Losing faith in diagnosis

[carolg1]

I have severe copd brochectasis emphesema and 2 small lung ca in right lung which at present are being managed . My worse problem is the constant flow of mucus giagantic amounts which really affects me mentally physically can I seek a private consultation for treatment if so any idea how much it will cost because I think because I have cancer I am being treated differently . Any suggestions peeps

[Hidden]

This nothing to stop you seeing a private consultant.

But nhs will disregard them .. You can ask to see other nhs consultant

Or register for trial's ... or just have word with you doctor consultant

Hope that helps wishing yku well

[itsBAme]

nhs.uk/chq/Pages/2572.aspx?...,, all the very best carol x,

[itsBAme]

nhs.uk/chq/Pages/892.aspx?C...,

[Charleyct]

I was taught a great trick at respiratory physio for the mucus. You need an empty bottle-3/4 full of water, a straw or some tubing and a box of tissues.

Basically you just need to blow bubbles into the bottle of water using the straw/tube. Sounds silly but it helps to bring up the mucus immediately and empties the lungs from the bottom, (hence the need for tissues!) it's hard work so take it easy but it's one of the best tricks I've learnt so I like to spread the word!! X

[Nanny1086 in reply to Charleyct]

Hi, that sounds brilliant ,i struggled with all the mucus ,sometimes even gagging when coughing ,,,,not nice ,,,I was lucky to be prescribed a FLUTTER DEVISE to help me ,,,which I think works on the same principle of chest clearance, ....I also take mucodyne tablets twice a day ,( not sure how helpful they are FOR ME in chest clearance )

Yes It's hard work doing chest clearance ,,,,so I agree with you ,,,,lots of tissues needed and a glass of water to sip between coughs/clearance, a brilliant idea,I'm sure lots of people will benefit from trying this ,

[saintsfan]

As far as I am aware you can speak to your GP for a referral letter for a private consultation. The price will no doubt depend on where you are in the country. Last year I had a private consultation with a cardiologist and it cost £200 this is in Hampshire. If you look on the web site of any private hospital in your area you will find a price list.

Best of luck.

[lulu5555]

Hi I am on carbocistine capsules which are great for muscas, your doc will be able to give you them Check them out believe me amazing

[Nanny1086 in reply to lulu5555]

Hi ,mucodyne ,,,????? Not sure of these tablets ,,,I've been taking 2 pills twice a day ,,,,and didn't notice much difference in helping clear the mucus,,,,in fact ,,,I was thinking they seem to be damping down the mucus ,,,,any further advise on these pills would be appreciated ,thanks ,

[hallentine47 in reply to Nanny1086]

I take mucadyne but still I need to have a Bronchostomy using a hoover type tool to collect the mucus holding the infections. I suffer every night 3-4-5 am trying to clear the stuff. Not unsure if Mucadyne works but keep taking it anyway.

[Nanny1086 in reply to lulu5555]

Hi ,what's the difference between Carbocistine capsules and mucodyne ??

[lulu5555 in reply to Nanny1086]

They are the same, really works for me I am on oxygen and am severe, so I need something that works. all the best mary

[Nanny1086 in reply to lulu5555]

Thanks ,best wishes,

[wissey]

Hi I asked my gp for mucodyne he said no its best to get mucous up or you will get infections ???

[Nanny1086]

So are you saying mucodyne IS MORE OF A DAMPING DOWN OF MUCUS ,,,?? Rather than helping to clear it ,???

[Hidden in reply to Nanny1086]

My consultant told me that Mucodyne keeps the sputum runny, making it easier to cough up.

[soulsaver]

Mucodyne is Carbocisteine. patient.co.uk/medicine/carb...

It supposedely thins mucous making it easier to shift, but doesn't appear to work with everyone ie a fair proportion think it's great ... and a lot think its waste of time. Seems to make me worse.. cough all day.

[ennabell]

I have Bronchectasis and my physio gave me a nebuliser to inhale saline. This makes it easier to give my lungs a good clearance every day and I have been infection free all winter - have had amazing results with this. Everyone should try it.

Ennabelle

[stillmovin in reply to ennabell]

Hi Ennabelle, I would like to hear more on the nebuliser to inhale saline that you mention. What is it and how do you use it? What is its brand name (if it has one)? I would like to get help as I have trouble getting mucus up. stillmovin1

[bayleyray-uk in reply to stillmovin]

Hi Stillmovin1,

I have been using a nebuliser for two years, first of all for Ventolin and then about a year and a half ago my resp. physio. suggested I try saline in my nebuliser as I was part of my routine as I was having trouble coughing my mucus up, I started with a routine of 1 nebule of Ventolin and after a short break a nebule of saline, the saline mist aggravates the fine hairs in your lungs which lift the clumps of mucus and help them move upwards. I will not lie for me it's hard going as I have very sticky gunked up lungs and I use it before I go to bed and hope to get a reasonable night. By the morning the gunk is back again but as I can only take a maximum of two ampules in 24 hrs. and it's so body shattering I try to do without the second ampule. Last June I was put on 4 ampules of Ipratropium Bromide a day as well to help move the gunk. Some days are better than others. Have a word with your consultant or resp. physiotherapist. It's worth a try if they agree, I have decided to try everything at least once, just in case it works.

Good luck

Sue

[stillmovin in reply to bayleyray-uk]

Thanks Sue for this good information. I will be checking out more on this at my next hosp consultant visit. Of course, I never get to see the same consultant at each visit and they are now 6 months instead of 4 months apart.

stillmovin1

[ennabell in reply to stillmovin]

Hi stillmovin1

I think bayleyray has answered your question for me.

[ennabell in reply to stillmovin]

Hi stillmovin1

Just a thought to add.

The nebuliser was issued free by the hospital and my gp prescribes the Nebusal saline vials

that are put into the nebuliser and inhaled for about 15 minutes. It causes a lot of coughing and getting used to but it is well worth end result.

[stillmovin in reply to ennabell]

Thanks ennabell I will ask at my next hosp visit about this. stillmovin1

[ennabell in reply to stillmovin]

Sorry I am not used to doing these messages. Just to let you know that my consultant referred me to the respiratory physio who was a great help and arranged the nebulisor etc. Hope that helps.

Ennabelle

[stillmovin in reply to ennabell]

Thanks ennabell that is a help. I will try to see the resp physio again. They only gave me 2 sessions with her when first diagnosed with bronchiectasis and that was all I was allowed. Some parts of the country have better service than others I think. stillmovin1

[Bevvy]

Just an idea. A couple of times I have paid privately to see consultant. But always a consultant who also deals with nhs. I've had initial consultation private and then because paying and no insurance consultant has switched follow up appointments to nhs..... Just a thought.

[carolg1]

Thank you all for your comments really appreciated xx

[carolg1]

Hi thank you for replying I read your post with interest I would gladly put myself forward for any trials rather than suffer as I am at the moment it's as if my lungs and gastro have joined forces to cripple me ! I'm an ex aerobic instructor and it is devastating me mentally and physically , if you know of anywhere I could put myself forward please point me in the direction , once again many thanks xx carol