Mornings and rehab
So, a Lil catch up quick. I had a test done last year. And I got a 78 fev. I wasn't told it was over the line at the time, and I have copd, just that I was the still pretty good. But I have asthma also and I was never told the actual numbers then and continued on like it's just not too bad asthma. I'm sure I would have remembered being told at 42 years old I have lung disease.
So last month I went to the Dr to discuss my inhalers and treatment, she pulls up my test and says, oh, it says mild copd, at the end of the appt, then says our chronic illness nurse will call you in a month, see ya later.
So I go see the nurse a month later, but still in shock and some denial. And she also verifies its at 78. I get hit with shock and clam up again. She asked if I had any questions, and of course I don't, I dont even understand what I, just told. So I just asked if I quit smoking do u think I can get a few percent of my function back. She said it's possible, and that was it.
Also I'll all that I have sleep apnea too.
So that's the history up to a few weeks ago. Now last Thursday I noticed I started waking up really tight in the chest, nausea, chills, sweats, shaking, light headed and heart rate racing, and it would last all day. And it was more than usual. I couldn't do 1 item out of 10 in a row I could do a few days earlier.
So I went to the hospital on Friday and explained everything. They said I had a panic attack and sent me home.
So on Monday I was still feeling like that so I called my clinic ajd the nurse instructed me to have a xanax and see what happens. I did and felt way better and could do my day normal.
But now it's Tuesday and I woke up after 7 hours and felt the same, sick to my stomach, tight chest etc. Even tho I did take xanax before bed.
Now it's 1.5 hours later and I'm starting to feel better.
Now that I'm done rambling, my questions is this. Is this something that's normal, and never gonna rebound. Like it's bad enough that I am getting scared to lay down at night. Also will pulmonary rehab help me. Do u think this just sounds like a flare up.
Also I quit cigarettes on Saturday afternoon too. I'm still smoking a bit of weed tho to help me through the beginning. Altho It sounds silly, a bit of weed actually makes me feel like I'm breathing a bit easier too.
I'm just confused, frustrated, and having big time panic attacks, making ,e go to the hospital, because, as you can see, I was not told much about the illness, just told you have it, have a good one.
,
Wow, that is quite the journey. First thing I would do is get the doctor to refer me to a pulmonologist. The pulmonologist will be able to answer your questions and get you on a program to help your breathing. A 78 on your breathing test is actually moderate COPD and not mild COPD. I tested out at 77 and am a moderate COPD sufferer. COPD is a progressive lung disease and not a curable one. It does not get better, just gets worse with time. At this point, all of us COPD sufferers can hope for is maintaining our disease and slowing it down as much as possible.
Would a pulmonary rehab program help you? Yes, it would. Learning breathing techniques and exercises to help your breathing is a big plus. I haven't smoked a cigarette in over 12 years, so keep working on the quitting as it isn't easy by any means. I also smoked weed for many years but haven't done that in several years. Anything I can eliminate from irritating and aggravating my COPD, is a plus. Smoke (from cigs, weed, BBQs, etc.), dust, animal and pet hair and dander, strong smelling perfumes and cleaning products, pollens, mold spores, ozone action days, too much humidity, excessive heat, excessive cold, etc. all can cause flare ups. A flare up for me is a lot more coughing, hard to catch my breath, and being very tired.
I haven't experienced panic attacks, so I cannot comment on any of that. As I stated earlier in this post, get an appointment with a pulmonologist and ask a ton of questions. Let him/her guide you through the best plan of action that works for you. Take care and let the forum know how things go for you.
Hi Tab, and thanks for sharing your story here. As, has remarked - this has been quite the journey for you! I can't help but think that you have not been treated properly at all, but rather everyone you've seen has provided you with a 'snippet' of a diagnosis and did very little to give you a comprehensive assessment, accurate diagnosis, proper treatment plan, and suitable medication regimen. Having said that, I agree with Dminor - you may want to get out there and find a knowledgeable and capable pulmonologist. There is much that can be done now to slow down the insidious progression of the disease in the future.
I think that once you are under the care of a devoted pulmonologist, you will be on the proper course to manage COPD moving forward.
Naturally, you can count on us here at COPD.net to provide whatever support, information and encouragement we can. Please know you are always welcome here in our online community.
What do you think?
Leon (site moderator COPD.net)thank you. I stacked some pillows and layed at a bit of an angle last night and layed on my side as usual. I managed to lay there for about 8 hours and sleep. When I was laying I didn't feel too bad, but I sat up and I got heavy chest and my stomach started to turn. But it seems like it started to clear out way faster today too. Since Thursday it has taken hours to feel better. But today, after only a half hour, I feel things subsiding and clearing some.
So I guess I'm gonna call the clinic before they close ajd ask them if I can come in to discuss treatments, medications, therapy, other possible testing, Since last test was 18 months ago or so, and since I collect disability for other issues, see what can be purchased for at home to help me, from wedge pillows to night blood oxygen meters as ideas and get all that.
I appreciate your help. As someone kinda in the dark atm, hearing some supporting words means alot. Just this back and forth has even eased some of my panic attacks. I'm currently just experimenting with a few things that I have had read about online like the pillows. I just hope I can still sleep in bed for a long time before I have to sleep in a recliner or something cuz it's a shared bed with my love and I don't wanna lose that part of my life. Otherwise it wouldn't matter.
Thank you
Hi again, Tab - I'm glad to hear our conversations have helped you with some of this, including the panic attacks - that is a real positive, right! Try to be a little patient, if you can. This is challenging but, you seem to be on the right track! Keep at it! I'm hopeful you were able to reach out to the clinic and keep things moving towards an appointment with the right physician.
The community is happy to help in any way we can and to be of support, too!
Have a good night!
Leon (site moderator COPD.net)
Years ago I had a PFT that was 70. Looking back in my medical records two years ago there was an order in my chart to refer me to a pulmonologist. It never was done for some reason, maybe just missed. I was given a prescription for an inhaler that my insurance, at the time, refused to cover. I couldn't afford to buy it on my own. I just sort of ignored being tired, and kept smoking because I was so strongly addicted. My lungs got worse over time. Had I seen a pulmonologist I'm sure he would have done some follow-up, and further testing. Getting the right inhalers, and understanding what they are helping with is important. The PFT numbers dropped because the inflammation in my lungs just continued doing structural damage. You can take some action now that will keep things stable. The panic is part of it. You can do this.
sorry for the slow reply. But thanks. I am feeling a bit more relief now from the stress. It was scary. Hearing I have a lung disease, then sent on with no real information, then read on google I have a life expectancy of 5 to 10 years with it, then I wonke up a few hours later and couldn't breath, having a panic attack. When I went to the hospital, i was so sure they were gonna tell me that I'm now severe, not gonna get any better, amd soon be hospitalized and start living my last days. It's like I felt like I was gonna be told I have 6 months or something. Because in 2017 I learned I was at 80 then, but told asthma, then in 2021 I learned the test said 78, then I read 5 to 10 years on google. Well if I hat it in 2017 technically, then I'm about due to get sick getting die now. It did not feel good. But you can see how from 2017 to now, is 5 years, so I really thought this.
But then I come home and after a few days with some low dose xanax I calmed down and felt the usual. In the morning I may or may not need to cough something up, then I'm fine. Amd for shortness of breath, I can carry my groceries up a flight of steep steps that's probably 1.5 flights worth of steps, in multiple trips and barely feel anything. I can walk the dog for an hour at a time and I'm not short of breath. I can do housework till I'm sweating and need to stop to dry off some before my lungs made me. And any shortness of breath is usually cleared up in a few seconds with a ventolyn. So I'm back to feeling like I have asthma amd not the greatest lungs. Like I wouldn't wanna run any distance hahaha but my whole body would be pissed if I did. But I still do. Like a few months ago I sprinted for a block to chase the mailman down for putting the wrong expensive parcel in the wrong box, and after a few deep breaths I was ok.
Butnow the rambling aside. I'm finishing day 30 cigarette free, I'm past alot of the stages of grief that I'm sure I was going thru, I am accepting what I have, and just hope I continue to feel OK and that I can keep it mild enough that I can not get to like stage 4 before something else gets me like another natural cause.
I think I can, I think I can, I think I can. That about all I can hope for right. Slow it down so I'm don't die suffering from that.
Sorry for the ramble. But thanks everyone for having this site and the responses. It really helped me to get thru alot of this.
❤
Tab, I responded to you in the other thread, but I'm glad to see you've started a topic here as well for ongoing updates. I empathize with you so much in dealing with anxiety -- there is nothing scarier (to me) than facing a possible new health concern. Like you, I have also had plenty of panic attacks. I wouldn't wish them on anyone. As I mentioned in the other thread, I would encourage you to connect with a counselor if you are able to do so. Many today take insurance or work on a sliding scale. Some even specialize in providing low-cost or free therapy for people in need. I think everyone can benefit from therapy, whether they have a physical issue or not. The key is to develop a "toolkit" of coping mechanisms, a routine that you can turn to in times of panic to help calm down. Relaxation is key to helping you breathe well, too. In the meantime, can you explore some apps like Headspace or Calm, which teach relaxation skills? My own therapist often sends me videos from YouTube that she thinks I will find enjoyable or helpful. Maybe try searching for breathing exercises, or guided meditations for anxiety. Whatever you choose to do, remember that you are not alone!! There are many people here also walking this road with you. And you can always come on here and write to us, even if it's the middle of the night. Someone will get back to you. <3 You can do this! -Melissa, copd.net team
thank you so much for following up. I contacted the clinic today because I was back to feeling normal for me again. And that is waking up with minimal shortness of breath, thats gone after a couple deep breaths. But I have felt that for years from asthma, smoking, and sleep apnea. I can do house work for an hour or so before I take a break, and often cuz I'm hot or something before I'm that bad of shortness of breath. I also walk the dog for an average of 45 mins a day, if not more.
I also quit smoking at 7pm on the 16th with a patch. I'm not even caring I still have some in the house.
I am still smoking weed tho, but I think it's helping me get thru some of the quitting smoking hard spots. But maybe I'll switch to edibles after this.
I am in canada and I can get counciling for free, and I may just go do that.
I called the Dr office today and talked about getting more free patches, and I'll have 8 weeks total covered so far of patches.
I have, imo, made some big strides so far. Being told I have this now and having the panic attack is what kicked my ass and said just stop already and scared me good too. Because when u think your dying, and cigarettes are a likely cause, you definitely think about what's important.
Thank you so much for following up. I will keep up here, this page I think also helped me feel alot better about my diagnosis amd understand more.
For now the nurse practioner I spoke to today said they are lots of good videos about breathing exercises I can try and will help alot too. So that's my next step. 😀
