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  • Hello,
    I am on cleve.clinic's list for 16 months. I have alpha 1 antitripsy,copd plus a few other lung issues. I find myself dicouraged because of the waiting. They say I'm not sick enough to progress up the LAS. I do notice my activity and stamana is getting worse. Anybody have words of wisdom for me. Thanks
  • My transplant will be in San Antonio, Tx. Anyone out there in the same situation? I'd like Texas information/communication.
  • Hello all, thanks for allowing me to be apart of this group. I had a bilateral lung transplant on August 16, 2017. I was discharged on the 28th of August and started therapy on the 30th of August. I am doing well physically I'm just very emotional, I feel so restricted, I can't taste my food, I'm nauseated seems like all the time. I just want to do something I feel like now that I'm not so tired all the time that I'm more aware of the time and being home while others are at work bothers me that time is so lonely. I just want to taste my food again almost everything taste like cardboard how long does it last....ugh any suggestions?
  • My husband is dealing with many issues post bilateral lung transplant 2 and a half weeks ago. First tinnitus, which is causing him not to sleep, which in turn is leading to depression, lack of appetite, I wondered what anti depressants some of you might have tried post transplant that might have helped??
  • Has anyone had tinnitus with Cellcept it seems like that has a higher incidence than Prograf?
  • My husband had a double lung transplant 2 weeks ago today, he had a couple of issues in the OR (SVT, acidosis) and had a rocky first 24 hrs in ICU, but the rapidly recovered was discharged Tuesday after only 9 days, requires no oxygen.He started on day of discharge experiencing a loud hissing sound, then high pitch bird sound, as well as other sounds, after googling every med he is on, there were some reported cases of patients being on Prograf experiencing the same, the doctors are baffled, this is so debilitating, he can't sleep, no appetite, also experiencing silent migraines. We were wondering if anyone else out there have experienced the same and if they have any suggestions
    • The Tinnitus IS a known side effect of prograf.  It affects everyone in varying degrees.  I had been taking both Cellcept (myfortic) and Prograf (tacrolimus) for well over a decade and am now no longer taking Cellcept for over a year(as instructed by my Nephrologist) with no reduction in Tinnitus, leading me to believe it is the Prograf.  I have tried OTC remedies with little success.  I guess I have become used to a "schoolyard bell" as background noise.  I would ask the Tx team about the issue to eliminate any other causes.

  • Hi everyone. I have had a long tx 13 years ago and feel really blessed I got to get on with my life and be a mom to my son and a wife to my husband who had looked after me so well before tx. But I have a friend who had a tx 20 years ago. Amazing right. She was my inspiration. But now she feels very depressed. She had a Tx early in life at 20 . She feels she should have been able to get a husband and a family with her new lungs but really feels she got nothing out of the deal. Still single. No love in her life. She has no idea why she got to live this long if there wasn't a special purpose for her. She feels ripped off even though she is very grateful. But has this lingering depression that saddens me. Has anyone get this way. Like you get this second chance and it must be for some reason but it's never reveled and therefore you feel unworthy and saddened.
  • I am new here, I am a bilateral lung transplant by way of ECMO, I was a trailblazer at my center 7 years ago.  I am in several FB groups and FB moves very quickly however lacks the intimacy of a smaller group. I suffered with Sarcoidosis for 11 year prior to transplant.Thank you for having me and I look forward to sharing information.

  • I'm new here. Hello everyone. I was placed on the transplant database today. A slew of emotions running around in my head. I'm #2 so I know it won't be long. Trying to prepare physically and mentally. Spiritually, I trust God's plan for me. I'm glad I found this support page.
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