About

Member has chosen to not make this information public.

Groups

Member not yet following any Groups.

Pages

Member not yet following any Pages.

Posts (5)

Thu, Jun 18 6:52pm · Diaphragmatic paralysis after heart transplant, experiences? in Transplants

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.

Sun, Jun 14 3:35pm · Diaphragmatic paralysis after heart transplant, experiences? in Transplants

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?

Sun, Apr 12 7:07pm · COVID-19 and Transplant Patients in Transplants

Hello Dana @danab, I appreciate your share of your story and your thoughtful offer to be of help. I will probably take you up on that offer for any questions that may come up. I really enjoyed being a source of help to new LVAD patients and their families.. Amazingly, somehow in the midst of all the fear of things in the beginning, and with experience, we one day, find ourselves the expert. Another chapter starts! Thank you so much to you and everyone for being so helpful.

Sun, Apr 12 6:29pm · COVID-19 and Transplant Patients in Transplants

Hello @colleenyoung, I have been able to chat with him in ICU. I had given a brief clearance to visit him when he was experiencing some delirium coming off his vent (to calm him) and I set up his notebook to be able to chat with me when he came out of his haze. He was just released from ICU to the cardiac floor and doing pretty well. Thank you for the introductions and for the tips link posted. His name is Brendan and my name is Brenda. I set up this for him in 2017 just prior to his LVAD surgery.. he hasn't used it much.

Sun, Apr 12 12:22pm · COVID-19 and Transplant Patients in Transplants

As a mother and caregiver for my son with a newly transplanted heart (4/1/20), I appreciate the share of information and the support here.. He is still in ICU and, I, unfortunately, have not been able to be there but busily following his transplant team's advice and instruction here at home and thankful for video chat! I am sure that Mayo hospital had to make a tough decision regarding the timing of when this gift became available and the ever increasing concern that this declining LVAD patient was presenting. I am so aware of the heartbreak that wait listers and their families are now experiencing and NO, these are not elective surgeries. Now I am adjusting to living like a transplant recipient, as well, even though I am not one. My heart and best wishes go out to all of you. Stay well and safe.