Concerned about severe weakness and pain.
Hi, I am new to this site. I am trying to learn to live with COPD. It has been a long, tough road. I also have prolapses where women have prolapses which does not help. My walking is hard to do because of that and now because of weakness and extremely shallow breathing a great deal of the time. I have bladder infections from prolapse, low back and spinal pain, because of the prolapse. I cough constantly and spit up a lot of sputum. White and foamy a lot of the time with intermittent blood streaks. Last time I went to my Pulmonologist she told me there was a specific "new concerning spot on one lung. Both are trashed by emphysema. Looked like honeycomb on the scan.The doctor said she wasn't concerned, YET. That was 6 months ago. I don't see her for another month. I asked her to tell me what stage I am in then but she would not. She said it was variable from patient to patient. Is this true? Could she have told me? Should she have? I feel like I do NOT KNOW me anymore. My abilities are fading quickly and I am a bit scared of what is coming next besides the already known. I have studies some. I am hoping someone here can give me some insight as to what I might do to KNOW what I am facing and how progressed I have become in 6 months. I now suffer with insomnia due to pain in my body, coughing and exhaustion. Help? Any words of wisdom would be appreciated so much.
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I am so sorry to hear of your constant suffering. A couple of points that I do not understand. You say your pulmonologist said there was a "new concerning spot on one lung". Then you say that she said she wasn't concerned yet. This is very confusing. Is she or is she not concerned? I don't understand her reluctance to tell you your COPD stage. I also do not understand the "variable stage from patient to patient". Sure, every patient's stage will be different, but the stages are well defined medically. A stage 2 is a stage 2. A stage 3 is a stage 3. Have you undergone a breathing test? After my breathing test results were in, my pulmonologist called me with the results and told me I was in Stage 2 COPD. Then he called in inhaler medications to control it. Communication between doctor and patient is essential for proper care of medical conditions. You might consider looking for a different pulmonologist or insisting on getting the answers you deserve from your current doctor. I would also look into getting treatment for the prolapses. There is surgery available to repair them, as this would definitely help with your lower back pain and walking problems. One other point, just because your doctor appointment is not scheduled for another month, does not mean you cannot contact the doctor if you are having problems. My pulmonologist tells me at every visit that if I have flare ups or problems, to please call the office and they will get me in for a breathing treatment or whatever treatment is necessary for me. My medical team tells me they would rather see me in the office than see me in the hospital. Please contact your doctors and get some help and relief for your pain and suffering and check into a new pulmonologist. Good luck and God Bless!Than you so much for your response. Sorry for the confusion about my Pulmonologist. She just doesn't give me clear answers. I am dealing with prolapse with surgery soon. I see pain clinic first time on Friday. Hoping and praying for some kind of relief.
Hi Taya, and welcome! I see you just recently became a member of our online community (earlier today), and we are glad to see you've jumped right in to the forums.
I also see our colleague/community member, has already addressed many of your concerns - I concur with what he has said. (Thanks, again, Dminor!)
I do have something else to contribute as well. If you are interested in knowing more about the staging of COPD - we have a few articles, published right here on COPD.net, which focus on that aspect of the disease. I thought this one might be a good place to start: https://copd.net/living/important-information. I do hope this provides clarification for you.You sure do have a lot going on. Oh getting the prolapses fixed will be so helpful to you, just having the weight of the organs moving back in to place, not having to worry about walking or even sitting gingerly. It was back in 2012 when I had mine done, wish I had done it sooner. Glad you have an appointment with pain management Friday, hopefully they can give you some tips and tricks along with a little extra help to keep you going. Hoping once the pain of the back and such is gone and healing, that it will ease your coughing and discomfort even more. I will keep in you my thoughts and prayers. Please keep us posted if you wish on how you are doing .
Hi
! Welcome to this great site. I hear you about your prolapse. I have dealt with that in the past. No fun! I had surgery for it in 2015. I’m much better now. There is hope for you. My dr has also told me that he knows many who live with this because they don’t want surgery. The stages do very on different things. They mostly go on your lung function. Do you know what yours is? If you have a copy of your latest breathing test it will be under Fev1. If you didn’t get a copy make sure you ask the next time you go back. You should be able to have every copy of every test that you have. I have a few nodules on my lungs as well if this is what she is referring to as concerning spot. It is common with COPD. They will keep an eye on it usually by a ct scan usually every year. I think your dr should have told you what stage you’re at. That’s your right to know but I will say you can’t dwell on that. I know many COPD patients who are still stable 20 + years after that diagnosis. We all deteriorate at different rates. Here is an article about cough and mucous if you’re interested. https://copd.net/living/normal-coughhttps://copd.net/living/normal-cough. Here is another article about stages. https://copd.net/basics/copd-stages.
Best, Jackie (Moderator)
