Bilateral Lung transplant problems?

   I had a double Lung Transplant 4 1/2 months ago.  I've only been home for ten days. I feel great for the most part except for two problems I'm not sure how to handle, and am wondering if anyone else has experienced these setbacks.

   First, about a month before I was released, I started noticing that my right foot was swelling up each day for no apparent reason, it didn't even hurt for the first couple of weeks.  I finally mentioned it to two of my Drs. about a few days  before my release. They looked at it, said nothing.  I assumed some test would be ordered, but none were scheduled.  Now the swelling in the foot is much more severe, with pain.  Has anyone else had this problem, after transplant?  

   Second, 3 times in the ten days I'm home, I've gagged so bad when taking a gulp of soda, or water that has turned to room temperature.  I bring up phlem, and heave while trying to breath, until the spasm passes.  I'm fine when I take a cold drink, or even drink a hot cup of coffee.  I just don't seem to be able to swallow anything at room temperature.  Is this related to the transplant?

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  • Hi Rosemary

    I had my Dbl Lung tx 1 year ago and I had some swelling in both of my ankles and calves. The meds were causing it as I recall. I tried to lower my salt intake and wore compression sox (up to my knees) at times to help out. Keep your legs elevated whenever you sit down. This is VERY helpful.  It did go away as I was able to exercise more. I didn't have the problem after 4 months time. Maybe my body got used to the meds. They also cut back on the prednisone eventually from 20 mg a day to 5mg. My appetite and eyesight was severely effected. I couldn't eat hardly anything. NOTHING much looked good. I lost 60 lbs. after surgery. Went from 220 to 160. They also discovered I had C-diff a 6 weeks after I left the hospital! That was part of the problem. Feeling great now! Good Luck, you'll do fine.


    • I noticed you had a dbl lung transplant 1 year ago. I have started to look into a transplant again as encouraged by my Doctor. I wanted to do more research as when I researched this issue before I found it bleak in prosepects on success stores. I am doing more research and have a meeting set up with a transplant team in Dallas in another week or so. I am interesyed in your take on your journey thus far.



    • Thanks for the encouragement Doug.  I wish I had your weight problem.  I've already gained all my weight back, and I'm only taking 10 mg of prednisone.  My ankles are better than before, but still swollen.  I'm wearing compression knee hi's all the time now, so I guess that has helped.  I feel great otherwise.

  • Im recieved double lungs in july of 2012 and i still have coughing fits so bad that i vomit.  I think that are throat muscles are weeak bc of the type of surgery we had. give it some time it will get better. mine has.

    • I noticed your lung transplant in 2012. I am venturing to speak to Doctors about a lung transplant. How was your experience?



      • hello pas

        Yes i had a double lung transplant. i would be lying if i didnt say it was the hardest thing i ever been through in my life. i alson had a heart trx at the same time so my recovery took longer but once i got stronger and began to feel well,,,,,,a smile could not be removed from my face.i say get evaluated and get on the list because time is not our friend.  if you have another question, i would be more than happy to answer them.

  • Hi Rosemary

    I do remember some foot swelling but it went down after a week or so.  I do not recall exact details but I believe swelling is a big part of post transplant recovery. Some people have alot of swelling while others do not experience too much swelling.

    About room temp drinks- I only drink water at room tempeture. Cola-soda is off my list entirely due to the unhealthy nature of the drink. It is toxic to the kidneys.

    I hope you get the answers to your questions and feel better. 

    • Hi , I had double lung transplant 4 years ago ,no  I didn't have  that problem. Talk to the transplant team they will help you. Stay strong

      • I noticed you had a lung transplant 4 years ago. I am looking into a lung transplant. Tell me about your experience. Four Years that gives me hope!



      • Just wanted to thank you all for responding to my question.  I took your advice and talked to my Dr.  Some tests were done, and the diagnosis was that I'm retaining water in my feet.  Seems that 6 of my 15 different meds I take since the transplant can cause water retention.  I was advised to wear pressure socks, and was also prescribed Lasix, and potassium twice a week.  It's already working, the swelling is down some, and I'm able to walk without limping.  Thanks for the help. 

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