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Not sure if I’m having a flare up or if this is my new baseline

I’ve had been diagnosed with COPD for about 10 years now. I smoked for about 50 years off and on. Quitting and restarting several times and now do not smoke at all. I’ve had a lobectomy (due to lung cancer) four years ago. Up until about 3 months ago I was doing water boot camp 5 hours a week and I was quite active with no problem breathing. My sats were around 97. In February I went to the ER with breathing problems. They gave me a steroid shot, a couple of breathing treatments, a course of antibiotics and I felt better. I went back to the pool and I was able to continue working out as before. I finally got in to see a Pulmonologist and he started me on a nebulizer, Mucinex, and a stronger long term inhaler. Well since then I’ve really gone downhill. My breathing is really bad. Just doing my morning routine leaves me breathless. My sats go between 88 to 94. This has been going on for a couple of months now. I guess I’m just wondering if anyone has experienced this type of a decline so quickly? I’m wondering if I’m going to get better or is this my new baseline? Any insight would be appreciated.

  1. Hi , and thanks for your post and question - it's a good one! I am hopeful others in the community will see your post and respond by sharing their own personal experience managing this disease (COPD), with you. I also have something to contribute.
    In my experience, some folks with a COPD diagnosis are doing fairly well for a lengthy period of time when suddenly, their condition may deteriorate seemingly, overnight. That sounds to be what has happened to you. Would you agree?
    For some of these patients, the period of time during which they are doing well, they may have been considered to be in the early stages of the disease. Since the disease is progressive and insidious, the appearance is that it has changed almost overnight. In reality however, it has been advancing continuously and then, changes rather dramatically.
    In your narrative, the change in your condition seems to have occurred shortly after the pulmonologist prescribed a change in the medication regimen for you. For some folks, it can take a bit of 'trial and error' to determine the best medications for each patient.
    You may want to discuss these aspects of your present symptoms with the doctor. It is possible that further evaluation may be in order.
    What do you think?
    Leon (site moderator

    1. Thank you for your response. I do have a follow up with my Pulmonologist in about 4 weeks. I really don't feel like anything we've tried so far is actually working. I've also got a lot of wheezing going on so he did say perhaps a broncoscopy might be in order. I really do feel lost at this point. Unfortunately, I don't communicate with my Pulmonologist very well and they are at a premium here in Arizona so trying to find one that's a better fit for me is out of the question. This forum is comforting for me so thank you!

      1. Hi again, Klany, and thanks for responding so quickly to my initial remark to you. It is gratifying for all of us (on the team), to know that our community website/forum is such a comfort for you.
        Clearly, the pulmonologists are rare in your locale, by all means stay connected to this one. Perhaps it will be helpful for you to prepare a list of your concerns/questions before your next visit. That might make it easier to you to communicate more productively with him/her. If possible, would you consider having a close friend or family member accompany you to the office appointment? Sometimes, a second person, who can be by your side during the office visit can be extremely valuable.
        What do you think?
        Leon (site moderator

      2. sounds like a good plan. Thank you

    2. Thank you!

      1. Kiany is the only name I've used. My name is Kathie

      2. Hi Kathie (CM8b4cce) - thank you for clarifying this - it makes it much easier (for me), to know who I am conversing with! I appreciate you letting me know! I also see my 'old eyes' misspelled this screen name of Kiany (as Klany!) - I apologize - I have it correct now, Kathie!!
        Thanks for your patience...

        Have a good night!
        Leon (site moderator

    3. All I can tell you is I quit smoking in August 2022 and was on oxygen 24/7 in April 2023. I was an RRT for my career and had to stop working because of MS. Fortunately I was able to do everything and then quit smoking at age 68. I knew I had COPD but was shocked it was to that degree. My Sao2 off o2 run in the 70's and low 80's. When I did my PFt test I did pretty good but my diffusion capacity was very bad. Anyways I would definetly get a re-evaluation to see because the disease is progressive and and as leon states itis insideous. My pulmonary doctor told me to stay active and to do pulm rehab virtually. My goal is to come off o2 but I kind think it is unrealistic.

      Good luck, and see your doctor

      1. my pulmonologist tells me stay active and I'll see you in 6 months what a joke I told him how do u stay active when u can't breath after walking 10 feet I asked him he says we'll stay active but don't overdo it...that's pulmonologist #2 I'm going to a 3rd one at the end of August....I can't do anything walking from one room to another is a chore even with my 02 heart rate goes through the roof...I was diagnosed Jan 2021...I was a nurse until then and took care of many copders he says I'm maxed out on meds he put me on breztri and a rescue inhaler I know there's more things out there to try I've given them for years what a joke...I'm 53

      2. Hi again, CM541276 - I hear you! I subscribe to your plan of seeing yet another pulmonologist. As a clinician who took care of folks with COPD for years, you are well aware (as you said), with the various forms of treatment and support. If you can continue to look for a doctor until you find the right one, I am sure you will be rewarded when the two of you collaborate on your treatment plan and medication regimen.
        Please do check back and keep us apprised of your progress. If there is anything we can do to assist you, 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

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