Hi all, My mom got an at home NIV machine a month ago and she uses it at night. The same day, she got new medicine (i can't remember the name). She has felt way better in this period, and has been able to do a little laundry with breaks, walk up the stairs better, make dinner and even take a break from her all day oxygen mask. This Thursday, she was at the hospital for at check up regarding the new machine. A month ago she was at 20% capacity, but surprisingly, she was now down to 14%. I am aware that machines and medications can't heal and magically up the lung capacity, but it still puzzles me and i'm very scared of suddenly losing my mom. The doctors told us that, as far as they could read from the data on the NIV, my mom has almost completely stopped breathing in her sleep, making the NIV breathe for her. Also, sometimes, she removes the NIV in her sleep. If her husband is awake, he puts it back on her. Her capacity goes up and down from 25% down to 14% and up again, how is this measured? My mom is on a lot of medication for anxiety, panic attacks and strong back pain, which means she consumes a heavy cocktail of mental a physical relaxers (e. g. morphine) every day, plus her lung medication. I think about this a lot and i am constantly afraid of her well being. I am in the middle of a nervous breakdown, my energy is at an absolute low and i feel terrible for not being with her at all times. My feelings vary from scared to sad to angry and extremely guilty. I'm not angry at her, i'm angry at the time we might be missing together. It's hard to turn these feelings around to something positive at the moment. A very short backstory to these strong feelings of guilt might be, that for multiple unknown reasons, i got to know my mom at age 10, moved out at 17, now i'm 32 and i feel like we have had so little time together. I know that there is no specific answer, but what do i make of this? How do i go about my day without breaking down and being scared all the time? How do you cope with these feelings? I am in therapy, but can only afford going once a month. Sorry for the very long post, i am extremely frustrated with this knot in my chest. My studies have stalled, i'm unemployed and can't find the mindset to continue my career right now. Happy new year and thanks in advance for any answers :)
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Hi All, I'm a university student and I'm doing a project on portable oxygen therapy devices. If you could choose one of the following, would you say you prefer a longer battery life or a lighter device?I have stage 4 copd & have tried to quit smoking unsuccessfully. I don't complain to anyone because I know I did it to myself. When I say something to my husband he just proceeds to tell me how he pushes through & how he has 35% usage of his heart diabetes & copd (he has mild stage 1). I see a therapist but still feel so depressed. I've decided to stop using my inhalers & let nature take its course. Anyway I cant afford the copays. I'm useless to anyoneHi Everyone hope you all had a good Christmas! I am new on here and was hoping for some help/advice regarding my diagnosis and medication. I was diagnosed with a very mild form of COPD and asthma in April of 2019 after taking a spirometer test following a couple of incidents involving shortness of breath earlier in the year. The test showed me right on the cusp at FEV70 and I was given at that time just a blue rescue inhaler for my mild symptoms. I am an ex smoker who stopped in December 2018 and at that time despite having a bit of a smokers cough I had no issues with breathing and didn't even own an inhaler. However in the proceeding months my breathing continued to worsen and i was put onto long acting bronchodilators such as Spiriva and Eklira (not together I should add) neither of which have had much of an effect in slowing the progression of my breathing problems or providing much in the way of relief. The only inhaler that seems to provide any relief is my blue Salamol inhaler which I am using 3-4 a day every day which from what i gather is a sign my symptoms are being poorly managed. The frustrating thing is that my lung x-ray was relatively clear, my oxygen and blood levels are good and my general health overall is good. I have no cough or mucus It's just this constant shortness of breath which is beginning to affect my day to day activities. I feel that overuse of my rescue inhaler is contributing to my symptoms and was wondering what other medications you guys use that are affective at getting breathing under control. Sorry for the long post but thank you for reading. I would appreciate any and all feedback DarrenMy dad was recently diagnosed with copd and slight congestive heart failure.My family is at a loss with all these side affects. I’ve read it can cause dementia but can someone please let me know If these symptoms are normal with copd. He’s on oxygen at night and an inhaler. Are next step is Mayo Clinic in Arizona. Any thoughts? Please help me get some peace of mind.What would you like to tell others about your COPD? Share it here for COPD awareness month!What "invisible" part of COPD do you wish other people could see?Doctor is changing up my meds some in hopes that corrects some of my issues. Wants me to have a few tests done to rule out blockage in left arm. Will continue my own research also on how to improve myself best as possible.The best thing I have done so far is finding this forum. I have learned so much in the last few weeks from you all - and thank you! I am still trying to figure out how to navigate on this site so many responses my take a bit. Please continue to post because your first hand experiences benifit many people. Again thank you and keep us posted 😉I want to quit smoking and this smoke i am smoking right now is my last. This is the first time i actually spent one intention or thought pattern aimed at quitting. So wish me luck and please feel free to encourage and support my attempt to quit smoking..thank you and have a beautiful dayI was wondering if anyone has heard of a study on CBD hemp oil treatment for COPD? CBD oil reduces inflammation, anxiety, and depression, and is an expectorant. It has few (if any) side effects. I would like to take this instead of Prednisone. My doc is ok with me taking this product as long as I still use my Spiriva. Any information would be greatly appreciated. Thanks. L. FettersI was diagnosed with copd in 2018 i was prescribed with symbicort and incruse i also have another health issues but i had a dexa scan found out i have osteoporosis now and its pretty bad also found out i have a vitamin D and E deficiency so i was taking high dosages of vitamin d a year still very low on my vitamins i have been looking into symbicort and found out side effects are osteoporosis and vitamin deficiency my doctor says it can't be true so has anybody else been diagnosed with this or is it in my head like the doc saidI haven't been in here for a few weeks. I spent a week in the hospital the end of October. My problem now is that I had a molar tooth extracted a week ago which has caused my chronic sinusitis to start up and I'm having breathing problems and where the tooth was removed is very swollen. When I get up and move around I can't hardly breathe. I have been taking breathing treatments about every 4 hours. I should have had my husband take me to the ER today but I just started feeling worse tonight and he has to be at work at midnight. I just hope I can hold on until tomorrow to seek help. I guess I just wanted to vent. Thanks for reading.Anyone know of a medical supplier who accepts Medicare and California Medi-Cal to pay for a battery operated nebulizer compressor?...thanksHello, I am glad I found this community. I am 35 and 2 months ago I had an episode of shortness of breath so strong that I felt I needed to go to ER. I went to a pulmonologist couple of day after, i did a spirometry test which came out "almost" normal he said (FVC 5,11 130 4,94, FEV1 4,44 135 3,29, FEV1/FVC 86,9%) but he said i had mild COPD. I did a chest xray which came out normal and later did an MRI that showed bullous Emphysema, 5 cm on each upper lobe. I went back to the pulmonologist who said it i had COPD A Gold 1. I am 35 but have been a smoker for 20 years and 1 pack a day for 10 years or so. I stopped smoking immediately but i have been feeling really weird this last 2 days. I have been extremely tired, all day in bed, i feel a little fever and chills, i don't feel like i have shortness of breath i think but i feel my throat is stuck, feels a little like a suffocation feeling, also my chest burns, feels like is on fire. I have so many questions I don't know where to start. I hope some of you can clarify my doubts because the 2 pulmonologists I visited didn't explain much. I asked them if this condition would have change or shortened my life expectancy, and one said not really, because I caught it early as long as I immediately stopped smoking, eat healthy, exercise the other one said pretty much the same but I felt he was a little more concerned. I felt that both in a way were hiding the truth from me in a way, maybe they saw I was death scared. I don't know. But now I am learning that this condition is a really serious one and life changing, life threatening even when is mild. I hope someone can clarify my questions:
Is it possible to have long lung even if you don’t have emphysema or any other form of COPD? There seems to be some discrepancy as to whether I do or don’t have emphysema. I had some slight SIB this year. My cardiologist said my echo and stress test were fine. My PFT was fine and no treatment needed. However, my chest x-ray showed some possible early stages of emphysema. My general practitioner MD says I have long lung because I’m tall. She attributed my SOB to lack of exercise. I am seeing a Pulmonologist at the end of the month. I have never smoked anything in my life but grew up in a smoking household. Very confused by all this. Would appreciate your thoughts, thank you.Let me begin by apologizing to whoever reads the following. It is long and rambling if only because the whole COPD experience has thus far been long and rambling. In the early 2000 time frame, I was told by a pulmonary specialist that I had COPD. Then the Department Chair ordered some sort of "advanced" pulmonary testing and after receiving the results told me that I don't have COPD....and then whispered as he left the room...."loose some weight." A few years passed and I began to have frequent "coughing uncontrollably and related breathing issues." Some doctor told me it was because of my sleep apnea. But I kept being put in the hospital for 2 or 3 days, given IV doses of Levaquin and then pills for home. By 2012, I was referred to another pulmonologist who had me tested and proclaimed that I had COPD..but a "very mild" case. He put me on breathable powder prescriptions and of course, albuterol inhalers. The numbers of "exacerbations" or "flares" became more numerous and my repeated requests to be retested in the pulmonary lab were brushed off with "you have a very mild case." More importantly, at my demand, I began getting sputum tests with each event. The tests consistently came back with "staph aureous" and the pulmonologist prescribed various antibiotics in the "cillin" class or his apparent favorite, z-pac. I would take the drugs, the symptoms would go away, the pulmonologist would declare me "cured." And then a week or so later, the symptoms would be back...difficulty breathing, coughing, sleeplessness, etc.. This went on monthly for nearly 2 years. In frustration, I found an infectious disease doctor who cleared up the staph aureous (I think) but also found a soil based mycobacterium happily living in my lungs...but she said it wasn't causing any problems and in any event, killing it was a long, brutal process that most patients would not complete. In the past 18 months, I have made innumerable trips to the ED. Always the same. Duo-neb, Solumedrol, prednisone in varying amounts and duration depending on the doctor's training, etc. This summer, I've had three bouts of pneumonia without anybody determining the organism causing it and two bouts of "pulmonary edema" for which they gave me Lasix. My cardiologist says me cardiac system is excellent. I am 76, so that was encouraging. Fast forward to the past month. I wake up in the AM and remove my CPAP mask and am immediately in a panic not being able to breathe in or out. I don't know how many mornings I have literally peed my pants in absolute stark terror. I am able to grab the inhaler and get a puff in....and then stand there bent forward for 10 or 15 minutes before the coughing begins and I am able to bring up phlegm. Then I use the duo-neb but it only lasts for a few hours at best. My primary care and pulmonologist both say it is mostly my anxiety that is causing the problems so they give me 1/2 mg of lorazepam. Hey...it makes me feel good...but quite tired....and does little to stop the panic from feeling like I can't breathe. I am becoming a recluse because I can't run the risk of peeing or crapping my pants from coughing in public. I am going to try a new pulmonologist, but am not hopeful. Seems they just want to treat the symptoms and not figure out the totality of the disease. Yes...I have COPD...and I know its progressive and will perhaps be the way I finally die. I've done the so-called pulmonary rehab gig twice now...with no tangible results. I am rapidly losing faith in the medical community to do anything more than move me through their precious system, medicate me, and forget me until I darken their door once more. Am I the only one experiencing this sort of nightmare? If you who read this and have COPD think I am just being a psychosomatic blow hard, please tell me. I don't know what or who to trust.....but I would LOVE some quality of life in these so-called Golden Years.Found out last February when I got a chest cold, I was smoking an e-cig first time first day bam put me in the hospital for a week. There's more to the story.I use an oximeter frequently, but have very cold hands, and often don't get a correct reading. I recently had a PFT test, and walk test. My levels drop down to 90 with the walk test, and even below that at times. My doctor said that if my oxygen drops to below 88, and does not come back within 15 minutes I should stop walking. He also said to stop if I'm not able to speak a logical sentence. For some reason that sounds strange. I do use oxygen at night. Any comments?After 40 years of cigarette smoking, I have become accustomed to the sound of my breath while walking, especially up and down my driveway. However, after drinking Montana’s Miracle oxygenated water, I have discovered that I no longer breathe heavily while walking around or exerting myself. I have much more energy and endurance in completing everyday activities. My muscles are much more relaxed and I am able to exercise more freely while completing daily activities and exerting myself much more. The energy that I am filled with and the increase in my quality of life are what make drinking this water worthwhile. While completing walks through my neighborhood with my granddaughter, I am able to walk longer and more effectively down my street and without assistance. I also do not have to take breaks to catch my breath. I can say for sure that this oxygenated water has benefitted me in more ways than one and allows me to live my life to its fullest potential.
- 1) The first and most obvious has my life expectancy decreased from a normal person. The fact that I am 35 does it change things? Can I live a long life 80 years+ or I am expected to live shorter or even a really short life? I have red average life expectancy for patients with Stage 1 is 14 years. Is that true?
- 2) Is this disease always progressive? i was told that my spirometry is normal but the MRI confirmed bullous emphysema. Can I maintain a GOLD 1 stage if I don't smoke and keep healthy or is it always progressive?
- 3) I was just told to quit smoking, exercise and eat healthy but the only medications I was prescribed are airon for 3 months, Cortynase for 7 days and Rinaris for 5 days. I wasn't given any bronchodilators which I have red almost everybody is using. My mother sometimes has bronchitis and she has Flutixair 50. Would that work?
- 4) I already started to feel some symptoms as I mentioned before. Is this normal on stage A 1 GOLD? Is 2 days I feel really tired, want to sleep all day, my chest burns, I feel little fever, my lips hitch a bit and the worst is that my throat feels stuck.
- 5) I have read there is a surgical treatment for bullous emphysema that not everybody can do but if I am eligible should I consider talking about it with my pulmonologist? Does this procedure slows the progression of the disease or is performed only to limit symptoms?
- 6) I am an airline pilot, is couple of years I haven't been working but my plan was to come back to my job but I have red many people can't fly because of COPD. Will sooner or later loose the ability to fly as a career but also as a passenger?
- 7) I have red that during COPD A Gold 1 there are no symptoms but I am clearly having symptoms. Could be this worst than Gold 1 A, could they be wrong? 5 cm on each lobe feels like a lot, can a spirometry test be wrong? Due to the symptoms should I consider redoing the spirometry?
- 8) My grandfather died of pneumonia and he had several machines, 2 were sold which were pretty expensive but I have found an oxygen tank that I tried yesterday and I felt a little better. Will I need to use oxygen in a future as a certainty even if I stop smoking, keep healthy, exercise and keep the disease under control?
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