Hope

[meike]

Well I received a letter today for an appointment at st James hospital for assessment for valves putting into my lungs, I have to be there at 9.30 and it says it may take up to 3/4hours for the tests and then I suppose I will have to wait for the consultant to write and let me know if I am suitable, I am nervous and must admit. Afraid it's not like me to be either of things, I normally take most things in my stride, I shall have a really good talk to myself and try not to be so silly after all at the end of the day it will be a simple yes or no I will let you know the outcome

[kimmy59]

Best of luck to you, will keep everything crossed for you I'm sure you'll be fine.

Kim xxx

[johnwr]

Hey meike,

WOW!!!!

Last week, I was at St James for a seminar about Modern Treatments to manage Emphysema. I wrote a blog about that over the weekend. If you want to see that, the link is:

blf.healthunlocked.com/blog...

I met the guys on the surgical team who do this operation here, a wonderful, caring, and very experienced bunch of top professionals. I would have every confidence in them.

I had this operation done a little over a year ago (3 valves fitted) at Cardiff. I can only describe my improvement as tremendous. Really. My lung performance has doubled. I did an earlier blog about the operation from the patients point of view back in November. Your can read it at:

blf.healthunlocked.com/blog...

With a follow up at:

blf.healthunlocked.com/blog...

If you have time read them. I wrote these to try to give people like yourself confidence going into this procedure. Remember, I experienced no pain, very few patients do. There is no cutting, so no wound to heal up. All there is to fear here is the unknown, but my experience is that you will come out of this at the other end wondering what all the fuss was about.

Go for it, meike. It's definitely worth it.

Breathe easy, and r e l a x.

johnwr

[meike in reply to johnwr]

Thank you johnwr for your inspiring blogs they give me the confidence I need to to think positive about this Operation, even thinking about it at the moment makes me sob, I keep asking myself where my confidence has gone but I will try harder to keep calm and carry on as they say there is so much I would like to ask you I will keeping reading your blogs and getting confidence from them

[johnwr in reply to meike]

meike, if you have questions, ask. If I have the answers I will be happy to tell you, or at least try to find out. This is my way of saying thanks for the good fortune I've had.

I have met the team at St James, and seen them operate. They are world class. You're in good hands there. Be confident.

Breathe easy, meike

johnwr

[meike in reply to johnwr]

Hi johnwr it's a silly question I know. But will I be aware of what they are doing because I would prefer not to be And I know i will not be put to sleep so how do they manage to keep people calm and do you know what the criteria is for this operation , if I am lucky enough to be able to have it thank you for your patience

[johnwr in reply to meike]

Hey meike,

The only silly question is the one yo should have asked but didn't. This is serious, as it affects your confidence. If you are just having evaluation, perhaps you will not even get to theatre. The initial stages are done by interpretation of x-rays, CT scans, lung function test, cultures of sputum, etc. You may or may not be present for this part. After that, if the consultant thinks that you can successfully benefit from the procedure, then you would get invited for a theatre session which involves a final evaluation using a bronchiscope, with a camera for visual examination, and the 'Chartis' diagnostic system, for a final decision. I believe that the surgeons prefer patients to be under a light general anesthetic in combination with a sedative for extra relaxation and local acting dilators for the upper airway. If you have complicating issues due to another condition, eg cardiac, then they may consider local anesthetic with a sedative, but you would be floating mentally and not very aware. If you are really concerned about this, discuss it with them at the first meeting. These people will take your concerns on board and make allowances for you.

Hope this helps,

johnwr

[meike in reply to johnwr]

Hi my letter says pre-assessment and I could be there up to two or three hours, so do you think that means what u have said in your reply , and then I would have to go back to see if I was suitable

[johnwr in reply to meike]

That's probably the case, yes. Even though this is a minimum invasive technique, for the wrong patient there would be risks. That's why they are careful with the selection process.

For pre-assessment, it's doubtful that you would see the theatre. Interview and maybe some tests is all at this stage. Nothing to get excited about yet. As I said in one of my earlier answers R E L A X.

johnwr

[Hidden]

Hope it all go's well have seen lots of post and concencus is that thing genraly go well ad try not to worry

Thing that gets me is term thay use like sutable ... Like what thay saying am i sutable given my health or is it other ression

[elian]

meike, my fingers and my toes are crossed for you. I would provide a photo to prove it but I don't have any hands free to do one as all my fingers are crossed !! lol

Hope everything turns out A OK and look forward to hearing good news soon xx

[Lynne1955]

Everything crossed. The very best wishes going your way from me.

Lynne xx

[Hidden]

Excellent news hope all goes well and you get the big improvements.

[Hidden]

Every good wish Meike - it may be a bit of a trial waiting for the result but nice n easy does it every time as I'm sure you know.

Good luck,

Chris

[Hidden]

hope it all goes great for you.all the best

[Puffthemagicdragon]

I hope you get the go ahead. Good luck.

[Dasis]

I hope it all goes well. Good luck

[tony49]

ive had a look about valves but im getting a bit mixed up would i be wright in think if you get valves you would be no good to go on the transplant list i see the main man in 3 weeks for my next transplant assessment so will hav a chat with him then

all the best to you tho

[johnwr in reply to tony49]

Hi Tony,

At the moment, the nearest we have for a cure for most lung diseases is transplant. It is the best answer now, but only a small proportion of those suitable actually get there, because of shortage of donors, and tissue matching. So other treatments have to be looked at. One of these is Lung Volume Reduction using valves. Understand that this is not a cure for any of the diseases that affect us. Really all it does is change the parts of the lung that are working to bring more 'good' bits into play, and take out of use the more damaged parts. It gives us an opportunity to get fitter. We still suffer infection etc. Damage continues, though hopefully at a much reduced rate because we look after our lungs better after the procedure. The main benefit we get from the valves is extra time. We also get a better life for a while. But mostly its about time. In that time, maybe a cure will be found, or a good match found for transplant. it depends on the condition of the patient.

If you have valves fitted, it will not change the ability to have a transplant later. The only way it may affect your placement on the list is that you may get such good benefit that your priority status may be reduced. Nothing I have seen about the valves procedure suggests that a transplant operation later is prevented. If you are offered valves, take them. They may give you time for other beneficial things to happen.

Breathe easy

johnwr

[caroleoctober]

Scroll back up and try the link to Johnwr's page it is very informative. I am waiting to see a specialist to see if I am suitable for lung valves

Carole x

[Hidden]

Hi Meike, all the very best of luck for the tests and hope you get the result that you want.

[meike]

Hi Carroll, hope you get the support you need from your new doctors, ask your doctor if you can see a consultant, and then you can ask the consultant about these valves it was my consultants decision to send me to see the hospital to see if I may be suitable for this procedure.

[Hidden in reply to meike]

thank u for repling.i will ask my new gp .is there anything elz i should ask.also anything elz i can do to help myself.i ceased smoking xmas.i am moderate copd many thanks for any advice.take care

[Hidden in reply to meike]

hi im moderate copd.so can i still ask my new gp .no 4 get the asking.im telling him bout valves and lvrs.do u get considered at moderate copd.i wud have thought well ye b 4 it gets any worse but i dont no answer to that do u .take care and do what u always do i am.living my normal life

[peege]

All the best for you Meike, P

[tony49]

thank you for your post john i go to my local hospital on the 20th then newcastle on the 27th but i will have a chat with them about valves

but if it does what you say about being like Lung Volume Reduction then it will probibly be no good for me as i was told 5 years ago my lungs were to bad for the Lung Volume Reduction opp

[Hidden]

Dear Meike

I really hope your assessment for valve insertion goes well and it is successful. My husband saw the consultant and his team at St james for this procedure and they are very supportive, even allowing you time to think things over and do not rush you into a decision.

It is a daunting thought to undertake this as you feel you are taking a huge risk with your lungs that are already damaged but to have an improvement with this condition was one he felt he would take - and it has to be your decision, nobody elses. Our fears were also with the anesthetic and the risk of hospital acquired infection as my husband had to have full ventilation and was in ICU for 6 weeks in 2008, this was before he was diagnosed with COPD so this was a terrible time for us and we are so grateful he pulled through - but whilst on a ventilator he caught flu, pneumonia and other infections whilst in ICU.

Following all assessment tests he was admitted for a bronchoscopy and valve insertion but unfortunately he was found to be unsuitable. Despite all tests undertaken beforehand they do not know until the bronchoscopy whether it is possible to insert the valves. My only criticism was with the anesthetist who told my husband just before the procedure that he was taking a huge risk and would probably have to go into ICU as he may not be able to wake him. As you can imagine we were terribly scared. I was at home waiting and when he called in a panic I said don't take any risks with your life as we knew from 2008 what could happen. I then rushed down to the hospital as I needed to be there and all my fears of what happened in 2008 returned. He did go through with it and his recovery from the anesthetic was very good which gave us a great joy but we had the disapointment of non insertion of valves. I was very angry that the anesthetist said what he did, why can't these people explain things in a better way rather than 5 minutes before the op? It is standard procedure for you to go to a High Dependancy Unit afterwards for close observation and the nurses told us that it was a shame we were put through so much unnecessary anxiety.

So Meike what I would like to say to you is very best wishes for the valve insertion, take as long as you need to consider if it's what you want, ask about the anesthetic risks and aftercare and remember that it is not always successful for everyone. Good Luck

[meike in reply to Hidden]

Hi, thank you so much for your good wishes, as you say it is up to me at the end of the day I know that what ever decision I make if am offered this operation will be a well informed one, the problem is that my fear will cloud my judgment I think your husband was a very brave man to tell them to go ahead with the procedure after being told that they may not be able to wake him i know that if this was said to me I would not go through with it and I would take my chance with the quality of life I have left One of my daughters will be with me on Wednesday and I think she will be asking questions too I will let you know how I get along. And thank you once again for your thoughts I hope your husband is feeling good

[johnwr in reply to Hidden]

Hello manuka01,

Thank you for posting this. It shows the quiet courage that patients and their families who face surgery must have, and you and your husband have it in spades, obviously. Also, the resilience to carry on after expectations fall apart. What you say also shows that not everyone is suitable for the valve procedure. Unfortunately, a number of patients with emphysema who ordinarily would benefit from this have other conditions or diseases that mean that for these people there is nothing here for then to gain. Indeed for some, for example, those with bronchiectasis, to go ahead would greatly increase the risk of pneumonia.

I'm sorry it didn't work out this time for your husband.

You both have my utmost respect

johnwr

[Hidden]

Hi Meike and Johnwr

Thank you for your kind messages. Afterwards I was worried that it may have read as a horror story and put you off which I didn't intend it to do.

Despite my husbands condition we have a happy life and count our blessings, we have had to make adjustments to our lifestyle but me and my family love him and couldn't imagine life without him.

I'm quite new to this website but I read it and pass on useful information to my husband. Everyone is so kind and positive to each other.

I don't usually leave messages but i had a strong urge to send you my very best wishes.

Incidentally, my husband felt scared like you and after we had discussed the procedure with the consultant we asked for time to consider things. They understand this and I was also able to ask questions about the op, It was agreed that they would send us another appointment after 6 months to give us time to think about things, by which time my husband had the chance to consider everything. He discussed with his respiratory nurse and GP too. Nobody can make the decision for you but our respiratory nurse, who we have great respect for, said if it was her husband she would want him to have it.

I look forward to hearing how you get on, it's normal to feel nervous and scared but it sounds like you have a good support network with your family.

Johnwr is very knowledgeable and I'm sure he will be able to fill in some of the gaps you may have following your consultation.

Bye for now

[meike in reply to Hidden]

Hi. Manukao, first of all I would like to say how lovely to hear you and your husband Are so happy together. I can see that you love each other very much, and it's the love we have for each other that helps us through my husband passed away 15 years ago , but I know that if he was here now I i would have all is support, but I have two daughters who are my rock, and very good friends who I know will help me make the right decision, I am sad for you that your husband was not suitable for this operation, and I am prepared for the same result, and what will be will be If they say that I am suitable for this. Operation then that will be a bonus, if not its not the end of the world, has I have often said to my daughters you have to pick yourself up dust yourself off and start all over again, the information I have gained from you and Johnwr has been wonderful I thank you both for being so truthful I will keep going back and reading what you have both said, and gaining the strength I know I will need to be strong and make the right decision, I will keep you informed of my progress, thank you once again for taking the time to speak to me. I appreciate it more than I can say x

[KingoftheCocktails]

Hi Meike I hope your results are of a possitive nature for you.In the meantime have a tonic with my humourus blogs

Richard