Meike

Well I have been to see my consultant today, and she is referring me to a surgeon, to see if I am suitable for lung valves, she did not say how long I might have to wait but I suspect it will be quite a while before I get to see the consultant, my copd is quite wide spread so i might stand a chance of being able to have the valves but we will have to wait and see Will keep you all informed

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  • Hello meike :)

    I do hope that when you finally get to see your consultant that it's good news all round, and I wish you well and look forward to hearing of further developments :)

  • Thank you it's made me feel a little better today , I seem. To have more of a spring in my step, although I must confess i feel a little weepy, I i don't know why it's not like me But thank you once again for your kind words .

  • Good luck Meike - can I ask a question - I have been turned down for a transplant because by osteoporosis is too bad and also for LVRS because my lungs are damaged all over, not patchy as required for LVRS. Does this widespread damage not matter for the valves, am going to ask my consultant about it next time I see him. Libby x

  • Hello Libby, I am sorry I cannot answer that question because don't know how extensive the damage has to be. Although my consultant said it was wide spread And no one as ever said that before I do not know the criteria for this condition but I will try and find out and let you know, but it's a good idea for you to ask your consultant about the valves, also put into your Computer valves for copd and see what you get it's interesting reading

  • Hi Meike, thanks for that. I have read quite a bit about it, including the story of a man who only had fev of 15 and had been given months to live, but in all the stuff I've read it never says whether the damage was even all over or patchy. It's quite exciting to think at this late stage, when I've more or less given up, that there just might be something out there. I never get too excited though, I always expect the worst! Libby x

  • Yes I agree it's exciting to think that something is being done to make it easier for people suffering from this condition.

  • Good luck Meike. x

  • Best of luck Meike

  • Thank you all for your good wishes I will keep you all up to date x

  • How exciting for you,no wonder you have a spring in your step,so pleased for you.

    Do let us know how you get on in the future.

    Hugs, Wendells xxx

  • I too am waiting to see if I am suitable for this procedure, Good luck meike

    Carole x

  • Hi Carole, and good luck to you too Carole how long have you been waiting x

  • HI MEIKE.

    PLEASED TO HEAR THAT YOU ARE LOOKING INTO THE ONE WAY VALVES SERIOUSLY AS I HAVE MENTIONED BEFORE I HAD TWO PUT INTO MY LEFT LUNG 6 WEEKS AGO NOW WITH GREAT SUCCESS ALL BE IT THAT I JUST SPENT 2 DAYS IN HOSPITAL WITH BREATHING AND ASABATIONS THAT MADE ME SOUND LIKE A MATING WALRUS,LOL, IT SCARED THE NURSES SOMEWHAT,

    THE CRUX OF THE MATTER IS THAT THE SLIGHTEST HINT OF AN INFECTION NO MATTER HOW SMALL WILL SEND US INTO THE DEPTHS OF SUFFERING, OUR LUNGS AND OUR IMMUNE SYSTEMS HAVE BEEN SEVERELY DEPLETED DO NOT LOSE HOPE. CURING THE DREADED DECEASED LUNG IS A LONG WAY OF.. YET WE CAN HAVE A MASSIVE IMPROVEMENT TO OUR LIVES WITH THE VALVES AND GOOD RESPIRATORY ADVISE ADD THIS TO YOUR SURGEON AND YOUR GP AND SENSIBLE MANAGEMENT OF YOUR HEALTH AND YOU WILL GO ON FOR YEARS WITH THE MINIMAL OF DISCOMFORT, REALIZING OF COURSE THAT OUR LUNG MALFUNCTION WILL ALWAYS CAUSE US SOME DEGREE OF GRIEF, RATHER THAN LOOKING FOR THE CURE I THINK AIMING FOR THE BEST RELIEF AND LIFE VALUES THAT SUIT YOUR OWN PERSONAL CONDITION IS THE ONLY WAY TO GO,, AS WE ARE ALL SO DIFFERENT IN OUR MAKE UP THIS IS OF COURSE MADE UP OF PERSONAL CHOICES, THE VALVES ARE GREAT, JUST DONT FORGET THE ANTI BIOTICS AND THE BOOST OF PREDNIZONE AT THE FIRST SIGN OF BREATHLESSNESS AND HARDSHIP AND GET TO A HOSPITAL THAT YOU TRUST AS FAST AS YOU CAN,. GOOD LUCK GOD BLESS AND LAUGH HEAPS ITS GREAT FOR THE SOUL.

    ROBIN.

  • Hi robin, You don't know how much better you have made me feel I have not slept since the consultant said i might be a suitable case for the valves, I am so worried about making the right decision , I am so very scared of having to undergo any type of surgery this is what this dreadful condition has done to me , I know my fears are unfounded but it scares the hell out of me, you sound so positive and I am so glad they have worked for you I don't want to build my hopes up too much in case I am not suitable for this procedure , I just hope that I am not waiting too long to see the consultant but I have a feeling it will be a while. Did you have to wait a long time. X

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