CELEBTrials RBH

[Alfiebax2]

Hi everyone im new .Had severe COPD for 14 years .Have been to The Royal Brompton Hospital on two occasions.i have had ct scans echocardiagrams twice pulmonary rehab twice in 3 years uve also had a VQ scan im now going into the Brompton for CELEB trials to see which procedure would benefit me LVRS or the valves .i go in on 6/3/18 i would appreciate any feedback from others who have had either procedure .Thanks

[jimmyg23]

That's very good news and hope you get the on the right one and everything goes well for you please keep us informed how you get on

[Alfiebax2 in reply to jimmyg23]

I will keep everyone posted onhow i get on .

[Stumpy55]

Hello Alfiebax2, and welcome to our forum, nice to meet you. I am a copd sufferer too, I have very severe copd so I know about the different medical problems that go with it. However, I haven't heard of the Celeb Trials before. ✋️😊

[Alfiebax2 in reply to Stumpy55]

You can google it but you must put nhs after it otherwise you get im a celebrity get me out of here .lol will keep all informed .i hasten to add im 70 years old and i also have ambulatory oxygen .

[Stumpy55 in reply to Alfiebax2]

I wish you good luck and can you let us know how you get on please Alfiebax2, ? Take care ✋️😊

[Alfiebax2 in reply to Stumpy55]

I most certainly will .its lovely to find this site with like minded people 😁

[Stumpy55 in reply to Alfiebax2]

That's what I said to my husband when I joined just before last Christmas. I suffer with panic attacks when I struggle with my breathing and it makes things a whole lot worse. But talking with people on this site has been a real comfort to me, plus I have learnt so much from them. I wish you well, ✋️😊

[Alfiebax2 in reply to Stumpy55]

I agree that panic attacks make your breathing worse .i wish you well and i will keep all you lovely people updated on my journey .xx

[Stumpy55 in reply to Alfiebax2]

I try not to panic Alfiebax2, but it's not easy is it, but I do try. I wish you well, ✋️😊

[Alfiebax2 in reply to Stumpy55]

Keep fighting hun .😘😘😘

[Stumpy55 in reply to Alfiebax2]

I will, and you ✋️😊

[jmsutt73 in reply to Alfiebax2]

Newbie here, too! It is very encouraging to learn that you are 70 yrs., that you have had this illness for 14 yrs., and you look absolutely fantastic! I've two very minute spots of emphysema. Going Tuesday for echocardiogram and another lung function test. Best wishes to you.

[Alfiebax2 in reply to jmsutt73]

Thank you for your kind words . i will never let my condition rule me and i refuse to give in ..Good luck with your procedures .x

[jmsutt73 in reply to Alfiebax2]

Thank you for good wishes..

[Stumpy55 in reply to jmsutt73]

Hello jmsutt73, nice to meet you and welcome to our forum. I suffer with Emphaseama. I wish you good luck on Tuesday. Take care and please let us know how you get on? ✋️😊

[jmsutt73 in reply to Stumpy55]

Thank you...hoping to learn what is causing oxygen drops. Will post when I learn something. Again, thank you.

[Caspiana]

Hello Alfiebax2 .

Welcome to the forum. So lovely to have you. xx 🙋🐕

[Alfiebax2 in reply to Caspiana]

Thank you 😊

[insanemoose]

Hello Alfiebax2 welcome to the forum. I’m very interested on how things go. Good luck. Tracy

[Alfiebax2 in reply to insanemoose]

Thank you Tracy .i will let everyone know how it goes .🤗

[shadow4me]

Wow good on you and must say you look wonderful but how did you get to go to Royal Bromptom and other test I'm severe and I have had to fight to get to see a pulomonery doctor still waiting for appointment all I have ever seen is the general nurse at surgery with a yearly review I have suffered a lot the last year and ended up in AE new year eve with pneumonia it took the AE doctor two in fact to write to GP about seeing a specialist before they agreed I'm on the mend now I also would like to find out about procedures that we can be offered .I wish you all the luck and hope they will give you a new lease of life please keep us informed xx

[Alfiebax2 in reply to shadow4me]

I saw an article in the Daily Mail about a procedure on your lungs , i went to my Dr and asked to be referred back to my consultant they in turn wrote to the Royal Brompton Hospital to see if they could help me .ive had lots of procedures and you do have to push for treatment .Ask your Dr for a consultant referral at your local hospital they cant refuse you .Good luck

[1buzzytruk in reply to shadow4me]

Hi.....you are not on your own with poor care from your gp.. I have only once seen a hospital consultant and that was in May 2010, and discharged at the same time ....., same time as I had a chest xray. My last spirometry was well over two years ago.

A few months ago by chance I met up with a wonderful community physio....I have now had a chest xray , am booked in for next local rehab class, and my GP.. has has two polite but firm letters from her , so I am hoping things are going to improve ....My last spyro was 46 fev1 ,Iknow I have deteriorated but not how far. Best wishes for your trip to see a consultant.

Jo.

[Stumpy55 in reply to 1buzzytruk]

Hi 1buzzytruk, can't believe how you've been treated by the NHS And your G.P, that's really poor. But hopefully things will start looking up for you, fingers crossed. Let us know how you get on ✋️😊

[1buzzytruk in reply to Stumpy55]

Hi .thanks for your good wishes, we have a gp practice that looks great on top but underneath there is little substance.... I have begged the resp nurse for a rehab referral she has always refused saying I needed various assessments , none offered . I have had numerous chest infections from the end of May till December , not once was a sputum test taken ......just more antib's and steroids given ,even then not seen by Gp. I am so grateful for this physio ....who will be keeping an eye on me ,that in its self has made me feel a lot better . .....so onward and upward .Spring is well on the way .

Jo. .😊

[Alfiebax2 in reply to 1buzzytruk]

Im so sorry you havent been able to be put forward for various treatments .I have had 2 CT scans , an angiogram ,2 echocardiagrams various lung function tests and the last one was a VQ scan where i was radioactive for this . The last one proved i needed an op thats why im having the trial to see which one . i also have oxygen. I cant understand why your GP is not on your case , have you thought about changingyour GP . i have had 5 exacerbations in the last year and was hospitalised with respiratory failure last August .Im glad you now have someone in your corner lets hope it leads to better treatment .Barbara xx

[1buzzytruk in reply to Alfiebax2]

Hello there ,. I live in the countryside, I have looked around for another gp. but it's not that simple. With our surgery if you have any infection you have to speak with one nurse ,,chest conditions with another nurse . Once Past the receptionist you have to wait for a return phone call . If you have a problem that's not under the nurses remit then the doctor will phone you back ....Your problems / condition is discussed over the phone and any medications prescribed. Only if the Gp thinks you are on deaths door will you get an apt for that day .....Although when my husband needed urgent treatment the Gp did the job well.

They appear to be following government guide lines,as well as saving every penny they can. So you see we in this part of England are in a bit of a pickle...........My husband says I should start beating he drum ,,now I have my physio I dare say I will.

Jo. 😊

[Hacienda in reply to Alfiebax2]

Hi Alfiebax 2,

Firstly you look great, I also look after myself, never go out without my Lippy...Anyway, I too have had the same Treatments as you and 4 day assessment for Lung Transplant, 19 months on the list. I'm not getting any younger (66 Just ). My Consultant offered me the possibility of Lung Reduction with valves, (not Coils) If I meet the criteria. Previous Tests at the early Diagnosis proved Negative for this type of Treatment. Since then I have had 4 sessions of P R, which had improved my Lung function. I have had my CT Scan 2 weeks ago, Not heard any results and My next appointment is in April with her. I am at my Transplant Hospital Tomorrow at QE Birmingham., for my 3 monthly "Tracking" assessment. I have not told them about the Consultant Tests, City Hospital Nottingham. I aim to stay on the List as long as Possible. I know I will have to Come off it if the tests prove I can have Lung Reduction, My Consultant said, That if the Valves work then they may only last 2 years, BUT, I can, if capable, of having a further Valve implanted ? She said I can't do this with Transplant. makes sense. So, I'm in Limbo at present... All the Best Sweetie for your forthcoming Procedure, Please keep us updated. Love. Carolina xxxx

[Alfiebax2 in reply to Hacienda]

Thank you for the compliment x. Had an email today they have brought my appointment forward to the 8 th feb. This is to see what op im having LRVS ir valves but as im led to believe they dont do valves if you have holes in your lung ....which i do .Good luck with your procedures i will keep you all posted on my journey .x barbara

[Hacienda in reply to Alfiebax2]

Thank You Barbara, Best of luck xxxx

[Alfiebax2 in reply to Hacienda]

Had a phone call today and they have moved my trial forward to 8 th Feb whoohoo x

[Katinka46]

Welcome to the forum. Lovely photo. I hope all gets well with you and the trial. I have recently been to RBH three times. Very impressed. They are brilliant at puzzling away at difficult problems.

[Rich1957]

Hi I’m also on this trial as well but at Glenfield hospital have you had a Chartris assessment yet ? ) to find out if you are suitable for Valves) I’m due to go to see the surgeon on February 2nd to find out when my operation will be .

I’ve been on a number of other trials and have been treated so well I felt this was an unbelievable opportunity I could not miss . Through the trials I have found out so much more information that I understand and have been able to have questions answered in depth in a way that I understand . Hope you’ve been the same

[Alfiebax2 in reply to Rich1957]

No i havent had that Chatris yet ,what does it entail ? Im going in on 6 th march to see whether i can have the valves or the more invasive LVRS op .

[Rich1957 in reply to Alfiebax2]

I’m sue a more medical minded person will fill you in more , but this is how I understand it

You have a special bronchoscope which they use to blow up what I think looks like a minute rugby ball in your lungs under sedation 🙈then they inflate that area to see if air escapes to another part of your lung ( this is called collateral ventilation if it does ) if air does escape it means you have holes in your lungs you shouldn’t have and would not be suitable for the valves . The whole procedure you will know nothing about and you have nothing to worry about ( I did wake up once , I didn’t feel a thing though ) .

[Alfiebax2 in reply to Rich1957]

Ive had a bronchoscope before .My right lung has a large hole in it abd its undecided if they could do that side but my left lung has severe lobular emphysema and this is the one they want to find out if im suitable for the valves although my consultant doesnt think so he thinks i should have LVRS so we shall see after the trials . x

[Rich1957 in reply to Alfiebax2]

I went in on October 30th to have a operation but I didn’t know what operation as my Chartris came back inconclusive so it was decided to do another Chartris prior to my operation. But disaster happened and I fell ill in hospital during the Sunday night before my operation on the Monday morning with either food poisoning or some form of sickness bug so my operation got cancelled. I was offered the operation 10 days later but decided to wait until the new year . So I go back on February 5th hopefully to arrange another Chartris assessment as I would rather know what operation I’m having lol x

[Alfiebax2 in reply to Rich1957]

Yes me too its obvious after what you told me thats the procedure ( chatris) that im having in March . good luck with yours x

[Rich1957 in reply to Alfiebax2]

Thanks and you x

[Pam1952]

Hello, and a very warm welcome to the group. I hope that everything goes well for you. Please let us know how you're getting on. XXX

[Alfiebax2 in reply to Pam1952]

Hi i most certainly will let everyone know how it goes .x

[Croydonia]

Hi, I was enrolled into the celeb trial at rbh, but was not suitable for the valves. However, I was put forward for LVRS, and had the operation at the end of last year. It was a rough road, but signed off in September, and was doing very well until I got a cold and chest infection in December followed by a virus. Since then I’ve found it hard to get back on my feet. However, if you are offered the operation, I would say grab the chance, in spite of the risks. Good Luck!

[Alfiebax2 in reply to Croydonia]

Im hoping for LVRS as my consultant doesnt think im suitable for valves hence the trials . Glad to hear of someone who has had the op .I hope you pick up soon and get back to good health ready for the summer .x

[Dedalus]

Lovely photo. Hello and welcome. Good luck for CELEB trials.

[Alfiebax2 in reply to Dedalus]

Thank you its so good to be on a forum where we all have similar problems so we can advise each other .x

[Izb1]

Hi and welcome Alfiebax2, I am fairly new to this site and just love it, you learn so much from each other and the people are really friendly. Good luck with your trials, hope everything goes well for you. Irene x

[Alfiebax2 in reply to Izb1]

Thank you Irene .x Barbara x

[Nicosn]

Hello and welcome to the group...hope it all goes well....let us know 😊x

[Alfiebax2 in reply to Nicosn]

Will do and thank you x

[poppylachat]

Hi and welcome I only joined last year everyone is so friendly and helpful good luck for your appointment in March

[Alfiebax2 in reply to poppylachat]

Thank you x

[Perce]

I have had LVRS and are very pleased I had it done, search my posts and you will find a load of info I wrote at the time. Good luck with whatever they decide is best.

[Alfiebax2 in reply to Perce]

Thank you ,have read your posts, which although were a bit scary about the op and recovery , was good news in the end and positivity regarding the procedure .

[flo1]

Hi Alifiebax2, I run a support group on facebook if your on there and a few of us including myself have been assessed for the CELEB trial, a couple had their procedures done one was surgical LVRS and the other in our group was Valves. I was assessed after tests and perfusion scan done in 2016 a long time back now but my fev and dlco are stable and they class me a mismatch due to the gas transfer being lower than fev, I was in dire land on being diagnosed in 2007 aged 46 with alpha one antitrypsin deficiency a genetic form of emphysema, . I put back the going forward as I hear both good and not so good reports on both procedures and alpha's were at one time deemed not good candidates for either due to the type of damage we encur (basal , bottom of the lung lobes) its totally unique to alpha patients. However we progress forward, and I am due to go up to them in April for Valves as I have no Collateral Ventilation according to the perfusion the bronchoscopy will be required to rule this out totally. I have outlined I do not want or wish to have 'surgical route' although a lovely Alpha on our group has done this and is doing quite well although neither of them are running yet ... who knows? I am also informed that unless I am dropping and found not stable on my next breathing test to put me on hold in this as disturbing the beast lower left lobe could bring me problems by way of any procedure other than a double lung transplant (I aim to avoid that ) but we do decline naturally as we age, so I cannot guarantee to hold forever, however walking daily and strict regime of mine for a decade has worked this far . My fev was around 37.5 mark the gas is awful low 25% (dlco) however exercise daily got me back from a end stage diagnosis 10 yrs ago with 22% fev and 25% (dlco) I was effectively given 2 yrs left to live I can tell everyone here that walking daily has not only increased me but staved off a double lung transplant at a very young age.. I live on the coast so lucky I breathe clean , fresh air as well I moved from a City and made common sense changes back on being given the 2 yr to live speech and quit smoking with immediate effect!. My reluctance to do anything is solely based on trial reports at the moment ..I do know that upper lobes work best on both procedures so I may stay in abeyance or go forward in April ...dependent on the next result if I they find me stable I will leave this for another year at least ..I wish you the very best it does work and many are extremely happy with results , not sure on the duration of the procedures some are 2 years in and happy others 5 yrs on and happy its a individual thing as is everything and we all respond very differently . Message me if you would like to join our group happy to add you we do lots of updates and stuff on everything in the now with lungs so informative is what we aim to be.

[Rich1957 in reply to flo1]

How do I join your support group on Facebook ?

[Alfiebax2]

Thank you for your very informative message .i go in next thursday (8th)for the CELEB trials to determine what op im to have .i have a hole in my right lung ,quite sizeable so that is a no no but i have lobular emphysema in the left one .all at the top .My consultant at the Brompton seems to think LVRS is for me but these trials will determine it .i would like to join your support group on FB.thank you .Barbara xxx

[flo1]

Rich1957 pm me and I can get your details privately name etc and add you on with us .

[flo1]

Please pm me Alfiebax2 I can add you on the group, I need your name etc..sorry missed your reply I am not around on hulocked a great deal...