Zephyr Valves

[SarahEG]

Dear All, I had 5 valves out into my left lung a few days ago. No complications, came home tonight. Is anyone in this forum who’s had them please? Just wondering what the recovery can look like. 😍

[Caspiana]

Hi Sarah. I'm sure others will be along to reply but you can also use the community search engine. If you type in Zephyr Valves related posts should come up.

Best wishes for a speedy recovery.

Cas 🙋🐶

Community search.

[SarahEG in reply to Caspiana]

thank you

[Rattled]

Hi SarahEG,

Had 3 Zephyr valves installed in upper left lobe in July 2023. Very tired at first and amazed at how sore my throat was for a few weeks. I now know that although not everybody gets the sore throat it isn't uncommon post op.

I didn't really notice any massive change in my condition for a few months. Then I had to do a peak flow test for my GP practice respiratory nurse in the Autumn and found it had gone up from my usual 140lpm to 170lpm. When I actually stopped and thought about it I realised I was no longer having to stop halfway up the stairs for a breather and that I was coping with household chores much more easily. I suppose the change had been so gradual I just hadn't noticed (how thick am I?). I still suffer shortness of breath if I'm outside in cold weather and steer well clear of things like bonfires or fireworks but, overall, there is a definite improvement. It's certainly not a cure but it has definitely put me back to where I was 5-6 years ago in terms of what I'm able to do.

Had flu over Christmas 2023 (definitely not Covid) and my peak flow dropped straight back to 140lpm and it has stubbornly stayed about the 150/160lpm mark since. BUT, despite being very slow to achieve there is a definite and noticeable improvement over my pre valve condition.

Hope this helps and wish you well.

Rattled

[Izb1 in reply to Rattled]

That's such good news Rattled that your valves have worked well and hope you get back to feeling well x

[SarahEG in reply to Rattled]

Dear Rattled. Thank you for your reply. I’ve still got the sore throat but am only on day 5 since the operation. Am feeling pretty rough right now 😟, but touch wood, no complications. They had a look at my other lung when they did the operation and say that I’m suitable to have them in the other lung too when the time is right. Would you do it again? Sarah 🙂

[Rattled in reply to SarahEG]

Morning Sarah, the short answer is yes. For me it has been worth it.

It took longer than I expected and, like you, I found the first week or two hard. I drank plenty of fluids and made sure to get up and walk as much as I was comfortable with without overdoing it.

Take care of yourself,

Rattled

[PaperQueen]

Hoping your recovery is as quick as possible Sarah and that it makes a real difference for the better. I'm hoping to have either valves or lung reduction surgery. I've had a CT scan and echocardiogram and have an appointment with my respiratory team next month, so fingers crossed. Good luck x

[SarahEG in reply to PaperQueen]

fingers crossed for you too!

[jackdup in reply to PaperQueen]

How did you make out with your tests and are you eligible to have the valves placed? If so do you have a date when they will perform the procedure?

[PaperQueen in reply to jackdup]

No, I don't think I am eligible ☹️, emphysema too extensive across all lobes. I have to go back in about a month and see what's considered possible, but not hopeful. Going through a really bad episode at the moment too, really struggling to do anything much. Roll on summer! xx

[jackdup in reply to PaperQueen]

That’s really unfortunate. I hope and pray when you go back in a month they will have something to offer you. I hope too you start to feel better soon.

Take care

[PaperQueen in reply to jackdup]

Thank you Jackdup, fingers crossed! x

[Patk1]

Hope u soon feel the benefit x

[lovejoyliz]

Hi Sarah,

Well right now l am going through Pulmonary Rehab Sessions that are pretty gruling and then having more tests Echo and CT Scan to see if l am a successful candidate for the LVR Zephyr Valves operation, l will not know until possibly after my last appointment at the Royal Bromptom after Janurary 9th 2025.

I am pleased that you got your operation done and l hope that you are now feeling a lot better that before you had the procedure.

Regards

LovejoyLiz

[SarahEG in reply to lovejoyliz]

Hi Lovejoyliz, have you heard anything?

[lovejoyliz in reply to SarahEG]

Hi SarahEG,

No, l have not heard anything more, right now my next appointment with the Consultant is not until April 15th.

[Germantara]

I hope you feel the benefits as you recover it take time

[Nor12]

Not me but I'm interested how you do. Can I ask your story

[SarahEG in reply to Nor12]

Hi there sorry for the delay. I was diagnosed with severe emphysema in my early 40s after a blue light into hospital with a chest infection and I couldn’t breathe. After a period of googling how am I going to die and how long have I got left for about 12 months, I looked for positive stuff online. Found an Australian amateur marathon runner who had the exact same diagnosis as me so I started to go to the gym, trained on oxygen and after 2 years of training did the London marathon using oxygen … took 9 hours lol. After that came covid and lockdown and my fitness went downhill fast. 2022/2023 started to get very difficult, I was prescribed ambulatory oxygen which I wouldn’t use but increasingly had to. Very depressed and spent most of my time on the sofa when not at work. I moved to West Yorkshire and asked my new GP for a referral to the respiratory folks to get me on their books … first consultation I asked for surgery. I was quickly getting to the point where I was looking at benefits and retiring for medical reasons. I’m 58 btw. That’s all very brief, feelings wise it’s really sh*t having COPD. I used to smoke, so went through a period of self-blame. The things we don’t talk about are horrible too … gastric distress and bladder problems through the breathlessness. Monster fatigue. Not wanting to do anything social in case it involves walking or stairs or eating a nice meal and breathlessness at the table because your tummy’s pushing on your lungs. I’ve never had a cough, I have one now and again nowadays too and its so refreshing to be able to feel “loose” rather than the tightness I had before. I tried to keep pushing through but was ready to give up tbh.

[SarahEG]

I’m following this up. It’s about 12 weeks down the line now and my life has changed. I’m amazed every day about walking on the flat without breathlessness. Doggo and I have just done a mile, half of which was on an upward incline, and for the first time we didn’t have to stop for me to find my breath. She’s a sniffy dog so we do slow down now and again but it was nothing to do with me. I’m working on my fitness daily and the procedure came along at the right time - the struggle was daily, everything physical had to thought out or avoided (you know what it’s like). Even with breathlessness, I am not the wreck I’ve been before because I can get a good deep breath. I’m blessed. I asked for the procedure, I would encourage everyone to do the same xxx

[Patk1 in reply to SarahEG]

That's amazing SarahEG x

[Theweehighlander1]

matin va ,

sarah , this is joseph , from the highlands. sarah i have copd stage 4 . i am trying to get zephyr valves / is this the one's you mean

[Vinny5 in reply to Theweehighlander1]

hi I live in Cyprus and enquired about zephyr valves in uk at Royal brompton as no Dr here who did it. Would have cost me 25,000 pounds but they felt from seeing all scans etc., prob not suitable and would need lung volume reduction operation 50,000 pounds. The following year found dr in Cyprus and he agreed with Dr shah from uk and performed Lung volume reduction operation last April. Free of course here. I wish I had never had it done. I got infection In Hospital and was ICU in coma for weeks eventually came through it but still,to this day worse breathing, can’t now do any stairs, so,tired all the time, constant coughing, chronic indigestion if eat any thing. I had stage 4 emphysema and thought my only chance left but left me worse off than I was. Think very carefully before you decide get the mortality rate figures and success rate figures. Not trying to,scare you but thought y ou should see. bad side as well.

[Theweehighlander1 in reply to Vinny5]

o f s , thank you sooooooooooo much for answering me . thank you for the information . my wife comes from sardenia , mmm , i wont be asking them .

is it ok if i keep in contact ? . thank you

joseph

[Vinny5 in reply to Theweehighlander1]

No of course not. Hope your decision goes well for you.

[Theweehighlander1 in reply to Vinny5]

matin va ,

thank you , i find at this time in my life i need to heed my pear's ,, the oxygen is low ,I'm just about to suck on the o - 2 go tube . then set out the venison for the weekend as i am having a new tortoise table built for my giant tortoises that live with me .

[SarahEG in reply to Theweehighlander1]

Yes that’s what I’ve had done - 5 valves in the left lung. The physical criteria is pretty strict .. my understanding is that my emphysema is mainly at the top of both lungs and thats where the valves were fitted.