A sad and interesting day.: After... - British Lung Foun...

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A sad and interesting day.

derrylynne profile image

After several slow walks and watching my sats settle at 84% I had started to come to the conclusion that I would need some help in the way of portable oxygen. But have never been assessed even though I have done pulmonary rehabilitation. I belong to Breathe Easy and the respiratory nurse was talking about blood sats and o2 so I asked a question. My sats were at a constant 84%, and have been every time I go for a walk. Is this dangerous I asked. I am pretty certain it puts a lot of strain on my organs, even if when I stop it rises again. I have overdone it, pushed myself often, as many of us are prone to do, then my sats do not get above 90 again for a good few hours. I am now being referred and told I will most likely have to have an o2 pack when walking, or exercising for that matter. A sad day as although I knew this day would come, and it has taken a long time, it still does not make things any easier.

I have also been asked to give my story to a newspaper as they want to do a spread on lung disease and how it effect us. I am sure with only 25% lung function, with all the problems that gives with day to day activities, I can give a good account so expect to have a chat with the reporter soon. I am already making notes on my pad to remember the important points I want to get across. Very easy to forget them on an interview. Yes, it is a very sad day. My lung function is not getting worse, maybe just my acceptance that by pushing myself, by exercising with such low blood oxygen saturation, I may be harming myself.

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22 Replies

The 02 will help you; it’s hard to accept but in the long run it will be for the best Val

the more publicity that lung disease can get, the more likely that people will support the cause, but more importantly, understand the severity of the somewhat invisible disease which is so debilitating. understand the writing things down, I always go to pieces when confronted by drs etc, never had to face the press but am sure its the same. Good luck with your interview, good luck with your o2, but don't be thinking you can do too much.

Hi Derek,

It is the best thing for you, exercising with such low sats is not good.

I am glad you communicated this to the respiratory nurse, just a pity you hadn't done sooner or in fact had been tested sooner.

Let us know how you get on and good luck with the interview.

in reply to

spot on Zoee! P.

All the best for the interview. It was a sad day last month when my dad started to use oxygen, he is so fiercly independent and even now will only use it when absolutely necessary. We remind him that his other organs are suffering and he should use it more but I guess it's easy for us to say and he must do it in his own time.

in reply to tanyamarie

It is hard to accept though, know what he is going through Val

I would gladly step in his shoes and have his illness instead of him, he is a terrific dad and doesn't deserve it. I offered a lung for transplant but specialist said he needed 2 not one.......................I looked on ebay but all sold out! We make him laugh...................best medicine we reckon Val.

in reply to tanyamarie

Ah that was lovely my heart goes out to him, I am at the Freeman next week to see if we go any further regarding a transplant Val x

Grab it with both hands derrylynne - it's the best thing that could have happened to you! Using your 02 in conjunction with your oxymeter for feedback will mean better walks and being able to do far more over time. You know your stuff derrylynne - 3 things that extend the life of a copd'er - smoking cessation, exercise and oxygen for those that need it - you've done the first two, now welcome the third and make the best use of it you can :) Congratulations from Parvati :)

derrylynne

I cried when I was told over 6 years ago that I needed oxygen. I was feeling pretty lousy back then and had trouble sleeping and doing much of anything. I felt better after I used oxygen. You will see it's not the end of the world.

Funny how we all differ - I practically cheered and danced a jig - it was like xmas ten times over - I got my life back and I haven't looked back since :) P

in reply to

all things oxygen - drtompetty.org/

I bought this book and refer to it often - however you can now download it for free. If nothing else, at least check out chapters on copd, FAQ's, and the adventures folk are having with their 02 - walking marathons, cycling USA coast to coast etc. A real eye opener and inspiration. It was earlier works by Tom Petty that had me welcoming 02 instead of dreading it. Also an excellent chapter from another of my 'saving angels' Mark Mangus RT. Check it out if you haven't already! P.

True, it is a sad day when realising you need to have portable oxygen. In the long run it will be beneficial, enabling you to get about a bit more easily. I have been on portable oxygen for a couple of years now and it does make a difference. Best of luck with the newspaper article. Richard.

Many thanks for the kind thoughts, words, links, and encouragement. It will be a few weeks before I have the full assessment but am sure as has been said that raising my sats will mean I can do more and enjoy what I am doing more also. I will let you know how it all goes:-)

Welcome to the club derrylynne once you start using it you wonder why it was not there sooner. Raising the issue for the public in a newspaper article can only help the understanding of this condition where oxygen is often seen as the last choice, this could not be further from the truth, a message that needs to be heard by all copd patients.

maruth profile image
maruth in reply to

That is so right Bilbo, both we as COPD patients and the public do need educating.i was in agony after climbing stairs with shopping,and suspected my need for 02,

Eventually was diagnosed ambulatory 02.and told not to climb stairs again. it was bitter/sweet when i was told this, my family objected vocally and i needed educating in order to educate them, they understand its beneficial for me now , but it was only after reading about 02, that i could explain the damage we suffer through lack of sufficient oxygen, thankfully they now understand ...... we all need it to survive.

i was educated when i found the following site

www,emphysema-copd.co.uk

lets get the message out.

good luck too you

Some good will come of it then

Significant observation Derek.

Would a pilot or a mountaineer keep going witjout recourse to a supply of 02 when the vital organs are being constantly deprived ?

It is about time you paid attention to what many of us have been saying, that its not a matter of soldiering on, how you appear in public, head in sand or crossing fingers.

The people monitoring your health have let you down, as, if what you are saying is, normal for you, you have been negleted, as your 02 levels certainly drop well below reccommended safety levels

All the best wishes to you, has you seek answers

Hello Derek, i am new on here, but i agree the medical profession definitely let you down, it is so dangerous to your other organs for your o2 to go below 88,. A year ago, i drove all over the place, went out with friends when i wanted to, cleaned my house and my two older boys who work, had a great life, did all i wanted when i wanted, woke up one morning couldnt breathe, legs twice normal size, doctor got me in to hospital, turned out i had low sats for months, but never felt sob, just tired now and then and put it down to age and activity. anyhow in hospital was diagnosed with a lung disease, Bronchieactasis, seems i had it for years, it one of those diseases you can get as an adult but takes years and years for effect to show up. well it had caused my heart to work 2/3 normal rate to get o2 into my lungs, so i had, had a heart attack, then my life changed, was put on o2 for 16 hours a day, had to have a concentrator in house, life changed, housebound, felt my life was over, however, through meds and pul. rehab am happy to say, things have vastly improved, only need o2 now when up an about, so can do all i used to do before, only slower and have to take a small cyliner of o2 out with me, at first i was self consious when people looked at me, with cannula in my nose, but i didnt care, i was free and able to live again, now i just am so used to it, and so happy to have my life back, so thank goodness, you will be treated before you reach the stage i did and believe me, you will , sleep, eat and have far more energy once you get your o2. good luck and very very good wishes xxxx

I second that one Stich. sounds like you had a terrible time of it, and you gave a good description of low blood saturation levels. You would think that with sats when out of only 82 to 84% I would be gasping. But breathing does not work like that. We can feel not too bad, although I tend to think now that maybe we just get used to feeling a bit rough. Many thanks for your post Janie, and it certainly is a wake up call to me to ensure I am more careful and demand help rather than let things slip.

When it creeps up on you the changes to everyday life are shadows slowly falling onto the things we used to be able to do, we get used to living in our rarefied surroundings without heed of where we are.

The wake up call, in my case was a hospital stay exacerbation that brought me from my slumber, to realise the gradual slowing down had to be halted before all movement was lost.

As things were avoided unconsciously, it now took a conscious effort to lift the shadows and reclaim areas that had fallen into disuse, my oxygen was the light which helped me see beyond the small world which had crept up on me.

It was always the easier option to say "not so bad" when asked how life was so medical help was not sought, it is the first time I have done this at the level I find myself so how are we to know the warning signs are flashing, other than from our peer group, sharing their experiences.

The attitude that has brought you so far derrylynne will be such an aid to passing on the message to your fellow patients, along with the wider public, their is still a life to be lived if we dare to take it.

You are not alone as you represent so many in your good work, long may you have the strength to continue, your efforts are appreciated more than you probably know.

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