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  • 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!
    • My LAS was second highest in the nation at the time of transplant.  It is impossible to prepare, just trust God and trust the process.. sending prayers to you and your family.

      Peace and Light

      • Thank you Tamar and you are 100% on your advice which is exactly what I focused on from day 1 post-op. Blessings and better health to you Sister!
  • Hello All, 

    I have joined this forum for my sister who is being evaluated for a lung transplant.  She has had rheumatoid disease for 4 years which has left her with 33% lung capacity.  She has interstitial lung disease with pulmonary fibrosis.  She has been given about a year to live without a lung transplant.

    She spoke with the team at UTSW (University of Texas Southwest) in Dallas yesterday.  

    One question that she has right now is about weight loss.   She currently weighs 218 with a BMI of 3.4.   They asked her to get her weight down to 205 with a BMI of 3.2.   She is currently inactive and taking 30-40 mg of prednisone a day  which makes weight loss difficult.   Will being overweight keep her off the list?   How agressively should she try to lose weight?  She is currently take 150 of Imuran a day as well.   Any thoughts on this issue would really be appreciated.

    Teresa

    • Hi, I am sorta new here. I am 2 & 1/2 years out on my bilateral transplant. I was told I had to have a BMI of 30 before acceptance on the list which meant I had to lose 60 lbs. And somehow I did. And it did not seem hard to me. The doctors told me, everything I was taking in for energy went to fighting the illness. Because now that I no longer have the illness I have gained all back and then some. Due to the steroids for life it seems that now, I cannot lose the weight at all, and stay hungry all the time. I don't want to lose it the way I did before, but I sure wish I could lose it as easy as I did before.
    • Hi Teresa-

      Every transplant center is different, but my transplant team would not list me until I was under BMI of 3. I lost the weight, while on prednisone but it was the hardest thing I've ever had to do. I'm not a nutritionist, but tell her that water helps and whatever exercise she can manage is what will help. Even if she can only go for 5 minutes, she needs to do it. Is pulmonary rehabilitation an option for her? I can't emphasize enough how getting in the best shape possible (which might still be crap shape) before transplant is a huge necessity. Think of it as getting to fighting weight. The battle that comes after transplant will take everything she has, so she might as well start building up the strength now while she can.

      I hope this helps.
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