My Roller Coaster Ride with COPD
Hi, my name is Bonnie Adler and I LIVE with COPD.
I was originally diagnosed in 2008 – at that time I was early Stage 4 with this Disease. Prior to my diagnosis, I believe I was in denial. I knew I was struggling with breathing but I blamed it on many things, smoking, aging, overweight, not exercising – but 6 Hospital stays later I could no longer deny that there was something wrong. Thus my New Life with COPD was about to begin.
My Pulmonary Dr. talked to me about first stabilizing me, then getting me into Pulmonary Rehab and about possibly getting on the list for a Double Lung Transplant. I struggle with Emphysema, Chronic Bronchitis, Bronchiectasis and Chronic Respiratory Failure
I knew my Dr. had to be crazy, me in Pulmonary Rehab, I could barely walk! I had been in a wheelchair for 4 months now. Yes, he had to be crazy. But he insisted and to this day I am grateful he did. That was a HUGE turning point for me.
The first day in Rehab was hard to deal with. It was an eye-opener. I could barely do anything. I did 2 minutes and 38 seconds on the treadmill. I decided NO, this is not for me. But this gal just could NOT quit so I did go back. Three weeks later I was walking in and out of Pulmonary Rehab, no longer being wheeled. To this day I continue with both Rehab and exercising on my own. Today I can walk 45 minutes on a treadmill some days easier than others. Yes, I have come a long way.
During this time I was also working with a Lung Transplant Center, learning all about that and the risks and going through all the testing. I was officially listed on 1/14/16 and am still waiting.
Was it an easy road? – No I had many setbacks and I still do, a few hospital stays and a scary ICU stay. I often still feel it is 3 steps forward 2 steps back, but I keep moving forward. I tried to read and learn as much as I possibly can about this disease, being very careful to stay with reputable sources. I had to be able to advocate for ME because I am worth it!
This is a rocky winding road walking with many – all the same yet all different. I have learned a lot along the way and I continue to learn. I learn from others and I hope they learn from me and my experiences and me sharing my story.
Some of the important things I have found on this journey:
- Find a Great Dr. that will both listen and explain
- Bring a notebook with questions and write down notes at every appointment
- You have to communicate with your Dr. He cannot help you if he doesn’t understand your struggles.
- Don’t isolate yourself
- There is NO shame
- Keep moving
- Explain your struggle to family and friends, it is not easy for them to understand, as it is never easy to understand unless you walk in those shoes. But keep explaining!
- I am NOT alone.
- Keep trying
- Don’t let your numbers define you. I currently have an FEV1 of 16% but that is only a
number it does not speak to who I am!
Have a Great Breathing Day,