High pfts, symptoms

Sandy, so glad that you are doing so well on oxygen at night. I am very glad for you. Seems like things are going well! I personally want to avoid oxygen as long as possible. But f it comes to that I will remember your story!

Thanks.

Hi. Sandy,

For the last 30 year's I have lived with only 30 % lung function and my doctor says that oxygen would not help me with my particular disorder and the only time I use oxygen is during hospital admissions related to my lungs.

One time in an ambulance, the tech put a mask on me, my first experience of this nature, and oxygen was forced into my lungs until we arrived at the hospital. I will never forget that experience because for the first time since birth that I truly think I could have been feeling what it must be like to have a normal amount of oxygen in my blood stream. It was a momentous moment.

I wanted that again, but evidently for me there is risk of my fragile lungs popping like a balloon.

I use Singulair, BREO inhaler and Spiriva inhaler. My life is good despite the chronic suffering. The medications are fabulous! I have experienced all the developments for nearly 57 years, and the medications over the last 16 years have worked like miracles for me!

💛 Dawn, USA

I am so happy I found this site! I went to my primary care doctor for medical form yesterday and more tests they said that my routine x-ray showed slight change in my lungs and may possibly be copd? I was totally shocked and so upset that blood pressure went through the roof. My oxygen level was normal and my test on Spirometry was good all three times I did it. I smoked a little back 30 years ago but not very much and only for a year or two. They gave me the release for surgery and said that I do not need any follow-up? That sounds pretty strange doesn't it? I feel fine, walk 3 miles a day unless too cold and snowing, lol. I am so active and never sit still. I will call my regular doctor that was not there yesterday and ask her more questions. Any comments will be so greatly appreciated or any suggestions as ro what to ask her? Thank you so so very much. 

In my experience COPD was diagnosed solely on the spirometry test, the only time I had a chest x ray was to confirm I had pneumonia.

Maybe x-rays can show up possible COPD before you have any symptoms, becaues from what you've said about the spirometry results, that they said no follow up was necessary and that you can walk 3 miles a day (I'm very jealous of that!) I wouldn't worrying if I were you.  

That's what I'd be checking, and if not COPD what's caused these changes, presumably from an earlier one and how long ago was that?

 

Thank you for yourt reply. I had a torn meniscus in 2011 and that is when I had an ax-ray for or pre-op. The report I just received said no acute pulmonary disease, no congested heart, etc, but did say probable copd/emphysema? It scared me initially, but since I have no cough, no breathing problem, I am not going to worry too much about it I took it upon myself to call a pulmonologist. I just felt it was prudent even though my primary doctor did not say that I had to. The pulmonologist will review the results, and I will see what he says. The initial shock sent my blood pressure sky rocketing. With your COPD, you did not have to have a chest ax-ray at all? How are you doing? Do you take any meds and do you have to exercise? Thank you so very much for getting back to me. It really helps me and do appreciate you.

 

Hi there Jude! I've just read about how you was diagnosed & am confused myself I was diagnosed with c.o.p.d last June following bouts of excessive coughing & infections that wouldn't shift & have had blood tests to rule out other possibilities one of which I was asked todoa hiv test that came back all clear thankfully I knew it would! I am an ex smoker almost seven years now counting the lenth of being pregnant with my Son in December 2008 & haven't looked back or smoked since the night before I found out, was shocked  but not suprised at the diagnoses of c.o.p.d because I have other long term conditions that lower my immunity! Well what I can't make sense of is that if the lungs looked clear on the x-ray why would I have had to go back to see our GP asap it was noted as possible c.o.p.d maybe it means clear off lung tumors & cancer I might not off heard clearly al what our  GP said my eldest daughter was with me at the time & mentioned that he said I had some small black patches but I'm going to have to ask the GP again I'm not fretting but it just seams odd. So next step was the spirometry which was 68% & 70 something if  Iheard right again, & was told it's definitly c.o.p..d. I have a piko-1 spirometry monitor which shows I'm always in the red zone & just to be sure I bought a next monitor an emini wright peak flow handheld monitor brand new as the one mentioned above  which I've had for just a year needed a new mouth part that I've not been able to get.

I have changed the batteries plus I make sure theres no exclamation mark which shows you have to repeat blowing into the device untill it dissapears! Well  same thing the latest one shows the same that I'm still in the red Zone but my fev-1 readings on the piko-1 are variable it can go from 68% then 75% 94% 98% & it can be as high as 1.11 but thats not often its usually between anywhere from 68% up to 98 & back down but always in the red zone which is weird I've yet toupdate our GP on this matter!  I bought one first as my six yr old has asthma since the age off just between 2+3 yrs of age he has one of his own the manual e mini wright air zone peak flow meter.I then started using one from when I found out what I have & the surgery does checks annually which I think is too far apart I was supposedly in the elementary stage when first diagnosed but then a further review with the nurse now puts me at stage two & that was end of July or August of last year! Sorry to go on but thats it really just thought you & anyone else might be intrested in these strange variable sprometry readings am pretty sure I'm not alone with this matter & intrested to know of anyone elses experience relating to this same matter with sprometry results & diagnosis! Have a pleasent day what's left of it & keep well!

I'm doing OK generally, except I'm having a second bout of "walking pneumonia" and managed to stay out of hospital this time .. well so far, I see the gp again on Monday for him to check my lungs & decide if I need more antibiotics beyond this iniial fortnight.

I use Spiriva once a day and from a month or so ago Symbicort twice a day.  Before I had the Symbicort I used to get exhausted from coughing, esp at night, but hardly ever now.  

I don't see exercise as something I "have" to do - it's something I've always done and enjoy - nothing drastic, mainly walking most days with my dog for around 20 minutes, plus stretching and physio recommended exercises.

I do have some nights where i wake up far too early in the mornng and can't breathe properly lying down so get up and have the rest of my sleep in a comfy armchair and I often have bad reactions to being around other people's cigarette smoke or other pollutants.

I"ve learned you can't "soldier on" with emphysema and to slow down or stop BEFORE my breathing becomes uncomfortable, which means it takes me much longer to get physical things like gardening, hangng out washing, etc.  I've learned to break tasks up into smaller ones and rest in between and to not get frustrated about it, because that doesn't change anything except bring on depression.

  .

I find this forum interesting partly because of the huge differences in people's stores, atlhough smoking does seem to be the common thread.

I'd had a small heart attack on October 2011 but was still having chest pains which I didn't think had anything to do with my heart.  My gp said to wait until all the new medication I was on settled down, which I did, and still got chest pains & breathlessness on exertion, so she referred me for a spirometry test and sure enough I have lost 30% lung capacity.

I'm told this is quite good considering I'm 68 and smoked for most of my adult life - I had given up about 6 months before the heart attack, but obviously many many years too late.

I got myself into rehab as soon as I could and have managed to keep it at around 70% for the 3 or so years since emphysema was diagnosed with regular exercise.  Toyou or anyone who doubts it, rehab is DEFINITELY worth while in slowing the advance of the condition and learning how to manage it, I can't recommend it too highly

I meBt I wanted to start out slowly. I did a little less than a mile. Normal to be so tired later? Hoping it is because I have not been exercising.

You can still walk for a mile?  I'm green with envy!   I'd reckon it's normal to be tired later, either from  the COPD or being out of practice exercising, or a combination fo both.

Sandy,

I live alone out of state after a divorce. That is a long story. I have a few friends here and have adjusted pretty well but I get tired of being alone. Majority of friends and family up in Mass. In the states. My fear if oxygen is twofold: it is the first step towards permanent oxygen.

The other big reason is what would I do if I traveled? No one at home knows. It is a Shane factor in a way up in my neck of the woods. Both my parents are ill and I visit when I can. Either one could pass away at any time. Then what? Travel with portable? What about when I get home? I cannot stay at someone's house with an oxygen tank. It just is not doable. I no longer have a home there so there are few places that would work. Some have kids and most have no room for me and a tank too! Even only at night. It horrifies me. Plus you have to order it. If the hotel would allow it I would stay in a hotel????? Do you understand my fear?

Also just for a regular visit, which could be in May.

Oops! And the expense! It is covered by insurance but what about electric bills? I am not in the best shape financially after the divorce to add that kind of expense.

Scared me to death just writing these replies!!

I have even thought of just using it on the plane if needed and not use it for the visit.

Hey this is for everyone. I would like to date again but feel "damaged". I feel ok to do it now although I think it will slow me down. At least as it gets worse. Anyone here dating? Hiw do you tell? Is it worth a try?

Sandy,

I apologize for my "rant" about oxygen.  It was a very bad day for me and I really overdid it.  You and the others on here have been wonderful.  

I will be going to the pulmo finally next week so will have some more useful info.  I think all your docs on here sound great.  Thanks again for all your help!

Yes, Maryterese, I understand your fear.....and no need to apologize for your "rant" as you call it.  I was TOTALLY embarassed, humiliated, etc. when I was first told to go on oxygen at night, however, now I would not do without it.  It also made me notice the incredible number of people in public that are toting oxygen tanks around.  Please do what your pulmonary doctor advises.  My heart goes out to you!!!

 

Also, Maryterese....I can't IMAGINE that any of your friends OR relatives would "snub" you for being on oxygen or taking a tank on vacation with you.  I KNOW this is a poor comparison; however.....I am not a perfectionist when it comes to housekeeping,.....my home is "healthy but happy" and I have the attitude if a "perfectionist" comes in to my home and doesn't like the way I keep house...................they need not return!     My point is....if anyone resents the fact that you need some oxygen, you can bet that THEY are not perfect in some way!   XOX

 

I think it's really imporant for us not to hide the symptoms of our condition or the consequences - eg oxygen.   At least two people in my circle of friends have given up smoking as a result of me not hiding my symptoms and casually mentioning how emphysema is restricting my life,

As us older ex-smokers mature there are going to be more & more of us with COPD - tragic but true

Jude:   Thank you for your GREAT response about hiding symptoms!!  Yes, I was a bit embarassed when I first had to use oxygen but NOW....I am proud to admit that there is something that is helping me.  It really is nothing to be ashamed of, nor does it indicate the "end".  There are literally thousands of "us" out there that are still not aware that symptoms they are having could be attributed to COPD.  Again, Jude......THANKS!!!

Thanks for your thanks!  Glad I could help - I'm finding that if I casually mention why I'm puffed out it's amazing how many people tell me that they or a friend or family member also has COPD and I can pass on what I've learned, esp about rehab and learnng to accept the changes and not agonise about them.

My former GP was a help one day when I was wallowing in a bit of self pity about my lifespan being shortened:  she looked at me and said:  

You're over reacting Jude, I went to a funeral last week of a patient in her 80's who'd had COPD for 20 years, you're not dead yet."  

Tough love, eh, but it pulled me up and put me on the path of accepting I can't do anything about the years I smoked and stopped and started again, I can only do someething about what's happenign NOW and make the best of it - what's the alternative?  Being depressed and miserable as well as COPD?

I re-phrased the 12 step serenity prayer years ago into an affirmation, as I"m not into praying:   I HAVE THE SERENITY TO ACCEPT THE THINGS I CAN'T CHANGE, THE COURAGE TO CHANGE TO THINGS I CAN AND (this is the hard bit!) THE WISDOM TO KNOW THE DIFFERENCE.

COPD is turning into an epidemic as us older ex-smokers deal with the consequences of our nicotine addiction and we need to support each other as much as we can and pass on what's helped us, which is why this forum is invaluable

Take care and pray if that's your thing - whatever gets us through the night, eh?

 

I understand your dilemma totally:  I love living alone but sometimes would just love to be cossetted and taken care of ... price I pay for independence.

I had the chance recently to get involved with someone much younger and totally healty, and also still sad it didnt happen I had huge misgivings about how it could actually be ok given my state of health.

I haven't actually had sex since being diagnosed and would love to hear of other people's experience:  can sex still be good when one partner gets breathless and goes into a coughing fit and has to get up and walk around in the middle of the night?   It would need an understanding partner I reckon- maybe we need a dating site for COPD people to work it out together?  Just a thought ........ maybe I'll suggest it to the rehab group people?   Sex wasn't mentioned at all in any of the sessions I went to last year but I'm considering going back for a bit of a top up  and if so, I'll try & make an opportunity to raise it.   Difficult because for most of us the issue is also sex and ageing .... what do other people on this forum think about this issue?

I understand ur fear. Mine is ur 1st one, plus, I already must walk with a cane at times n I just can't stand the pitiful looks I get. If there's anything in this world I can't stand, besides the inhumanity of some ppl, it's pity.

Oh, I forgot... The reason I must walk with my cane sometimes is Ankylosing Spondylitis. I've been a sufferer most of my life and finally found a doctor who didn't think it was 'all in my head', as I and so many fellow sufferers have been told. He sent me directly to a rheumy. I asked him if he would prescribe pain meds. He said, "First, let's see what we're treating." With that, he ran some blood tests and called me in to give me my results. I'm in pain management now and on some pretty powerful meds, but I can function more of the time than I used to be able to. That, alone, is a blessing. Unfortunately, tho, my symptoms have been getting worse and they'll continue to do so.

So, there u go. That's the long m short of it.

for me.