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My COPD experience.

  • By Jose Rentas

    I had been with asthma attacks from time to time not very frequent. On Nov 2015 I was exposed to a breeze an cold day and I got a cold and had breathing problems.I was hospitalized with pneumonia and was diagnosed with Pulmonary Fibrosis.I was hospitalized 7 times due to the condition. There was a time I thought the ambulance was not going to arrive on time.time.lwastold I had COPD an had to use oxygen during the day and night to sleep. At present the strong symptoms have diminished but once in awhile they come back and I have to use the rescue inhaler or use the oxygen.My cause is complicated with CHF which cause fluid retention.I am 83 yrs young and I am coping the best I can.

    Thanks

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi Jose and thanks for sharing your experience with us here. It sounds like between asthma, pulmonary fibrosis and COPD that your case IS complex, as you stated. Add the CHF to that and it certainly can be challenging. Asthma, Pulmonary Fibrosis and COPD all affect the lungs, but the effects are different. It’s in your best interest to make certain you have the proper health care team following all your conditions. If there is anything we can assist you with, please let me or any other moderator/team member know. You are always welcome here.
    All the best, Leon (site moderator)

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  • By jackie777

    When my 02 levels are 89 to 94 I start having shortness of breath, chronic cough, and a headache.

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  • By SteveM

    It looks like this whole site is done for a drug company. I want to find alternative treatments. I have been on oxygen 24/7 for almost 10 years now yet I take no drugs which help only on short term. I have done a major diet change. When I find foods that effect my COPD I try to stay away from them. I have always been a big milk drinker but I quite it 10 years ago then started drinking raw Jersey milk which was fine until last year I had to quite that. Another major food is wheat. About 8 years ago I quite eating bread and lost 10 pounds during the following month. I might go to a fast food drive in to get a Cheeseburger, Fries and Water.. The bread of the Cheeseburger goes to the dog in the back seat along with half the fries. Many years ago I quite drinking coffee. I was drinking 2 pots a day so I just quite. About 8 years ago I started coffee again. I now drink about 3 cups a day as a bronchial dilator and I take Guaifenesin to loosing the phlegm in the lungs. I also take an herbal antibacterial and Turmeric as an anti-inflammatory.

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    • By Jenn Patel

      Hi SteveM –

      Thanks for your comments and for sharing what you’re up to. Please note that this site is not for a drug company; instead, it is owned and managed by an independent company called Health Union – you can read more about COPD.net’s parent company here: https://health-union.com/. I can assure you that our content is not influenced by pharmaceutical companies – in fact we have a very strict policy on that. To read more about our editorial policies, feel free to see them here (under “Content & Community”) – https://copd.net/help-center/.

      Since you mention your interest in alternative treatments, I thought this page on the topic might be of interest to you: https://copd.net/treatment/natural-remedies-overview/. Additionally, if you haven’t already tried pulmonary rehab, you might be interested in that too: https://copd.net/living-with-copd/pulmonary-rehab/. I hope this information serves you well!

      Thanks again for your comments and please do feel free to come by any time!

      Best,
      Jenn (Community Manager, COPD.net)

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  • By Raven

    I do hope this helps or save anyone with COPD as divine intervention helped a Dr to fight as he was fighting as well for a #COPD patient.
    As this was told to me :
    April 16 2016 around 4pm 911 was called as a COPD patient wasn’t breathing and weak to move, on the way to the ER she coded full respiratory failure (TRAFFIC NEEDS TO STOP FOR AMBULANCES) and the ER Dr told the family the lungs were just mush there’s nothing he can do, another Dr and his specialty was pulmonary said to the family let me try and the family asked please. This #Pulmonary Dr took over and knowing this patient had COPD 3rd stage with a pain pump implanted inside with the drug Fentynol plus taking 45 plus another opioid and 6 msgs of Xanax a day plus smoked. Family were unaware opioids decreased respiratory but knew smoking wasn’t helping at all. Patient was put on life support ventilator, tubes through mouth and nose and the left lung collapsed. Family sat there Day in and day out for nearly 3 weeks waiting for some sign and during this time the patient ripped out the tubes twice which than they had to tie the arms and hands down. Family told the Dr their loved one was a fighter and if they knew where they were this loved one would fight to come through the Dr said I can only do so much and your loved one needs to fight now and get prayers going as we don’t know yet.
    Make story short the loved one opened her eyes and saw her loved one and said hi and closed her eyes again oxygen level started going up from 34 to 40. Nurses were still skeptical and tried to explain to no avail to the family. Picture this family fighting for their loved one and the loved one is on #Life Support and don’t know it. After 3 weeks she woke up but was weak. Dr pulled her through and he even said he had help from above. Than she had to learn how to walk, talk as her voice was gone from ripping out the tubes. Had to relearn to turn on the light so #Rehabilitation for near 3 months. During this time she quit smoking and her loved one said if she pulled through he would also quit smoking as he didn’t want to be an enabler and they quit.
    Plus the opioids she went through withdrawals and they shut her fentanyl pump percentages at a time and now she’s free of that and takes Tylenol or Motrin for pain and she thanks #Dr #Keith #Young #Huntsville Alabama #CrestwoodHospital Hospital and his complete staff for being there for her family and her and when she could she thanked the #ICU Nurses and her #Rehabilitation #therapists. And many #groundangels #prayerwarriors
    And I thank god for each day I wake up and thankful for my family not giving up on me.
    Please #stop #smoking or taking #opioids as this could happen to you and Your Family but not make it as others before me have. Lucky no. BLESSED YES . BTW My New SATS are 98

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi (again) Raven.
    I see this second post of yours is much more detailed and candid about your difficult experience. Thanks again for sharing it with our online community. This must have been some difficult and challenging ordeal for you to go through. It’s wonderful to learn of the overwhelming support and love provided to you by your family. As well, you are very fortunate to have been cared for by such a compassionate and persistent physician.
    We’re all so glad to hear from you and that you’re doing so much better at this time.
    Warm regards,
    Leon (site moderator)

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  • By Lazy T

    I was diagnosed with severe copd a little over a year ago. As a retired gymnastics coach, I value the need for exercise, however, I am experiencing severe muscle cramping with very little exercise! My family physician nor my pulmonologist have an answer I am having trouble coping with “one day I can do this, and the next day-no way.’ Am on nocturnal 0 2…up early…try for a busy day…not happening…then a sleepless night. Learning to cope with all these issues is a life lesson for me! Medications are fluticasone furoate, vilanterol…and tiotropium bromide.

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  • By Jenn Patel

    Thanks for sharing, GeneT and I’m so sorry you’re going through this. You’re not alone in having muscle cramping – you might be interested in this article on rib cramping: https://copd.net/living/community-feedback-rib-cramping/. You also are in good company when it comes to the “one day I can do this, and the next day – no way” experience. Many people find that certain days are better than others, without a clear explanation for why. I hope there is some comfort in knowing you have a whole community here who understands what you’re going through. Please know we welcome you to come by any time!

    Best,
    Jenn (COPD.net Team)

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  • By Lazy T

    Thanks for the reply…there are many sites that fly under the cover of “helping” however, this site is the answer for me! The article was very informative! It appears there are still many mysteries surrounding this disease.

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  • By Leon Lebowitz, BA, RRT Moderator

    Hi Gene Turney – glad to hear you find value in our site. With all the information available on COPD.net, combined with a large community devoted to all things COPD, we hope to be able to help clear up some of the mystery for you.
    You are always welcome here!
    All the best,
    Leon (site moderator)

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  • By Paula

    Kind of down tonight. I don’t get them often but today I got another skin tear, didn’t even know it until I tried to brush some dust off my desk and there was something sticky all over it. Then I saw a big smear on the edge of my desk which, of course, sent me on a search to find out where I was bleeding. Had blood smeared everywhere on my desk and trackball. I guess it’s just another way to remind me that I’m not as young as my mind thinks I am and that skin tears are just part of the fun with COPD and several other conditions including just plain ol’ old age so … message received, not believed because it’ll happen again when I forget and do something I shouldn’t be doing and doing it fast.

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    • By Lyn Harper, RRT Moderator

      Hi Paula,

      I’m sorry you’re feeling down. Some of the symptoms of COPD are certainly more troublesome than others – and the skin tears are right up there. You probably saw this article, but I thought of it immediately when I read your post. Tonya added some great tips for treating skin tears. Here’s the link: https://copd.net/caregiver/what-is-a-skin-tear/

      Regards,
      Lyn (moderator)

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    • By Casey Hribar Moderator

      Hi Paula! In addition to what Lyn said, I just wanted to chime in as well and let you know that we’re thinking about you and that we’re here for you. I’m so sorry that this happened to you at work, but want to thank you for taking the time to share with us. Please keep us updated on everything. We’re sending warm thoughts your way! -Casey, COPD.net Team

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  • By BreathlessinEssex

    Hi newbie here just reading some of the posts and how depressed people get with illness.I was dx in 1999 with alpha1zz.I immediately gave up the smoking and drinking as my doctor told me the consequences if I did not. I also gave up my life for what I had made it and had to restart all over again.No physical work no meeting up with friends and family, in pubs and clubs only garden bbq’s where I could breath fresh air.
    Family members on the wifes side still smoked infront of me which I found really annoying but being an ex smoker what could I say.I quickly realised I had to change and create my own safe circle.
    From 2000 till 2008 I changed my work to a less physical job I became a security guard. No more running bars or jumping on and off wagons lifting heavy loads and what hurt the most no more football. I did try whilst at work at nights walking upstairs 9 floors and running back down them but as my illness took hold that idea began to die out. In the end I had to retire early at the ripe old age of 54.
    Thats when I started getting depressed and screaming at everyone close to me and sitting in my office not going out. I even left my UK support group which I had come to rely on for outside world information.I just kept arguing with members for no known reason.
    That in itself made me feel more alone and depressed with no one to chat to about anything,my own fault I know but quite a few loyal friends did keep in touch even to this day.
    I was so annoyed with myself and others I had done everything that the doctors told me to do took all their pills and jabs and scans but still got worse.
    2011 arrived and I had my flu jab and was laid up for nigh on 6 weeks I was put on o2 my fev was 18.
    All that time in bed made me decide no more feeling sorry for myself and quickly made some changes when I started walking about.
    I moved away from my local hospital because the doctors knew nothing about Alpha1 which is different to COPD in so many ways and asked to be refferred to The Royal Brompton so that I could apply for a transplant.
    The doc there sent me for some tests and then a week later we had a chat he advised that I use long term anti’s for a start and that I start thinking more posative and maybe after a few months he will have another look at my stats and decide then whether or not to put me on the list because at that time my body was to weak.
    I told him I had already started building up my immune system which was totally shot to pieces with a herbal remedty I had found online.
    I also told him I would never have another flu jab after the last one.I have now been infection free since that time.He did call me back in after 6 months and because I was starting to feel stronger I said I had re-thought my decision and for the moment was happy to leave things as they were.
    Has it was it was the right decision because I found out just over a year later that my COPD had also caused my LVD (heart) and I am now on blockers to slow that down and a heart muscle strengthener (Perindopril) If I had gone through with the transplant I may well of needed a new heart as well.
    I now use o2 when needed thanks to Brompton for helping me get that, but I will not depend on it if I can help it.
    I have a portable machine and small cylinders which are easy to carry on my shoulder. My body still feels strong although my lungs and heart will not allow me to do anything physical. Somedays I get the old depression back but I will not take any meds for it just the odd Chamomile to keep me calm. Normally this happens in the winter periods when I am grounded but in the spring and summer I potter about in my back garden and sit in the sunshine and drink the odd bottle of cider.
    Life can still be fun and there is always a way back.

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    • By Lyn Harper, RRT Moderator

      Hi Breathlessinessex – Thank you so much for posting that candid reflection on your experience with Alpha 1 COPD. I applaud your positive attitude and determination to keep going – it’s inspiring to all of us. I hope you have a great spring and can do a lot of puttering in your garden. I’m looking forward to much the same thing.

      Warm Regards,
      Lyn (site moderator)

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  • By BreathlessinEssex

    Pottering not Puttering.lol
    I can’t play golf to save my life thats where I presume you do puttering..lol
    Thanks for the welcome by the way Lyn.

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