Endobronchial Valve Implants one mont... - Lung Conditions C...

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Endobronchial Valve Implants one month on. What today's hospital tests have shown...

11 years ago•17 Replies

A picture of the Tardis. No, that's not me, I'm far more handsome

So, big day. I have experienced some benefit but not as much as I'd hoped for, especially outside in the cold air. Nice young Portuguese guy stuck me in the Tardis (airtight plethysmograph machine) for exhaustive and exhausting Fev1 and FVC tests and then the 6 minute test, x ray and finally my consultant. Bad news. The parts of the lung that the valves were supposed to collapse haven't collapsed and my Fev1 results are basically the same before and after. Good news is that the FVC results have gone up 23% to 85%. My copd is Airway Predominant which is why I suffer in cold weather but my oxygen transfer is quite good which is why I don't need oxygen. Consultant is not going to let matter rest - he says there are LVR techniques being worked on and has booked me in for further CT scans and another appointment in two months. I trust him 100%.

I haven't been posting here for a few weeks. The site seems to have been experiencing problems from inside and outside, with spam, suspensions and outright bannings. Some guy even said that there is some uber troll here with multiple accounts, undetectable by moderators, so you don't even know if the person responding to you is real or not. If that is the case, it's quite scary. It also begs the question - why? What's in it for him/her, because it seems a bit sick. It also amounts to preying on the weak and the unwell, those in need of information and support. My advice would be to give it a rest and go and seek some healthier pleasures. I haven't been here that long myself but I'm going to be careful from here on. Sad that I have to be. It's sad also that there is this infighting, as if we haven't enough on our plates with our lungs as it is. And if Miss/Mrs/Mr uber troll (uber in your own head) exists, and I am assured that he does, feel free to come after me by all means. I've been posting on football blogs for a decade and I eat trolls for breakfast.

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notlocal

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17 Replies

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libby782711 years ago

Well done, and very exciting for you, will be talking to my consultant about this later in the summer. Unfortunately I had to miss my last appointment through illness. Regarding the other matter, I have heard that some members are being pm'd by a few people telling them scary and ridiculous stories. Uber troll??? Please don't believe all you are told, it is often the very people spreading this kind of upset that are the trolls themselves, trying to cause unrest and worry, which is their aim. The site is nice and peaceful now and let's hope it remains that way. Good look with your valves. LIbby

libby7827• in reply tolibby782711 years ago

Sorry, good LUCK, not look!!

kimmy5911 years ago

All sounds vey exciting, hope all goes well. It's nice having some good news.

Kim xxx

phillips111 years ago

Interesting post notlocal. The Tardis I went in was ancient by comparison and I hated it, especially the bit where they cut the air off. As a mild claustrophobic it did my heart rate no good at all.

Bobby

Toci11 years ago

Hi NC, sorry to hear that things did not work out as planned but it seems as though your consultant is on the ball, which is more than can be said for mine. I hope things improve and wish you lots of luck.

p.s. I've been on football forums too. xx

zaney11 years ago

Hi Notlocal , I have been watching out for a post from you to see how you were getting on ( Couldn't remember your name as was going to pm you on f/b ) , Sorry it didn't go as planned , good luck with your next appointment . Very interested to see the " Tardis " as i have to go in one in a few days . Su

longlungs11 years ago

Hi notical sorry that the op was not the great success you were hoping for,your cons sounds like he is on it though so watch this space eh?What do they say its not over till the fat lady sings or something lol .

Eating such things for your brekkie must leave a bitter sweet taste in your mouth.Lol Takecare of yourself Janexx

notlocal• in reply tolonglungs11 years ago

Wash em down with Lucozade!

11 years ago

Wow FVC up 23 per cent,that's pretty good,I'd take that! Sorry it hasent gone completely as planned,but great you have someone you trust,& is pro active,you have a lot on your side! Best of luck with it,& do keep us updated,as myself,& a lot of others will be most interested!

Things seem to be getting a bit better,you just have to feel sorry for the empty heads,not much in there lives obivously! It will all blow over soon,I feel,

Love Wendells xxx

notlocal• in reply to11 years ago

Thanks Wendells. I see from your pic post that you are a real person. Sorry, but I am quite untrusting at the moment, don't know who's real here and who isn't and it's not paranoia believe me! Photos show that the poster's not a troll. More people should put up pics...

SophiaG• in reply tonotlocal11 years ago

I had thought CornishBrian a real person until the news he has two more identities made me doubt why any normal person would do such things. I am less interested now in who is real than what they have to say I will not be be feeding my own paranoia it has no positive outcome.

I have no idea about valves but is there any chance of further improvements in lung function in the coming months some reason for remaining hopeful what your aims will be fulfilled.

• in reply tonotlocal11 years ago

Yes,I see what you mean,I have always put up pics at different times,I think the last lot was the family at my younger sons wedding.Some people are wary about putting pics up I think,which is a bit of a shame.....

11 years ago

Morning! Thanks for your post and update - I was wondering about you! Well I am sorry to hear that the op didn't give you results that you hoped for but on the other hand you sound as if you have a great consultant - that's very reassuring. As for the other - just decided to ignore it, this site is too valuable for so many people for it to be wrecked by idiots. Take care, and please keep us updated TAD xxx

Sohara11 years ago

Hi I too was waiting to see how your op had gone...it all sounded so promising at first...but it does still seem to be a massive improvement

Your cons sounds brilliant....I feel sure he will improve your results even further....

I am really happy for you that things are improved, just hoped that the improvement could have been more

Love Sohara

out-for-lunch11 years ago

arrgh .... the tardis. I respect that thing .... every time I get into one I pass out, I think it's a case of trying so hard to give them what they want .... the last thing I usually remember is "keep going, keep going ........" & five minutes later I come round surrounded by nurses & everyone looking worried & being nice to me.

Sorry to hear the deflation wasn't so good.

Initially you had said you felt great & could manage the stairs much better. What's it like now?

When I had mine done I felt on top of the world for the first couple of weeks, then, after six-weeks or so post-op I was back to about where I was pre-op. In my case the lobe had collapsed, but the adjacent one had hyperinflated into the cavity, so overall there was no gain.

I feel for you ........

Do you know what plan 'B' the consultant has in mind .....?

Chin up, onwards & upwards & do keep in touch.......

notlocal• in reply toout-for-lunch11 years ago

Hahaha! God I was close to that yesterday! Keep going, keep going..and the Tardis starts to spin...If only there was the Doctor with his magic little gizmo. Thanks OFL, made me laugh this morning.

I still feel better and can do more - but indoors. When the cold air hits my tubes it's the same old story, so feel a bit housebound. Also, a 23% increase in FVC is v good. There is evidence of more diaphragm space even though the collapse didn't happen. Theoretically it still could though.

I'm not sure exactly what he has in mind. He can get a bit technical. There is also a procedure where they stop leakage from one lobe to the other, I got the impression a bit like bathroom silicon sealant. He's ordered further CT scans, wants to look again, I'm thinking of buying a voice recorder so I can recall my talks with him. He's also not one to give false hopes so I'm not as down as I could be today. I'll keep y'all posted.

out-for-lunch• in reply tonotlocal11 years ago

it's good to have a good consultant .... mine's great & very very supportive & definately up for researching new things & fighting with the Welsh Office for funding etc. For example, my valves were done way before it was an approved standard procedure this side of the Severn - took a year to sort, but she managed it. We often email each other with thoughts & ideas. Fortunately we have common ground ..... both into horses so have a mutual shared interest & several mutual friends and acquaintances ..... that's rural life for you.

I totally understand what you mean by recording what is being said. I probably take in about 50% & the rest just passes me by. It's become easier since Sue retired - she comes with me nowadays - she was a biology teacher so has a bit of a head start, understands more of what is being said & knows what questions to ask ..... I just let them get on with it & Sue explains in plain english after the event.

I've always found it useful to make notes in a pad about things I want to talk about before the appointment.

Ho hum ......