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Brompton hospital

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Brompton hospital screening for trial unsuccessful due to lung function being 79 before inhaler and 89 after inhaler...fev1 that is...6 minute walk sats 99 to start 91 finish. She is going to write ti my consultant to see if I need oxygen she said not dangerous...I am praying I dont and never will.

She said some people progress fast some slow. She also said I could remain physically the way I am now for rest of my life, with unnoticeable progression....and I am not going to challenge that..need to see what 10 th official lung function say. Wont know until the 30 March ....so wait and see I think.

Although disappointed a positive outcome as far as lungs concerned

68 Replies
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Hold onto the positives Emily. Wishing you well. Xxxx

Hidden
Hidden
in reply to sassy59

I am thank you...they were lovely to be honest...was quite interested in the trial.

Actually Good Results Emily, Pleased for you Hun, Just got home after not going out for 6 days, So Your Post made me Happy. Remember I am only FEV1 17 % I know my Life is limited, But we have to fight to stay here, Always be Positive Emily. Lots of Love, XXX C.

Hidden
Hidden
in reply to Hacienda

I find hope in all you say to me and it's not over for you

Hacienda
Hacienda
in reply to Hidden

No Hun, It's Not, I have to stay Positive and give it all I have, I have a Wedding Blessing to organise here in October, I want to see My Granddaughter in her Wedding Dress. You Stay Strong my Love. Love n Hugs. XXX C.

Hidden
Hidden
in reply to Hacienda

You too xx

Well done for putting yourself forward for the trail. Was your Fev1 to high for you to be considered to take part in the trail?

Did the person doing your tests say what causes people to progress fast/ slow. Good news that you could stay how you are now. Have you had 10 LFT’s since diagnosis?

Hidden
Hidden
in reply to Tia4209

Sorry no the 10th feb is my lft with my consultant it's my 4th. No she didnt say what caused people to progress fast slow she said it just is. And yes my lung function was too good to be considered. But sats dropped so she is recommending I have blood gas exchange via blood test to see how I go. Had response from a researcher who is in all intense and purpose fighting our corner

Tia4209
Tia4209
in reply to Hidden

Mostly positive news. Hope the LFT on the 10th goes well and you don’t need oxygen. xx

Hidden
Hidden
in reply to Tia4209

So do I if honest

Tia4209
Tia4209
in reply to Hidden

Fingers crossed for you x

My oxygen drops to 89 on rehab/walking tests and no one has mentioned oxygen to me. I’m ok on air 95/96 mostly. I’ll be interested if you do get ambulatory oxygen.

Emily,with lung function results like that and even with a desaturation to 91% at the end of the 6 min walk test if you need to be prescribed ambulatory oxygen i will not only eat my own hat but also readily consume everybody's on the dodgy lung sites hats as well. :) double lol

Looking good for you

Best wishes Ski's and Scruffy x

p.s don't forget to go out and enjoy life in between your research :)

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Hidden
in reply to skischool

I am thank you it's the most positive I have felt

Don-1931
Don-1931
in reply to Hidden

Thank goodness for that! 😁 I was beginning to think that you were looking forward to having dodgy lungs. 😉x

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Hidden
in reply to Don-1931

Most definitely not at all

Hi Emily,

I know you’ll be disappointed at not being accepted for the trial, but in this case it’s encouraging & I hope you agree.

The most important thing to focus on is your excellent lung function & the positive responses you obviously received to your questions. Try & leave it at that & don’t over analyse. 💕🌸

Hidden
Hidden
in reply to powderpuff

Not over analysing anything I am beyond happy with function test..its a plus I wasnt successful upon reflection. Happy with what she said to me to be honest

powderpuff
powderpuff
in reply to Hidden

Excellent!

Hi dear Emily your numbers are quite good..so please don't stress about them.❤🙂

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Hidden
in reply to Livefor

Not stressing I am pleased they have remained the same from last May. And happy with what she said to me today

Sounds good. All very positive. I can understand a tad bit of disappointment about the trial but the news is great.

Kate x

Emily61

So sorry they didn't accept you for trial, still the remarks by the hospital sound good and positive for the longer term. I know from bitter experience that it can be be shattering to hear they won't do anything for. Don't forget to try the Preston hospital they are part of the same trial, they may have a different criteria for testing. That's going to be my main task when I get back in the UK.

Meanwhile we can try to support each other and keep posting the outcomes.

IKeith

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Hidden
in reply to lKeith

Good luck and let me know the outcome

Michaela1965
Michaela1965
in reply to lKeith

Hi I’m wondering what the trial is? And how can I get information about it? What conditions do you need to have? Thanks for you help as I would be interested in the trial

Michaela

Hidden
Hidden
in reply to Michaela1965

Airflow 3 phone them if you are interested. I have bronchial asthma and emphysema. Just google phone number for royal brompton hospital research department. And good luck

Michaela1965
Michaela1965
in reply to Hidden

Thanks Emily I really appreciate that. I have severe bronchiectasis and colonised pseudomonas and another also asthmatic ... ana would be interested in any trials offered and interesting that they could tell you the future of your lungs.

Thanks again Emily and take care xx

Hidden
Hidden
in reply to Michaela1965

She didnt tell me future of my lungs she did lung function test and then talked about how some people progress fast slow and snails pace and she said I could not will

Hi Emily, if I had a lung function like yours I would be very pleased. Make the most of it and try to enjoy your life. Best wishes as always xx

Hidden
Hidden
in reply to CDPO16

I am pleased it was just I did not realise lung function would be an issue as aim of treatment is to reduce flare ups thus preserving lung function and also improving breathing. 89% lung function beyond happy with that, was looking at ways of improving breathing and preserving my lung function. Hope that makes sense

I understand your disappointment Emily, but am I wrong, or has the hospital not accepted you because your lung function is TOO GOOD?! It's always nice to get on a trial, well I think it would be, Ive never managed so far.

But to fail to do so because your lungs show significant reversibility must be encouraging surely. Id kill to have the reversibility I used to have , i.e. to have a positive response to my bronchodilator medication - I have none now, like many here, though Im still doing ok. And your LFTs are really good. Id kill for them as well!

So to put it the other way round, from what you say, it sounds like they would have accepted you if your lungs had been worse than they actually are. Sorry if Im repeating what someone else has said above.

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Hidden
in reply to O2Trees

Oh I am more than happy my lung function is good I guess I am not making myself clear I was disappointed in the fact that I could not have a ct scan, or the rest of the screening. The plus was I was able to do 6 minute walk that showed my sats do drop, my dr said otherwise.. I didnt think actually that lung function made a difference to the trial that's was my disappointed. Not I wish my lungs were worse, she said the aim of the treatment was to reduce flare ups which in turn preserves lung function and improves breathing. That to me was a major ++. Hope that explains the reason I was a bit disappointed,

I appreciated everything she said today and pray what she said was true.

Tia4209
Tia4209
in reply to Hidden

Totally understand , but let’s hope it is a successful trail and it helps a lot or people in the end x

Hidden
Hidden
in reply to Tia4209

I hope the outcome does help everyone who needs it

O2Trees
O2Trees
in reply to Hidden

I understand Emily. But Im pleased anyway that you appear to be in such good nick!

It is true that a CT scan would show the nature/extent of damage in your lungs but the degree of radiation in a CT scan, significantly more than with an xray, makes some consultants reluctant to perform them when their patients are fairly well. I get that not knowing the details can make some people anxious but if I were you I would try to concentrate on the good stuff - the excellent results of your fev1.

Take care :)

What is the name of the trial Emily? The criteria would be the same at whatever hospital was doing the trial as it is not set by the hospital and if the criteria varied it would skew the outcome figures.

Good news Emily - I am pleased for you.

Cx

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Hidden
in reply to cofdrop-UK

Airflow 3 name of trial think it was livefor who put it on forum or redsox not sure who it was. If interested phone them

cofdrop-UK
cofdrop-UK
in reply to Hidden

Thank you for the name of the trial Emily. I have just looked it up and it looks interesting. I don’t have copd but bronchiectasis but am interested to see what research is ongoing for all our friends here with various lung conditions.

Cx

Sorry to hear you can’t do the trial. I know you are keen to make a difference for COPD patients. The aim to reduce flareups is appealing since they seem to be the root cause of progression. Your LFT is good, you must be doing all the right things.

Hidden
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in reply to stamford1234

Thank.you

Excellent results Emily and what a relief and surprise for you👍 Don’t know why they even mentioned about oxygen, have I missed something , Hope you can stop worrying now. Just keep moving as much as you can and try to avoid folk with colds. Take care Cx

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Hidden
in reply to Chriskho

Having emphysema the fev1 is only part of the story my drop in Sats is an indicator oxygen is reduced in my body...my fev1 are good no getting away from that my dlco isnt that good. But will know when I do test at consultant 10th, as brompton didnt test that, wont get results until the 30th March. Praying I dont need it as I have to work. They are have to say an excellent hospital. And ps thank you

I think you should be pleased you did not get invited for the trial.. YOUR FEV1 Stats seem fine and as for you 02 stats. not exactly a disaster. mine go down under 80 at times when I sleep, I am a meter and I can print results/ Even though my stat's wander from 94 to 80 and even less, despite the events I average over 90 so thus far no nasty oxigen needed... Good luck and try not to worry..

Hidden
Hidden
in reply to Ern007

I am hoping I dont need it as I wont be able to continue to work and got bills to pay...I am living off my blue inhaler as very very breathless, and yes I know it's the disease. They didnt do my dlco, but have my consultant review so guess they will do it then . I think the fev1 is as good as on the day...

Would have like the opportunity to try something that has potential to reduce flares

I have minimal air trapping

As you know the fev1 is only part of the story with emphysema

Ern007
Ern007
in reply to Hidden

You are relying on just a Blue (Ventolin) spray for "emphysema" ? - Most would have green " Ipratropium bromide" (Atrovent) and probably Fostair or similar. which is (a combination of a long-acting beta-agonist bronchodilator and an inhaled steroid),,The Green spray is also taken 2-4 times a day, out of breath or not...The idea of an inhaled steroid is to try and stop the need for oral steroids, which are needed sometimes but side effects are can't sleep, nangy and long term bone thinning.....My point being your condition should if possible be controlled by inhalers. If your condition improves, then also no need for Oxigen. Have a chat with your GP... A blue spray alone for immediate relief only is not much use = Prevention is always the best........The green and long acting inhalers are for reducing flares.. Good luck but have a chat with GP..

skischool
skischool
in reply to Ern007

Many people with emphysema that does not also have an underlying inflammatory nature do not benefit from inhalers with a steroid element within them,in fact it can be detrimental to their condition and also would not aid in preventing flare ups.the myth that all steroids are good for all lung conditions needs to be dispelled.a short course of oral steroids alongside antibiotics during an exacerbation are quite sufficient to aid recovery. :)

Ern007
Ern007
in reply to skischool

Interesting: ,,,,,My COPD Nurse insisted I take inhaled steroids and I have oral as a rescue medicine. That aside Emily61 complains of being breathless despite Salbutamol. If you noted I suggested she talked to her GP - The reason that 02 stats of 91 may require oxygen - I am sure extra inhalers would be better tried first.. Atrovent and a long lasting inhaler,, Say a steroid is needed then maybe "Formoterol" without the steroid maybe indicated, I am no doctor but decades of COPD and my posts are just my thoughts, not advice. :-)

RedSox
RedSox
in reply to skischool

Correct ! which is why I feel correct diagnosis is imperative. Just going to doctor and being told you have COPD without further testing can be detrimental. What if like you say , emphysema without inflammation? and you’ve been prescribed steroids ? I’ve been mildly beaten and bashed on this very forum for stating how CT scan is necessary ( yes I understand the cost and politics) but without a proper diagnosis how can one know what meds and inhalers are needed.

skischool
skischool
in reply to RedSox

Please see my other reply to you but yes i do agree that a ct scan is the best route for all copd patients to determine individual needs. :)

p.s i will still mildly beat and bash you lol

Ern007
Ern007
in reply to RedSox

RedSox Interesting post - A GP can tell by using a stethoscope and finding to abnormal breath sounds that can be caused by emphysema.and the broader COPD. . he/She will then send you to a chest specialist who will order and X RAY and probably a cockpit Lung Function Test (If they still do them) .. I never had a CT scan for COPD, the X RAYs, Spiro Tests and others confirmed what I had.. The problem with CT Scans if a doctor is sure what you have is, exposure to un-needed radiation.. In 2019 doctor sent me for a X Ray which was abnormal, again which was still abnormal. A CT Scan which proved a shadow on Lung, a PET SCAN with radioactive contrast showed a spread to the right, so to confirm another CT Scan 6 weeks later. Still the same have to have another scan in June - Far to much radiation... My point being if X Ray, Chest sounds and Bloods point to a COPD diagnosis, don't if possible go down the radiation road,,, Over Meds and Inhalers they are not prescribed because you have a condition alone - Your inhalers will be prescribed because of symptoms CT and PET Scans should IMO only be used if there is doubt...As for emphysema without inflammation - the reason inhaled steroids are prescribed is because they help stop inflammation......In short I agree with your post but, if a diagnosis has been reached. Better start treatment and the less radiation the better, unless needed.

Hacienda
Hacienda
in reply to skischool

Have to Disagree with you Carino. We are all Different, I absolutely Rely on my Steroid Inhalers, I do not have any Underlying Inflammatory Condition, Emphysema is my only Lung Condition apart from having Osteo RA . Having slept with Oxygen all Night, I take my much needed Steroid inhalers Salbutamol 400 & Iklera/Genuair at 6 am then again at 6pm, I use The Ventolin as often as I need. I have reduced my Prednisolone from 10 g to 5 g, Daily as a "Quality of Life Dosage" I feel they were not actually giving me that Quality, I shall take them until I see Amy/Consultant in April. Hope you have had a Diagnosis since your Hospital Appointment? Besitos Carino. XXX

skischool
skischool
in reply to Hacienda

Nothing to disagree with Carino,i stated that many people wouldn't benefit with emphysema that doesn't have an inflammatory element.obviously you are one of those that does,all i was trying to explain was that steroids are not a must have for all of us.:)

Not had the Barium swallow yet so no diagnosis possible but my ears i nice and clear now after the wax was sucked out as a freebie.

Hope you start to feel a bit better soon my love.

Besitos Ski's and the fragrant one xxx

Hacienda
Hacienda
in reply to skischool

So I don't have to SHOUT, now you can Hear Oh Wax One. I am feeling Better since reducing the Tic Tac to one a Day. Hubby needs a Wax reduction I'm Sure, Oh No, it's his selective Hearing, OMG I do have to Shout Though. Ha Ha . Besos to you Carino and Your Little Fragrant Fluff. xxxx

Ern007
Ern007
in reply to skischool

skischool - good point but I disagree, "A short" burst of oral steroids. Well if you have emphysema and have to have antibiotics and oral steroids, the more likely to have some lung damage, maybe not much until the next time. Inhaled steroids are a pain with Thrush and yet another medicine twice a day but, if it limits the amount of bad flare ups, much better than waiting and seeing what happens. two school of thoughts, I believe in preventing fare ups if possible, they are terrible and can be quite scary when you can't breath, been there done that far to many times, i now have scars on my lungs. Just my opinion am not saying you are wrong, just think I am right LOL

skischool
skischool
in reply to Ern007

I am not sure what you are disagreeing with,on the very rare occasion i have had an infection the antibiotics have attacked the infection and the short course of steroids have dampened down the associated inflammation.it's the standard practice as far as i am aware for people who don't generally require or take steroids on a long term basis?The steroids taken do no other damage due to the short nature of taking them but give time for the inflamed airways to heal themselves. :)

Ern007
Ern007
in reply to skischool

It is with respect that I don't agree CT Scans are good, when a diagnosis has been found by lung sounds, tests and X Ray.. Again with respect with relying on the use of emergency packs of antibiotics and oral steroids in enough on it;s own waiting for next flare up, when in many cases tiny doses of inhaled steroid reduces the frequency of total exacerbation with all that brings.. To conclude - oral steroids work, but teh more you take, the more exacerbations will happen with no other treatment - to many steroids = thinning of skin and bone.. That;s why I disagree without saying you are wrong, just my opinion... Lastly. I have severe Arthritis widespread - I asked for steroids a they will work, she game me morphine instead, the lasting effects are not as bad as Prednisolone.. Sorry to not agree, but it's what specialist and doctors have told me....:-)

skischool
skischool
in reply to Ern007

At least we have something to agree on even disregarding CT scans which are invaluable for drilling down in detail on a condition in order to determine the best method of controlling it.

I totally agree that the long term use of steroids unless absolutely necessary to alleviate a condition seem to cause nothing but complications with their side effects later in life..But in your case i think they could be very useful in alleviating some of the inflammation and pain your suffer from your arthritis and i would be tempted to ask for a second opinion as the long term use of strong pain medication often ends up with complications and without much reduction in pain unless the dosages are constantly increased,again with serious side effects.

See we were bound to agree on something in the end. :)

Ern007
Ern007
in reply to skischool

We have agreed on most things since i joined the forum, and even when not agreeing still polite, that makes debate fun.

Doctors won't give me steroids for pain, I tried in town before I moved to village and my new doctor of three years won;t either, she says I have took to many over my lifetime.

I was on

Dihydrocodeine a drug 10 times weaker than Morphine but my neck that has degenerated turned to Cervical Radiculopathy . nothing would work.

Dihydrocodeine

My doctor gave me Morphine with an option to take the smallest dose 5mg.

I took the smallest dose only when I needed it as the pain was stopping my sleep. i never wandered upwards. After tea it eases and I take a lesser tablet for bed now . I get no high or kick, just pain relief when I have to take Morphine, not on my repeat, but I can order as an acute medication along with steroids and Oxytet.

Strange thing is, (seems) to help my breathing a bit... I take you point seriously but taking the least as less often as possible. keeps it effective when needed...:-)

skischool
skischool
in reply to Ern007

You seem to have set up a fairly well controlled regime with what you know best controls the pain which is good.Yes it would appear that morphine seems to be quite effective in aiding breathing and many on here who take small doses speak well of its effects. :)

Ern007
Ern007
in reply to skischool

Thank you. My doctor allowed me to take when needed I was given enough liquid for a month and it was 7 weeks since I needed more. Liquid because you can unlike tablets, control the does. instruction on bottle have 10 mg as high as I can go but only needed that 5 times. Interesting comment on small dose Morphine, fits in with what I found. Think though just for pain then I don't get tolerant. warm weather should be fine.

skischool
skischool
in reply to Ern007

I think we shall have to set you up as the sites lead on the correct use of morphine.a very powerful drug,used correctly a godsend for long term pain sufferers and used wisely and sparingly to avoid dependence probably the best medication available for your conditions,now i shall disappear and partake of my alcoholic nightcap which sometimes not so wisely used and that minor headache in the morning has nothing to do with carbon dioxide retention.night night Ern keep well. :)

Ern007
Ern007
in reply to skischool

Goodnight Ski, I will be following you at 11-30 which is my wine o-clock. ;-)

Hidden
Hidden
in reply to Ern007

No my forstair and seebri having no effect, so relying on blue as that is the only one that is actually helping with my breathing. I also have asthma

Ern007
Ern007
in reply to Hidden

Pity Fostair is good. I have Asthma also but not quite as bad as it was. but a primary medication for Asthma is steroids and say 10mg daily as a maintenance dose. There is also a drug called "Aminophylline" - I did not care for it but is an asthma drug, Have a word with GP. BTW Blur Inhalers are more for asthma than the others. You do need to find a treatment and there are treatments I probably know nothing about, Really see your GM and tell him/her you need help..

Hidden
Hidden
in reply to Ern007

Thank you will do, spoke to respiratory nurse before she said it's part of condition but I wasnt this bad a couple of months ago

Ern007
Ern007
in reply to Hidden

Winter is a bad time for people like us, always are and feel worse.

Work out several times a week. I have been posting here about a person who was a stage 4 and told by her doctor to go home and get affairs in order and here we are 18 years later because she got into a pulmonary rehab program. I go several times a week and feel much better

That is a good reading Emily keep up your good work might not feel like it but you can keep it there

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