Endobronchial vales

Well so disappointed more breathlessness than ever and the pain is shocking. Already looking to have them removed,never for a minute expected these valves to make things worse and even more worrying is they don't know why makes me feel so full of confidence I have now spent the last or most of the last few weeks in bed just so tired/exhausted. I was pretty restricted before this procedure and now feel what I was expecting to happen in time as suddenly landed on me like a ton of bricks.

I'm doing my best to ride with it and hope things settle down I've tried to get an appointment with my regular respiratory consultant but he is away until the 27th I've phoned the respiratory team at the hospital left a message but had no reply but sadly that doesn't surprise me.

Dont even know why I'm posting my problem, I made the decision to try this procedure and now I guess I'm paying the price just wish I wasn't on my own right now that's for sure .

13 Replies

  • So sorry that the procedure hasn't worked for you.....you say you are on your own....how are you managing.

    I hope you hear back from the hospital tomorrow....did you have the operation at the Heath? I was born and brought up in Cardiff, not far from the Heath hospital. My daughter went to university there, but the city has changed so much in the last forty odd years.

    I hope you get some help soon...take care

  • So do I , no one should have to go through what you are going through all alone...but you're not alone you have us! I am glad you posted, you are very brave to have undergone this surgery and I hope you will start to feel the benefits of it soon. The anesthetic would have me laid out for weeks and I hope you are on a good diet to help you to heal faster.

    I would insist on a home visit to make sure you are infection free. I will read up about the procedure and follow ups on people's experience. Please let us know how you are doing, huff xxx

  • Hi meglou I have not heard of the procedure you mention so have done a bit of research to find out what it is. Apparently it is done to make it easier for you to breath and it is done instead of doing a lung reduction.

    Surely if you are more breathless and in pain since having your procedure then something isn't quite right so why have they let you out of hospital? It doesn't seem right to me.

    I think it is disgraceful that the hospital hasn't returned your call. Possibly talking to your own doctor is advisable to get things moving.

    I wish I could be of more help to you.

    Regards. John

  • Thanks you all for replying yeh I had the procedure done at the Heath it's a trial that I've had it done through, I was referred by my respiratory consultant for having it done on the nhs but was passed over to the trial because there is no funding via the NHS I went through weeks of tests they are so strict you meet the criteria,after being told I had been accepted for the trial I had massive wobble and wasn't for going through with it,i was scared to death they wouldn't get me breathing again after general anaesthetic and my that certainly was an experience having to have to nebulise lidocaine any way I had a call from the registrar saying the worst thing that could happen after the surgery was a numathorax I think that's how you spell it . On the 24th may I had three valves inserted in left lung I felt a little more breathless as soon as I came round fully the following day,they did chest X ray and we're saying at that time the valves were not working Friday came and was discharged being told the valves hadn't worked but I was definatly struggling more to breathe. Saturday came and I was really short of breath and the pain in my chest and neck was terrible and all I could think was my god I'm in for a long weekend course Monday was a bank holiday. Got to Tuesday and I phoned the nurse co ordinator for the trials who told me the surgeon and registrar were both away but told me to ring the ward which I thought was a waste of time so instead I called my own gp who doesn't have a clue about copd and certainly didn't know what I was talking about when I was trying to tell him about the valves so just decided start the steroids and treat myself for a flare up. By the end of the day I was in so much pain thought get yourself to a&e just incase which I did, they checked my bloods for infection which I'm glad to say no infection but they didn't know what to do because they didn't know about these valves so I just said about carrying on with steroids and I would ring Cardiff . Rang Cardiff on Monday 6th June spoke to registrar who asked me to get to the Heath for 9am Tuesday which I did ,I was so hoping he was just going to say yes just such and such and it will all be ok and all I heard was he didn't know why I was reacting to the valves the way I was so 70 pounds taxi ride just to come home I guess you could say concerned. I am already looking into getting them removed I can't carry on like this and even worse when you have to do it on your own. Oh yes and forgot to say the valves have collapsed the top lobe of the lung so they are working but for whatever reason I obviously can't tolerate them .

  • So sorry to hear this Meglou. I was going to suggest you go to A&E but you've done that already. Do you have an oxymeter to measure your oxygen levels ? If you do and they are too low - under 89% - and you're still in pain then you need medical attention. Would painkillers help and have you had any prescribed for you ? Maybe if the pain eased you might find it easier to get your breathing under control. I really hope you get the help you need.

  • Thanks yeh my oxygen levels are ok thankfully although I have what they say is end stage emphasema I've never had to carry oxygen around with me . The only way I can describe this is its like trying to breathe through a straw I have codene for the pain which is like being stabbed in the chest every breathI take mind I say that even though Ive never been stabbed in my chest,im just getting so tired and I don't want to give in but I can only see one answer and that's to get them out and hope and pray I just go back to how I was .

  • Really sorry to hear that you are struggling and in such pain. Get straight back on to them at Cardiff today. They should have you back in to run tests and find out whats causing this pain and discomfort and monitor the progress of the trial not just leave you to suffer. I hope you get something sorted soon

  • Hi again, I hope you managed to get some rest. I agree with Joolz .....ring the Heath today or even 111 if you are struggling.

    Explain that you are alone ,in pain and breathless .

    Best of luck.

  • hello meglou, I'm so sorry about what you've been through and how you are now. It sounds as though you're having to tolerate awful symptoms, on your own, without medical support, and you must be really frightened. I really do hope you get something helpful back from the hospital today, but meanwhile do ask your GP for a home visit. You say you made the decision to go for the procedure, but that wasn't on your own! - all the medics etc were involved and they still have a responsibility of care.

    I've been referred to Bristol for this procedure and am just starting on tests etc to get to the first appointment with the consultant. I'm now doing some serious thinking.

    Do please let us know what happens and I hope you get some help today. Sue x

  • So sorry you having to go through this crap - totally unacceptable. I don't know what to advise, except for calling the HU helpline to see if they can help at all or at least point you in the right direction. I hope you get the problem sorted soon Meglou - hugs xx

  • Thank you all for your kind thoughts and suggestions, I've phoned the respiratory team here but just answer phone which isn't much use I've already left a message and not had a reply I will deal with it one way or another. No one told me I could get worse. But as they say upwards and onwards.

  • Hi Meglou, I had 9 valves in left lung ,July 2014 took a while before they worked correctly then a wonderful relief no pain what so ever . Did suffer a collapsed lung But after about 3 months really felt the benifit .regretably went in to my local hospital in Feb this year pain in left side stomach . Only in 4 days coming home on the Friday caught HAP hospital acquired phumonia . The. Sepsis. Then fluid on the lungs was in hospital for 7 weeks been home for -about 5 and reliant on B oxygen valves still in . Different tales off different consultants about catching the sepsis which nearly finished me off. Going to go back to Leeds where the valves were done and pay to see the consultant there to see what is really going on. But I have never had any pain with my 9 , after a broncos copy they thought one was loose but think it's ok again now do hope things improve for hyoid x

  • Good grief sounds like you have a tough time I'm already looking to get these valves out I think I have more concern about the fact that they don't know why I'm like I am I was really hoping when I went back to Cardiff last week the thoracic surgeon was going to say not to worry it was a normal thing that I was experiencing. I only wish I could have spoken to people who had already had these valves done as right now I am certainly regretting having it done.

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