Lungs
Lung transplant
September 24, 2022
in Lungs
Starting on the journey. Wondering about changes in daily routine after transplant. Diet, sleeping arrangements, exercise, activities
1 - 7 of 7 Replies
Hi there. Wishing you the best on the start of your journey. I had a kidney transplant 4 years ago, so I can't quite answer questions for exact lung post-tx questions. But I will say that it really depends on so many factors. Some people bounce back more quickly than others. I had a more difficult healing process at the beginning. But 4 years later, I'm doing great. I'd love to hear more from the lung community about your experience post-tx.
Currently I have questions for post operation.
Bathing or shower
special bath soap
Can I sleep in my bed with my wife
diet
restrictions.
Hey @Jgoodchild. Lung guy here. Each lung recipient recovery is unique. I recovered fairly quickly.
Didn't get to shower until about day 7 or 8 after surgery. Did the sponge bath/sports wipes before that. It is a bit difficult and often not recommended to shower with your drainage tubes (4, if you get double lung) still inserted in your lungs and you'll have those for about the 1st week or so. No special soap needed; I brought my own. They'll likely give you an antibacterial solution to swab your sutures to prevent infection.
Post-covid, I think they allow at least 1 person to be in the room with you (after progressing to PCU) but it won't be comfortable to sleep with anyone in the same bed until those drainage tubes come out - speaking from experience. Should be a fold out couch (depending on room) she can use until then. Diet is specific to your unique situation. If all goes perfectly, you should do jello/broth for several days, and then progress to soups, and then to solid food by about day 10-12. Again, this is assuming close to a perfect recovery.
Restrictions: Your team likely shared this with you: No raw cut fruits, vegetables, or salads at restaurants. All meats should be cooked to well done. No raw seafood or shellfish. No sushi. No grapefruit/grapefruit juice or pomegranate/pomegranate juice. Additional restrictions may apply based on your medical condition. Take it easy if you plan to get back to the gym; I think the 1st month, I was limited to 10 lbs for any weight movement. Your team should give you hard copies of all of these restrictions. Your lungs will be weak, susceptible to infection, but working to get stronger so it is best to stay away from the public (grocery stores, hardware stores, large gatherings) for the first several months. Wear a good quality N95 mask everywhere else you need to go.
Those are some basics without knowing your condition and possible complications, but like we all say, medical questions go to the doc. We will give you the real world implications of what they tell you to do and how to manage life/find what works despite the difficulty.
Hit me/us up if you we can help out anymore or feel free to DM. Transplant isn't always an easy road but that is why we're here to help since we've done it already!
Thank you. Good information
Question. Once you went through the evaluation process how long did you wait for your lung transplant?
After official listing, 2 days. Wait time depends on quite a few variables, though.
Transplant Patient
@DonnyC you're on it! Thanks for sharing your experience.
I'm not a lung transplant recipient, but I can speak to some of what I experienced post op. It won't be the same but similar, I imagine?
As Shelby said, everyone has different experiences, and my personal recovery journey was ROUGH. I showered, with help, within a few days of being moved to the transplant floor. I was so nervous about having one of the health care aids help me shower, but it ended up being the most majestic shower of my life. We just wrapped all my incisions/scars really well with saran wrap, and then removed them and dried me super well post shower. I wasn't allowed to have a bath for 3(ish) months, or until all my staples were removed and my incision was completely healed. I just used whatever soap my hospital had, and then when I went outpatient there were no restrictions, just not to wash the incision area. They cleaned those with alcohol wipes every day or so.
My diet was whatever I could keep down. This will probably be different for everybody, but due to a lot of reasons I had no appetite post surgery. It was a bribe me to get food into me type of situation, so no one overly cared what I ate as long as I ate (it didn't stay that way, unfortunately. if I tried to live off of sweets now someone might have an issue with it)
I didn't share a bed with my husband for a few months. He moves a lot in his sleep, and every time he would move the bed it was incredibly painful for me. I also had to sleep propped up on a bunch of pillows, which didn't leave much room for him in the bed. He slept on a cot beside me for a while, so he was still close enough if i needed anything but we didn't have to worry about him accidentally hurting me