Congratulations, John. Amazing work and an inspiration to others.

@gillers198 Hi John, I was glad to read your update and am really glad you are doing so well. An update from me follows, namely I'm in the process of totally switching gears. Since I have been coping well with my left paralyzed diaphragm, I had decided to put off plication surgery until my symptoms became really debilitating. Because of my age (75), I had some concerns about whether this was the right decision that might compromise my health prospects in the future. Because my paralyzed diaphragm is floating, my internal organs are moving up into my chest cavity, which I was afraid might lead to serious problems with them in the future. Additionally, I didn't know if there was an age limit after which plication surgery couldn't be performed or if there was a point of no return where the diaphragm became so atrophied plication wasn't possible.

Because I've evidently had this condition for so long, I knew there wasn't any hope of my phrenic nerve healing itself. For people with a recent injury to the phrenic nerve that's resulted in a paralyzed diaphragm, it is recommended they wait for a couple of years to see if the phrenic nerve will heal itself before pursuing other surgical options. I also ruled out diaphragm pacing and the nerve graft for a variety of reasons and don't know if I would have qualified for them anyway.

Yesterday I had a videoconference with Dr. Mark Ginsburg, chair of the Diaphragm Center at Columbia University Medical Center in NY. He probably knows more about this rare condition, i.e. paralyzed diaphragms, and how to treat them than anyone in the world. He said if I waited age wouldn't preclude me from getting plication surgery later and the diaphragm was never too atrophied for plication surgery to be successful. He brought up something I had not even thought about that has prompted me to have plication surgery in the near future. He said that even though my paralyzed diaphragm wasn't adversely impacting my quality of life, it was putting my life at risk. My internal organs moving up into my chest cavity were compressing my left lung to the point it wasn't working, and I was relying totally on my right lung to breath. He said if I got pneumonia, COVID, or some other lung disease I would be in serious trouble, ie might not survive. By having the plication surgery done to flatten my diaphragm and hold it in place, the capacity of my left lung would almost return to normal ... and I would have two functioning lungs.

There have been incredible strides in doing plication surgery. Most experienced thoracic surgeons are using VAT minimally invasive surgery with robots for plication surgery. They make three small incisions in the abdomen, use robots to do the folds and sewing of the diaphragm, and tie it in place. Dr. Ginsberg said the surgery would take 30 minutes. Patients generally go home the next day. Everyone is different; but the recovery time for most people on the facebook paralyzed diaphragm page who have undergone this minimally invasive plication procedure has been a couple of weeks. They took Tylenol to deal with whatever pain and discomfort they had. For some it has been longer and more painful.

Anyway, I'm totally rethinking things and will be pursuing plication surgery in the near future...after I lose more weight. I'm lucky I have some options of where to go...because there aren't a lot of skilled thoracic surgeons doing this type of surgery. If I were still in MN, I'd go to Mayo in a heartbeat. But it's too far for me to get there, particularly with COVID still raging. I'm hoping to have Dr. Ginsberg do the procedure in New York, since I think he is the best and has the most experience doing them. Another option is Cleveland Clinic. Anyway, I'll let you know how things go in a few months. I'm really glad you are doing so well! Everyone says exercise is key when you have a paralyzed diaphragm, which you can certainly attest to. Take care...Nancy

Hi John -- one of the people in the FB group for people with paralyzed diaphragms had the same experience. As a result of his being a superstar (my word) and consistent strong swimmer, he was able to restore his lung function completely and recover from the effects of his paralyzed diaphragm through swimming. It's pretty amazing how the body can heal itself. I'm so happy for you! Every time I read one of his posts on FB that mentioned swinging, I thought about you. You were the first person who reached out to me when I started my journey looking for information about my paralyzed diaphragm, and that really meant a lot. Thank you!