Newly diagnosed with COPD and fearful
I now realize that I have probably been having symptoms of COPD for several years but was in deniaI. After all, I never smoked so I couldn’t COPD. I got SOB walking up hills or stairs. Certain chemicals seemed to shut my lungs down. But it was a shock when I got the diagnosis after my pulmonary function test. I am a retired RN and I had made home visits to patients with severe COPD. I know how bad it can get. I also had a dear friend who recently died from COPD. I still feel it is so unfair. I never smoked. There is a lot of information out there on COPD but I feel I need group support. I am in a combined cardio-pulmonary rehab program right now but I am the only pulmonary patient and they have suspended their educational classes due to COVID. I have been asking the respiratory therapist there my many questions. My pulmonologist will answer specific questions but has not done much teaching.
I live in rural Texas. Our local hospital is 20 minutes away. There was a Better Breathers Club in town, but it no longer exists. I am looking into other clubs but they 45 or 60 minutes away in Denton or Fort Worth.
I am thinking of looking for another pulmonologist. There is one who comes to town 2 days a week who I might try.
I want to talk with other patients and share information. I feel so isolated. I would appreciate any suggestions. Thanks. 🙁
Hi
, I hear how overwhelming and stressful a new diagnosis can be, especially when it feels like it came out of the blue. Finding support among those who understand what you are going through can be so helpful! Our community is here to offer you support anytime you need but I also understand the need for some face-to-face support. I will also say, many of these groups have virtual options now because of the pandemic so even if they aren't in your area, maybe you can join them via a video call. Please keep us updated on how you are doing. All the best, Sam S. (Team Member). , I get it. I live in rural Arkansas after moving from the best medical care in Houston, TX just 3 years ago. The medical support here is questionable at best, and laughable at least. I find that most medical pros here are reluctant to volunteer any information. It is a large farming area with a high percentage of COPD and cancer rates due to the spraying that goes on in the fields. I've started using my insurance telehealth with weekly support from a respiratory counselor. Since I only see my pulmonologist about 3x a year - telehealth and google have become my best friends. Now, I can add finding this site to this list.
I've found it's about building a toolbox of information... an arsenal - after all you're at war with the disease now. Learn as much as possible, try things that seem to make sense to you. Keep what works, discard what doesn't, and build a regimen.
Good luck., you are so right! We are our own best advocates and having a toolbox of information and being prepared when we do go to those appointments is key! I'm so glad you are able to utilize telehealth. If there is one benefit of the pandemic it is that we have been able to embrace doing things virtually when able. Wishing you a peaceful day. All the best, Sam S. (Team Member). Thanks for your suggestions. I like your idea about a toolbox. We moved to TX from northern CA about six years ago and I have felt sick ever since. I live 20 min from Decatur, TX and I have been pleasantly surprised at the quality of health care there. Fortunately, I can drive to Fort Worth or Dallas (ugh!) if I need specialty care. I just received an email from my health insurance offering mental health televisits. I will look into that.
Welcome! I'm in Austin. I'm 70, and this is my first year dealing with severe COPD, though I ignored it for a few years before. I'm homebound. I have Medicare and supplemental insurance. Interesting about the rehab. I went through rehab back in May and was highly impressed! The therapy, care, and education was top notch! We had to mask up outside the room, but that's all. More than that is wasted anyway, so those other extra precautions are evidence of ignorance in the decision makers, IMO. I am now fully immunized, having had both Covid Moderna shots, and all the other shots, and if I want to feel like I'm safer, I have to be sure I don't look at the news! Because, according to them, I'm no safer than I was before. But all my healthcare comes to me at home, so I'm doing all I can do right now in that regard. I order my groceries, my car rots in the driveway, and my garage shop is full of brown recluse and geckos. I am alone 99% of the time. But I have family on Fb, friends by phone (including some with COPD). They just built a new Whataburger a block from my house but I can only dream! But, as the song says, "I Will Get By!" Thanks, kloker, for your response and suggestions. As I progress through rehab, I am getting stronger and have more energy. Since I am the only pulmonary pt in rehab I am getting special attention from my respiratory therapist there. She is good about answering questions. I am learning that I will have good days and bad days. Due to all of the symptoms I’ve been having, my primary doctor is testing me for adrenal insufficiency. So I am realizing that my COPD is not as bad as I thought. I just need to take my meds and follow instructions to slow progression and prevent flare-ups. Getting my husband to understand is another challenge. LOL.
There are folks here far more knowledgeable and experienced than me - I'm a rookie! One thing I've learned about COPD is that it is never just itself - there are always other issues. I'm not sure whether it brings them, or they bring it. Most of mine are from past issues, but the COPD (I guess) either exaggerates, exacerbates, or aggravates them, or they it. What I do know is that since the COPD came to the forefront, I've had pneumonia, cellulitis, edema, urinary tract issues twice, and all of that just this year! I was highly successful with my denial for years, and then this year God tapped me on the shoulder. Hard. So, I am kept quite busy juggling medications, symptoms, and the constant ebb and flow of my breathing issues, mixed with a bunch of other ones, in an ever-changing kaleidoscope of variations on a theme. Fun!!! Getting others to understand? Good luck. My son and his wife are quite critical of my past life, all the while standing there both still smoking! Just as I did for too long. I keep telling them, and they keep smoking. But I won't give up trying to convince them. Never surrender!
Thanks.
