Diaphragmatic paralysis after heart transplant, experiences?

Posted by Brenda White @brenwhite, Jun 14, 2020

My son received his heart transplant at the Phoenix Mayo campus this past April. It became apparent fairly quickly, due to a very observant ICU nurse, that he wasn't breathing properly after he was taken off the ventilator. The paralysis seemed to be left side only and the hope was that any injury from the cardiothoracic surgery would heal itself in time but now looks as though it may need surgery to repair it.
He's unable to lie flat and be able to breathe normally, he has to use a bi-pap or CPAP to assist if going through any prone procedures or even just to sleep. Just inquiring if anyone else has experienced the same condition and if allowing more healing time was a factor in the paralysis getting better?

Interested in more discussions like this? Go to the Transplants Support Group.

Colleen Young, Connect Director | @colleenyoung | Jun 14, 2020

@brenwhite, there are a couple of discussion on Mayo Clinic Connect in other groups that I think will interest you to follow and ask questions. Please see:
- Paralyzed Diaphragm https://connect.mayoclinic.org/discussion/paralyzed-diaphragm/
- No cause found for recurring right hemidiaphragm paralysis https://connect.mayoclinic.org/discussion/no-cause-found-for-recurring-right-hemidiaphragm-paralysis/
- Phrenic Nerve damage https://connect.mayoclinic.org/discussion/phoenix-nerve-damage/

Brenda, what type of surgery might he need?

John, Volunteer Mentor | @johnbishop | Jun 14, 2020

@brenwhite, Here are a couple of articles that I found that might provide more information.

Diaphragmatic palsy after cardiac surgical procedures in patients with congenital heart: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2921518/

May 19, 2019 - susceptible to injury during cardiac surgery. We present a case of diaphragmatic paralysis (DP) post orthotopic heart transplant & discuss the ...The Faltering Phrenic Nerve: https://www.atsjournals.org/doi/abs/10.1164/ajrccm-conference.2019.199.1_MeetingAbstracts.A1759

Rosemary, Volunteer Mentor | @rosemarya | Jun 18, 2020

@brenwhite, It is a blessing that an observant ICU nurse observed the paralysis and breathing problem. I am a transplant recipient (liver and kidney) and hope that this does not affect his healing after his transplant surgery. I do not have any experience with cardiothoracic surgery and its side effects, but I want you to know that I am thinking about him and you.
Is he going to need mor surgery?
Hugs to you.

Brenda White | @brenwhite | Jun 18, 2020

Thank You @johnbishop @rosemarya for links and information to research. I have read a good amount of what is out there. I was hoping to hear from any other transplant recipients who may have experienced it, but looks as though this is as uncommon of a condition as it says it is. @colleenyoung, he will need what is called a surgical plication that lifts the diaphragm. He undergoes more pulmonary testing next week, we will make a decision to proceed after those results. Again, thank you for your responses and best wishes.

Colleen Young, Connect Director | @colleenyoung | Jul 5, 2020

In reply to @brenwhite "Thank You @johnbishop @rosemarya for links and information to research. I have read a good amount..." + (show)

Hi @brenwhite, I'm checking in. What did you learn with the pulmonary testing? What's in store for your son?

Rosemary, Volunteer Mentor | @rosemarya | Jul 19, 2020

In reply to @brenwhite "Thank You @johnbishop @rosemarya for links and information to research. I have read a good amount..." + (show)

@brenwhite, I am sending my thoughts and hopes to you and your son on this Sunday morning. As a transplant patient/recipient, I know how complicated our lives can be. As a mom and caregiver for your son, we are here for you.

marvel1998 | @marvel1998 | Dec 13 5:48pm

Hi Brenda, I read your post about your son and I’d first like to say I hope everything is alright with him. I was born with a congenital heart defect, and in 2017 I had a heart transplant. It’s been 7 years since I had my heart transplant. I had a ct scan of my lungs this past Wednesday, and today my lung doctor called me and told me I have the same thing your son has my left diaphragm is paralyzed. I have the same symptoms as him also. I can’t lay flat or sleep flat. Now I don’t need any help yet for my breathing but just wanted to reach out and see how he’s doing, or if anything helped him. My name is Matt by the way

Rosemary, Volunteer Mentor | @rosemarya | Dec 15 8:58pm

In reply to @marvel1998 "Hi Brenda, I read your post about your son and I’d first like to say I..." + (show)

Hi, @marvel1998. I want to extend a welcome to Mayo Clinic Connect. I hope that @brenwhite will see your message to her about her son.
I'm a liver/kidney recipient and have no experience with diaphram paralysis. However, I am happy to read that the ct scans show no need for any help with your breathing for now. Will you be monitored with scans?