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    • #33391
      B U Singh
      Participant

      Hi everyone, I hope you all are doing well and keeping safe. Lungs transplant nowadays seems to be the last resort for many patients who are dealing with advanced stage lungs disease. I have been diagnosed with advanced ILD in May-2022 and going for bilateral lungs transplant soon. Do we have active members in this forum who have gone through successful lungs transplant and share their experience about post transpant complications, recovery and how life looks like after the transplant.

    • #33392
      Russell Jalbert
      Participant

      I received a BOLT from Duke University Hospital in Durham, NC on 10/2/22 and discharged on 10/19. The transplant team mentioned I got through in-patient quickly. I haven’t had any complications , but it is still very early in my recovery process.

      I will share a positive experience though. Monday was a beautiful day here, and while wifey was driving me home from a day of follow-up visits; I was struck by its beauty. For the first time in several years I felt a wave of gratitude and appreciation of life. I was thrilled to be rid of the cannulas; the waiting and preparations; and the constant weight on my mind and body of the IPF.

      Although I still feel as if I was hit by a truck, and as weak as an infant; each day is better than the last and I feel optimistic for the first time in a very, very long time.

    • #33394
      Christie Patient
      Keymaster

      Yes, great question. There are plenty of folks in here who have had successful transplants.. There are scores more that aren’t in the forums simply because they are out there living healthy lives and not thinking about being in this forum anymore. Which is fair 🙂 But here are a few folks that come to mind in this forum, perhaps some of them can jump in and share their experiences:


      @holly


      @dennisr13


      @samuel-kirton


      @davidota


      @bagchi


      @jackblum


      @haroldabrown


      @chas2712


      @masonryt


      @mikemc


      @driscco


      @milleke


      @spegeye

      There are also several columns on our site from post-tx folks–mine documents my mom’s tx, Sam Kirton, Kevin Olson, Emma Schmitz documented her mother’s tx, and Mark Koziol.

    • #33395
      Samuel Kirton
      Participant

      Thank you Christie for curating a nice list for this thread. I did receive a bilateral lung transplant on July 10, 2021, and I was discharged from the hospital 10 days later. The first 14 months post-transplant were relatively uneventful. I had my first exacerbation post-transplant at the end of September 2022 when I had pneumonia. I was in the hospital 5 nights before being sent home with a 10-day course of broad-spectrum anti-biotics which took care of most of my pneumonia. I am now on a 12-day course of hi-dose prednisone.

      Life post is good for me. I had a strong care team who prepared me pre-transplant. Rehab made me strong.

      Not all transplants are easy. It is a personal decision and each of us will have a unique experience. It is not necessarily going to be sunshine and roses for everyone but it has given me the opportunity to meet some amazing people on my journey.

      As @Christie mentioned I do write a weekly column here at Pulmonary Fibrosis News that includes more details on my transplant experience.  Sam …

    • #33407
      Anita C
      Participant

      Happy to share! I am Six Years + 3 Months post double lung Txp.  My lungs were rejected by two others but came to me during what would have been my Final Days. I was dying. So we jumped at the opportunity despite the lack of adequate medical history on the donor. (Perhaps family-less? Institutionalized?) I’ll never know how or why a miracle occurred and I recovered nearly fully within a few months, in fact better than I had been for many years! I have struggled with anti/rejections meds (kidney damage) and recurring skin cancers (no melanoma to date) but otherwise doing extremely well. I hate to verbalize that as I fear tempting Fate but I also want folks to know that quality of life is possible after Txp. It’s different for everyone yet more are surviving longer than ever. And I intend to! The emotional adjustment is not an easy road some days but I pray for fortitude and constantly whisper my gratitudes. I was 62 yo at surgery, lived with stair-step declining PF from HP for 22 years. I am now living “my best life” after that horrible disease nearly destroyed me. God is great.

    • #33410
      B U Singh
      Participant

      Thank you everyone for sharing your experience. This is very encouraging!

    • #33411
      Colin O Driscoll
      Participant

      Hello.

      I had my double lung transplant on 11 October 2021 after 7 years of diagnosed HP which had been gradually getting worse and an infection which destroyed a large part of my remaining lung capacity.

      I was on 10 litres per minute of oxygen in intensive care and was told that I would not be leaving, except with a new pair of lungs.

      Here I am, just over a year later. I am in pretty good health, apart from a viral kidney infection that is being treated. I can now start looking forward to retirement, rather than dreading further physical decline from an incurable lung disease.

      The medicines regime, dietary restrictions, and being generally careful, are annoying, as are the frequent trips to the hospital that is doing follow up for me.

      But hey, I am alive and feeling reasonably healthy.

    • #33414
      Holly
      Participant

      Hello, everyone. This is Holly, Christie’s mom. I am 3.5 years post DLT. I did experience a complication after the surgery, a Strep infection in my new lungs which resulted in a month-long re-hospitalization. I had been in ICU for three months prior to my transplant. So, mine was a longer road than some, but I have been healthy since. I can relate to the emotions expressed by the other participants:Gratitude, appreciation for the little things, annoyance with the side-effects. I’ve had several squamous skin cancers removed, I’ve lost bone density and muscle quality due to the meds, I’ve gained too much weight. But! I no longer live with the dread that accompanies having a progressive, incurable illness. That is huge! I wake up looking forward to the new day. I love my life. I feel like a little kid when riding my ebike. I take pleasure in Nature around me,and joy in my family and friends. Transplant gives us the gift of more time.

    • #33415
      Prabir K Bagchi
      Participant

      Dear Friends: I am 76 years old now. I had a single lung transplant in February 2020 just before Covid pandemic started here. The surgery went well and recovery was gradual. I was released ten days after surgery. My wife was by my side always. I was happy to have been blessed with a second life. My outlook completely changed and I started to appreciate the gift of life much better. The recovery was gradual but smooth. We stayed at a rented apartment one block from the hospital. The proximity helped us with constant monitoring by the doctors and other health care staff. My doctor visited me at home to keep a constant watchful eye on me. I followed their advice to the last letter. I was fortunate and had no setback. I started going out within two months albeit with plenty of precautions. Covid actually delayed my going outside. Within six months we were back home in Bethesda, Maryland and doing everything albeit constrained by the Covid pandemic. I did not take any airplane trip for two years as advised my doctor. I walk every morning and some evenings and do some physiotherapy. In November, we plan to take our first transcontinental trip after surgery. If I can of any help, please do not hesitate to ask.

    • #33465
      Shilp
      Participant

      Very nice to hear your stories

    • #33827
      B U Singh
      Participant

      I had my bilateral lungs transplant successfully done on 25th October 2022. I am in recovery phase with a tracheastomy tube still on my neck. I am now 50 days post transplant with no oxygen requirement anymore,  but still not able to walk a few meters independently or without getting exhausted. I am 58 and not sure if recovery is usually this long. How was the recovery phase  for other members   ?

      • #33829
        Colin O Driscoll
        Participant

        <p style=”text-align: left;”>Hello,</p>
        Have they explained why you have a tracheostomy tube? I came out of surgery with some drain tubes that were removed after a week or two.

        Rehabilitation can take time: my hospital has a program of in-patient rehab, recovering the ability to walk and your sense of balance, followed by out patient rehab gym three times a week.

        • #33841
          B U Singh
          Participant

          As per the doctors, the tracheastomy tube is preventing aspiration and also providing an easy way to remove airways secretion as my coughing power is not enough to take out the phelgm which may cause infection if left inside. The tube will be removed in a few days and afterwards I have to cough out any secretions building inside the airways.

        • #33845
          Colin O Driscoll
          Participant

          OK Thanks. That makes sense.

    • #33855
      Paul Swanson
      Participant

      Log into… 2ndwind.org
      Great resource for post lung transplants

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