Phrenic Nerve damage and paralyzed diaphragm: Anyone else have this?

My brother had a double lung transplant a year ago. He has been hospitalized except for 3 weeks . His Phrenic nerve was damaged, he has a trach, on tube feedings, has had Klebsiella twice, CMV, told a couple weeks ago he was in acute rejection and was treated twice with IVIG. Now they are saying he has Chronic rejection, before that they said he had AMR. His kidneys have also failed due to all the meds and problems. He has fought so hard to live. Now he is getting rATG. He has been told nothing can be done for his diaphragm or Phrenic nerve. Please advise. He has suffered a lot but continues to fight to live.
Pam

I have the same problem on the right side. Doctors think it was some kind of damage. I do a lot of swimming and kept it up while trying to figure out what to do. My pulmonologist thinks the swimming helped keep my lung expanded and overcome the diaphragm problem. Passed all my pulmonary function tests and unless some thing comes up the doctor sees know reason for anymore visits. This may not be the answer for everyone, each situation is different.

I recommend dr. Gordon at Temple/Philadelphia

I did a videoconference with Dr, Mark Ginsburg at the Diaphragm Center at Columbia Medical Center in New York and highly recommend anyone with a weak or paralyzed diaphragm do the same. Many consider him to be the leading expert in the country on diaphragm issues. One of the things I've learned since my paralyzed diaphragm was diagnosed is that most doctors don't know much about diaphragms. Pulmonologists know a lot about lungs and thoracic surgeons know a lot about chest surgery, but few doctors in either discipline know much about diaphragms. Thus, I was really glad to find the Diaphragm Center in New York and have my case reviewed and get all my questions answered. People in the facebook group for people with paralyzed diaphragms have recommended doctors they've had great success with around the country, but I couldn't find one reported in the DC area. Good luck!

Everyone Believe, Receive GOOD HEALTH. AMEN

@seniordon09, what about requesting an appointment at Mayo Clinic in Rochester, MN to see if you might get an earlier appointment?

It will be at least 3 months until I can see a doctor at the Mayo Clinic in Phoenix, AZ !
I don't know if I can last that long !?

I had a blood clot go thru my lungs and heart and paralyzed the left side of my diaphragm!
My breathing has become very labored and I'm on oxygen at home !
Now my breathing issues are starting to affect my heart !
I've been to many doctors and so far I haven't had any relief from my breathing problems !
Does anyone know of a doctor who can help me ?
I'm from Oklahoma !
Donald Goss

Thank you for your comment. It is very helpful. I have been seen and evaluated and they are just waiting for me to say yes to surgery. From what I read I am fortunate to have a clear diagnosis and plan and to have been able to be seen by Drs who care, understand and really listen.
Thanks again!!

No. From what I see, the Mayo Clinic model is a Team of multi-disciplinary medical professionals that do the initial evaluation. It is a top-down concept so the identity of the actual surgeon is probably not known til you are accepted as a surgical candidate and are evaluated in-person at Mayo's facility.