British Lung Foundation
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Lung Valves

Hi everyone

A little update on my visit to the consultant. I was pleasantly surprised to have my appointment brought forward three weeks. Met with the consultant yesterday at Wythenshaw hospital very nice Dr he explained to me that if all the test went well it would be valves not coils fitted the reason being valves were more successful. Think it's going to take quite a few weeks he just asked me a series of questions checked my oxygen level had a little listen to my chest a further appointment was made for a spirometry and breathing test which is going to take 90 minutes ( sounds rather intense) plus a shuttle walk test also at some later stage scans to be done. The consultant was very honest and said that not all people are suitable which is why quite strict tests are run and that it's not without its risks as there have been deaths Ouch but 80% of opps have been successful I have also been asked to do a rehab course to make sure that I would be At my best. I didn't ask him to go into detail about the process or opp at this stage rather wait to see if I am given the go ahead first and to give me time to absorb each appointment as it comes around.

I found I was quite anxious about the whole thing family and friends are all so very supportive which is great but I am so nervous now it is becoming a reality if I am given the go ahead I shall deffinately go with it, but rather nervously which I am sure is normal. That given chance to a better future on the horizon.

Will post again after next appointment

Hope your all keeping well I am enjoying all your post and lovely chit chat as always.

Pauline

😉

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Hope all goes well for you. I should think being nervous is normal, but you have great courage. Many blessings for a good outcome xx

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Thankyou for the blessings hope the courage lasts out. X

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I can only imagine how difficult this must be for you, but you seem to be approaching it in a very organised way. I'm sure that anyone would be nervous, I know that I certainly would be. I hope that the journey isn't too stressful, and would like to wish you all the luck in the world for the best possible outcome

Take care.

Pam XXX

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Thank you Pam I am sure there are others looking at the process just hope I can at the end of it all tell them. Piece of cake !

Take Care X

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Woweee, that all sounds very encouraging!!! I wish you well for any future treatments !

May I ask you what were reasons for your referral for coils/valves ? How did they feel you maybe suitable ?

Best wishes

Pp

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Hi Polly

I was referred earlier this year to a respiratory clinic to be assessed for oxygen my lung function is at 20% I have been on oxygen now since April but the Dr asked me at the end of my assessment would I like him to refer me for valves still a long way off but the screening has started. X

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Thank you Pauline - your reply was interesting....and we are all so different aren't we?

My FEV1 is not too bad at 58% although I have already had to begin using ambulatory oxygen which is an enormous help...

Will see how things go and request a referral back to consultant next year maybe ?

All good wishes.

Polly

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Hi Pauline

My husband had all the tests for valves but he wasn't suitable as the damage was throughout the lungs rather than in the upper lobes.

The consultant has now suggested coils as they would be more appropriate but nothing will happen for a couple of months til the next appointment.

I wish you every success and let us know how you get on.

Corin

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Hi Corin

Yes my understanding is that valves not suitable for everyone I was originally wanting coils it seems the more I hear the more understanding we are all different what is right for one is not right for another hope your husband is suitable for the coils.

Wishing you all the best good luck

Pauline

X

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Very good news - hope you qualify for the op. Good luck and all best wishes Pauline x

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Thank You, think it's a lengthy wait and see but at least we are on the starting block. 😉

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Pauline,i believe you will be in very good hands with the folks in Wythenshaw,as they suggested you will need to build yourself up in preparation and be as fit as possible.I am sure they will make all all future tests as reassuring and informative as they can do.good luck to you on your journey.......xx skis

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Hi Skis

Think your absolutely right need all the reassurances I can get and at this stage feeling positive thanks for the encouragement.

😉 X

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Hi 👋Skis woshing encouragement & hand to go forward you be positive keep going wishing you best off all good things to come your way & strength to keep strong . Bernadette xx

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Thanks Bernadette, keep Well.

🙂 X

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Hope all goes well for you. Look forward to reading updates.

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Thankyou Nanny I shall keep on posting will let you know when I do my first cartwheel Ha Ha X

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Ef0lumps4

Hi Pauline, Glad to hear things are moving for you, am still trying to get a referral myself so have tried the trial route. It was interesting to hear that your specialist reckons valves rather than coils. Please keep us posted on any activity.

IKeith

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Hi Keith

Yes I was surprised valves rather than coils but think it may be valves are better suited to my needs he also said that once fitted valves could be removed I am guessing that coils maybe not. Good Luck with your refferal .

Pauline

X

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Good luck i realy hope things go well for you and you get the result you want x

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Thanks Corriena

Yes I do hope the end result is worth it I have lots of questions in that regard. Thank you for the welll wishes. X

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Ef0lumps4

Thanks for your info. I think there may be a point to valves if they can be removed against coils that maybe cannot. Coils could get fouled up with mucus, valves maybe can be replaced if they get messed up. Please keep us informed of your experiences. Take care and good luck with the treatment.

IKeith

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I was referred as a suitable candidate for valves to Liverpool Heart & Chest and initially indicated as ideal. I had completed full rehab course and a full set of recent tests but no scan. A high res CT scan then showed that I likely had colateral ventilation (holes due to tearing between the lobes in the lungs) so not then suitable for valves but consultant very helpful and willing to do a Chartis test. This would prove conclusively whether valve fitting was possible and also if OK they could fit valves at same time. I was 'bricking it' at the thought of tubes down my throat but staff/consultant/anaesthetist were fab and I was knocked out with a general and did not have any ill effects from that at all (other than a bit of chest pain from short term anaesthetic afterwards). Test confirmed surgeon and consultant opinion so valves not an option however I was then offered lung volume reduction surgery via keyhole to remove about 1/3 top of lung and has been a great success. All above done in 7 months so I consider myself extremely privileged and lucky and LH&C amazing institution and I had the red carpet treatment. My belief is that if one does not expect miracles you cannot be disheartened and these procedures are certainly not suitable for many. Wish you the very best of luck and love on your journey. xx

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Thank You So much for sharing your experience it's always good to get first hand information. Sounds like you were in good hands I am happy for you that the procedure they used turned out successful for you good to know the screening is very thorough so that the correct procedure can be taken forward hopefully if the valves are not suitable I shall be given another option. All the very best for the future to you I found your input comforting.

Pauline X

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Good luck with it all, I am up for the trails at Brompton and have been assessed with testing and prefusion scan, the fissures are looking good for Valves, 2 tiered trail so either or lvrs surgical or valves, I have AATD alpha one antityrpsin so lower lobes are involved, and after years of not being inclusive on trails we are now getting more and more approvals ..with success! Mostly I have noted on the valves, the surgical option I have researched works a lot better and last longer on upper lobes, lots to weigh in like yourself, the ultimate decider with me will be bronchoscopy as this is the only sure way they can tell if the lobes are leaking blood and so is referred to as Collateral Ventilation if you have this your most likely the candidate for the surgery, the Valves are only good on those without it, so my next part is Royal Brompton for a week in Spring, Summer next year should I decide to go through ..still procrastination ensues..:) I do well even though I have no blood supply to lower lobes but left is worse , I walk daily every day and while i feel I need something I feel we all need to be very sure of what we enter.. I strongly suspect I will go through though 11 yrs of this is now enough for me and, so hopefully I can learn from you.. Its great to hear of those going through though .. so we learn all the time. I think I will most likely ask for the ga on bronchoscopy too!! I hear this can be fairly horrific! .. good luck keep us posted and thanks to Angora for the input x

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Hi Flo

Thanks so much for your reply you are deffinately well informed And understand your situation well I am not as familiar with all the technical terms as you are but if you are thinking of going through the same procedure I wish you well. I hope all goes well for you please keep us informed it is good to hear how others are coping with similar or the same conditions we can all learn from each other. Wishing you well Pauline X

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Hi Pauline,

Although I am on the Transplant list for a Double LT. Last Monday at my Consultant Appointment, She suggested that I may be able to go through this channel also!, You See, I've been on the list for 15 Months and I am keeping fit , doing all the right things, except....My Age, I'm nearly 66 and to be truthful I do feel a lot younger, my problem is "Matching" I have Bad Antibodies and with 95%, trying to get a Match is very Rare, ( although it does happen). What you say in your Message is what My Consultant told me with a Lung Reduction being another possibility, although at the beginning of my process this wasn't offered...I have all my Tests, starting next week ,going into October/November, the Appointments are a few weeks apart as there are going to be a lot....The BIG Issue here is : If I Pass all Tests for this Procedure, Then I have to come OFF the Transplant List, there's No Guarantees either Way.. I am quite a bit Confused as what to do. I wish you well Pauline and I will follow your progress. You can inbox me if you want: Carolina Burrows. Hacienda XXX

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Hi Carolina

I certainly feel for you and your new decision it can't have been an easy decision going on the transplant List and now another option I don't think any of these decisions come easy at least not for me they don't I am of the same age as you and such a baby these days but if your consultant thinks you can improve your quality of life now maybe it is worth a look at. The screening process is supposed to be very strict as I am sure you know so they wouldn't offer valves unless they thought it was going to be right for you and give you some improved quality of life. There are risks with both procedures but if we don't take those risks we shall never know. I wish you luck with your decision.

I was at the hospital yesterday for my CT Scan 7:30 pm ? 😚 back next week for more tests and to see the consultant and hopefully some good news.

Wishing you well Pauline X

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Age 66 going to transplant, I would not hesitate in the other procedures! Success rates decline in tx the older we get , this is fact..regardless of how well you are, I would certainly look to the valves . I am getting older and honestly I would rather have a ltx before the age of 60 than after.. there is a great deal of info out there read up , check everything and ask tonnes of questions ..before making any decision this is our lives we are talking about not a purchase at a department store!! LTX is known to be a better option the younger we are mostly due to the fact it is the most major operation out there to date with the lowest survival ratio of any of them...work through the data and ask the questions, being fit helps without a doubt on any procedure but this is major surgery 8 to 12 hours...and as yet 5 yrs survival is outlined those that make it after that are lucky.. trading one set of probs for another is how its usually put to people so for me this was why I thought of time buying and looking to valves ..

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Thank You Flo, I will Take on what you say, I also realise that After Trx recovery could be an issue for me, regardless of my keeping fit, I have known a few People who have had their Transplants older than me and doing well. So Fingers Crossed the right thing happens, It's a Game of Chance sometimes. I will carry on keeping positive. XXX

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