Am I Having an Exacerbation or Has My Lung Function Declined?

By Jackie English

2 min read

Oh my, this last month has been very stressful. My oxygen has been dropping and my heart rate has been skyrocketing. When I get up to do anything, my oxygen drops into the low 80’s, which is unusual for me.

The only time it usually drops that low is if I have been walking around without my oxygen to the bathroom, etc. or if I am doing a more strenuous workout than usual.

I have been so fortunate over these last eleven years not to lose lung function but to feel like this has been devastating. I have to remind myself that I have had way more years on these bad lungs than I thought I would.

When I started writing these articles in February, I was in such a good place. I was sharing my journey with everyone and staying so positive about everything and being able to share my articles with you all. I have been eating healthy and exercising to better my health, and now I can barely walk to the bathroom without my oxygen dropping.

Worries over COPD progression

Now, being so short of breath again and finding out that my CT Scan is worse than it was in January has been very discouraging. I’m hoping this is just an exacerbation but trying to prepare myself if there is no coming back from this.

I know I will get over this "poor me" moment, as I always do, and it will just take some time. I feel like I'm back feeling how I felt when I was first diagnosed.

I feel like I’m learning everything new again - asking questions and trying to keep my spirits up while not bringing my family down. I don't want them to worry about me, and I think them worrying about me is what bothers me most.

Oxygen numbers are improving

I have been to my pulmonologist, who did a six-minute walk test. You won't believe it. It was the best six-minute walk I have ever done. My oxygen stayed at 96 the whole time.

I have never done that before. The nurse was looking at me like 'Yeah right, your oxygen is dropping!' I guess I was just having a good moment because at home later that day my oxygen was dropping to 85 while walking to the bathroom with oxygen.

I have checked my machine, hoses, etc. for any problems. I have 3 different pulse oximeters and they were all reading the same.

More tests and scans

He also sent me to get a CT scan and an echocardiogram. The echocardiogram came back OK, and the CT was worse than my previous one in January (as far as the emphysema in the right lung). But everything else was the same.

No new nodules and the ones I already had haven't grown any more significant. I have yet to have a PFT done this year. Because of covid, I haven't had one since November of 2019.

I’m still waiting on that to see if my numbers have also declined. I’m anxious to see what that will say.

Does anyone else feel this way when you start to decline? I know I am not alone in this and I would love to hear your thoughts.

I think just writing this and getting it off my chest has helped. I feel much better than I did yesterday when I came to edit this article.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The COPD.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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Liana Collet Moderator
Hi Jackie. I can totally relate to your story. When I initially started declining with my emphysema issue, I became increasingly concerned. So to combat my anxiety, I worked harder at keeping my immune system strong and tried doing more actions strengthen my lung capacity. It takes alot of motivation and a really positive attitude to keep it up. I have learned to accept that my lungs will never heal. But I am in control of my destiny and I will be as proactive as I possibly can for as long as I can. Keeping you in my thoughts. Warmest regards Liana.( moderator )
1. CommunityMember292 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> Oh, my goodness! I was just enjoying Liana's article when I saw that we lost her. I know this is inevitable for many of us, but it is still scary and sad. There's no way to know how far along in this disease you are or what is a doable goal. Liana's positive attitude was priceless. 
2. Leon Lebowitz, RRT Member
 <inline-mention username="CommunityMember292" user-id="4668510"/> Hi CM292 - thanks for your kind words. I can easily understand what a shock this must have been for you to realize about our own beloved Liana. We were all saddened at her unexpected and untimely passing, late last year (2021). I am certain, though, that in some way, she is smiling down on us, especially as she knows that folks like you continue to enjoy her written word. We like to think she is living on with us through her meaningful writings. Warm regards, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
ca0drb Member
Jackie, I am the same way with the numbers only my 6 min walk was 2min 3 sec. I like your attitude and it is my attitude too. I am concerned at how long I can maintain it. So far I just go day to day.
1. Jackie English Moderator & Contributor
 <inline-mention username="ca0drb" user-id="2477352"/> thank you so much, I appreciate it! Hang in there and keep me updated. Best, Jackie (Author/moderator)
jeania Member
Did you do your 6 minute walk with or without O2? If it was without O2 and you stayed at 96%, I'm sure someone would have been a tad concerned! When you desaturate, is it when you stand up wearing your O2 and head out to do something or do you give yourself a bit of time to get your sats right up where they need to be? I think I'd talk in more detail with either the RT or the doc about that to try to figure out just what is happening since it doesn't seem to be consistent with what happened in the doc's office. Were you really short of breath even though your sats were good? That could be evidence of air-trapping. Just a thought....... 
1. jeania Member
 Maintaining your lung function doesn't turn out to have much of anything to do with how your gas exchange works. When you do have your PFT, one of the interesting things will be to see how your DLCO has changed. My FEV1 has been stable in the mid 30s since 2000, but the amount of O2 I need for various activities has certainly changed over the years, and that has to do with the gas exchange. It also has to do with the fact that while my FEV1 is still in the mid 30's, that does mean that the absolute value of what I can blow out has gone down, just like it goes down for everyone, so 30% of 100 is one thing, while 30 % of 75 is something else in terms of absolute value, and that makes a difference, too.
2. Jackie English Moderator & Contributor
 <inline-mention username="jeania" user-id="2437143"/> thank you, I didn’t think about it that way. My DLCO has declined a little. Thanks again, Jackie (Author/Moderator)
Jackie English Moderator & Contributor
<inline-mention username="Liana Collet" user-id="2446441"/> Thank you so much, I appreciate the feedback. Great tips! Best, Jackie
carolefla Member
I too am noticing my emphysema seems so much worse. I just moved from Florida to NJ. I did not have a pulmonologist in Fl because of location & insurance. I did not care for the only one I went to. Here in NJ, with my family I have much better care. After a week of being here I was in the hospital for 3 days. I just started with a really good Doctor so I’m more confident of being helped. That being said, In the last 6 months I am so much worse. When my doctor first saw me he said my emphysema was severe. When I left Fl I had to return my oxygen because the company was not in NJ. That was one of the reasons that I was hospitalized. I could barely breathe at the time. My next doctors appointment is in Aug. and I really worry that my condition has worsened. I’m just moving into my own apartment with the help of my family who have all been wonderful too me. Also, I have a new Great Grandson 6 months old. So at this point I want to enjoy life. So I understand anyone with my same concerns about the stage of their health. I am optimistic but the worrying in the back of my mind does not go away. I truly understand the limitations & yes sometimes the pain of emphysema.
1. Jackie English Moderator & Contributor
 <inline-mention username="carolefla" user-id="4198807"/> I'm so sorry that you are going through that. They should of never let you leave without oxygen, that is not ok. They should of made some type of arrangement for you. I'm so excited for you about your new great grandson. Enjoy your new apartment! Thank you so much for feedback, I really appreciate it! Best, Jackie (Author/moderator) 
2. njb Member
 <inline-mention username="carolefla" user-id="4198807"/> I have Inogen and moved from one state to another, no problem.
gruff9 Member
I think I know a little of what you're feeling. I'm 81 with really bad lungs, yet just two years ago I was walking every morning a mile to a mile and a half. Then I went downhill fast for no apparent reason (though sometimes I suspect the meds I'm taking but there is no proof of that and both my doctor and pharmacist deny it). Now I carry a bottle of oxygen with me or have one near me (I have four stationed around the house so can find one within a few steps. I keep wondering if I'm going to wake up one morning and find I died during the night. Hang in there. 
1. Jackie English Moderator & Contributor
 <inline-mention username="gruff9" user-id="2421690"/> wow, walking a mile is wonderful! I'm sure that has helped you to keep moving. I'm so sorry that you have gone down hill but glad that having oxygen has helped. Best, Jackie (Author/moderator)
Jeff Collings Moderator & Contributor
Great article Jackie as I'm sure alot of us have the frustration of trying to maintain our conditions which is similar to herding cats. We do our best to keep control, but sometimes there is just nothing we can do. I find writing about or even saying my struggles out loud takes their power away, and helps give some back to me. Your positive outlook is refreshing and has helped many of us and we're thankful to have you. Jeff (Team COPD.net)
1. Jackie English Moderator & Contributor
 <inline-mention username="Jeffrey J Collings" user-id="2436114"/> Good way to look at it! I have found it very helpful also. Thank you for the compliment, I feel the same about all of you! Best, Jackie
jcupdike Member
I have tried to grasp the term 'progressive' in relation to this illness, wondering if it's a minute at a time or something that just goes 'bonky' with a sudden development. My O2 is still acceptable (I am not on oxygen) but I notice it's a point or two lower than it was a year ago, depending on the time of day. But I am back on a treadmill at the fitness center and that's built up my stamina and wind, so I feel better overall. Still, inevitably that day will come -- hopefully they will have a treatment to slow it a little. We all hope that as sane humans. It's hard not to think about it and it's easy to worry. I think we are in a better place, oddly, after the CV-19 summer of 2020, because we masked up and maybe avoided some of the more annoying issues of bad air. I haven't had an exacerbation since September 2020. I do believe that we have to sustain exercise and good habits, even if they are a bit more of a challenge. Believing we are helping ourselves is one piece of the battle. "Progressive" does not have to mean the same thing as "onslaught." -- JCU 
1. Jackie English Moderator & Contributor
 <inline-mention username="jcupdike" user-id="2439678"/> Thank you for responding! I agree with you! Great input! Best, Jackie (Author /moderator)
granna Member
 @
granna Member
Are you on 02 or an oxygen concentrator when your SATs drop. Pure 02 is entirely different. My SATs drop to 85 when I switch back to my concentrator and start moving. Slowly goes back up to 97/98. Totally obscures my rehab stats. I've had weight gain and on 30mg prednisone. So I am struggling. I totally understand your feelings. Anxiety also contributes to the ability to breathe. Trying to work on my anxiety. Good luck to you. 
1. Jackie English Moderator & Contributor
 <inline-mention username="granna" user-id="2446168"/> They have dropped when I've been on my concentrator, tank or portable. Anxirty is a bugger usbt it. I've been working on that too. Thank you and good luck to you also! Best, Jackie (Author/moderator) 
2. Jackie English Moderator & Contributor
 <inline-mention username="maxinepotts" user-id="2452504"/> thanks for responding. You responded well here but if you look right above the article, you click on the comment button( looks like a cartoon balloon for when they talk) it will let you comment there. You just have to scroll down to the comment box. I'm so sorry that your emphysema has gotten worse. As I understand it when your oxygen drops below 88 for an extended period if time many of our body organs are getting as much oxygen that they need. This includes our brain, heart, lungs, cells, etc. This is a great question for your doctor. Keep is updated! Best, Jackie (Author/moderator)
loisS Member
I appreciate the way you take care of yourself and your willingness to be honest with yourself. Thank you for your honesty
1. Jackie English Moderator & Contributor
 <inline-mention username="loisS" user-id="2448024"/> thank you, that means a lot! Best, Jackie (Author/moderator)
beverlydemarco Member
HI JACKIE, YOU ARE NOT ALONE JACKIE, SOME DAYS ARE WORSE THAN OTHERS, I HAVE TO HAVE MY OXYGEN ON AT ALL TIMES, A LOT OF TIMES THE HOSE GETS STUCK ON THE DRAWER HANDLES IN THE KITCHEN OR AROUND THE EDGE ON THE KITCHEN ISLAND OR STUCK UNDER THE DOORS , ITS VERY UPSETTING BECAUSE YOU CAN FALL WHEN THE HOSE IS STUCK AND YOU ARE WALKING TO ANOTHER ROOM AND ALL OF A SUDDEN ITS PULLING YOUR OXYGEN OFF YOUR FACE,,THERE IS A COMMERICAL ON TV WITH A WOMEN THAT HAS OXYGEN ON AND CAN ONLY GO AS FAR AS HER HOSE LETS HER BECAUSE SHE HAS STAGE4 COPD., ITS A COMMERCIAL ABOUT QUITTING SMOKING.. I EVEN WEAR THE HOSE IN THE SHOWER OTHERWISE I CANT TAKE A SHOWER. I HAVE A PORTABLE ENOGEN. ONE. G3. THAT I USE FOR TRAVELING TO THE DOCTORS OR SHOPPING WHICH I DONT SHOP ANYMORE , ITS TOO EXHAUSTING SO MY TWO SONS AND MY SISTER DO MY SHOPPING, I WAS ALWAYS ON THE GO BEFORE MY LUNGS GOT SOOOOOO BAD AND HAD TO QUIT WORKING , I WORKED IN A RESTAURANT FOR 27 YEARS IN THE SMOKING SECTION WHEN THEY HAD SMOKING , SO I GOT A LOT OF SECOND HAND SMOKE TOO.. I ONLY WISH I COULD HAVE A COUPLE OF GOOD DAYS INSTEAD OF STRUGGLING EVERYDAY WITH THIS COPD, THIS IS NO QUALITY OF LIFE WHEN YOU HAVE TO DO BREATHING TREATMENTS ALL DAY ON YOUR NEBULIZER AND YOU HAVE TO EXERCISE BECAUSE IT DOES HELP WITH COPD BUT ITS VERY EXHAUSTING AND IT WEARS ME OUT. I TAKE IT ONE DAY AT A TIME BUT I DONT KNOW HOW MUCH LONGER I CAN HANG ON?
1. wandar Member
 <inline-mention username="beverlydemarco" user-id="2407285"/> Hi Beverly I can relate to your post. I have stage 4 COPD and I’m on oxygen 24/7 and walking around the house sometimes feels like I’m walking in a maze. I have stopped using the fifty foot cord because that one gets too tangled. I use a 25 & 15 ft cord with the 7 ft cannula. For some reason this set up works better. I also use my cord in the shower. I also use my nebulizer and carry my inhaler with me when I’m out and about. My Inogen G3 has been a God send. On good weather days I stay out at least 4-5 hours or 1-2 hours on others with my best friend or my aunt shopping, eating or just riding around. I take my time, pace myself, sit down when I need to and enjoy these outings. When I’m in the stores I use the shopping cart to hold my purse and Portable oxygen machine. I consider these days my exercise days. I usually don’t do anything the next day because I’m usually tired but I consider these outing my inspiration day, lift my spirit day and/or pick me up day. This is how I keep myself from getting sad about my illness or to not focus so much on my limitations. Like you I take it one day at a time and am just grateful for each day I make it through. Hang in there!
2. Leon Lebowitz, RRT Member
 <inline-mention username="wandar" user-id="2480605"/> Hi wandar and thanks so much for lending your support and encouragement here with the community. We also appreciate you sharing your own personal experience managing this condition. Your anecdotal stories are very helpful for all of us to read. Sometimes, it helps to see that others are having similar lives as the rest of us are. It is always a help to see that we are not alone with this disease. Your positive approach and 'can do' attitude can go a long way towards managing this condition. Keep up the good work! Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
beverlydemarco Member
HI GRUFF9, I JUST READ YOUR POST, WHAT IS BOTTLED. OXYGEN THAT YOU HAVE IN EVERY ROOM OF YOUR HOUSE? I STAY ON THE CONCENTRATER ALL DAY AND NIGHT WITH A LONG HOSE TO GET ME TO EACH ROOM, I USE MY PORTABLE OXYGEN MACHINE CALLED CALLED INOGEN ONE G3 FOR TRAVELING TO MY DOCTORS. THANKYOU
ruth P Member
I also am experiencing a decline. Off meds lung function is at 18%. I have good and bad days as well. My doctor recommended Cardio-Pulmonary rehab but with the amount of Covid delta variant and spread where I live,- I am reluctant to go over to the hospital where I don't have confidence in everyone being vaccinated. I live alone so get quite a bit of exercise just maintaining my home, cooking, cleaning. In addition, have a little exercise routine using a pedaler that sits on the floor and a 5 lb weight for my arms and chest muscles. I have an additional handicap from having the femoral nerve badly damaged in my left leg. I think all of us are just trying to find ways to cope with our issues. I don't expect to ever improve, and feel the best I can do is to maintain my independence as long as I possibly can. Fortunately, I can still drive and was able to purchase an Inogen to keep mobility. Masking means having to use O2 more often. 
1. Jackie English Moderator & Contributor
 <inline-mention username="ruth P" user-id="4170074"/> thank you for responding! It does sound like you do get quite a bit of exercise with maintaining your home and using the peddler. I have found a great online pulmonary rehab if you’re interested. It has helped me a lot. https://pulmonarywellness.org/members-only/?mepr-unauth-page=2934&redirect_to=%2Fbootcamp-home%2F. Hope this helps. Best, Jackie (Author/Moderator)
mas1 Member
I'm just now reading this issue and I am experiencing decline in my numbers despite getting back to the gym two to three times a week for the last 6 months. I also have been fighting an aspergilloma and won't have another CT until December. Like you, my drop in O2 happens when I walk out to another room or from the car to my destination. Kind of a downer.... 
1. Leon Lebowitz, RRT Member
 <inline-mention username="mas1" user-id="2403784"/> Hi mas1, and thanks for joining in the conversation here. I see the author of this article, my colleague, <inline-mention username="Jackie English" user-id="2415342"/>, has already replied to your comment. I do hope you have an opportunity to look over her comment when time permits. Since you mentioned the you are fighting aspergilloma - do you think this condition may have an effect on the 'decline in my numbers', which you also mentioned. The aspergilloma combined with the existing COPD, may be responsible for some of the symptoms you've shared here (drop in oxygenation when walking short distances and, declining numbers). You may want to discuss this further with your diagnosing physician in order to have a better understanding as to what's happening medically. Please do check back and keep us posted as to your progress. If there is anything we can do to assist you, please let me or any other moderator / team member know. Wishing you well, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. CommunityMember292 Member
 <inline-mention username="mas1" user-id="2403784"/> Hope your doc has you on an antifungal. Aspergillus is tough to eradicate unless you get right on it! Good luck to you!
kloker Member
Jackie - Good article! A lot to think about. 've been having a somewhat similar experience. When I first got home from the horse pistol back in May, I was barely able to even cast a shadow. But I had PT folks coming 4 days a week for a pretty good while, and I worked hard to get stronger and better, often overdoing it. But I really wanted out of that dark hole I was in. And I got much better! Stayed that way for a couple of months too, but then it seemed like the bottom just fell out and in a week I felt like I was right back at square one. Dangit! Been struggling since them to climb upwards again, with some success but not a lot. Then the Doctor came to see me last week. We talked about this in depth, and he asked a lot of questions, as did I. Then he told me the problem was my blood pressure med - Amlodipine 10mg. He said it was causing my heart and lung inflammation issues and cramps as well as the edema. He changed my BP med to Losartan Potassium 50mg. Now, almost a week later, the difference is big! I ain't completely out of the woods, but I have more energy, can do more for longer, and feel like I am making progress again. My BP is lower, my edema is dropping, the lung inflammation is lower, my appetite is better, and my cramps, especially my hand cramps, are way better, though I am still getting the nighttime ones in my legs some. But my hands had gotten so bad I could hardly eat or do anything with them. It was highly annoying and very painful. All of it is now better. I actually got a bunch of housework done today, which is good because I do not have a maid - I am the maid, and the cook, etc., and if I don't do it, it don't get done, though my neighbors come and help a lot. It had never occurred to me that my meds might be causing the problem, but that's what it was. So I have a solution, at least this time. And, of course it was something I wasn't even considering. We'll see how it goes over the winter. I hate winter. I was born and raised on the Equator (military brat) and have never been able to adapt to cold. Oh, well. Like Rosanne Rosanna Dana always used to say, it's always something. Good night everyone.
1. kloker Member
 <inline-mention username="Jackie English" user-id="2415342"/> Thank you! Yep, Tucson is a nice little town. I used to have friends there, but we lost touch years ago, don't know if they are still there or not. It may be that the edema, or what is causing it, is also causing the cramps. Today I learned something else new - ibuprofen can also cause edema! Dang. So I'm going to stop taking it and see what happens. The same Doctor who had me on the Amlodipine also had me on 2 ibuprofen twice a day. Geez, no wonder I have the edema issue! Crazy! In the late '70's I used to run Chicago out of Dallas, then to to Indiana and Ohio, back to Chicago and then back to Dallas every week, in a truck with holes in the floor and little heat. Later I ran the West Coast through Az, and had to detour while they rebuilt the damaged interstate in Phoenix. I can tell some stories about everywhere, because I've been everywhere. Like the Johnny Cash song!
2. Jackie English Moderator & Contributor
 <inline-mention username="kloker" user-id="4235094"/> I have never heard that about ibuprofen. I'll have to keep that in mind. Sounds like you've seen a whole lot of the US. I bet you have great memories of that. It sounds like you should write a book about your adventures. I'd love to read it if you did. Best, Jackie (Moderator)
bin there and dunit Member
 At school and during holidays from my job (up to 18 hour days!) I kept pretty fit. 2003 I noticed I was puffing a bit going up a steep hill which was a shock. 2005 got medicines but no info at all. (I put it down to Doctors' Secrets Act!). The dope kept me going up to about 2015 when I started gettin month after months of exacerbations; each was "cured" with antibiotics and steroids and it must have been about early 2019 when the consultant remarked with some surprise that he saw some emphysema. OK but I was getting fed up with these (swear word) exacerbations which seem only to raise drug companies profits so I took action. Wrongly or not I took the view that exacerbation is a technical word for an infection and separately that the body has a built-in infection fighting mechanism which was being hit by the steroids and antibiotics. I took appropriate action and as from September 2019 I have had a single very mild exacerbation instead of perhaps 10 or 12 bad ones. Normal daily drugs unchanged plus daily a bit of cheap stuff out of the supermarket - simple. Yes, I am going downhill - in the mornings I am sometimes a bit breathless at the gym and I do occasionally have phlegm but after 9 am I am generally OK. As for doctors, tests etc - I have blood pressure monitor but no O2 meter but as for trying to see doctors - a minimum 14 day delay for a phone appointment (even when I messed my ankle up!) so I don't bother but sort things out myself.
1. Jackie English Moderator & Contributor
 <inline-mention username="bin there and dunit" user-id="4279910"/> Thank you for sharing your experience with us. It is always good to hear how everyone else is handling things. Best, Jackie ( Moderator)
2. cera Member
 <inline-mention username="bin there and dunit" user-id="4279910"/> I hear you loud and clear. I am currently on steroids and antibiotics for the umpteenth time and I think your points are valid, especially that "exacerbation is a technical word for an infection and separately that the body has a built-in infection fighting mechanism which was being hit by the steroids and antibiotics." I am worse now than when I started and cannot get an apt. with my pulmonologist, nor with my primary doc who knows my complicated history. So I will be seen by the doctor I saw in Urgent Care who probably does not have hours to read my related diseases. I would love to know what you got at the grocery store that helped. Mucinex?
beverlydemarco Member
HI JACKIE ENGLISH, I FEEL THE SAME WAY YOU DO, I FIND THE WORST TIME FOR ME IS IN THE MORNING WHEN I GET UP I AM SOOOOOO OUT OF BREATHE AND HUFFING AND PUFFING LIKE I WAS TAKING MY LAST BREATHE? I GET UP VERY SLOWLY AND I AM ON OXYGEN 24/7 BUT I GET THESE ANXIETY ATTACKS WHEN I GET UP, I REACH FOR MY ENHALER RIGHT AWAY, THEN TRY TO GET DRESSED AND COMB MY HAIR AND MAKE MY BED WHICH IS ONLY A COMFORTER THAT COVERS THE BED , I ALWAYS HATED A UNMADE BED! I GO OUT TO THE KITCHEN WITH MY WALKER AND MAKE MYSELF TEA AND I HAVE A JIMMY DEAN BREAKFAST BACON &EGG BISCUIT, THEY ONLY TAKE 90 SECONDS IN THE MICROWAVE AND ARE PRETTY GOOD, I HAVE MY JUICE AND PILLS & PRESCRIPTIONS AND THEN RELAX AND READ THE MORNING PAPER, BY THIS TIME I AM CALM DOWN, ITS NOW 11.30 AM AND TRY TO DO A LITTLE EXERCISES IN MY RECLINER AND WALK UP AND DOWN MY HALLWAY FOR A COUPLE OF. MINUTES, I HAVE HOME HOSPICE CARE THREE DAYS A WEEK WHICH HAVE BEEN SO GOOD WITH ME, I HAVE TWO PHYSICAL THERAPY AND ONE SPEECH THERAPIST THAT HELPS ME WITH BREATHING AND LUNG EXERCISES. MY INSURANCE COVERS ME FOR TWO MONTHS AT A TIME BECAUSE ALTHOUGH THEY ARE A HOME HEALTH CARE THAT WORKS WITH HOSPICE I HAVE TO BE EVALUATED EVERY TWO MONTHS. SOMETIMES THEY TAKE THEM AWAY IF I HAVE LITTLE IMPROVEMENT BUT THATS WHEN I GET THE ANXIETY ATTACKS AND END UP BACK IN THE HOSPITAL, I WAS IN THE HOSPITAL IN APRIL ON EASTER SUNDAY BUT SO FAR I MANAGED TO STAY OUT ESPECIALLY WITH COVID. FULL OF PATIENTS IN THE HOSPITAL. I TAKE ONE DAY AT A TIME, MY FAMILY, MY SISTER, AND MY SONS ARE SUCH A BIG HELP.. I AM REALLY SURPRISED THAT I MADE IT THIS LONG,? I DIDNT THINK I WOULD MAKE IT FOR CHRISTMAS BUT I DID SO FAR, PRAYERS HELP ME TOO! HOPE EVERYONE FROM COPD. STAFF, MODERATORS, AND COPD FRIENDS HAVE A WONDERFUL CHRISTMAS AND HAPPY NEW YEARS. THANKYOU ALL FOR GETTING ME THROUGH ALL THA BAD DAYS. LOVE YOU ALL, BEVERLY DEMARCO 
1. Leon Lebowitz, RRT Member
 <inline-mention username="beverlydemarco" user-id="2407285"/> Hi Beverly - I'm so pleased to see you joining in the conversation here again. It's been a while since we hear from you - glad to read your story, above. You are indeed fortunate to have the support and love from your dear family - they truly adore you - that is clear from all the different ways you've spoken about them here with us in your posts over this period of time. Keep looking forward to the holidays, Beverly - yours will be especially good this year, I'm sure. Warmest regards to you!! Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. Jackie English Moderator & Contributor
 Hi <inline-mention username="beverlydemarco" user-id="2407285"/> ! Thank you for responding! Darn anxiety, it sure can hinder us, can't it? It sounds like you have a very busy morning that keeps you moving, good for you! I'm so happy for you that you have hospice and home care come in to help you. So glad to hear that you have managed to stay out of the hospital for the most part too. It's wonderful to hear that you have family that helps you also. Hugs and prayers back at you. 💜🙏 Thank you for the uplifting words! Best, Jackie (Author/Moderator)
ladydi3571 Member
This is so timely for me. I am currently struggling with this lately, not to the same degree. Your comments are very helpful and I don't feel so alone with this dreaded disease. 
1. Jackie English Moderator & Contributor
 <inline-mention username="ladydi3571" user-id="2422915"/> I'm so sorry that you are going through this but happy that you have this article and comments to see that you are not alone. Hugs! Jackie (Author/Moderator) 
2. Leon Lebowitz, RRT Member
 <inline-mention username="ladydi3571" user-id="2422915"/> Hi ladydi, and thanks for your post! Like my colleagues, <inline-mention username="SamanthaSarube" user-id="4200412"/>, and <inline-mention username="Jackie English" user-id="2415342"/>, I am sorry for what you are going through. Please know we are here to help and provide support in any way that we can for you. If there is anything we can assist you with, please let me or any other moderator / team member know. You are always welcome here in our online community! All the best, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
nann1211 Member
My lung function is becoming less and less every year. When I visit the doctor it always seems to be on one of my good days and they never see the day to day trials I have. It’s very disheartening when I tell them how I have issues, yet perform like Wonder Woman when I test for them. 
1. Jackie English Moderator & Contributor
 So sorry to hear <inline-mention username="nann1211" user-id="4181311"/>! I have been through the same. When I had gone to an appointment and the nurse walked me back to the room with the pulsox on I did so well. Better than I have ever done when every day the week before I would drop into the 80’s just walking a few feet. It can be so frustrating. Here is an article about journaling that I think can be helpful. Keeping a journal for yourself can be beneficial to you and your doctor. <a href='https://copd.net/living/health-tracking-journal' target='_blank'>https://copd.net/living/health-tracking-journal</a>. Hope this helps! Best, Jackie (Author/Moderator) 
2. CommunityMember292 Member
 <inline-mention username="nann1211" user-id="4181311"/> I have noticed that too. In my case, it is probably because I sit and wait for my busy doctor at least a couple hours. Since I've been inactive, he's not gonna see how I struggle coming in from my car, carrying my purse and water bottle. Frustrating! I never know exactly when he is coming into the exam room, so I can't do a quick walk test before he gets there showing how hard activity is for me. 🥵 Mary Lyn
Jaci Member
I just went thru a down turn. All I could manage was the bed to the bathroom. Oxygen dropped and pulse sky rocketed. My doctor got in home care for me and put me on an oxygen concentrator. I had OT and PT. After 7 weeks I can get around the house on a 50 ft. hose. With oxygen machine on 2 I'm holding around 95 and pulse between 92 and 94 at rest. When I get up and move I might drop to 90 and pulse goes to 120 but I recover pretty fast when I stop moving. Getting better every day. I know I'm on borrowed time and just doing it a day at a time. If I get into feeling sorry for myself, I find someone I can send a happy message or mail a card. Each day is a gift. 
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="Jaci" user-id="4172052"/> ! I’m so happy to hear that you are doing better. What a great idea for you to send out cards. It does a body and mind good to help others. You’re so right, each day is a gift. Best, Jackie (Moderator) 
2. SamanthaSarube Community Admin
 <inline-mention username="Jaci" user-id="4172052"/>, I hear how stressful and overwhelming this time must have been for you but I echo, Jackie when I say I'm glad to hear you are feeling a bit better! All we can do is our best each day. Enjoy the good days and offer ourselves grace on the bad days. Wishing you a peaceful day. All the best, Sam S. (<a href='http://COPD.net' target='_blank'>COPD.net</a>, team member).
Bixd Member
 Thanks for article, Jackie. I can relate. Before the Pandemc, I went to the gym daily and the hardest thing I did there was walk in. I had two heart attacks before I was put on oxygen, and I wear a pulseometor around my neck like a crucifix. I tell most people I am almost normal sitting down -- but going into the shower --for about five minutes, will knock my 02 down to 82 and my pulse up to 125. But I sit at the edge of bed, look at my numbers, and then sit there a breath -- in about three minutes I can get my numbers back to acceptable -- before I put the 02 back on. Since beginning the breathing exercises about a year and a half ago, I have gained ground, especially sitting or lying down (I force myself to get vertical as often as I can). We have a wheel chair and I use it to push my wife around when we shop, and then if I run out of air, I sit down and recover quickly. My biggest problem is lack of energy in the afternoon or evening. 
1. Jackie English Moderator & Contributor
 Same here <inline-mention username="Bixd" user-id="4541955"/>, thank you for sharing your experience with us. Best, Jackie (Author/Moderator)
galexa Member
Thank you for writing my thoughts! You write well. What you said could probably be anyone of us! I remember I laughed when they said that I would have to do a six-minute walk! Are you kidding me? Let's get serious; I can easily do a twenty-five-minute walk. Well, that was then. I have to do a six-minute walk for a procedure in June. I dread having to do it as my numbers drop, and in my practice, I take a five-minute break at the 3-minute mark. Well, again, thank you for your article. I wish you the very best. I look forward to your next article. I hope you have that miracle we are all hoping for.
1. Jackie English Moderator & Contributor
 Thank you so much <inline-mention username="galexa" user-id="2429365"/>, I appreciate the compliment so much! 🥰 That's another great thing about <a href='http://COPD.net' target='_blank'>COPD.net</a> is that we are all going through a lot of the same things but some are just at different stages. Also, thank you for sharing your experience with your Drs office! Best, Jackie (Author/Moderator)
katek Member
Jackie, T I haven't had a PFT in about 3 years, I know I need to get one, my issue is that my old pulmonologist told me that we may never have an accurate assessment of my lung function because I only have 3 lobes. I lost both upper lobes to lung cancer. I do have a small spirometry unit at home that I started using before my flair up. My first readings were FEV1 <a href='http://1.94L' target='_blank' rel='noopener noreferrer ugc'>1.94L</a> and PF 259L/m. I have been checking it once a week, my lowest was a bit over a week ago at 1.39 and 151. My last one yesterday was 1.49 and 174, so my lungs seem to be slowly recovering. 
1. katek Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> I am seeing him at the end of the month. I will let you know how it goes.
2. Leon Lebowitz, RRT Member
 <inline-mention username="katek" user-id="2442382"/> All good, katek - we will look forward to hearing back from you following your visit with the new doctor. Of course, our present conversation(s) can continue now as well. Regards, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
bogangles Member
wow These articles are so helpful. I don't feel as alone as I did. Best wishes to all of you.
1. Leon Lebowitz, RRT Member
 <inline-mention username="bogangles" user-id="4518966"/> Hi again, bogangles - it's always good to converse with you here in our online community. I think you'll find that one is rarely, if ever, alone here! You are always welcome here in the community. Warmly, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. bogangles Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> Hi Leon, can you tell me how to sing in
deegee Member
I am feeling so much the same and feel like I do need to write those letters because I can feel decline. My family needs to be ready and I am not sad because life has been so very colorful.
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="deegee" user-id="2418881"/>! I think it's therapeutic to write them also. I'm happy to hear that you are not sad and that your life has been very colorful. I feel the same. Thank you for joining in the conversation. Best, Jackie (Author/Moderator) 
2. CommunityMember292 Member
 <inline-mention username="deegee" user-id="2418881"/> What a positive attitude. How do you do it? I too feel the decline in the past two years during the pandemic. I'm trying to decide how to handle that. Hopeful that I can get stronger again? Or is it more realistic to let it be and stop trying so hard...
Bixd Member
 Hi, Jackie. This post is almost a year old, so I hope you are still with us. I am 75 and lost two people to cancer in the last month. The business about changing condition in a short period of time was very real to me. There is an internet site that says if the 02 level reaches 85, call an ambulance. If I did that, I would be riding up to the hospital three times a week and the medical industry would own my house. I hope you are doing well. 
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="Bixd" user-id="4541955"/>! I am doing well, thank you! I did have 2 bouts of pneumonia this spring but feel so much healthier right now. I'm back to my normal routine and exercising. I hear you with the 85. Hopefully, yours don't stay there for long. I usually recover pretty fast after I drop. I hope it's the same for you. Thank you for sharing and asking about me. Best, Jackie (Author/Moderator) 
2. whirledpeas Member
 <inline-mention username="Bixd" user-id="4541955"/> I hear you about the O2 levels! I freak out at 59, but the 80s and even high 70s are a common occurrence, so I don't get too bothered in the 80s.
beverlydemarco Member
HI JACKIE ENGLISH, I JUST READ YOUR POST ON COPD TODAY, YES , I AGREE WITH YOU THAT SOME DAYS ARE SO HARD THAT I WORRY IT WILL BE MY LAST DAY, I CANT TAKE MY OXYGEN OFF AT ALL? I USE TO WALK AROUND MY HOUSE AND USE THE TREADMILL AND EXERCISE BIKE BUT THESE PAST COUPLE OF MONTHS HAVE GOTTEN WORSE, I AM ALSO HAVING ISSUES WITH MY STOMACH WITH BLOATING AND GAS, I HAVE HAD A COLONOSCOPY AND ENDOSCOPY IN MAY AND ALSO A CAPSULE ENDOSCOPY TO SEE WHAT THE PROBLEM IS BECAUSE MY STOMACH HURTS WHEN I EAT AND I GET VERY BLOATED? I HAVE TO TAKE A PRESCRIPTION 30 MINUTES BEFORE I EAT ANYTHING IN THE MORNING.I AM DOWN TO 96 LBS AND I AM 5.7 TALL, I LOOK LIKE A TALL STRINGBEAN. I HATE LOOKING LIKE THIS, I HAVE HAD COPD SINCE 2005 BUT IT GOT WORSE BECAUSE I WORKED IN THE SMOKING SECTION AT I.H.O.P. FOR 25 YEARS. I RETIRED FOUR YEARS AGO BECAUSE I WAS HAVING NO ENERGY AND RUNNING OUT OF BREATHE. I WAS PUT ON OXYGEN THREE YEARS AGO 24/7. , I ALSO HAVE A PORTABLE OXYGEN I USE TO GO TO THE DOCTORS, MY SISTER TAKES ME TO ALL MY APPOINTMENTS AND SHOPS FOR ME TOO., MY TWO SONS COME OVER EVERYDAY TO MAKE SURE I EAT AND THEY BRING ME LUNCH OR DINNER, THANK GOD THEY LIVE A COUPLE OF MINUTES FROM ME, THEY ALSO BOUGHT ME " LIFE ALERT " TO BE SAFE AT HOME ALONE. SO JACKIE I AM DOING THE BEST I CAN AND TAKING ONE DAY AT A TIME. I ALSO HAVE HOME, HOSPICE CARE THREE DAYS A WEEK ORDERED FROM MY WONDERFUL DOCTORS. HOPE YOU AND ALL MY COPD FRIENDS ARE HAVING A GREAT DAY, P.S. PRAYERS HELP TOO! THANKYOU, BEVERLY DEMARCO I I 
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="beverlydemarco" user-id="2407285"/>! It sounds like you have a lot going on. I hope they can find the answers to your stomach problems. My jobs contributed to my COPD as well. If we only knew then what we know now, right? I'm happy to hear that your some come and help you every day and that they don't live very far. I'm also glad that you have hospice to help you out. Both of my parents had hospice and loved their caregivers. I agree that prayers do help. 💜🙏 I am having a great day, thank you! I hope you are too. Thank you for sharing your story with us. Please, keep us updated on your stomach issues. Best, Jackie (Author/Moderator)
jewelln Member
Have you looked into possibility of getting the zephyr valves implanted in your lung(s)? I had the procedure done last October and I feel like I got my life back. Before the procedure I wore my oxygen most of the time. If I was sitting and being quiet turn off the oxygen but had to wear it again if I engaged in any activities. I now only use my oxygen at night while sleeping, at the gym for my 1 mile daily walk, and when walking around large stores like Sams or Walmart. I don't need it to walk around the smaller stores though I do walk slowly. Occasionally I wear it when preparing dinner, but only if its requiring alot of activity. My PFT test results 4 months after the procedure were the same as the first PFT test I had had when first being diagnosed with COPD
1. Leon Lebowitz, RRT Member
 <inline-mention username="bogangles" user-id="4518966"/> Hi bogangles - thanks for your post and question -it's a good one. The endobronchial valve procedure is designed, for those with a COPD diagnosis who are good candidates, to help improve one's breathing. It is not necessarily for every patient but, for those who qualify, there have been good reports following the procedure. Some of our own community members here (at <a href='http://COPD.net' target='_blank'>COPD.net</a>), have had the procedure performed and shared their stories with us here. For your convenience, here is a link to several of those articles: https://copd.net/search?s=endobronchial%20valve%20procedure. I do hope you find the information is helpful in a practical way. Wishing you well, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. Jackie English Moderator & Contributor
 Hi <inline-mention username="bogangles" user-id="4518966"/>! A PFT is a breathing test that measures your lung function. Here us a great article that explains the valves. I hope this helps! <a href='https://copd.net/clinical/endobronchial-valve-system' target='_blank'>https://copd.net/clinical/endobronchial-valve-system</a>. Best, Jackie (Author/Moderator)
Jannynet Member
I hear you! Your article could be me without the scan. I think COVID has done a big number on us by disrupting our normal ebbs and flows of COPD. We keep it to ourselves more because all of the attention on COVID and, for me, the fear of getting it. I know all of the exercises necessary yet I'm not doing them. I really want a distraction from all the health stuff and some simple joys each day, and to share them with friends.
1. Jackie English Moderator & Contributor
 That sounds like a great place to live <inline-mention username="Jannynet" user-id="4163583"/>. I appreciate you sharing that with me. I think if my husband ever passes before me that I’d love to live in a a independent living facility. He's not much on socializing so he would hate it. 😂
2. Melissa.Arnold Community Admin
 <inline-mention username="Jackie English" user-id="2415342"/> That's funny. Opposites attract, right? I would also look at a senior community if something happened to my guy -- I have mobility issues, and I'm sure that will become more interesting as I age, ha. I love the idea of being on my own, but having someone to call in a hurry if I need it, as well as physical therapy or transport. A girl can dream! Of course, my prayer is that I will always have my husband around!! -Melissa, <a href='http://copd.net' target='_blank'>copd.net</a> team
Jannynet Member
<inline-mention username="Jackie English" user-id="2415342"/>
flp01 Member
I also have problems with breathing that seems to have gotten worse in the last few months. I had a CTSCAN and some of the bullae in my lungs did get larger so I now know what is causing my oxygen levels to drop to 75 when I move 
1. Leon Lebowitz, RRT Member
 <inline-mention username="datch" user-id="2404717"/> Hi datch - thanks so much for your candor - sharing your experience managing this disease with the community! It must be comforting to have such a devoted, compassionate and loving wife, as well as a large, engaged and supportive family. My heart goes out to all of you! Please know if there is anything we can do to assist you, just let me or any other moderator / team member know. We are all in your corner! Warmest regards, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. Jdh71 Member
 <inline-mention username="datch" user-id="2404717"/> God bless you my friend...
jcupdike Member
I am in decline as well And of course, I worry. We are all told that worry makes it worse. People who can breathe think we can just shut off the fear like we would a movie that was disturbing. To that end, I have to remind myself that I don't want to speed up the decline, that there are things I can do and that I need to prepare for the moments when I won't be as healthy as I was just yesterday. The hard part of this is that COPD seems to live on its own terms and it imposes that on me whenever I want to think I am winning. Just don't be so cocky, it's telling me. I have no advice or intellectual cheerleading to offer. I know it's hard to try to relax and not worry. That applies to me at 3 a.m. when I wake up wondering, was that a bad dream or did I just lose my breath? I think it does help when people around you have stepped up and chosen to be supporters instead of unbiased and uninformed onlookers. -- JCU 
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="jcupdike" user-id="2439678"/>! I hear ya. Some just don't get it. I feel the same about COPD telling us about being cocky..😂 just when we feel like we are doing so good it can come knock us down a notch. It does help when we are supported. Wish everyone could be that way. Thank you for sharing! Best, Jackie (Author/Moderator) 
2. CommunityMember292 Member
 <inline-mention username="jcupdike" user-id="2439678"/> Wow! You said it! I completely agree. It sounds foolish when I say I'm afraid to get my hopes up, but I have gotten worse since I've been away from the gym all during the pandemic. I see and feel the decline. Not sure how much I can recapture. Makes me scared. I have lived with this disease since the 80's and probably had childhood bronchitis before that. I guess I'm lucky to still be here.
bogangles Member
It was so good to read all these comments. I keep forgetting how to log in. All of your stories are so amazing. What a relief to read all of them. What a wonderful group of very strong people. I haven't been feeling the best lately, just want to sleep a lot. But I don't. Reading all of this has helped. Maybe someone can tell me how to log in. There is a lot I read here, that I have never heard of.. Thank you again Bogangles 
1. bogangles Member
 <inline-mention username="Jackie English" user-id="2415342"/> WOULD you know anyways to boost my numbers
2. Jackie English Moderator & Contributor
 Hi, <inline-mention username="bogangles" user-id="4518966"/> ! Good to see you back on. What numbers are you referring to? Your lung function? Pulmonary rehab, good nutrition, and breathing exercises are the best thing you can do for your lungs. You may not bring it up number eise but you sure can feel the difference in your breathing. I hope this answered your question. Best, Jackie (Author/Moderstor)
TjLinn Member
Greetings, my oh my does your post ever resonate! I was diagnosed in 2013 but the actual degree of damage was kept from me by my regular dr. It wasn’t until I went to the pulmonologist 8 yrs later that I was informed that I was stage 4 with 20% lung function. Sad to say but I’ve been declining since then. Trying to remain positive and upbeat is challenging when you’re so exhausted and tired all the time. I have a very strong relationship with my Jesus which contributes enormously to the hope that remains. I am raising 3 young grandchildren ages 9, 7, and 5 and 1/2. Just keep praying for a miracle.
1. Jackie English Moderator & Contributor
 Oh my goodness, <inline-mention username="TjLinn" user-id="4163557"/>! You are dealing with a lot. I'm so sorry that your Dr kept that from you. I don't know how you do it but it's probably what keeps you going. I watch my grandchildren throughout the week. I can't imagine raising them. Take care and keep us updated. Thanks for sharing! Best, Jackie (Author/Moderator)
Bixd Member
 Jackie English: I appreciated this article, but reading this and the comments below, I was pretty amazed at things like C-Scans and visits with doctors. The pulmonologist I have won't even give me lung tests. He and his staff come in and give me clip-board medical advice: "COPD is a progressive disease, so this is what we have expected." The doctor who prescribed me 02 back in 2015 did not even bother to write down the settings. All the comments about people seeing their doctors amazes me. I have a PCP and he is a pretty good guy, but he tells me that I cannot change lung doctors because of covid. The US medical industry is a cruel joke. Most of the people who comment on this site seem to have better luck than I do with American doctors -- and that is great. My own personal belief is to stay positive and calm when the 02 dips and the pulse races. That means it is time to sit down, breath slowly. My biggest problem is that I am pretty normal sitting down. I can drive my 02 to 82 by taking a shower without 02, but I come out of that and lay down on the bed, with the 02, and I am fine in moments. But if you think about it -- most of know the difference between lower lung function (in my case, I can only guess) and an exacerbation, which is air hunger -- and whether it come from panic or leads to panic -- I think it is rather obvious that one has to do with general decline and the other (exacerbation) is something that requires treatment immediately. In my case, I have a nebulizer that I don't use, because I know it will bring me out. I have a friend, in serious decline, that uses his two or three times a day, along with steroid shots. He can't go to a store, I can. Part of it doing what you can when you can. 
1. Bixd Member
 <inline-mention username="CommunityMember292" user-id="4668510"/> Thank you for your concern. I was out of country from 2002-2004, and then from 2009 to 2015. In the latter period I had really good health insurnace -- but what you don't understand is healthcare is not like this in the rest of the world. I have had medical aid in nine different countries -- some of it was covered by insurance, some of it wasn't. I am 75 years and have been denied health care twice in the last two months -- once by telephone and once in the office -- after they called me to reschedule which I could not do to keep an appointment with a lung doctor who wanted me to come early (or his staff did to keep his schedule full). I experienced sudden hearing loss -- it took me a month to get it (after being denied an appointment because of having the wrong insurance) and the guy said, "we have to do an MRI, so I will see you in three weeks." His office person did not schedule the appointment, but said I could contact her via e-mail -- being deaf and having a 67-year-old wife who is not a Native English Speaker, I don't handle telephones well. So I wrote her an e-mail and got the response, "we don't respond to e-mails because we are busy onthe telephone helping other patients. We will respond within 24 to 48 hours." That was five days ago. I am not afraid and cringing. I have a nebulizer and don't use it. But everything in medicine in the United States is just business. Accept that, and cast your fate to the wind -- your medical institution -- where the support staff outnumbers the trained medical professionals about six to one -- already have. Take care now, and be careful about the feel good pills the insurance companies are feeding you. 
2. a-jeanne-7 Member
 <inline-mention username="Bixd" user-id="4541955"/> m ,maybe, i m so fed up with doctors, its all about them making money doctor is in the office once or twice a month. today Doctors are in large groups and move to different towns, i m not comfortable with that. also calling i get a machine and i might get a assistance to call back in 3 days
bogangles Member
Anyone, when I leave here, what do I do to get back in.. Where do I go thank you
1. SamanthaSarube Community Admin
 <inline-mention username="bogangles" user-id="4518966"/>, when you leave the site, to get back in you can type <a href='http://COPD.net' target='_blank'>COPD.net</a> into your browser, then in the top right corner you can log in and get into your account. From there on your profile will be a dashboard of all the comments you have made and any replies you've gotten. I hope this helped! Please let us know if you have any other questions. All the best, Sam S. (<a href='http://COPD.net' target='_blank'>COPD.net</a>, team member).
mech51 Member
I was diagnosed in 2013 with COPD, plus 2/3s of my left lung is a giant bula. I had been doing pretty good on my O2 at 3 liters until last year. I have noticed the weather affects me most. And I do good in the mornings on up till noon, then it's down hill from there. I have to do regular breathing treatments to keep things open. I have noticed an increase in phlegm over the past year. I'm wondering if I had a touch of covid. My wife had it but with little symptoms. If I did I never knew it. Other than the increase of phlegm. Now my O2 is set at 4 liters and my level is around 94 to 95% resting. When active my level drops to anywhere from 92 to 88%. I try to stay as active as I can, I still cut my own grass and drive my tractor but I have my O2 bottle strapped to it. I have done better than I expected to do. I think only by the Grace of God I'm still here. But like I told my pastor this past week, I'm ready to go when the Lord is ready for me. Thank you Jesus. Tony
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="mech51" user-id="2477296"/>! I feel the same. We've got to keeping moving. 
2. CommunityMember292 Member
 <inline-mention username="Jackie English" user-id="2415342"/> As they say, the less you do, the less you're able to do. Still its twice as hard to do stuff so short of breath!
CommunityMember2602 Member
You wrote this article with words that many of us need to hear. It is a disease that progresses even thought we are doing all the best things for ourselves. It's good to tell others what you have been through and are going through. Thanks for some good inside information it will touch many who need to hear it! 
1. Leon Lebowitz, RRT Member
 <inline-mention username="CommunityMember2602" user-id="2407551"/> Hi CM2602 - thanks for lending your own support and encouragement here with the community. We value both your feedback and your input as well. Enjoy the rest of the weekend! Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. Jackie English Moderator & Contributor
 Thank you, <inline-mention username="CommunityMember2602" user-id="2407551"/>! I appreciate the feedback and agree that we all need to share our experiences to learn from each other. I do hope it touches all who need to hear. Best, Jackie (Author/Moderator)
CommunityMember2889 Member
There is not much worse than not being able to breathe.
1. Jdh71 Member
 <inline-mention username="CommunityMember2889" user-id="4834624"/> 
2. Jdh71 Member
 You got that right. Scary sometimes. Just do your best sucking in the air through your nose and hold as long as you can up to 4 seconds and blow out w pursed lips. Helps slow the racing heart. I never really understood the meaning behind "smell the Rose's and blow out the candles"...I do now.
bin there and dunit Member
 I suspect that attitude can ave a marked effect. Doing your six minute walk your concentration was no enjoying the walk and I suspect that you never even thought about becoming breathless. There was a time when I couldn't walk 50 yards without becoming breathless because I expected that result. Now, apart from other exercises, I do walk (on a treadmill usually) for up to a mile and a half, just thinking about being bored silly and how do I finish this to do other things. At the end a few deep breatahs and I'm fine. It's no secret that a couple of years ago I got fed up with constant exacerbations and decided to stop. OK so no exacerbations but the twice daily breathing tests do show a decline over time though, for me, I suspect old age will intervene unless...... The "unless" is that my method depends on the body's inherent healing powers which, according to microbiome experts, come from bacteria in the gut. These are now being affected / killed by the antibiotic I have to take for an infected cut (lesson; don't start building a brick wall for your son when it is 40C !) An American "grandmother's" advice got me through last time so hopefully I will be OK now. Back to para one above; it is all about attitude! 
1. Jackie English Moderator & Contributor
 I agree <inline-mention username="bin there and dunit" user-id="4279910"/> . Thank you for sharing with us. It sure is all about the attitude. Best, Jackie (Author/Moderator)
CommunityMember292 Member
Dear Jackie English, I am currently in the same situation. I don't know how to tell whether this is another exacerbation or a permanent decline. How do we know for sure? 
1. CommunityMember292 Member
 <inline-mention username="SamanthaSarube" user-id="4200412"/> Thanks. I had my yearly PFT 's last week. When I see my pulmonologist, I'll probably put some value on those results. It also included a 6 minute walk test. My O2 averaged between 87 and 90. Has been better, could be worse. Does it sound silly to say I don't want to keep my hopes up if I can't get any better? I'm usually a fighter, but I'm tired and discouraged. 
2. SamanthaSarube Community Admin
 <inline-mention username="CommunityMember292" user-id="4668510"/>, I hear how exhausting it is to contend with COPD and to stay hopeful. I think it is important to be realistic but also maintain hope that things can get better. Hopefully, you are able to talk with your doctor to see what options are out there to help control your symptoms after your tests next week and you feel a bit better about things. Please check back in and let us know how it goes! We are here to offer you any support we can. All the best, Sam S. (<a href='http://COPD.net' target='_blank'>COPD.net</a>, team member).
Jdh71 Member
Jackie English, I hear you LadyBug. I've been experiencing a lot of what you wrote about: pulse ox numbers going down to 88, heart rate 90, panting, feeling as though I'm not getting enough air when I do deep breathing, oxygen levels going up and down and being confused on what amt of liters I need and absolute fatique. I was in ICU for 8 days, 6 days in hospital rm in November. Respiratory Failure for the first time. On BiPap; can't do a ventilator (would never come off of it). C02 levels at 38. No memory of first 3 days. Before this, I was never on oxygen, ever, except in the hospital. I remember a nurse telling me that too much oxygen could have adverse affects, one of which is building up C02. I have dizzy spells, triple vision and fixing breakfast is like a marathon. By the time I take out what I'm going to eat, I have to go lay down to recoup b4 I can actually make breakfast. I usually do a neb first. On my 2nd run, i can usually complete the meal prep. I also find that w/out chewing gum, my mouth gets horribly dry, can't swallow and it affects my breathing (panting). I also find that food helps w the fatique temporarily in the morning. I like to include protein, fruit and a few carbs w some amount of calories bc I have a tendency to drop 5 lbs in 5 days if I don't consistently eat. Eating is problematic: I eat small meals, wait 30-40 min. and feel so full that I literally can't breathe. I have a very flat diaphragm which seems to sit on my stomach content or vice versa. I take an anti acid or gas ex which helps sometimes. I can bank on this response after every meal. I have good days, bad days. Some mornings I can just breeze into the kitchen w my oxygen on 1 liter and do breakfast w/out an effort...sometimes... Then, there are days it takes 3 trips to the kitchen to put a meal together w breathing breaks. Go figure. In the last few weeks I've been waking up about every 2 hrs, either wheezing or coughing and have to pee. Do a neb and try to go back to sleep. Sleep deprivation creates anxiety throughout the day bc I'm tired and get anxious more than ever. Before November, i had none of this going on, w exception to rescue inhalers and nebs for asthma. They told me that i had Advanced Lung Disease. COPD, Emphysema and Asthma w hyper inflated lungs and a flat diaphragm. I live alone, 75 years old, 92 lbs and socially isolated. I have become a germaphobe bc I've been told COVID would be a death sentence. I will also say that in the last month or two, there's been a lot of activity in my house: new flooring installed inside (ripping out old floors) and new windows installed, new gutters, landscaping going on, plumbing in the crawlspace, all outside. I deal w installers through the window on my cell phone. Dust and smells from the flooring (while being sequestered in my room) sent me to the hospital this month, July. The guy even closed off the area w plastic and brought an industrial Clean Air machine like they use w Servpro. I could still smell it! I'm one to maintain and update every 10 years and that's this year. I've also been in the process of getting all my ducks in a row b4 my demise: Wills, Lists for my realtor, work on my house-- getting things up to date as not to leave my Executor w a mess. It's also stressful having ppl buzzing around my house...creates a lot of anxiety and even panic attacks. I've learned to decipher an asthma attack from a panic attack. If my pulse ox is normal, it's panic. I've learned to talked myself down from the panic by concentrating on my breathing and getting out of my head by using the 3 3 3. I use my neb mask to concentrate, it tends to help, even w no meds in it. So, your comment was whether or not exacerbations mean the lungs are worse. In my opinion, for me, it sure feels like it. I refuse to call 911 when these things happen, unless I absolutely can't control my breathing on my own and know I need help. In spite of the things I've just described, I try to maintain a good attitude. My social life is by text, FaceTime, phone calls, letters...only 2 visitors. The guy who gets my groceries and my younger sister--since March 2020. I dont even use my car since November. The humidity is so thick, i cant even go and get my mail. I'm hoping when Fall comes and it cools down, i can at least sit on my front porch. Jackie, just know you're not alone in this. Communicating w ppl like yourself also helps me to express what most ppl dont want to hear about. Hang in there. Debbie Jackie English
1. CommunityMember292 Member
 <inline-mention username="Jdh71" user-id="2423830"/> Mary Lyn again. Silly question maybe, but is there anywhere else you can stay while this work is being done? I haven't had a sense of smell since my multiple sinus surgeries in the early 90's. Consequently, I can't smell mildew, mold, smoke, so I have to be very vigilant when I start coughing cuz I can't always identify the culprit. Your attitude is a positive one. I look forward to when you ( and I ) can sit out on our decks and watch the world go by! 
2. Jdh71 Member
 <inline-mention username="Jdh71" user-id="2423830"/> a hotel, but that would be very inconvenient and costly. I'm not able to drag all my stuff to get there, and I dont drive anymore...yet. waiting to see if I can get out during the Fall when its cooler. Thanks for asking though. I'm not sure why or when I lost my smell, I want to say when I got the Covid shot. Things also tasted funny for a while.
bigbird Member
I am doing somewhat the same thing . I can usually cook .. do dishes go to bathroom. Shower get dressed without oxygen. I still work 45 hours a week never used to use portable oxygen at work. But I had covid pnueminia in last part of June. Oxygen was dipping into the 70's just to go to the bathroom so I started having to use my oxygen for simple tasks like walking across the room . Since being on antibiotics and Prednisone besides my trelegy I can do a little more without oxygen but I am still having to use at work when I am up walking about .. thank god most of my job takes place in office work . I don't need oxygen at rest. It's worry some to think Iay have to quit work if I can't get back to where I was before . I'm going to give it my all and try.. part of me feels like it's this weather I live in KY and we have had a lot of heat alerts and high humidity. I am now being diagnosed as a long hauler of covid.. all I can do is my best, but not gonna lie it's wearing me out!! It's great to have these web sites to vent on. .. I don't tell my all to my kids don't want to worry them .. although I'm worried myself at times . Gonna start pulmonary boot camp on line again and see if it helps. Wish me luck ! Kathy 
1. SamanthaSarube Community Admin
 <inline-mention username="a-jeanne-7" user-id="2452193"/>, here is an article we have that explains pulmonary rehab! <a href='https://copd.net/living-with-copd/pulmonary-rehab' target='_blank'>https://copd.net/living-with-copd/pulmonary-rehab</a>. All the best, Sam S. (<a href='http://COPD.net' target='_blank'>COPD.net</a>, team member).
2. Leon Lebowitz, RRT Member
 <inline-mention username="a-jeanne-7" user-id="2452193"/> Hi again, jeanne, and thanks for your question - it's a good one! Actually, it's a take off using the word 'boot camp' (as part of rigid preparatory fitness program). In this case, 'pulmonary boot camp' is referring to a rehabilitative exercise program for folks with a pulmonary diagnosis, but not necessarily so rigid! I see my colleague, SamanthaSarube, has already provided you with some helpful information regarding pulmonary rehabilitation. There may be pulmonary rehabilitation programs in your area. To find them, you should either look (online), or ask your pulmonary physician for guidance. There are many (within our community), as well as patients I've treated over the years, who rave about these types of programs. They can go a long way towards helping patients to stay active with exercise. Typically, the exercise program is geared toward each individual's specific level of disease. What do you think? Should you want to read even more about it, here is a link to our initial article (here on <a href='http://COPD.net' target='_blank'>COPD.net</a>) which reviews pulmonary rehabilitation in a comprehensive way: <a href='https://copd.net/living-with-copd/pulmonary-rehab' target='_blank'>https://copd.net/living-with-copd/pulmonary-rehab</a>. I do hope you find this information is helpful in a practical way. Wishing you well, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
CommunityMember3754 Member
Totally understand 
1. a-jeanne-7 Member
 <inline-mention username="Leon Lebowitz, BA, RRT" user-id="2445532"/> i have an pulse oximeter , the numbers keeping moving, they do not stop. do i take the very first number? or an average...which i have been doing ? also when doing a 3 minute walk do i leave it on while walking...thanks for any information 
2. Leon Lebowitz, RRT Member
 <inline-mention username="a-jeanne-7" user-id="2452193"/> Hi jeanne, and thanks for this question - it's a good one! This is a fairly common question, and one that is of importance to all those who use pulse oximeters on their own. The reading from a pulse oximeter does tend to bounce around a bit. This may be due to one's level of activity while wearing it and/or the quality of the oximeter, or even one's pulse strength. The reading is meant to provide a 'guide' for one's oxygen saturation level at the time it's being taken. Remember, the heart is always beating and blood is constantly pulsing through one's arteries. It is a dynamic situation. If you're looking at the numbers as a kind of average - that would be the most practical application of using a pulse oximeter. I did want to add one more thought - if your physician has recommended that you use the pulse oximeter in the home setting, you should probably ask the doctor what he/she has in mind for its use, in your case. As well, the doctor should be able to guide you how to use the device when you are walking (the 3-minute walk you mentioned), or other activities. What do you think? Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
dariggins Member
It is very scary.
1. dariggins Member
 <inline-mention username="Jackie English" user-id="2415342"/> Not now, it was last month. I do learn alot reading on this site, other peoples stories and how I can identify with them. Like the one about shower verse tub. Thanks! 
2. Jackie English Moderator & Contributor
 That's good <inline-mention username="dariggins" user-id="4259024"/>! I'm glad to hear that you learn a lot and can identify a lot from this site. We learn from you all as well. Best, Jackie (Moderator)
bin there and dunit Member
I have not yet achieved your level of illness even after 20 years (25% of my life) plus a bit though like most I have been through the hospital and oxygin (gin because it made me happy) and antibiotics and enough steroids to do a 4 minute mile. Every day for those 20+ years I have twice taken breathing tests. Over the years my breathing went from 40 litres per minute to 20 litres. (Don't ask me what the staff sw in lists of vital statistics - I have no idea except to know that my ability to breathe was deterioration For me I was simply determined not to give in as long as I had my legal "dope" I kept fit, ate well but carefully As I have written before, exactly three years ago I got fed up with feeding steroid suppliers so I took that formula from the USA and take it daily to my doctor's hilarity. My peak flow meter has smashed against the 90 litres end and is now in the 70's. Yes, I get ups and downs - I was puffing the other day when I had to carry multiple loads downstairs but that is as bad as it gets. I even have a torn muscle from too much exercise. MORAL; fight until you cannot move or read or talk or see. Look at possible alternatives - exacerbations are infections, your body has an immune system being damaged by antibiotics so fight to strengthen the immune system. UCAL studies point to the gut as being the battlefield so give your good bits a nice meal it is cheap, easy to find in shops 365/365 and it does not need a doctor's approval. Enjoy life (and by the way, my lungs are deteriorating but "it" has not beaten me)
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="bin there and dunit" user-id="4279910"/> ! Thank you for all of the helpful information! I can’t imagine doing a mile🤣 that would be a site to see. I do try everything first before trying the antibiotics. They are always my last resort and thank goodness haven’t had to take them that often. Glad to know that your deteriorating lungs have not beat you. Best, Jackie (Author/Moderator)
Jean Ellen Member
Isn't it frustrating to not know why one day breathing is ok then the next be a struggle?! You are not alone in feeling the challenge in describing the drop in O2.. 
1. Leon Lebowitz, RRT Member
 <inline-mention username="Jean Ellen" user-id="7003249"/> Hi Jean Ellen, and welcome! I see you are a new member here, having joined just today, about 90-minutes ago. We are glad to see you already engaging with the community through this, your first post. I understand just what you mean, too! Many in our community have shared similar sentiments when it comes to the erratic nature of COPD and, how it can affect one's breathing from day-to-day. We appreciate you lending your own support and encouragement here. If there is anything we can do to assist you, please let me or any other moderator / team member know. Wishing you well, Leon (site moderator <a href='http://COPD.net' target='_blank'>COPD.net</a>)
2. Jackie English Moderator & Contributor
 Hi, <inline-mention username="Jean Ellen" user-id="7003249"/> ! Thank you for your response and for letting me know that I'm not alone in feeling this way. Best, Jackie (Author/Moderator)
Tj Linn Member
Just a little something I penned the other day: They Call It a Party Today I’m having a party Tho I’m the only guest One of those dreaded parties That robs me of my best It frequents me from time to time Barging right on in Using facts to derail me As I suffer in its den It’s called a pity party And I hate it thru and thru It hits me when I’m feeling sad Disrupting my godly view Eventually it wears me out And drives me to my bed Where sleep comes to my rescue And clears my traitor head Tj Linn 
1. Jackie English Moderator & Contributor
 Love this, <inline-mention username="Tj Linn" user-id="8516239"/>! Thank you so much for sharing with us. You are so creative. This is so true. Best, Jackie (Author/Moderator) 
2. Melissa.Arnold Community Admin
 <inline-mention username="Tj Linn" user-id="8516239"/> This reminds me a bit of Shel Silverstein's poetry! So honest and relatable. Thank you for sharing with us! The arts are such a powerful way to express and deal with the experiences that come with COPD. -Melissa, <a href='http://copd.net' target='_blank'>copd.net</a> team
Victoria P Member
Lately, the last month or so, I have had more energy and it's easier to breathe. What I attribute to this good news are the facts that I have lost almost 30 lbs and I've been doing water aerobics every other day. It is so much easier to get from point A to point B, and I don't have to use my oxygen 24/7. I hope I continue to lose weight cause I certainly could stand to lose another 30 lbs, and I hope this ability to be active lasts, although I'm not expecting it to, as I know that COPD is a progressive disease. 
1. Jackie English Moderator & Contributor
 Congratulations <inline-mention username="Victoria P" user-id="4185115"/> , that’s awesome!! I agree with you . Getting weight off for me helped my breathing tremendously. I’ve put some weight back on recently after a surgery and need to get it back off. I can feel the difference on my lungs. Thank you for sharing and keep up the good work! Best, Jackie (Author/Moderator)
CommunityMember11711d Member
Does everyone with copd end up on oxygen? 
1. Jackie English Moderator & Contributor
 Hi, <inline-mention username="CommunityMember11711d" user-id="8499512"/> ! Not everyone. We all seem to decline at different rates. I think there are a lot of things that can factor into that. The reasons for the COPD, if you still smoke, not staying as active as we can and eating the right foods. The work that you do. The environment that you live in. So many things go into it. Some people can still do all of the right things and still end up on oxygen. I hope this answered your question. Best, Jackie (Author/Moderator)
CommunityMember530a0e Member
Have you checked into valve replacement for lung. 
1. Jackie English Moderator & Contributor
 Hi <inline-mention username="CommunityMember530a0e" user-id="8640910"/> ! I have. I had checked about it right before COVID and had started the testing for it. Everything was going great but then everything closed down. I've come to the point right now after seeing so many friends have it done that I ferl good where I am at and might re-evaluate at a later time if I deteriorate more. I am happy with that. What I am still able to do at the moment. I’ve seen some of my friends have great success with it, and I’ve seen other of my friends, who it hasn’t helped or made worse. I just made the decision i’ve seen some of my friends have great success with it, and I’ve seen other of my friends, who it hasn’t helped or made worse. I just made the decision that for right now I'm good. Have you had them done? What are your thoughts on them? Best, Jackie (Author/Moderator)
CommunityMember1c25eb Member
I know I'm <a href='http://declining.was' target='_blank' rel='noopener noreferrer ugc'>declining.was</a> hospitalized 3 times last year with <a href='http://exaserbations.knock' target='_blank' rel='noopener noreferrer ugc'>exaserbations.knock</a> on wood,I've held my own since then. 
1. Leon Lebowitz, RRT Member
 Hi <inline-mention username="CommunityMember1c25eb" user-id="8653505"/>, and welcome! I see you are a new member here having joined today, within the last hour. We are glad to see you already engaging with the community directly through this, your first post. You have certainly come to the right place! Here at <a href='http://COPD.net' target='_blank'>COPD.net</a>, we are all about all things COPD and COPD related. If there is anything we can assist you with, please let me or any other moderator / team member know. You are always welcome here in our online community. Wishing you well, Leon L (author / site moderator)
2. Jackie English Moderator & Contributor
 Hi, <inline-mention username="CommunityMember1c25eb" user-id="8653505"/> ! Im so sorry to hear that but glad you are holding your own. Thank you, for sharing with us. Best, Jackie (Author/Moderator)
bslandc Member
COPD is weird, causes us to worry at unecessarily. Tends to work on the mind.
1. Jackie English Moderator & Contributor
 I agree, <inline-mention username="bslandc" user-id="8653786"/>, it sure does. Thank you for sharing with us. Best, Jackie (Author/Moderator)
buddysgirl Member
It is exactly how I <a href='http://feel.1st' target='_blank' rel='noopener noreferrer ugc'>feel.1st</a> hospitalization was 12/10,doing fairly well for 10 years. Just discharged from ICU with 4 days of <a href='http://bipap.Extreme' target='_blank' rel='noopener noreferrer ugc'>bipap.Extreme</a> flare up or natural decline? Scary in either case and not wanting to frighten my family.
1. Jackie English Moderator & Contributor
 Hi, <inline-mention username="buddysgirl" user-id="2467283"/> ! Wow! Sounds like you have been through a lot lately. It is scary. So sorry! Hugs to you. 🥰 I understand not wanting to scare the family but I would let them know everything that you know. They need to know, learn, and be prepared just as you should. Best, Jackie (Author/Moderator) 
2. buddysgirl Member
 They were made aware of my hospitalization,but they live some distance away and I don’t want them to feel guilty or uncomfortable about my <a href='http://situation.Pride' target='_blank' rel='noopener noreferrer ugc'>situation.Pride</a> I guess.
Jackie English Moderator & Contributor
I understand, <inline-mention username="buddysgirl" user-id="2467283"/>! 🥰
CommunityMember4b7d51 Member
I feel like I'm steadily going down hill
1. Jackie English Moderator & Contributor
 I'm so sorry to hear this <inline-mention username="CommunityMember4b7d51" user-id="8643119"/> ! Have you discussed this with your lung doctor? I would start there. Please, keep us updated. Best, Jackie (Author/Moderator)
Leon Lebowitz, RRT Member
Hi <inline-mention username="CommunityMember4b7d51" user-id="8643119"/>, and thanks for joining in the conversation here. I am so sorry (and concerned) to hear that you feel this way ("steadily going down hill&quot😉. If this is the case, would you consider reaching out to your physician? Please do let us hear back from you - we have a genuine concern for your good health. All the best, Leon L (author / site moderator)
CommunityMember753719 Member
That's exactly what happens to me . Doctor said it's normal ,you peak and then go down and then peak back up again. That happened when they weened me off the steroids.
Jackie English Moderator & Contributor
Hi <inline-mention username="fishy" user-id="4728664"/> ! I am so sorry to hear that this happened to you when you were weaned off of your prednisone. Maybe you should ask if you should be on a weekly dose of it. I can't give doctors advice but it wouldn't hurt you to ask your doctor. I know quite of few who have to take them year-round. Best, Jackie (Author/Moderator)
1. Jackie English Moderator & Contributor
 Sorry <inline-mention username="fishy" user-id="4728664"/> , this isn't for you it was for <inline-mention username="CommunityMember753719" user-id="8655679"/> . Thanks!
cook2750 Member
Hello everyone. I know exactly what you're talking about. It seems to me anyhow, that ever since I had my PFT done a couple months ago, that it seems even doing the simplest things, cooking dinner, as example, I need to get back over to my oxygen concentrator and get my oxygen saturation back to a higher level. I seen my pulmonologist a couple weeks ago, he indicated that this years and last years PFTs show no change, but says I have very serious COPD, to my understanding that means stage 4 or also known as end stage. He also at our last meeting, wants me to get an ultrasound ( echocardiogram ) done on my heart because he believes I likely have issues in my cardio vascular system that is complicating my ability to do much of anything. I'll have that done in a couple weeks. I had 2 flare-ups in Friday the 13th of all days, the worse one occured in the morning in the bathroom, thankfully my wife was awoken from my calls for help, my portable oxygen tank as well as my rescue inhaler were in the living room, truthfully I should have let her call 911, The second occured around 6 in the evening. I was in the Kitchen when this one came on, it wasn't as bad as the first one , but I was in close proximity to my oxygen and inhalers. The thing is though, to me it seems that ever since my last PFT I could tell that something was different, like a slow build up to the flare ups. I don't know if that's what actually progressed, but that's how I feel had taken place. I could talk for ever about my experiences with COPD, all of us probably can, but perhaps another day. Lol We are all Brave Souls, we have to be trying to live with the hardships and terrifying days our disease puts us through. Thanks for letting me talk to you, may God Bless Us.
Jackie English Moderator & Contributor
Hello, <inline-mention username="cook2750" user-id="6769431"/> ! Do you wear oxygen all of the time? Or should you be? Have you had a six minute walk test to see if you should be wearing oxygen with activity? Also, if nothing new was found on your breathing tests that is a good thing to check out your heart. Are you eating differently at all like more carbs or starches? That can be bothersome on our breathing as well. Just some things to look into. You are right, we are all brave souls. Thank you for sharing with us! Best, Jackie (Author/Moderator)
cook2750 Member
Hi Jackie, I wish to thank the people who responded to my "adventure " with COPD. On my oxygen use, about 6 months ago my pulmonologist prescribed me for it's use, when I received my oxygen, I was provided with a concentrator, 6 portable canisters that fit in a small back pack, and a larger canister. My instructions for use was that when I'm walking about for more than 2 minutes I'm supposed to use my oxygen. I was set at 2 liters, but after my recent PFT my pulmonologist raised my oxygen intake up to 3 liters. I have my concentrator next to where I sit in the living room, and I do use it a lot, since I get so out of breath it's just convenient to use it. If that's good or bad, I don't know, likely both. There's a lot that I don't know about COPD, since actually, once I learned of my having the disease, compliments of an unexpected ambulance ride to the emergency room, for the most part, I was prescribed inhalers. There was no telling me what to eat, how to breathe, exercises, basically nothing. So, it's been pretty much learn as I go. Sad but true. Regardless, I'm in bad shape, the simplest things drain me, such as just getting dressed, or even cooking dinner, showers, now that's a different story. I dread the shower, what use to take me 5 or so minutes now takes me close to 45. And most of that is drying off and slowly getting dressed without hurrying myself. My blood saturation sometimes gets so low that I'm doing everything I can to try not to pee myself. It's a struggle, but I'm not ready to throw in the towel. I'm 70 and sick as I may be, I'm sure the good Lord will give me a few more years with my wife. I may not be able to do the things we use to do together, but as long as I can hold her and make her laugh, then life's still worth living as far as I'm concerned .
Jackie English Moderator & Contributor
Hi again, <inline-mention username="cook2750" user-id="6769431"/> ! I think you should leave your oxygen on at all times then instead of just some of the time. Do you a a pulsoxomiter? This will help you know what your oxygen level should be at. They used to say don’t go below 90 but lately Medicare has said 88. I feel you about the showers and bladder problems when your short of breath. When we are almost losing control of our bladder, it’s because the oxygen that we do have is going to all of the body parts that need it at that time like our heart, lungs, and brain. That’s how we lose control of other body parts at that time. We have to remind ourselves to take our sweet time. It’s hard. I wish doctors would explain more when they diagnose us with COPD. I hope you read a lot here on this forum. You can learn so much here and we can always answer any questions for you. I think this article can be really helpful to you. Please keep in touch. <a href='https://copd.net/living/awareness-2023' target='_blank'>https://copd.net/living/awareness-2023</a>. Best, Jackie (Author/Moderator)
cook2750 Member
Thank you Jackie, and yes I am learning a lot thru these articles. And I'm without any doubt I will continue to learn how to better live with this disease. And yes, I understand all about doing things slow, slow is all my body will let me do, I've learned to try not to get stressed over anything, it's as bad as doing things faster than I normally do. Another thing is the phlegm) mucus in the mornings. What a struggle to cough it free, I drink a lot of water, which probably helps a lot, but mornings, they can be tough sometimes. Yeah, I've been sitting here watching Yellowstone, trying to work up the courage to grab a shower. Lol Sometimes it takes me a couple days to summon up the courage to do it. But it's either tonight or first thing in the morning before I see my cardiologist at 8:30. I think if I waited until morning I may find myself hurrying myself and I know that never works out well. Oh well, it is what it is. I'll sign off for now, Live you all, thanks for being there for me. Till next time........😊
1. Jackie English Moderator & Contributor
 Hey, <inline-mention username="cook2750" user-id="6769431"/>, thanks for answering my questions. Yes, I would be the same way if I waited for a shower in the morning. Trying to rush to get things done even if I got up a couple of hours early. I'm not a doctor and cannot give you medical advice but I can let you know what helps me and many others get that mucus out. I nebulized sodium 7% chloride nebulizer solution. I use it in the morning when I wake up and in the evening before I go to bed. It might not hurt to ask your doctor about it. I hope all went well with the cardiologist. Best, Jackie (Author/Moderator)
2. Jackie English Moderator & Contributor
 You’re welcome,, <inline-mention username="cook2750" user-id="6769431"/> ! All we can do is to keep trying, right!?! Thank you for sharing with us! Keep us updated on how your appointment goes. Best, Jackie (Author/Moderator )
CommunityMemberdc4215 Member
When i walk to Safeway n its only 100 yard my chest gets sore from to my back. I have to sit down my heart rate sky high i feel drain. I i feel useless this copd us a challenge
1. Jackie English Moderator & Contributor
 It is a challenge, <inline-mention username="CommunityMemberdc4215" user-id="8607794"/>. Please, don't feel useless. We just have to learn to do things slower than others. Take your time and try some different breathing techniques if you have never tried them before or even online pulmonary rehab. Here is a great article about it that I think you'll find helpful. Best, Jackie (Author/Moderator)
CommunityMembere6e515 Member
Yes you are so right about every thing you just said I feel the same way
CommunityMembere6e515 Member
I'm going tru it right now trying to fight off flare up in my right lung my life my house and every thing is up side down I can't seem to get nothing done around here I 💘 all the best this site gives me I didt think I had anyone to talk to since my mom died
1. Leon Lebowitz, RRT Member
 Hi <inline-mention username="CommunityMembere6e515" user-id="6222555"/>, and thanks for your posts here. I am sorry to hear of the ordeal you are experiencing now. However, you have certainly come to the right place! Here at <a href='http://COPD.net' target='_blank'>COPD.net</a>, we have an entire community which understands how you feel and knows exactly what you are going through. The community is here for you, to lend support, share scientific information as regards COPD, and to lend a listening ear whenever you need it. Please know you are always welcome here! All the best, Leon L (author/moderator)
2. Jackie English Moderator & Contributor
 Hi @CommunityMember6e515, I’m so sorry that you are going through this right now but so glad to hear that this sight helps you. That’s what we are all here for. I miss talking to my mom as well. I understand how you feel. Thank you for sharing! Best, Jackie (Author/Moderator)
Savedbygrace Member
I understand. Right now I'm battling the flu and I'm doing everything I can to keep it from taking over my lungs. My O2 sat has dropped down in the high 80s, at times, so I'm taking it easy. Florent, Mucinex, NAC, Vitamins C,D, and zinc. I'm on maintenance Trelegy. People have no idea what we live with.
1. Melissa.Arnold Community Admin
 <inline-mention username="Savedbygrace" user-id="2468749"/> Hi. I just wanted to see how you're doing, and how your recovery from the flu is going. I hope that your symptoms didn't escalate too much and that you're feeling much better now! Please let us know, when you can -- we really do care. Sending sincere best wishes. <3 -Melissa, copd team
Jackie English Moderator & Contributor
Hi, <inline-mention username="Savedbygrace" user-id="2468749"/> !! I’m so sorry to hear that you are going through this right now. I hope you get feeling better soon!! It sounds like you are doing what you need to get better. You’re right, some have no idea. 😢 Feel better, Jackie (Author/Moderator)
Savedbygrace Member
Thank you. You, as well.
1. Jackie English Moderator & Contributor
 Thank you! ~Jackie
CommunityMemberf17fce Member
I'm on oxygen 2407 and yes it is difficult to do any house tours or walking back and forth through the house. I think you're really lucky you don't need oxygen all the time.
1. Jackie English Moderator & Contributor
 Hi, <inline-mention username="CommunityMemberf17fce" user-id="6894909"/> ! I am on oxygen 24/7 as well and when I talk about taking my oxygen off to walk to the bathroom I shouldn’t but have when I have taken my cpap off in the middle of the night and forget to hook my oxygen back up to my hose to go to the bathroom. You are right though I am very fortunate to be able to do the things that I still do. Thank you for sharing! Best, Jackie (Author/Moderator)
CommunityMember947 Member
I feel exactly the same. At end stage, and was doing fine, then boom!. Out of breath getting out of bed, walking 20 feet. My oxy doesn't go down much, but rises?. Seems like I am weird. Having hard time just sitting and being out of breath. I dont want to spend what time is left like this. It is a constant hurt, if that is the right word. Albuterol is making me very shaky, so I cut way back. I cant decide whether to go to the er for some kind of treatment, but 3 years ago, feeling almost the same, I nearly didn't make it. I called 911 thank goodness. I just sit and worry. I have no one to ask for help. The best time for me to breath as close to normal is in the early morning. Air seems fresh and good. 1 cup of coffee and watch the squirrels. Thank goodness for my oxygen, even though it may not help, but when breathing really hard I use it for a while. If you want to keep in touch, leet me know. It seems like we are at the same stage. good luck and better breathes.
1. CommunityMember947 Member
 <inline-mention username="Lori.Foster" user-id="8790743"/> I have been alone most of my life, so not worried about travel. I meet lots of nice people at rv parks. Usually the less cost of a park has the nicest people. Not in a hurry to get to Oregon, but in a hurry. Not sense?. I know, but I only drive till I get tired.
2. Melissa.Arnold Community Admin
 <inline-mention username="CommunityMember947" user-id="4725608"/> I need you to know that I am truly excited for you, Diane. You have wanted this for so long and now you're going for it. And as someone who doesn't do well on my own, I admire you for your comfort with such a long trip. I hope you take pictures and/or journal along the way! A practical note: it may be helpful to note the location of urgent care clinics or hospitals along your route, just in case. A short letter from your doctor describing your diagnosis and typical hospital treatment, if there is one, can make getting the right care a lot simpler with unfamiliar doctors. Also, I would love it if you started a new forum topic for your trip! This way it'll all be in one place where we can follow along without missing anything. The forum page is <a href='http://www.copd.net/forums' target='_blank' rel='noopener noreferrer ugc'>www.copd.net/forums</a>. Happy travels, Diane! Be safe and know we are with you in spirit! Hugs. -Melissa, copd team
CommunityMemberd9bea4 Member
Feeling the exact same way lately!!
CommunityMember5d3116 Member
<inline-mention username="Jackie English" user-id="2415342"/> , Just read your article, that was awhile back in yrs,so how you now, everything you wrote I'm going through it S well, let me know on your update
1. Jackie English Moderator & Contributor
 Hi, <inline-mention username="CommunityMember5d3116" user-id="8802312"/>! Thank you, for checking in on me. I am doing great now and I think I was just having an exacerbation at the time. I've been very stable over the years. I'm so sorry to hear that you are going through the same right now. Hopefully, you will feel better soon! 🥰 Best, Jackie (Author/Moderator)
ReconDoc Member
I am currently experiencing the same problem. I was in the hospital with Pneumonia for 5 days last week. My continuous o2 has been increased to 3Liters.. I have started two new medications and discontinued the use of the inhalers (except my rescue inhaler). I am now on Yupelri 175mcg daily and formoterol fumarate 20mcg twice daily using my nebulizer for both drugs. The impact of these two drugs has been great.
1. Jackie English Moderator & Contributor
 Hi, <inline-mention username="ReconDoc" user-id="2430265"/>! I'm so sorry to hear that you are going through all of that but so glad that you have found some medications that are helping you. I hope you continue to feel better every day. Take care, Jackie (Author/Moderator)
bin there and dunit Member
 Note to moderator; verbose as usual - edit as you feel fit. Oh Jackie. I can feel for you up to that comment a long time ago. <<" I have been to my pulmonologist, who did a six-minute walk test. You won't believe it. It was the best six-minute walk I have ever done. My oxygen stayed at 96 the whole time.">> I have escaped the oxygen routine up to now but for the benefit of other sufferers I believe that one can delay the final ignominity. About five years ago I could not walk the six minutes on the level without extreme breathlessness. I found two intertwined remedies. 1) exercise BUT DO NOT go all out. You can today do (say) 30 paces so add a pace every day and after a while perhaps 2 paces extra per day. Stay within your original limit of breathlessness and ease up if you need to. (Actually you are getting fit just as an athlete does). You will see so many posts here about exercise - it is imperative whether you go out, go to the gym like me, swim or simply do exercises at home; EXERCISE! 2) Diet (my failure) Do look up what is good for you - vegetables, fish, fruit, some but not all meats, pre and pro biotics I(many are foodshop basics) etc etc. and be careful about certain aledged US staples which we import! My list has about 30 "good" ones. 3) This might infuriate the drug manufacturers who depend on ever increasing prices to live a life of luxury and a few doctors but too bad. Down in your belly there is a thing called the "gut microbiome", discovered in the last decade and a bit ie it is new! What is clear is that this area controls a major part of how your body operates though many of the processes in respect of the brain (Parkinsons, dementia etc) etc are known to exist but how is unclear. Clear is that antibiotics, steroids etc arriving in the gut microbiome are used to treat various infections and misdeeds in the body; (example - flucloxacillin said to be for infected cuts, amoxycillin for specified other infections ad nauseum - these are non USA names - don't say them to your doctor). I take the view that an exacerbation is usually another name for an infection and your body already has a (perhaps weakened) army ready to deal with infection . Your job is to strengthen your immune system sufficiently to fight wouldbe infections/exacerbations. Google for old wives recipes and then CAREFULLY consider each and every ingredient and look at their side effects. For example I mentioned flucloxacillin earlier - I was brought up with kaolin poultices and others use cabbage - both almost as effective and safe from side effects. In the same way I found ingredients openly and freely available which I have used very effectively but as a precaution I use 50 % of the posted recipe. I have recently discovered (and proved) that two ingredients are good for weight loss - I failed to pick that up! After my early problems I am now fit, take the doctor's medicines but can outdo other ancient ones.
1. Stephanie B Member
 <inline-mention username="Jackie English" user-id="2415342"/> Hi Jackie... I read your posting regarding exacerbation vs decline in lung function and would like to respond to it. I am new to this forum and haven't figured out how to work with it, i.e., how to respond to one's post, how to put my own post in, i.e., would be nice to do an introduction. Although, I may of posted something several years ago since I started in on the social media dealing with COPD at least 4 years ago. I will mention here that I have been dealing with nearly all the same issues as you (from what I can tell) although about 6 months ago I was diagnosed with Pulmonary Hypertension group3. It was first discovered because I was walking the dog one day and feeling pretty spry and walking well and then, kaboom! I all of a sudden, had trouble propelling off of my feet to move forward. I like you have been spending a lot of time looking for help with this issue. Like COPD there is no cure and the best we can hope for is help with the symptoms. Oh gosh... I am going like crazy here. My apologies. If someone could help me through understanding how to use this network (they all seem to be somewhat different) I would be grateful. I think once I post my bio there may be quite a bit in there that may be helpful to others 😀 Best wishes Stephanie
2. Jackie English Moderator & Contributor
 Thank you, <inline-mention username="Stephanie B" user-id="8882703"/>. Hello! There are many ways to respond in this forum. Right on the articles as you did here. You can also do it on our Facebook page or you can also go straight to <a href='http://COPD.net' target='_blank'>COPD.net</a> and then log in, go to the menu on the top left side of page. If you click on community, you can then click on a forum and ask a question or statement there or you can go to the story and write your story there or read others’ stories. I hope I explained thatveell enough for you. I'm sorry to hear that you are dealing with Pulmonary hypertension as well. Here is an article about that here if you're interested. https://copd.net/living/pulmonary-hypertension-facts Hang in there! Best, Jackie (Author/Moderator)
CommunityMember8cb56e Member
I follow this site because my husband has COPD. I can't get him to read anything about it but if I learn something and ask questions he responds to that. But if I don't ask him specifically about symptoms he doesn't tell me if anything is different. I am concerned that if he has an exacerbation he won't tell me. He is only on oxygen at night. So I read your articles and watch for any signs of breathing difficulty. And I share the information with him that I see here. He does see his pulmonologist and Primary care regularly and is very good about taking his medications and keeping his rescue inhaler with him. 
1. Lori.Foster Community Admin
 I am glad you are here, <inline-mention username="CommunityMember8cb56e" user-id="8645125"/>. You have probably noticed over time that we have lots of family members and caretakers in this community, so you are certainly not alone. He is fortunate to have you at his side. Chances are that you will notice if he has an exacerbation, at least a significant one, because you are paying such close attention to his breathing and his abilities. If he has an exacerbation, he'll likely expereince shortness of breath more often, more pronounced fatigue and more coughing. Here is an article that discusses the symptoms of acute exacerbations: <a href='https://copd.net/basics/acute-exacerbations' target='_blank'>https://copd.net/basics/acute-exacerbations</a>. I hope this helps. Please know we are here for you whenever you need us. Best wishes. - Lori (Team Member) 
2. Jackie English Moderator & Contributor
 Hi, <inline-mention username="CommunityMember8cb56e" user-id="8645125"/>! You are doing all of the right things to help him. I'm glad he has you. Like you said, even if he doesn't read himself, he has you to give him tips and things that you have learned from here. I'm sure that you notice if he is having trouble or anything going on. I know my husband picks up on things before I get a chance to tell him sometimes. Keep being a great caregiver and advocate for him. We know we couldn't get through without you great caregivers. 🥰Best, Jackie (Author / Moderator)
Debs0855 Member
This post could have been about me. Meaning you’re not alone. I cough constantly almost,it’s just exhausting and the worst part is watching family watch me. Thank you.
1. Jackie English Moderator & Contributor
 That's right,,<inline-mention username="Debs0855" user-id="2419558"/> ! We are all in this together. Thank you for sharing! Best, Jackie (Author/Moderator)
CommunityMember340f29 Member
Just a gentle word. Wear your oxygen. I refused for the longest time, but finally gave in and wear it 24/7. It's inconvenient, it's always in the way or caught on something, but it's a necessity for me to function as normal as I can be. You'll get used to it and become creative dealing with the tubing. My wife calls me McGuiver because I'm always trying to come up with new ways, some successful, often not. So, hang in there. You have a lot of support here.
1. Jackie English Moderator & Contributor
 So true, <inline-mention username="CommunityMember340f29" user-id="8875153"/>. There was even a study that wearing our oxygen can prolong our lives by 10 years. I know it's gotten me way, past that point. Thank goodness! Thanks for the great tips, we appreciate them and you joining in the conversation. Best, Jackie (Author/Moderator)
Felines Member
 I have just had the same experience as you. My "girls" which are my lungs....have been great. Until our weather changed with lots of rain, which produces molds. Saw my pulmonary doc and I scored a good number on that dang walk we have to do. And the breathing test was the same as last time. So the fear of loss of was abated...at least for now. Doc gave me an antibiotic to have on hand if this grew into a bigger issue. I need to talk myself out of fear quite often......I just get so mad at myself for not being able to do what I used to be able to do. It is silly to do that but...... 
1. Lori.Foster Community Admin
 I am glad you saw your doctor and had some testing done, <inline-mention username="Felines" user-id="4535964"/>. That must have given you some peace of mind, Fear is a natural reaction to this disease. It's good you have a doctor who understands that and who acts proactively by giving you antibiotics just in case. Know that we are here for you whenever you need some extra support or a safe place to vent. Thinking of you. - Lori (Team Member)
Papa Smerf Member
When reading this, it is exactly what I'm going through, and I thought I wrote it. I'm looking for another lung doctor as the one I love is too far from me now. Knowing that I have now lived almost ten years longer than expected, it is getting hard to do anything. I'm hoping for a blocked artery that they can clear to bring me back closer to what I was. But it is what it is. Love to all.<img src="/content/images/2024/04/12/d69625dcca6b3cdb5ac4b4ffca3ae836_medium.jpg" alt="Braveheart and me." class="uploaded-image"/>
1. Lori.Foster Community Admin
 Hi <inline-mention username="Papa Smerf" user-id="4168645"/>. You really brightened my day with this photo. Thank you for sharing it! Cats are such awesome companions. I hope you find a doctor you connect with and who inspires confidence. Have you had a cardiac evaluation lately? It would be wonderful if your loss of energy were due to something fixable. Keep us updated if you don't mind. Wishing you the best. - Lori (Team Member) 
2. Papa Smerf Member
 <inline-mention username="Lori.Foster" user-id="8790743"/>, I can still put out slide videos, Lol... <a href='https://youtu.be/ysW3VKxqE54?si=ByS1uHSrMxWnEvYq' target='_blank' rel='noopener noreferrer ugc'>https://youtu.be/ysW3VKxqE54?si=ByS1uHSrMxWnEvYq</a>

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