Recent double lung transplant patient - need to hear others stories

Posted by andreacardona85 @andreacardona85, Nov 15 4:29pm

Hello friends,
My father had a double lung transplant surgery over two weeks ago. He was doing well and for the last week now has had some setbacks with major abdominal pain and gas. He struggles to walk and get better due to the pain. As his family member, we are struggling to understand if this is common and need support in hearing if others have gone through this and what your recovery process was like after surgery. I can’t seem to grasp what his recovery “should” look like and if others have struggled in a similar manner. We were hoping he’d be out of the hospital already but it will likely take a few more weeks. It feels like his body is giving up, despite his lungs doing very well. Any similar stories?

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chickytina | @chickytina | Nov 16 9:32am

Congratulations to your father and your family on this new lease on life. I am not sure how old your father is, because I have spoken to people that have had the surgery in their 30s up,
I had a double lung transplant in May 2022. This was after not being able to walk more than a couple of steps with my oxygen dipping down to the 30s while being on 5 liters of oxygen (highest the machine could go). You can see my story if you look up "Dancing until my feet hurt", which is my transplant story.
I had pain in my chest (like wearing a bra that was two sizes two small) for a little over a year. This is a major surgery, but he needs to get up and walk. I would take my pain meds and then go for a walk. I would walk with anyone and wanted to walk at least 3x a day when I was in the hospital. When I got home, my husband would go with me for a few walks a day increasing the distance and length of our walks. We really got to know the neighborhood that we have been living in for over 20 years by going different ways. At first we brought a wheeler with us (my husband would push) so that I could rest when I needed to. When in the house don't let him be lazy. If he wants a glass of water, he should get it. Don't wait on him, It is better that he gets up and does it for himself.
I had a major issue with balance for the first year. I still walk into walls when trying to walk straight, but not as often. I went to physical therapy for the dizziness that I experienced, which helped with the balance issues. Now I am going to physical therapy for the head ache that I had for 2 years straight and it has really helped. I do strength and stretching exercises daily. This is helping to open up my chest muscles, but this he will most likely need to wait on (if needed). I was told that after thoracic surgery, they try to have you protect the area which can cause rounded shoulders (your body sort of curves around to protect your organs).
I have been able to really live my life and enjoy so much since my surgery and I am sure that your father will as well. Best wishes and may God keep and hold you and your family.

jackiez | @jackiez | Nov 16 3:00pm

@andreacardona85
Congratulations on your father’s double lung transplant. I was in my mid 50s when I got my heart-double lung transplant 3 1/2 years ago.
@chickytina is correct-walk, walk and walk some more. It’s not easy. It’s easy to let others do things for you. Try not to enable the easy. I’ve also discovered recovery and our transplant journey is a series of setbacks and comebacks. Progress isn’t always linear.
However, I am VERY active these days-I work out daily -treadmill, walk the dogs, circuit training and ride my horses. You can also google my story on Mayo Magazine. There are good days ahead-they just require grit and perseverance. And family support too! You’ve got this!