuse of being 90 as he's only 67.

Interesting to hear of your treatment and will look for equivalent of Respimer sachets here in uk.

Take care and wishing you al the best

Corin

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Haha..thanks for sharing that Corin dear, you made me laugh.

Today Mum told me to go back home to Switzerland I would breathe better there 😂. Indeed I will.

I have organised meals on trays at the home, her doctor’s visit for tomorrow morning. I don’t think she is at risk anymore, no more than any 90-year-old anyway. I asked her doctor to be vigilant about her nutrition and hydration. He doesn’t know her much, the last one retired.

The lady in charge of the residence was very nice. She said she can’t tell Mum what to do, which I perfectly understood but I said you have a duty of care if you see one of your residents putting herself in harm’s way to let the family know and you have my authorisation to call a doctor.

I have a ticket for Tuesday. There is only one train a day back home, after that it will get complicated because of July 14th etc so if the doctor gives the ok, it will be back home to my nebuliser 😉

Take good care of yourself and hubby xx

Fran 🌺

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Wishing you all the best Fran ,I hope your Mom is feeling better, wishing you a safe journey,and that the Medication works for you.🍀

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Thanks Susan 😊🤗

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I use the sinus rinse thing - not very pleasant to do but does the trick!

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I used Physiomer just a sea water spray until now, I read the Respimer notice it seems pretty similar, more expensive I’ll see..I used to have a neti pot..those things tend to irritate my nose, ears and throat.

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