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

Your poor brother. I'm so sorry he is going through all this! After damage to the phrenic nerve, most doctors recommend waiting up to 2 years to see if the phrenic nerve will repair itself before thinking about doing anything else. If the damage occurred a year ago, it still might heal itself. He is lucky to have you in his corner. Best wishes to you both!

My phrenic nerve damage is the result of a pneumonectomy last week. My voice is hoarse and weak. After i recover from the surgery, I’ll explore ENTs and try and find someone who has experience in this area. I live in the Pacific NW but I’ll travel if i get a recommendation of a great doc somewhere.

How do you know your phrenic nerve was damaged? Did they test and tell you?
I had video assisted thoracic surgery for lung cancer 3 days ago and I lost my voice immediately. I have no volume and can only speak in a whisper and it is hoarse. I have never lost my voice before. I asked the attending surgeon of the day who only replied she was not worried but offered no information on it, or how long it would take for my voice to get back to normal. I live alone and it is now hard for me to communicate with others on the phone.

I had apneumonectomy in November. My surgeon said he had to sacrifice my vocal cord. I was scheduled to get a surgical implant to fix my voice but it came back in its own After 5 months. Thank God. Living without a voice is hell. Maybe you’ll catch a break.

Thanks for your prompt reply. Did your surgeon tell you up front or after?
Was it as I describe? I can only whisper in measured words. But my throat is not sore. I am not talking much but it is not getting better.
Living without a voice can be a real handicap. I am happy you got yours back. Is it normal?

I think he told me after. My voice was hoarse and i couldn’t get more than three or four words out without stopping to take a breath. It was weak. I spoke to a voice and swallowing clinic at Oregon Health and Science where i live. They offered me different temporary treatments which didn’t last more than several days. I opted to have an implant but my voice started to get better a month before the surgery. At first i couldn’t tell the difference but more and more friends told me my voice was getting better. It’s pretty much normal now. I know what you’re going through, it’s awful.

I think he told me after. My voice was hoarse and i couldn’t get more than three or four words out without stopping to take a breath. It was weak. I spoke to a voice and swallowing clinic at Oregon Health and Science where i live. They offered me different temporary treatments which didn’t last more than several days. I opted to have an implant but my voice started to get better a month before the surgery. At first i couldn’t tell the difference but more and more friends told me my voice was getting better. It’s pretty much normal now. I know what you’re going through, it’s awful.

Thanks for the info ...that helps

I was diagnosed with a paralyzed right diaphragm back in January. I also have shortness of breath especially when I swim. I had open heart surgery back in September of 2016 and my heart doctor has ruled out phrenic nerve damage because of the time between the heart surgery and when this started. The doctors think I injured the diaphragm somehow and if I did I never had any pain or any other symptom. Has anyone read or had a surgical procedure that can be done to pull the diaphragm away from the lung?