My breathing is worse than it's ever been. Or something terrible is going on. I just don't know. I spent most of the day in bed, but I can't sleep. Yet this morning I took my usual walk and managed 4 miles, non-stop. Not especially fast and no hills. Last weekend, I spent half of Saturday in the ER for, of all things, horrible constipation. That had never happened before. The week before that, I had my annual pulmonary checkup and my 02 sats were 99 percent, dropping to 95 after the 6-minute walk. Here's the thing, my pulmonologist said my FEV1 was 75 percent. I just cannot believe that. The year before I was 68 percent. Yet I know that I feel far worse than I did a year ago and I can do far fewer things. For example, a year ago I was easily caring for my yard, mowing and such, but I can no longer do that. Has anyone ever had a false breathing test? My doctor seems to think I'm doing really well, but I feel like I'm end stage. I am not exaggerating. I just don't know what to do. I've been in bed most of the day and it's 5 p.m. and I will be going back to bed soon. I am just about out of hope.
Incorrect PFT????: My breathing is... - Lung Conditions C...
Incorrect PFT????
Challny,it is possible to have a false spirometry read out but normally falsely negative due to an underlying infection or something similar,i don't believe i have read of a false positive mind you with your sats which are consistently high and your ability to walk 4 miles non stop i don't think you have much to worry about.
However when you get people on here who can't walk further than 10 paces and whose sats rest in the very low nineties or eighties even on oxygen and others with various cancer complications and fibrosis issues coupled with dodgy hearts i reckon you should be happy enough with your lot at the moment.
Take care and think positive,,,, 
skischool thanks as always for your reply. I am in a very dark place and I have no one to talk to. One of my closest friends last night became angry with me because I canceled a dinner at the last minute. I have been in bed pretty much all day, struggling to breathe. I cannot sleep. Everyone seems to think this is all in my head. That's what my friend said, but today was the worst day I have ever had. I keep wondering at what point to I drive to the ER. I have run out of hope. If only I could sleep. Everybody is sick of me, including myself. I want you to know that I appreciate your listening to me. Typing this message at least takes my mind off my breathing for a few moments. I feel stupid, self-centered and useless. I'm smart enough, I think, to understand that my ability to walk 4 miles does not square with the tale I'm telling. These walks are not easy, but they are for me enjoyable. My SOB is the same if I am walking 4 miles or laying in my bed. What would really be hard would be to do something more strenuous than a steady walk on absolutely flat ground. About a month ago I had to carry a 50-pound sack of horse feed just a few yards, and that left me panting for air. Ditto for mowing my lawn. A few months ago it was no problem. Now, I just can't do it. Forgive me for being so long-winded; I was in the newspaper business for 38 years, so writing is a bit second nature to me.Enough. You are a good person, Skis. I wish all the best for you and pray you are feeling well. Thanks for everything.
Hi Challny I’m sorry I can’t answer your question, I just wanted to say I’m sorry you’re feeling so bad you say you can walk 4 miles I think that’s great news as for at least a year now I can barely make it to the kettle to make myself a cup of tea and it’s only about 5 steps from my bed, I couldn’t make it to the kitchen so that’s why I have it in my room. I don’t think your at end stage but I’m no Dr your feeling so unwell could you maybe have a chest infection as that could make you want to rest a lot more than usual and more breathless. I really think you should call your dr for emergency appointment and hopefully you’ll get seen the same day , you definitely need to see someone who can check your breathing and listen to your chest. My heart goes out to you and I hope you’re feeling a lot better soon. Take care and let us know how your doing. 🌸🌹
Thanks @Shazrab. I just had my annual pulmonary checkup two weeks ago. Chest x-ray, breathing test, 6-minute walk. She said everything looks good. But I never really get a chance to tell her how I truly feel, she's in and out so quickly. I am sorry that you struggle with this horrid disease. If I could snap my fingers and you would be well, I'd be snapping like a madman.
I bet you have an infection or an exacerbation which is why you feel so unwell. Is this possible?
I am mild and struggle to walk, and certainly not 4 miles however much I try. But I also have chronic back pain too which must impact it. If I get an exacerbation or the weather is humid I feel horrible too.
I hope you are feeling better very soon. x
Hi Challny I’m so sorry to hear how you are feeling and I totally understand where you are coming from on all counts. I do agree with what hypercat says about you having an exacerbation maybe a trip to the GP might be a good idea once you get some antibiotics in you you will be feeling better.
I am lucky I have what we call an emergency pack which is antibiotics and steroids to take when I start feeling rough.
As for your friend I have one set of friends who used to get angry when I was ill and complain that we don’t go out with them much. I felt they didn’t believe how ill I was or how ill I can be, but over the last year I think they get it and are more understanding now. There is nothing worse than friends and doctors not believing how ill you are it’s so frustrating.
Keep us informed of how you are feeling and if you can manage a trip to the doctors how you get on. X
Hi challny, I’m wondering if you’re having anxiety attacks or maybe an underlying infection. You need to go back to your doctor and get him to do another check on you because seems to be going on.
I hope your health improves very soon and wish you well. Xxxxx
Before you go to see your doctor, try writing down all your symptoms in bullet points so that they are easy to read. Give the list to your doctor and ask them about each point. Make sure you have your name and date of birth on the list, and keep a copy for yourself.
I did this when I was struggling to speak with influenza some years ago, and my doctor appreciated being able to see all the symptoms together without having to ask me lots of questions.
Hi challny
I'm really sorry to hear how you feel but please don't be offended when I ask you not to describe yourself as "end stage" as it is very hard to hear from those who are actually at or nearing "end stage" and careers like me who have to have the strength to get up each day and face seeing their loved ones gasping for breath and unable to barely walk across the room.
Listen to your doctors. Your FEV is good and be glad you can walk 4 miles. If you're feeling particularly bad and you think you're having an exacerbation take your meds as infections will further damage the lungs.
Hope you're feeling better soon
Corin
i can't walk 100 yards without stopping for a couple of minutes before carrying on,my wife carry's the shopping bag because it will knacker me if i try it.
Just one query, has the way in which you breathe been monitored.....I know that sounds strange , but both I and my friend have been observed by health professionals when we are at rest, during a breathlessness attack, and when we are talking etc. In my friends case when she was talking about topics that worried her, her breathing pattern changed to faster tighter upper chest . How many breaths you take a minute monitored too, a nurse counted for me.
Do you breathe with an open mouth or through your nose to warm and filter the air, with a relaxed diaphragm.....belly breathing....and relaxed and lowered shoulders? I had a tendency to breathe with my upper chest, not much air was getting into my lower lungs...breathing in my stomach went in instead of out...panicky breaths. Try putting one hand on your upper chest and one on your lower....the lower one should move more than the upper.
Sometimes air gets trapped in the lungs....have you tried pursed lip breathing. Breathe in gently, gently through your nose.....not a big breath...then gently gently out through your mouth with pursed lips. Repeat a couple of times. Then back to gentle nose breathing. Breathe gently as much as you can.
When you walked four miles, was your mouth shut , nose breathing. If you found you needed to mouth breathe....stop, relax, gain control and then carry on with nose breathing.
Dysfunctional breathing may cause hyperventilation, and the oxygen, carbon dioxide balance may get out of synch. Anxiety can affect breathing too. Have you tried relaxation techniques or meditation?
Have also your medications been checked......some inhalers do not suit me at all, we are all different.
Have you been offered cardiac and blood pressure tests....or blood tests? I was found to be anaemic which can affect breathlessness.
I would go back to your health professional and explain how you feel and ask for more help.
Take care and best wishes.
Sorry to hear how you feel Challny, Sorry i cant really offer advice, Try to look on the positives. Get checked out by your doctor or a Specialist who understands your condition Ring the BFL Nurse for advice. Focus on better days around the corner. Sure they will be coming soon Good luck BRIAN
Well you put most to shame with your long walks - I'm envious.
I've worked in tv for 54 years with all the highs and lows that you have undoubtedly experienced. When I'm in a dark place I take myself off to some of the most beautiful places that I have loved during my film career and simply relax into the memory...Probably sounds daft to some but it works for me. Worth a try I think so the very best of luck!
It is perfectly possible to have a non-infectious exacerbation caused by a trigger event. For some it can be as simple the smell of a perfume, a cleaning product or an aerosol. It is a hard task trying to work out just what are your particular triggers, trying to remember what you were around prior to your breathing getting worse. Just a thought.
Just read through all the thoughtful responses to my PFT question and I appreciate them. It's 4 a.m. here on the Gulf Coast and I'm up. I did sleep a little bit last night. A couple of things: I do have high BP but it's pretty well controlled with meds. I am SOB all the time. I guess I'm trying to determine if that is normal for someone with moderate emphysema. Someone mentioned my heart. That has occurred to me. I had a heart cath a couple of years ago after a cardiologist thought he saw something funny on my echocardiogram. But when they injected the dye, it flowed clearly through my system. But that was two years ago. Even I'm beginning to wonder if I'm not just crazy.
The eating is another concern, and this has been going on for some time. Yesterday I ate one egg and half a sice of toast for the entire day. Just no appetite.
Thanks to all of you, it is clear that I need to see a doctor again.
Something worth trying is a Cisca Salt Pipe. Google it. Found it simply brilliant.
Hi Chalny, you sound just like me. I can’t walk half a mile, although I do as much at home as I can. I don’t ask for results of lung function, it doesn’t help me, just depresses me, so I’ll carry on ignoring it! I’ve been far worse lately, maybe the air quality or pollen, but mostly inflammation of my airways. Steroids high dose for a week helps me, but generally I’m back to where I can go out for coffee, although I have to park right outside! My stats are normally 98-99%, and oxygen as needed! Anxiety over your result really can cause you breathlessness to increase because your muscle tense, you get anxious and it’s a vicious circle! Try to look at what you can do, not the results of your lung function. Big hug xxxx
That should read 88-89 02 sats!! Bloody predictive text! 🤣
Don’t know where you live, but in UK,A N E Depsrtent is not interested in my chronic conditions% try the GP
I would ask for a sputum test with a stain...they will grow a culture to make sure you haven't picked anything else up. I'd book an appt to see your respirologist asap...Ct scan if things don't get better
Hi Chaliny. I think that is fantastic 4 miles. Just a thought.
Is your house damp. If so check for any mould on walls ET's, behind cupboards bathroom. If you have it you need to get rid. Put a mask on get a soot brush with bleach on and brush the walls. And get a dehumidifier. Just a thought. Best of luck.
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