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COPD Compass Care is an independent online Chronic Care Management (CCM) platform providing COPD education, advocacy, resources, practical tools, peer and caregiver support, research information, and community connection. From oxygen and medications to pulmonary rehabilitation, palliative care, transplant, lung volume reduction, clinical trials, emergency preparation, and educational tools, we bring practical COPD support together in one place. Our mission is simple: empower people affected by COPD to become better informed, better prepared, and stronger advocates for their care.
Join Us Today!“I came looking for information about my COPD and ended up finding a community. The people here listen, share their experiences, and genuinely care. Sometimes knowing someone else understands makes all the difference.”
“When you’re living with COPD, it can be overwhelming trying to understand your tests, medications, and treatment options. COPD Compass Care breaks things down in a way that actually makes sense. I wish I had found this community sooner.”
“I’ve belonged to several COPD groups, but COPD Compass Care feels different. The information is practical, the support is genuine, and there’s no judgment. It has become one of the first places I turn when I have questions.”
COPD Compass Care has given me something I didn’t realize I was missing—people who actually understand what living with COPD is like. I’ve learned so much and finally feel like I’m not navigating this alone.
“COPD Compass Care has helped me become a better advocate for myself. I’ve learned what questions to ask my doctors, how to better understand my condition, and most importantly, that I still have a voice in my own care.”
My husband is 71 and 1.5 yrs post DLT. He’s still gaining his previous strength but he’s doing absolutely everything he loved before. Out riding his bike, walks, hikes and yes, all without feeling out of breath. He’s even on his tractor with an N95 on. Because you lose so much strength prior to transplant, it takes time getting that back. And, long hikes, walks, and an active lifestyle is the best gift you can give those new lungs!
I had asthma acquired from the war 22 years ago and IPF 10 yrs ago. I had my DLT 8 mos ago, I no longer have asthma or IPF. I’m not fully back to myself yet, but getting there. I would say it’s worth it. God has plan for me. Which I prayed when my lungs were collapsing and left it in His hands. If I made through the surgery then it was meant to be. I would handle whatever came my way. I wish you luck and prayers to you.
Receiving a DLT has been the most amazing experience of my life. Before transplant, I was on oxygen 24/7, and it was a struggle just to bend over and tie my shoes. I coughed all day and could hear my lungs crackling when I breathed. I’ve always loved hunting and fishing, but my health took those things away. I was in the E.R. three times during November and December 2023. The last time, I spent a week there with double pneumonia. On the way to the hospital around 1:30 a.m., my heart rate was in the 140s and my saturation was in the 70s and dropping, even with my portable concentrator maxed out. I told my wife that if I died, I didn’t want to be resuscitated. They put me on high-flow oxygen and eventually had me sleeping with a BiPAP. I went through about 114 days of transplant testing. After approval, I got my first call 26 days after being listed, and it was the one. My family and I loaded into the van, excited like we were headed to Disneyland. I went through the transplant without fear and spent 38 days in the hospital after developing blood clots and CMV. When I came home, I was taking 45 pills, a daily blood thinner shot, and had monthly IV infusions. Now I’m down to 15 pills three days a week and 14 the other days, with no shots or IVs. By August 2024, I was catching 20-pound salmon on my fly rod! I play basketball with my son, hunt, fish, work on cars, cut my grass with a zero-turn, and ride my bike. I walked 7.5 miles around Lake Cadillac months after coming home. This year at the Transplant Games, I took home two gold and two bronze medals in bowling and Texas Hold’em. 966 of us set a Guinness World Record for the most living donors and transplant recipients together. I go to church and sing without coughing or getting out of breath. Whatever I do, I can keep pushing and my saturation holds up. It’s simply amazing. Without this transplant, I never would have made it these extra years. I love my story and I’m glad to share more. God bless! —Tim
I was like you. I found out I had COPD in 2009 and I had been on oxygen since then started out one liter and I watch my mom pass away in 2016 from COPD. I held her hand as she passed. It was the hardest thing I ever had to do but I called my pulmonologist in Paducah and he told me to call Hospice go home lay down and get ready to die. I decided I wanted more out of life so I called a pulmonologist out of Vanderbilt Hospital. Advocated for myself. Not this June but last June I was in the hospital for 2 months first month and a half intubated and in a coma and they thought that I wouldn't live and that's what they told my kids. But I pulled through and decided with the team of doctors that I was going for a lung transplant because I wouldn't have made it to 3 months. I was transplanted December 24th 2025 and 2 weeks after leaving the hospital I was in the Extended Stay America cleaning up by myself scrubbing the baseboards a tub everything that needed to be cleaned because it was nasty to me. But the biggest thrill for me was being able to cook because I had a gas stove in the oven and I couldn't do it with the O2 I still have a little bit of pain on the incision and wearing a bra but other than that I'm driving again cooking again I'm going for short walks I'm doing everything I want to do I go to the grocery store and I hadn't drove the car and over 5 years so this is all been new to me but so exciting I am praying best of luck for you and hoping you do what's right for you.
I had a double lung and liver transplant 20 months ago and since then, I spent a month flyfishing in Montana and Idaho, bought and remodeled a house, did a huge landscaping project, traveled to see my kids multiple times, went flyfishing near my home in Asheville about 20 times, hike every week with my golden and had a hip replacement too. I was on 15L of O2 before transplant with less than 6 months to live. My PFTs are the best they have been in 4 years.
I had my double lung transplant 18 months ago . I am back doing absolutely everything that I want to . Hunting , fishing , hiking and travelling ( going to Europe next week for 5 weeks ) I eat anything I want . I take my meds religiously but that is my only restriction! I had advanced stage 4 COPD before my transplant! I was on oxygen 24x7 for 4 years . I couldn’t walk 50 yards with my oxygen cranked up ! Now I walk 4-5 miles a day ! I was within 2-3 months from death when my surgery came through. I couldn’t be happier with the outcome and have had no regrets ever ! Go for it ! Hope this helps !
I had severe COPD. 19 percent lung function before my DLT 10 weeks ago. Chad I have never felt healthier. I was up and walking 2 days after surgery. Discharged from hospital 2 and half weeks after surgery. 8 weeks of gym 3 times a week and clinic appointments to stabilise Ned's. It is all absolutely worth it. I couldn't go anywhere With out oxygen pre transplant. Now oxygen free I can walk as far and as fast as I like. The difference is unbelievable. If you can remember when life was normal and you were active,well it's better than that. I feel like a twenty year old and I am 66. Absolutely no regrets. I can only reassure you that you won't look back. I had my DLT in Melbourne at the Alfred Hospital. What an amazing team they have there. Please go ahead and get on the list. Believe in yourself and keep a positive outlook. It's the best thing I ever did and I, like you, was asking all the same questions. Xx
I had a DLT a year ago and I’m doing physical stuff I haven’t been able to do for many years. Including breathing. It’s awesome not suffocating while trying to walk and talk. Each and every patient is different so there’s never a written guarantee. Stay active, work on strength and stamina prior to surgery and recovery will go better. Post surgery you still need to be careful and protect yourself from poor air quality and sick people. Masks are necessary at times. Is it worth it, heck yeah. Sure the hell beats suffocating and waiting to die!!
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