Caregivers for Lung Transplant Recipients
This is a group to support caregivers of those who have had a lung transplant.
What's New Today
over 1 year ago
First time on this site. My boyfriend had a double lung transplant 2 1/2 years ago from Cystic Fibrosis and it's been hard in and out of the hospital so much so that they could charge rent. The surgery and first few months were great but his quality of life has gone down so much. Constant battles with doctors, pain meds due to being a recovering addict,several years clean, I'm exhausted and don't know what to do. It's debilitating being a caregiver when nothing seems to work and I feel guilty for fantasies about having a normal life that doesn't revolve around hospitals. I love my boyfriend he has changed my world for the better but there are things I want in my life that he can't give me. Don't know what to do. Feeling very lost and alone. He is an amazing man who inspires me everyday but I cry and scream in my car over how unfair it is when I leave the hospital. His illness feels like the "other woman" in our lives that you just can't get away from. I find myself thinking what sort of person leaves their love when the chips are down? I would love any advice on how to either be stronger for him or how to cope with the voices on my head .
almost 2 years ago
My husband had a left lung transplant in August 2014. He had many complications as well as he coded on the table during the transplant for 15 minutes. It has now been 7 months post transplant and he still has no energy. I also have noticed his processing skills are slow. Sometimes he misinterprets what I say or just doesn't understand. My question is, are these types of things normal post transplant.
over 2 years ago
My husband had a lung transplant February, 2010. He has done well, overall, until May of this year (2014) when he was diagnosed with invasive squamous cell carcinoma. It had invaded the seventh cranial nerve, which is the facial nerve, and a lymph node in the neck. Due to the meds he is on, it was extremely fast growing. The facial tumor was removed, but not the lymph node tumor, and radiation was started.
He began to lose his appetite. Some weeks after the end of radiation on May 30th, his appetite slowly began to increase, but two or three weeks ago, it decreased again and now if he can get down a can of supplemental nutrition in a day, he is doing good. He has lost about 35 pounds.
He has gotten extremely weak and tired, of course. He will do nothing for himself except go to the bathroom, at this point.
We are going to Stanford Monday, for an evaluation. I think they will put in a stomach tube if he will agree to it.
I am a strong person, but I'm nearing the end of my rope. Just need support from people who understand this. Thanks in advance and I hope this will help others too.