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  • 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.
    • Hi Mark. It's a scary road. It so worth it in the end. If you believe you will have a happy ending then I that's what you'll get. It may not go as perfectly planned but that's life. They have advanced so far in transplants it's really amazing what great results they are getting. Everyone tells me I went into surgery with a smile. I came out madder then hell and in the worst mood of my life but then I maybe thought it would be an easy journey. Relearning to breathe is not easy. Your body takes time to readjust. Your diaphragm has been sitting around for a long time and will need to learn to work again and really stretch. The vent/intubation part I'm sure they told you may be the worst the part but then again you might come off that before your off the sleepy meds. I wish someone would have told me this before surgery. If you wake up after and you are still on the vent do not panic. You will feel like you can't breather because it breathes for you but your mind thinks it's not breathing. Plus your all whacked out on drugs and your days and night are screwed up depending on length of surgery and when it happens. So I'd say try. It to panic and have them give you a writing pad to ask questions. You can't talk. So I wasn't able to ask what the hell is this and why am I still not breathing on my own I must be dying. By the time I did get a writing pad and found out I wasn't dying it was at least 24 hours. Long time to panic.
      Some helpful tips in icu.
      Lavender lotion. HVe your caregiver rub this on you to relax you and take your mind off the noise. Pain. Lights etc. icu doesn't ever turn off lights another reason your days and night get screwed up and you don't sleep. Ask me anything you want. I hope I didn't share too much but knowledge is power.
      I have had my lungs for 13 years. Never looked back but that icu time does still ring clear as day as it was my worst experience.
      • Hello Shauna, I was BL Lung transplanted on New Years Day. Discharged 24 days later. Your post-op memories I can tell you are on point with mine. I centered my thoughts on the miracle in my body and life saving gift from my donor in Heaven. My wife and kids remained close and championed my care while in ICU for 22 days. I had some complications but the donor lungs appear to be doing great according to the transplant team. Relearning to breathe is no joke and took control of my anxiety at least a couple of times as day. The mind is so powerful to readjust from such a sustained period of time on oxygen therapy 24x7 at 40% lung ccpacity. I'm now in an apartment less that 5 minutes from the Hospital for the next four weeks as a safety net to this critical time period of follow ups, lab work and potential call backs. We live 80 miles away. This life saving experience is nothing short of a miracle from God. I'm so delighted to be on the recovery side of the street. Blessings Sister!
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