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Post Lung Transplant Expectations

Hello Everyone,My dad had a double lung transplant 5 weeks ago. I joined this site to reach out to others who might be able to share some insight on what to expect during recovery that I can share with my father. I feel so helpless because I can't do anything to make him better. I feel like he is starting to give up and I'm hoping by joining here and asking questions on behalf of my dad it can help change his outlook. His new lungs are doing great but he has had a lot of problems with recovery because he didn't know he was going to need a transplant this soon. His health plummeted in September and they put him on the transplant list the first week of October. Here are the issues he is experiencing with recovery:1. His kidneys shut down due to surgery. Still not working yet. We are told to give it more time. Did anyone have the same issue with their kidneys? if so, how long did they take to recover?2. His hands, legs and feet are all swollen because of blood pressure issues. BP is finally stable after 4 weeks, but swelling still remains. Slowly getting better now.3. His toes are black due to the blood pressure issues and he could lose some.4. He goes in and out of depression periodically. I think he might be having some survivors guilt.5. Atrophy - I keep telling him to exercise more than he wants to and to visualize walking out of the hospital every day I'm there.Has anyone experienced any of the above recovery obstacles? If so, can you share how you overcame them and how long it took? I'd like to share with my father since the doctors won't provide any detail on when to expect to get better. They just say give it time. I know every situation is different based on a persons health going into surgery. I just think sharing some experiences with my father could go a really long way. Once he is able to type again I plan to get him to join the site too to share his experiences with others.ThanksJohn DuChemin

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  • Please research his meds in depth my husband had a double lung transplant 3 years ago and the meds they were making him take were killing him and the drs wouldnt listen so i did my reasearch and some werent compatable with each other or they werent right dosage i had to take control of what he took. Hed never been sick in his life then he got ild and within 6 mo he had to have the transplant but the meds are a hit and miss and not fda approved for lung transplants cause they are exposed to outside factors and foods react with them so do your research everyone is different and their systems break them down different if you have concerns MAKE them address it and dont take no my husband had a problem with prograf and when i told them they told me no way and it was killing him but instead of checking they said he must have a tumor and wanted to test for it after 4 wks and going from 240lb to 150 i took him off and he instantly recovered. 4 months ago they said he was in cronic rejection and his airways were closing and fluid was around his lungs. I researched and found it to be a blocked artery and they got real upset told me no way told them their was nothing else they ciuld do and sent him on his way he died April 27 2017 of congestive heart failure had an autopsy done and his airways were clear and NO signs of rejection. I have not heard one word from them since not even a condolence. If your dad is having problems make them check cause it really dosent take that long to recover and feel good.
  • Hello John, I was scrolling through the forum and read your post and stream. I'm 6 months post-op from my bilateral lung transplant. When they told me to give it a year in the recovery mode I didn't believe them. Now that I am 6 months post, trust me it takes at least a year. I feel about 70% but know and feel I still have a ways to go. It takes time, baby steps and making sure the smallest of victories are heavily celebrated. Gotta get up and get moving, even if it's only 10-20 steps. I get frustrated as much as the next guy sometimes. "My mind is willing but my body often has a second opinion." Ha! Make sure your Dad can laugh at himself. Trust me it was a bitch when for the first time in my life I could'nt wipe my own ass. I laughed about it then and laugh about it now. In the 70's I had to smoke weed to get the same feeling I live with now on daily doses of prograf. Ha! Ha! Poppin pills is easy now that I can breath on my own and push myself each day to recover one step at a time, one day at a time. I pray to my donor daily and push myself daily to honor my hero I never met. Enough about me.

    How is your Dad? Better I pray.

    "I can do all things through Christ who strenghtens me."
    • thank you John

      for sharing

  • I don't know much about lung transplants, but had a friends sister (in the UK) have her kidneys shut down after her relatively unexpected heart transplant. It took a while (can't remember exactly how long, but it was months) before she was able to get off dialysis, but now, over a year later, her kidneys are doing just fine.

    So there is hope for his kidneys. Best of luck.

  • Hello John,

    Organ transplantation IS a traumatic experience, every patient recovers at their own speed. I do not think any recipient will say it is "a piece of cake."  There is a myriad of physical and emotional issues to be dealt with and a good amount of shock that must be overcome.  If you feel he is not progressing enough, perhaps you should share your thoughts with his Tx team, who know him best, to get their perspective on how he is recovering.  I'm sure you will see the change in him, once he doesn't feel like he was "hit by a bus,"  after all, he's only a few weeks out from probably his most intense life experience.  Replies from other Tx recipients will surely follow.

  • Hi John,

    I had my transplant a little over three months ago. I was listed for about a month before my lungs came in, and didn't really think my transplant was happening until the second they rolled me into the operating room. When I woke up, I was so swollen with fluid that I could not move. By the time the swelling went away, my muscles were so atrophied that I had to learn to walk again. In those early days, I had panic attacks nightly when I've never had a panic attack before in my life. During recovery, I cried daily and wanted to give up. There are two things that helped me through all of it. One, my social worker told me "Don't worry about how you're going to make it through the rest of your life. Just worry about how you'll make it through the next five minutes." When I broke down every activity into just five minutes, it suddenly made everything seem a lot less difficult. I was in the hospital for 70 days, will which is a long time. Breaking it down helped a lot. The second thing was when one of the nurses got tired of my crying and told me that an 8 year old girl was also a match for the lungs I received; that I received them because I was only slightly higher than her on the list. I don't know if this was true or not, but I won't ever forget it. T as what I needed to hear to continue to fight. I was given this gift at the expense of my donor and everyone ranked below me on the list. It is and was my job to fight as hard as I can for as long as I can.

    I really hope some of this can help your dad. I know that it was one of the hardest time in our lives for my family, and I wouldn't wish it on anyone. Good luck to you.
    • What an awesome share!! Thank you for taking the time Krystle!

  • I read everything you said and everything everyone said.  I will be nice and blunt, tell your dad to get off his ass, he has been given a GIFT, it is his job to get up and make his body work again.  The guilt that he is feeling, I think it is normal, I believe most everyone feels it(I met a few who where asses, so I do not know if they did appreciate it or not), but I sure did appreciate it and felt guilty(some days I still do),unlike your father, I was not surprised I needed a transplant, matter of fact I knew for years, I just tried to beat life and get as much as I could out of my old lungs(damn near killed me), I got on the list very easy, I was 42 when I got accepted and placed on it, 7 days later I was transplanted. I only got a left lung, so I have 1 old lung that has pretty much shriveled up to nothing and one I have had for 10 years(thank You Lewis and God Bless Your Family), Tell your father if he wants to talk about guilt stories, I will tell him mine if he knows about his donor.  Lewis was 16 when he got hit by a truck, only his left side was viable, so I was the lucky man who got his gift.  Lewis was a special kid in many was and I hear new stories when I talk to his mom usually.  But Lewis came into his house one day and saw a commercial about donating organs, turned to his mother and says,"If something happens to me, I want to donate organs", Lew died about a month later. I wake up every morning in pain from a pinched nerve in my lower back, it cause pain in my back,do, wn my left leg to my foot, but I still get out of bed, I smile, I laugh, I feed my dawgs, I am happy, Why am I happy, because I have had 10 extra years with my children, because of Lew and the 10 years so far, I have seen 2 of 3 children graduate from High School, #3 graduates in June, I have 2 grandchildren(2 1/2 & 1 1/2 years old).  So like I started this letter, Tell Your Father To Get His Ass Up and Enjoy The New Life & Gift He Has Been Given.

    God Bless


  • Hi. In answer to all your questions plus a few more is: YES!   Sleeping sitting up with the lights on, pain all over, not interested in anything, unable to concentrate, blah, blah.  In other words, shell shocked.  This does go away. But it  takes a while to get used to the new normal.  He has been through a war and just because the tx team is doing good, it is still shocking to the body.  Being patient with himself helps.  Music saved me.  I was plugged in to a casette tape or radio all the time.  Reading was impossible for quite a while due to blurred vision and lack of concentration and interest.  Happy to answer any of his questions, but my transplant was done so long ago, all my information is 30+ years old.  I saw a psychiatrist who helped me so i did not have to bore/alarm  my family and friends.  He gave me permission to not want to be dragged around to gatherings and all the other things people think you are going to be delighted to participate in after many years of illness.  Your dad may also feel like he has just landed from Mars or landed on Mars.  (normal too). My hospital had a support group that met monthly, but we called one another on a daily basis and hung out together so we did not have to explain anything to anybody who did not "get it"  Best Wishes for a calming Holiday.

  • Sometimes it is more useful to speak to a double lung recipient rather than email, texting or even forums as you talk about issues , doubts etc additional things come to mind. As a result I think you come away with some clearer paths

    My name is bob am 6 1/2 years post double lung. Have gone through what y'all are facing.

    Gets better every day

    My cell is (281)536-1705

    If you would like to talk all you have to do is call me
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