Trying to remain positive when the unknown outweighs the known

By CommunityMember36e8fb

1 min read

Hi, I am a 56 year old woman, married with 2 children ages 30 and 26. I was diagnosed with COPD in my late 30's. I had a thoracotomy in my 30's due to a 9-inch bled in my lung. I am a former smoker, I quit 21 years ago and am a loss.

COPD and other conditions

I have so many health issues including a pacemaker, fibromyalgia, scoliosis, migraines, POTS, etc and most recently nystagmus and pulmonary hypertension. It is hard for me to imagine that at least some of the issues aren't related. I recently had a sleep study done and while my sleep apnea is very mild I apparently have severe hypoxia while sleeping - my 02 falls to 68 so I started using 2.5l of 02 while sleeping. I did very poorly on my most recent pulmonary function test. I watched my mom die in February 2022 from complications related to COPD.

Struggling with COPD

To say I am scared would be an understatement. I am looking for a new pulmonologist because since I am not ready to try the new "valve" he won't return my calls. I feel alone and afraid. I need a doctor who can answer some questions honestly about my disease and what to expect. I do feel winded most of the time now. I have requested a handicap placard for my car as well as a script to participate in pulmonary rehab and still nothing. I feel abandoned, alone and afraid. People don't want to discuss what's next but I would like to know what options I have because my Mom went to the hospital with 02 in the 70's and was put on a ventilator that she didn't want. I want to be able to make informed decisions and make sure I am doing all I can to live the best possible life with whatever time I have left. I am glad I found this group.

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kloker Member
<p>I'm absolutely with you! I'm 72 and have very severe COPD, along with a hiatal hernia, gallstones, a bad gall bladder, GERD, a bad left leg, tendinitis in my left elbow, a right shoulder rotator cuff tear, osteoporosis, possible A-fib, an old poorly healed neck fracture which is trying to push my throat closed and pushing on my spinal cord. Next Tuesday I'm going for a Brain MRI because it's all that left to try and ascertain the cause of my ever-increasing dizziness. They were here this week assessing me for my power chair. The ramp-builders are on their way to my back door. I can no longer walk even with my walker, and I am on Methadone AND Tramadol and pain. I have prostate cancer and it has spread to my C-spine, in C-1/2/3. They've already done a 4-minute long and some short burns of radiation in those locations. Luckily my COPD is mostly being have right now, because the rest isn't. I am on Erleada and Lupron and Zometa, which I have to get an infusion of again next week. The Erleada turns my stomach into a war zone, and the Zometa will set every bone in my body on fire again for another month or more. This is all aside from the 22+ COPD (and other) meds I take daily. I can barely walk in my walker, and have fallen several times using it, and have now fallen out of my desk chair once. I have a right torn rotator cuff and the left one is next. My left hip is barely functioning now. I injured my right heel falling and can barely walk on it, If they amputated everything that was damaged, I would be invisible! Otherwise, everything is peachy! Well, not exactly - this morning I got some cantaloupe, which I love! So, I know exactly how you feel. For me, fear is now just another symptom, as is the stress. I now have a Therapist (Psychiatrist) that I talk with weekly by phone, which is covered by Medicare and helps tremendously. You are in my thoughts and prayers, though - I still have a bit more room left! Everything is relative, or at least that's what my brother said! And even from where I am I still know someone who is worse off than me. God has enough Love and Grace for us all! Even me, and I need a lot to cover all the crap I've done in my lifetime. As the great white Father said, in the movie, "We must endeavor to persevere!" We must support each other, so that no one falls, which is why they call this a "net!" I am also a member of the Nuts Anonymous Net!!! I mean, we all need to belong somewhere, and I don't mean jail, either! My Mom was a Saint, so I hope to have some of that redemption rub off on me!<br/>I also sleep with an NIV (Non-Invasive Ventilator) at night and it's great! Also provided by Medicare. So I let my fear create a co-dependent (!!!) relationship with My God, and use all the tools I can find to stay mentally as whole as I can while I fight all this. If I can, you can too. So, I've added you to my nightly prayers. Never surrender! We all have to go sometime, but not necessarily today. Why, heck, I even have a new girlfriend!!! Life is still full of wonder!</p>

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