I had copd for years in Jan was told I had cancer both lungs and maybe TB after having bronchoscope they thought tumours and shadows were

[Gillian1234]

Massive fungal infection which they gave me Voriconazole. Tablets I've been on these since and shadows have gone and tumours havnt grown which is good sign was wondering if I'd benefit from zypher valve and how to apply I'm under specialist sunderland hospital

[Hidden]

So sorry to hear your news Gillian

Your specialist would be able to advise if you could benefit from the zypher valve

Keeping fingers crossed things remain stable for a long time.

Luv n Hugs

rbht.nhs.uk/research/resear...

[Hidden]

Sorry to hear your news. I can’t answer the question about the zypher valve, just wanted you to know I read your post and send you all my best.

[carolg1]

Hi Gillian, can I ask you what symptoms you have with the fungal infection, my sputum samples always have Candida and the last few have also show colonisation coliform, but no treatment given I have awful mucus problems which is really affecting my breathing drastically, my gullet also I have problems with , I wish you luck with the zephyr valves hope they will consider you I’ve heard good results. Thanks carol x

[Gillian1234 in reply to carolg1]

I had no symptom infection hard to detect sputum was ok was took hospital during night couldn't breath even nebuliser didn't work they did chest x rays showed lungs were collapsing had tumour and shadows both lungs was at home got call go see specialist was told was cancer and probably Tb said I was to week chemo and having copd couldn't operate I heard ppl taking cbd oil I bought some holland barret but sufferes fb copd chat line told me not strong enough but I havnt clue what I need to make stuff they take I take cbd oil tho help getting up sputum so doc asked for bronchoscope this showed I had massive fungal infections I been on Voriconazole since and each scan shows improvement tablets have side effects lost voice few weeks blurred vision ect but gota take and lol I asked specialist bout medical cannabis oil he laughed said only use this country eye ops tho USA prescribed good results Im at stage I try anything

[Gillian1234 in reply to Gillian1234]

Ask docs for scans because isn't candida fungal infection? ? Infec I got has long name forget what but do find cbd oil helps my mucus better than charcoal tablets doc gives carbocistine

[carolg1 in reply to Gillian1234]

Hi Gillian can’t believe you have almost exactly same as I have except they gave me radiotherapy to one of the larger nodules 5 years ago but over the past two years the mucus and breathing has got so bad yet the lungs are clear apart from nodules again in both lungs but I’m too ill to give any treatment to , I’ve just come out of hospital with pneumonia and I spotted your post which rang bells because my gut has been having problems too which type of scan did the fungal infection show on because I have had a few ct scans but never had a broncoscope, all my samples have shown Candida which you are right is fungal I have just started taking the cbd oil too .

Thanks so much for replying I’d lost all hope. Carol

[carolg1 in reply to carolg1]

Hi Gillian, what dosage of voroconizole are you on. Thanks carol

[Gillian1234 in reply to carolg1]

C scans. Just had 1 today. Which was bad cos arthritis spine acting up can't walk pain but got I done fingers crossed infec clears I take 200 g Voriconazole twice a day was double at beginning. With I think was augmenting strong anti biotic think that was name only t uk them bout first 2 wks tho I'm hoping I can come off Voriconazole when see specialist next n cbd oil works for me get mucus up but ppl in USA get medical cannabis. We can't here tho some ppl make there own I wouldn't have clue. Go on fb. Treating copd good luck hope you improve soon we do sound simular and was told can get this infec taking steroids. Xo

[Gillian1234 in reply to Gillian1234]

That's ct. Scans

[CornishBrian]

The valves are usually fitted if you have a large area of Emphysema in your lungs. They replace an operation called Long Lungs....where the damaged area of lungs sort of stretch the lung into an elongated state. The valves are inserted to isolate the damaged areas but only if the damage is in a large area.

[Gillian1234 in reply to CornishBrian]

I've got emphysema

[skischool]

Gillian See this link,it is probably the best i can find to explain the dynamics of Zephyr valves.some people on the site have recently had them inserted and some like myself are awaiting the procedure........best wishes Ski's and Scruffs.x

youtube.com/watch?v=AfCK0tl...(Not working as expected?)

[Foxy79]

Hello Gillian

So sorry to hear about your health I'm foxy from east London I'm 36years old I have copd respiratory type 2 asthma broncechtisis emphysema I'm on oxygen nebulizer and bipeb machine everyday with lots of tablets and colomycine can you please tell me bit about your health issues it's cause I had TB Tuberculosis it's been treated in 09 I never got it back and from then everything when down hill for me every time know I get infection they have to rule out tb and most of the antibiotics have built a resistance on me my heart is doing lung job one side has swollening I'm fruosmide water tablet consultant aren't much help I'm still waiting for transplant I hope things work out for you 👍

[Gillian1234 in reply to Foxy79]

After bronchoscope had wait 6 wks TB results but I'm clear just this massive infection had it since Jan but they also found because of these tablets can't go out sun so lack vitamin D also folic acid get inject b 12 so immune system was down probably how I got infections chest so easy my heart fine and oxygen levels usually in 90 this infection is silent in chest

[Gillian1234 in reply to Foxy79]

I maybe wrong but since I started taking cbd oil I havnt had so many infections I told my specialist I was taking as u buy it holland and barret he's ok I take it it also helps getting mucous up. Just take 2 drop under tongue Hope ur doing well and don't have to wait long for transplant

[Izb1]

Hi Gillian,

So sorry to hear your news, i do hope that you can have these valves fitted and they give you the relief you need. Keep us updated. Hugs , Irene x

[Gillian1234 in reply to Izb1]

Have u got valves sounds like process of getting them a bit like bronchoscope

[Izb1 in reply to Gillian1234]

Hi Gillian, no I dont have valves. I have bronchiectasis and it isnt that serious, although it seems to be progressing quickly. Just wanted to wish you all the best xx

[Gillian1234]

Going ask my specialist when I see him after my next scans hope your enjoying life again after valves

[Foxy79]

Hi Gillian

Thanks for replying I'm on perdiesoline 25mg trying to wean off very hard I have been on it for 8years just after tb it damaged my bones know my body depends on it keeps me out of bugs when you said B injection do you mean hep B vaccination I had mines last week I'm due next week then 6 month can you mobilize sorry to ask it's I want to hear few views if it's OK

[Gillian1234]

No mine b12 injection I can't absorb iron are u USA cos our recovery packs had predispose and anti biotic but stopped giving them cos ppl were taking when didn't need I can move around but gasp for breath hadn't been out house 2 yrs except hospital visits but recently as this infection clearing a bit I actually went shoping my daughter. And meal with sons that was big achieve ment for me

[Gillian1234 in reply to Gillian1234]

That was predisone not sure spelling but they steroid take 6 or 8 at a time my tablet keeps changing words ha