It's old me, but needing some new answers.....

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Hi Everyone,

Most of you know me from listening and posting on here the past few months...but I still haven't actually gotten in to see a lung specialist since being diagnosed back in Sept due to having the county insurance so it takes forever. I read alot and I have some medical background so I understand alot about COPD already but there are some things I hear on here over and over and I would like maybe a veteran or really any of you that knows, some answers to some questions I have.

1. What is "exasperation "? I'm assuming it's a breathing flair-up or set back but it's spoken of like it is expected...that confuses me bc if we are taking our meds why is it expected? Why haven't I had one?

2. They told me I had severe COPD but didn't give me a stage...they sent me home with oxygen and said i would need it as long as I'm breathing, which hasn't been true. I seem to maintain a pulse ox of about 93 with my meds so I rarely use any oxygen. Am I supposed to be using it all the time anyway? I'm scared to do that.

3. I was a smoker and they seemed pretty hopeless when talking about things and I don't think they expected me to quit. But I quit that day and haven't cheated...so isn't it true I may not be as bad as they thought??

4. Finally..in the hosp in Sept I was so bad I couldn't even produce enough air for the lung function test. I have had one since then and all the tech could tell me was that my numbers were alittle under...and each column they were less than the "normal" range but she said it looked like about 50% function. So what does that mean to me?? Can I live a long time...or should I expect exasperations that I will eventually die from?

Thanks sooooooo much for listening and replying!

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15 Replies

  • Posted

    Hi ,an exasipation is a relapse ,or a chest infection, as I'm not a medical person that's all I want to say ,but ask your GP to refer you to the pulmary rehab team ,they are brilliant and ell explain EVERYTHING to you ,glad you stopped smoking that's the best thing you could do ,and some exersise every day is good for you even a brisk walk is better than sitting about ,don't worry about getting breathless when exersising ,,,as long as it's controllable, it's good way to get air into your lungs ,and as for dying ,,,,well I was diagnosed back in 1992.... I'm now 69 ,,,I go to the gym twice a week ,I'm going tomorrow ,on Tuesday I did ,,,,2 Klm on the treadmill in 30 mins ,2 Klm on the bike in 8 mins, and 500 meters on the rower ,,,,,so don't panic ,get that referral to PULMARY REHAB , good luck, 
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    • Posted

      Thanks Nanny1086,

      Ya know I have heard yall speak of this rehab that yall have but have not heard of it in the States. Maybe we call it something else but I am gonna ask about it. I would love to learn some strength breathing. I try a few things on my own at home now but want more. I'm glad you told me not to worry about getting out of breath bc I do that with almost any exertion but it always comes back down and my husband gets upset and makes me stop doing whatever bc it scares him. Thanks again.....ladyjack51

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  • Posted

    Hi it's an exacerbation.   You often get these with colds or chest infections but sometimes they occcur out of the blue for no obvious reason.  All it means is that your condition deteriorates temporarily for a time,  but if you are in difficulty you must call for immediate help.

    You are given oxygen if your sats (oxygen levels) regularly fall below 88% and especially 84%.  I am sure you know that below this level is when your other organs need support as they are in danger of failing.   You need to keep an eye on that (you can buy an oxymeter that reads your pulse rate and sats rate from Amazon for

    around £20).

    It sounds like your lung function is 50% which just puts you just in the severe category.  You can actually live a lung function of 6% but no lower.   You are nowhere near that stage and might well never be.   Stopping smoking (which you have done) is great.  Now with exercise and a healthy diet and meds you might be able to increase your percentage or at least hold it fairly steady for many years.   I know people with lung functions of less than 30% (and even lower) who still lead active even if a lot slower lives but still with quality.

    Exacerbations can permanently damage your lungs a bit more so it is very important that you seek help immediately if you have one even if you are not sure.  It is better to be safe than sorry.   I don't know how your system works where you are but in the UK we are given a rescue pack of steroids and antibiotics in case we can't get immemdiate medical help.  

    Stay with us and we will give you all the support and encouragement we can.  Take care.  x  

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    • Posted

      Thanks so much! I feel a bit better. Let me ask u tho....so am I defiantly going to get a chest infection of some kind? I don't have a cough, no mucus or phlem issues....so this will happen with the natural detereration of my lungs?
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    • Posted

      HI ladyjack.   Everyones lung functions deteriorates a bit with age and this is natural.   This is what I was told by a doctor - because of the lung disease there is more fluid in them which means there is more chance of getting an infection which can lead to an exacerbation.

      Also I find (I am in the high moderate stage) that when I get a cold it always goes onto my chest and I end up on steriods and ab's to clear it.  I also find that the last couple of those I have had have made me feel iller than ones before copd ie flu like symptoms as well like aching muscles,  very sob (short of breath) and generally feeling ill and very tired.  They also last longer...  but I am 61 so it might be a little bit age related too. 

      Try and stay away from people with coughs and colds (not always easy I know) but us copders must try.   You know when a cold turns to a chest infection coz you usually get coloured phelgm - yellow or for more severe ones green,  but not always.   Sometimes an exacerbation can come seemingly out of the blue.   If you feel more sob than usual or are coughing or if you feel worse than usual it might be an underlying infection which needs treatment.  

      Get to know what feels normal for your own body and most of all learn to take your lungs very seriously and don't take chances with them.  My doctor told me it is much better to go and see them even if it is nothing than not go when I should.   Exacerbations can further damage your already damaged lungs and lead to a drop in your lung function.  Ok? 

      My last chest infection went bad very quickly in the space of a few hours so I staggered up to the doctors only to be asked by the pert young receptionists - 'Do you have an appointment?'   They were very reluctant to let me see the emergency doctor and were trying to put me off.   I told them quite forcibly that I have copd and needed to see a doctor.   They then turned their pert little noses up at me and agreed.   I wasn't feeling so bad that I didn't want to deck them both!    I had a very severe chest infection...

      So don't be put off!   If they had refused I would have told them I was going to go straight to A and E and would report their attitude smile  

      I hope this helps.    x  

       

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    • Posted

      Thanks hypercat,

      Seems like very good advice. It makes sense to me. And don't worry...lol...I don't get put off easily since I've had nursing training and also my mom was an RN so I grew up hearing all her stories where she knew more than the Dr who wouldn't listen etc. Plus I'm an outgoing personality and won't be put off easily...and when you mix that with the crabbiness of me being 55 then I think I can be a force they don't wanna mess with at times. Lol....especially when we can't breath. No one's knows what that's really like unless you've been there. Anyway...thanks for the great advice. I hope it's a long time before I get an infection. That does scare me.

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  • Posted

    Hi ladyjack51, thanks for asking these questions, especially the first one, because these are things that I was wondering about myself.I think the answers you have had from Nanny1086 and hypercat are great so thankyou to you both too. I have only been diagnosed for a few weeks and it's a real learning curve getting your head around things. Take care, Linda
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    • Posted

      Aaww...you are welcome Linda76363,

      The people on here are really good so I'm looking forward to even more replies so check back but yes I'm grateful to those two..Nanny and hypercat. I've been on here since Sept and learned alot but some things you just gotta ask...and then that helps someone else...just like it did with you reading mine! But an occasionally thank you never gets old....you made me feel like I helped someone...so thank you!!

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    • Posted

      You are very welcome Linda.   I was diagnosed around 6 years and have learnt a lot in that time and have been on another lung site for years.  Much of what I know,  apart from personal experience,  has been garnered from others and it has been a big learning curve.

      Would type more but I have a big furry purry puddy cat on my knee competing for space with the lappy smile  he is washing himself and my lappy is hanging off the edge of my knee..  x

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    • Posted

      Aaawww....I love my big fat, bad, opinionated, silky, queenly, puddy cat- Bella.

      It's her world and I'm just in it. Lol Cats are great aren't they?

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    • Posted

      Yeah I love dogs but am definitely a cat person smile   My cat is just over a year old now and is a right little b......r.  I keep telling him not to bite the hand that feeds him. 

      You are right - we exist just to see to our cats needs and they own us.  Wouldn't have it any other way though would you?  smile    Bev x

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  • Posted

    Hello to all of you. I too have copd, "end stage". I struggle day to day. Not only with the disease, but for better understanding of what I am feeling and going through. I had to get a new Pulmonary Dr. The one I was going to, really was down right rude as much as he could be, and he is the only Pul, Dr, in my whole county. So I go out of the county to my new Pul. Dr. I can;'t type too much right now, I have been up with insomnia all night. I am exhausted. I will add more about my story when I can. I wanted to thank you for all the information, I "need" to know. Chelle
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    • Posted

      Oh Chelle I really feel for you.  You rest now and get your strength back love.  I will look out for your post when it comes.  You take care of yourself now and get some sleep.  Hugs  Bev xx

       

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  • Posted

    Hi ladyjack, I was diagnosed with moderate COPD a couple of years ago but imagine I'd had it for a few years before that in hindsight.  Stop worrying about getting a chest infection, what's the point.  Just look after yourself well, good nutrition builds a healthy immune system and keep exercising those lungs.  I've only ever had one chest infection and that was about 8 years ago.

    Stay positive and stay well.

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