Can this really be true ???

Good Day to all at HU.

I hope everyone is ok and looking forward to Christmas ?

Anthoer question from me as always, I will try to answer one soon, but I know nothing compared to you knowledgable people.

I went to see my Lung consultant yesterday armed with my Laptop and lots of questions I had written after doing my research, the first being how had I gone from having a clear CT scan two years ago to a CT scan that indicates both moderate Emphysema and Moderate Brochacaetais in this timeframe ?

His reply was you dont have(even though it clearly stated this in the notes on ct scan I read)

He said that my lung function is great and although it has a very mild obstruction indicated in the LFT he says its very mild copd if at all ????

What I dont understand is how he can contradict the CT Scan notes ???

He also has decided to take me off Azthromycin as I have no cough or mucus production. He has also reduced my Symbicort inhaler 200/6 to just one puff in the evening per day and told me to go back in 6 weeks.

He told me that I am imaganing COPD far worse than what it is and with the Lung Function test I what I have, coupled with the fact I no longer smoke and last night I ran a mile in 7.30 minutes that I should have a normal life expectency.

This goes agianst totally everything I have ever read in realtion to COPD. The disease is by no means a piece of cake as I have read from various people on this site who experience this illness first hand.

The disease will progress no matter what and once you have it thats it you are on a road of decline and it will just get worse and worse, all beit more slowly if you take care of yourself.

I so want to beleive him that I am going to be OK and that life will be normal for me, but I dont believe him and its not me being paranoid its just facts from everything I have read.

I try to take the positives, I e the reduction in medication is a good thing I can run well its a good thing. But I also know the make oxygen saturation hovers around 94-95% and drops as low as 92% sometines when I run it has hit 89%. My TLCO is 76% which indicates damage and problems transfering o2 and CO2.

I so want it to be true, but I feel that he is just making me have a positive outlook on life even though we both know its a lie and I will get worse.

Just wanted to get this off my chest, my wife is soo happy she thinks Im cured after listening to the consultant and I believe he should not give false hope to people and say what is not medically true.

Rant Over

Justin xxx

33 Replies

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  • One thing is certain - one day something will get each one of us, but until then enjoy life! It would be a pity to waste life worrying about what the future may, or may not, hold. You've been given good news - take it at face value and celebrate with your wife!

  • Thank you Frose, happy new year to you. I am starting to accept what I have now and know that my time now being healthy is prescious and I should enjoy it to the full. Thank you so much

  • Hi jayspurs, my sats will drop as low as 69% when doing a 6 minute walk and my TLCO has averaged 30% of predicted since falling ill 4 years ago. My lungs were damaged after a double pneumonia and a month of ventilation and sedation.

    Keep fit and you could well live a long and normal life

    Tony

  • Hi Dall

    Thanks for the reply and also happy new year to you (I loved your singing by the way :) )

    Lets hope we both live a long and happy life

    Thanks again

    Justin

  • Who knows Justin but one thing is for sure - give your Consultant a big kiss and go and enjoy your life! Keep running, never smoke again and take care of yourself and your lovely wife. Merry Christmas and a very happy new year. Take care xxxxx

  • Hi Sassy

    A very happy new year to you, I have heeded your advice and continue my healthy lifestyle.

    Thanks Again

    Justin

  • It seems you are completely a glass half empty person.

    Read back through all your encouraging replies. On the ways to improve. There are several people on here who have improved since diagnosis. I for one have hugely improved over the last 18months from learning on here and the right management. I have asthma and was diagnosed with mild COPD over a year ago after 5 bouts of pneumonia. I've improved so much I am discharged from the hospitals chest clinic. My respiratory nurse says I no longer have COPD.

    So Justin, rejoice with your wife and keep following our suggestions re smoke/fumes/chemicals/dust/mould, avoiding people with colds. Get you flu jab. Keep running.

  • Hi Peege

    A very happy new year to you, I will certainly be keep up with the new healthy lifestyle, thanks for the reply

    Justin

  • Hi Jayspurs....I have thought before when you were worrying, that you were in fact worrying unnecessarily, but did not like to say that to you

    I have had Brochiectasis since a baby....not too sure I have ever been able to run a mile during my whole life time !!!!! but I am still here...and I am way past retirement age ( even though I haven't retired yet ) obviously I am now at the severe COPD stage...but I still do not use oxygen and live a full and very active life

    Do all the right things for your health ( especially exercise) and you will live as long a life as anyone else

    ps are you a Spurs supporter? :) :) here that the Qatar government is interesting in buying Spurs

  • Hi Sohara

    Happy New year to you. I still do not believe my Consultant, but I do accept the fact that I have two Lung diseases and whilst I cannot cure them, I can do everything in my power to slow the progression the rest is upto the big fella upstairs I guess :)

    Yes I live and bbreath Spurs, Great reult against Chelsea today, would not like to be overtaken by the arabs though. COYS

    Thanks Again

    Justin

  • I watched that game too. and it was one of the most exciting football matches I have ever watched...brilliant football and end to end stuff...both teams played REALLY well,,,,and as a life long Arsenal supporter ...it scared the hell out of me , as you can imagine :) :) But your team was awesome..you must have enjoyed that match. I have a spurs fan son ( OK I did a bad job there let him chose his path !!! ) I was telling him about it on the phone !!!! relaying all the happening as he doesn't have BT sports !!!!

    Keep well

    Love Sohara

  • Hi Jayspurs,

    You had some really good news. I agree with the others. Live a healthy life, keep up with the exercise.

    My concern would be to keep and eye on your oxygen levels what are they if you go up 3 flights of stairs fast? How about walking fast for 6 mins. How about when your sitting watching t.v?. Or just walking at a normal pace. My daughter is around your age and she is usually 98. Not too worry, I have read some peoples average is 95.. I'm not trying to scare you. As fast as you run a mile you gotta be good! I can only wish I could do that.!

    Let me know how you make out. Aren't the people on here great? You gotta love them

    ~ RUBY ~

  • Hi Ruby

    Happy New Year to you. So I took your advice and have been taking my Oximeter out and about with me and here are my results

    at home watching telly 96-98%

    walking 3 miles taken at intervals from 93-97%

    Running 93-96%

    I think i have experienced an improvement as I had an operation on my nose and it is clearing up and less bloody etc and I can take more air in.

    I dont know how these fair now ?? My wife is always 99-100%

    Hope your well and thanks for the reply

    Justin :)

  • Hi Justin,

    Thanks for the reply.

    Happy new year to you too.

    It sounds like your doing well.

    "Sometimes you just have to dance with the music thats playing". I heard that saying on the telly and really like it. You understand it right?

    Anyway, your going to be alright. Your sats are a little lower than normal but still ok. Just get your breathing test done once a year and keep on running!

    What brand oximeter do you have?

    Best wishes,

    Ruby x

  • Hi Ruby

    Thanks for the reply, my oximeter is by ChoiceMMed and I bought it from Boots. I Know I am never gonna get better and slowly will get worse, thats the name of this game I guess, but I shall just try and enjoy the here and now I guess and of course I will keep running.

    Thanks again Ruby

    Justin x

  • Regarding emphysema. Once you stop smoking ( or are not in an environment that may have caused it ) it wont get worse as there is nothing to make it worse. The lungs will wear out through age at the same rate as a person with healthy lungs.

    I doubt there are many people with healthy lungs that can run a mile in 7.30 mins !

    My average O2 is 93%. I have very severe emphysema.

  • Hi Puff

    Happy New year to you.

    I really would like to believe this however from what I have read Emphysema is a progression of inflamation and whilst smoking is the cause of the original inflamation once the cells and struture of the lungs have changed the inflamation continues. Emphysema is effectively progressive lung inflamation. Smoking does speed up the process and once stopped in some people it reverts down to that of a normal person approx 30ml a year some people can lose upto 200ml a year these are called rapid decliners knowone knows why this happens, some can stabilise, its a very indvidual diseases with not much consistency. So although we try to do as much as we can eat healthy excersise, not smoke. I think how we decline is down to genectics and the big fella upstairs. I in know way want to offend anybody by this its just what I have read through many hours of academic papers and research and is what I understand to be true.

    All the best

    Justin

  • I do agree It's very individual and hard to say how it affects each person. Like you say it's probably down to genetics in the main. My numbers haven't changed in nearly 4 years, so let's hope it doesn't in the next 4 ! :)

    Happy new year to you ! :)

  • Hi, congratulations on the new diagnosis, you have done the best thing by stopping smoking, so enjoy the rest of your life.

    Just a query about your running and dropping oxygen levels....are you breathing through your mouth or your nose when you run? Nasal breathing will warm and filter the air and there is less risk of your hyperventilating.

    Have you rung the BLF helpline for reassurance?

    Quite a few of the members here have tried meditation, I find it very helpful for calming and slowing my breathing rate.

    Best wishes to you and your wife.

  • Hi Knitter

    Happy New year to you

    Thank you for the reply

    All the best

    Justin

  • Hi jayspurs, fantastic news, ur consultant isn't giving u false hope, ur very very mild, most smokers at ur age would be, but unless an illness appears associated with lungs they will never know until it's becomes more apparent, u've stopped smoking, u can run a mile, u exercise and ur young whoop u've improved which is defo possible and u and plenty of others are proof, go and live ur life stop worrying what u've read and remember ur individual we don't all slot into what the internet says.......

    I remember reading u and ur wife want kids but u were unsure as u didn't want to leave them fatherless, none of us know what life holds , so go have them and enjoy life and all it's pleasures ur wife and kids can bring. Take care and STOP worrying lol... X Sonia xx

  • Hi Sonia

    Happy new year to you. Thanks for yor encouragement, we are still talking about the future as who knows how long I will stay healthy for its just an unknown factor for us all, I will certainly be keeping up the healthy lifestyle and fighting this thing to the end.

    thanks for the reply

    Justin

  • Hi Flibberti

    Happy New Year to you. I have accepted what I have now as opposed to thinking it is some kind of big mistake and whilst I know I will never get better and progressively worse overtime whilst I am healthy I intend to enjoy my life, and worry about the ugly part later

    Thanks for replying

    Justin

  • The consultant should know - he has dealt with COPD far longer than you!!! Take his words and feel blessed, enjoy your life to the full!!! xxx

  • Hi TADW

    Happy New Year, I guess your right I will certainly have a good go a leading a normal and healthy life.

    Thanks for taking the time to reply

    All the best

    Justin

  • I don't believe your consultant has given you false hope...you can't reverse copd but you can slow down the progression and you seem to be in the very early stages...keep exercising and don't ever smoke and most importantly have a positive attitude . X

  • Hi JenieLee

    Happy new year to you. Yeah your right my consultant I think was just trying to say life your life while you can i think, I accept what I have now and understand that I will get progressively worse overtime no matter what we do, so just got to make the best of it now I guess.

    Thanks for replying

    Justin

  • Firstly as many have said on here you need to look at the glass half full! The condition can be held at bay or even improved. You have to learn to rule it, do not let it rule you!

    Keep up the running it will help no end. PMA.

    I have seen my ECG flat line and believe me it makes you think some very strange thoughts! My wife has been told many times I will not survive the night.

    I am not giving up that easy and intend to live as good a life as I can!

    Be Well

  • Hi Offcut

    Happy New Year to you, I am coming to terms with what I have now. I wish you could halt it but its progressive, however I will do everything in my power to lead a longer life as possible.

    Thanks for taking the time to reply

    Justin

  • Amen to all that has been said. I couldn't have run a mile in that time in my prime; Consultants no longer have the option to make soothing noises - they are obliged to tell it as it is, so please accept that you have had very good news and make the most of it - as my old Dad used to say there are a lot in the local graveyard who would be glad of your complaint! Have a Happy Christmas with your lovely wife and, short of going under a bus, I'm sure you'll have many more of them.

  • Hi DragonMum

    Happy new year to you

    Thank you for the reply, I am certainly going to try and life my life to the full. Thank you for taking the time to reply

  • Hi Jayspurs,

    I left you a post earlier and just wanted to add another thought. The concern was with your oxygen sats. Have you checked your oximeter out with the one at the drs?

    Some of them aren't very reliable. Has your wife tried it? Check it out. I've had a couple I returned because they were way off.

    Good luck to you. Let us know what you find out.

    ~ RUBY ~

  • Have you ever considered the possibility that you may be an incredibly ambitious but greatly frustrated hypochondriac ??!

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