• Lung Transplant

    Posted by Terry Neu on August 15, 2023 at 10:48 am

    Has anyone with IPF decided not to pursue getting a lung transplant? I have read in the forums all about transplants but no one has mentioned declining the procedure as an option. When I first was diagnosed in March of 2019, the first thing I said to my wife was I would not pursue the transplant.  We are both at peace with this decision. I am 66 so I am not too old just yet. I have just coasted so far in my disease and have not declined very much over these past 4.5 years. I use oxygen only when taking walks. I would like to hear from others that have decided on the same.

    Allan Byron replied 9 months, 1 week ago 24 Members · 30 Replies
  • 30 Replies
  • Roger

    Member
    August 15, 2023 at 12:48 pm

    I got diagnosed October of 2022. I’m 66 also but I’m considering the transplant when it’s time. I’m not currently taking either of the two drugs and I’m stable over the past year. I have oxygen available but not currently using it.
    I am exercising 5 times per week on a treadmill and bike. (45 minutes)
    I really do think the exercise is helping to keep my lungs maintained.

    Roger

    • Manzurul Khan

      Member
      August 15, 2023 at 5:30 pm

      I also feel exercise is the key to mainaining the lungs stable. I walk briskly 3-4 miles wach day. I was diagnosed in Oct, 2020 and now taking OFEV 150 mg twice a day. My O2 level is around 99 all day. I am being told by my doctor for transplant evaluation, but have declined each time. I will be 70 next month and will try to live out the remaining years without the thought of transplant. GLTA

    • John Baldino

      Member
      August 17, 2023 at 2:27 pm

      I am a 73yo man and suffer from IPF. I am on oxygen 24/7. Everything I read makes me believe that a successful transplant will add 3 years or more to your life is the exception rather then the rule. Your quality of like is very diminished. You need to live close to where you have it done up to 6 mos afterward for proper monitoring. If you had a procedure called pleurodesis (talcing) done on your lungs, like I did, it makes transplant very risky because the lung has to be removed in pieces and involves lots of bleeding.

      I am content with the way I am and hopefully they will find something that stops and reverses fibrosis. Lots of promising clinical trials going on. I just hope I hang on.

      I’m in God’s hands.

       

       
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      • Nan Clarke

        Member
        September 12, 2023 at 1:16 pm

        I am 72 in April 2024. I am on oxygen for exertion up to 5 L/pm. I am going to set forth a rationale to my doctor as to why I should now be put on the lung transplant list. I have a lot of living yet to live. I have a very supportive husband who has been by my side every step of the way. I want to be there for him if things take a bad turn for him. Preferably, I would like to relieve the responsibility on his shoulders and make our future years, quality living years. I am starting to decline faster this year. I am on Esbriet and was diagnosed in 2019.

  • Tammy

    Member
    August 15, 2023 at 3:26 pm

    I’m 63,have ipf so far no oxygen,but will not have a lung transplant.I’m the sole care taker of a special needs daughter who has health issues,also my husband is 80 and early stages of dementia.Good luck to everyone who has this awful disease.My coughing is getting worse.But I’ll get through this

  • Kim

    Member
    August 15, 2023 at 5:15 pm

    My husband was diagnosed with IPF in May 2022 he was 69 years old. His lungs failed him completely and he was on full time oxygen at very high levels and hospitalized for 2 1/2 months. I finally took him home and could only get him 8 liters of oxygen which was enough to keep him alive but he was restricted to his bed or couch. He had a heart bi-pass in Sept 2020 and therefore 2 hospitals turned him down for a transplant even though they knew he wouldn’t live long without a transplant. Fortunately we reached out to the Mayo Clinic in Jacksonville Florida. They were very responsive and did a telehealth appointment. After the appointment they set up a week of rigorous testing. One week late he was approved to get on the transplant list and within a month he was able to receive one lung (due to his heart bi pass they could not do a double lung transplant). We spent 2 months living on the Mayo Clinic campus at The Gabriel House ($40 per night) and took a shuttle to all his appointments right there on campus. The day before Thanksgiving they allowed us to return home (4 1/2 hours away) and he has gone for monthly check up since that time. He goes to Pulmonary Rehab 4 days a week for 1 hr a day and has made some friends there. He is completely off oxygen and leads a full life (now 72 years old) playing pickle ball, etc. The lung transplant gave him his life back. He has a high quality life and we are forever grateful for the Mayo Clinic for taking a complicated case and restoring his life. Everyone has there own path but I wanted to share my husband’s path in case it would help anyone. Kim

    • Dale Winter

      Member
      August 17, 2023 at 9:52 am

      Kim, such a wonderful and beautiful story. I am in a so similar situation as your husband was. I was diagnosed with IPF in March of 2021.  Self-refered to Mayo Jax. Went for pre-evaluation in August 2022. Deemed to early for transplant then but being monitored every 3 months. I also can only get one lung because of bypass heart surgery in 2016.  Mayo Jax is such a wonderful place!! I undoubtedly picked the right place.  Take care and God bless. Would like to reach out to you or your bus and for advice or insight

    • Kathy Legere

      Member
      August 17, 2023 at 9:54 pm

      Hi Kim. You give me hope. My husband has had IPF since 2016 but took a real downturn a year ago.  We have been turned down by Duke and NYU Langone but are hopeful at Temple and Columbia Presbyterian NYC. As we live in CT I’m hoping Columbia will be a yes. Your journey is so encouraging. Thank you!

      • Allan Byron

        Member
        September 14, 2023 at 9:31 pm

        I am 75 years old and had been declined by UCSF, UCLA and Stanford. I also have pulmonary Arteral Hypertension, frail had a bypass 13 years ago and they said I’m not a good candidate . I’m wondering if Mayo Jackson will consider me or any hospitals. I am willing to try anything because I’m deteriorating. Any su will be appreciated.

  • Paul D Boccocelli

    Member
    August 15, 2023 at 6:16 pm

    I was diagnosed in early 2020. Was doing great until Christmas 2022. Had Covid, followed by penumoia followed by two rounds of chronic bronchitis. Three hospitalizations in a three month period. So using oxygen pretty much all the time. I went through the transplant protocol testing in 2021 and was considered too healthy to be on the active list. Went through the whole protocol again summer of 2023, verdict is still out on if I make the cut or not. That said, I will be 76 in three months. A transplant is MAJOR surgery!! It’s a lot for a 40 something, it’s even more for someone 76. My wife and I have discussed this at length and we are currently leaning towards not having the surgery. Of course the evaluation board may decide I’m not a viable candidate and the decision will be made for us.

    • Zach Adman

      Member
      August 17, 2023 at 9:58 am

      I resisted getting a Lungtransplant for six years after diagnosis. It was only when they told me I just had months to live that I decided to try and get on the transplant list. It’s now been 18 months since the transplant and I’m doing well. I can once again play tennis, golf, cycle and enjoy life with my kids and grandchildren. I would not rush into a transplant but I would not discount it as a possibility.

  • Roger

    Member
    August 15, 2023 at 6:27 pm

    Tammy,
    Are you taking any meds for IPF or the coughing?

  • Terry Neu

    Member
    August 16, 2023 at 10:07 am

    Tammy,

    Yes, I am currently on OFEV. Was just brought down from 150mg to 100mg after 4.5 years. I was having side effects develope so doctor reduced the strength.

    • Roger

      Member
      August 16, 2023 at 11:02 am

      Try taking mucinex or a sinus medicine to help dry up the mucus. If it’s one tablet per day then take 2
      For the first week to see any results.
      It has help me.
      Exercise the lungs is the other. (Walking)
      It will loosen it up even more.
      Roger

  • Harold

    Member
    August 16, 2023 at 11:15 am

    There are a lot of posts on this site of people who have had transplants.  Perhaps for obvious reasons fewer posts from those who haven’t, and perhaps the best picture would be painted by their surviving caretakers.  I had a transplant single lung transplant at 69, two years ago.  I didn’t think I would live more than a few months more, if that, at the time, and while I was not in pain, my world had narrowed and because a series of immense frustrations.  I was on oxygen full time, about to up the dose again, followed by tanks, and getting to the bathroom from me bed was a journey.  The transplant has so far been a huge success, and less painful and difficult than I thought it would be.  I was off oxygen immediately, out of the hospital in and walking 1/4 of a mile within 10 days.  Two years later I work full time (indoors and no heavy lifting, to be sure) socialize, just got back from two weeks in Europe where I walked over 5 miles a day, climbed 500 stairs one day, and feel happy and productive.  There are very few absolute NOs — no sushi. I take meds. I am cautious — no theater, no basketball games, masks in public indoor places, etc.. but far from a hermit.  And of course I take meds.  I have had one cold and one round of rejection, and neither presented any great difficulty, although of course they could have.  On a daily basis I pretty much feel as good as I thought I would have felt at this age without a lung condition.  Life is good, and we all know it doesn’t last forever.  Putting aside religious concerns, which don’t apply to me, if you qualify and if to you life is worth living I could not recommend it more highly.

    • Roger

      Member
      August 16, 2023 at 2:49 pm

      Harold,
      Congrats, enjoy those healthy years ahead with your family and friends.

  • Terry Neu

    Member
    August 16, 2023 at 6:24 pm

    Thanks to everyone that responded.

  • Mary M King

    Member
    August 17, 2023 at 2:37 pm

    I don’t think I will get a transplant if I am eligible.  I had Covid Pneumonia in 2021.  In ICU for almost 3 weeks.  Now In April 2023 was diagnosed with mild IPF.  Never had any lung issues prior to Covid.. I have  been told I have Mixed Connective Tissue Disease.  Again,  no immune diseases present before Covid.  Been attending Pulmonary Rehab 2x weekly for a year and one half.

    I’m 74 and will continue to rely on The Lord for my strength, breath  and life.  When He calls me home that’s when I will leave this earth.

  • Terri

    Member
    August 17, 2023 at 3:42 pm

    Harold and Kim, what inspiring stories! Thanks for sharing. Wishing you both (and Kim’s husband) many more healthy years.

  • Connie Lum

    Member
    August 17, 2023 at 3:55 pm

    I was diagnosed in 2018. Mild IPF, walk 3 miles about 3-4 times a week and bike 10 miles a couple of times a week, asymptomatic. My brother had a lung transplant in 2018 at the age of 61 due to IPF, that’s why my siblings were tested. 3 out of the 5 are positive. I am the only female, my younger brother just passed away from IPF 2 weeks ago. He was 63 and did not want a transplant after watching our other brother. My other brother is doing great 5 years later.  Everyone has their own reasons for not wanting a transplant. I respected my brother’s decision. I think for myself I would want one, I am 71 now, I may be too old by the time I need one but that’s ok too. You must trust the journey.

  • Bill Ecton

    Member
    August 17, 2023 at 5:18 pm

    I was diagnosed in March of 2018 and taking Esbriet.  So far I’m holding my own – O2 only on exertion and at night.  I am 75, so a transplant is currently not in my future.

  • Ellen Macko

    Member
    August 17, 2023 at 9:55 pm

    Diagnosed in 2017 and needed O2 at night in 2018.Began Ofev in 2019 and lowered to 100 mg.  Used POC for work and exercise and walking in 2019.  Had first evaluation for transplant in 2019 and now going for 2nd evaluation.  Had Covid in June and gradually ( by July) needed oxygen 24 hours.  I am 71 and know the transplant journey is a challenge but I am hopeful I am now a candidate, get listed and have the surgery soon.   I am just getting strength back and go to Pulmonary Rehab 2x a week.  I hope to feel like Roger and Zach  be able to be without oxygen and be more active like I was before ( when I first retired).  Would be great to be able to play more with the grandkids and maybe try tennis, pickle ball or bike again.  In God’s hands and know this is a tough decision for all of us.

    • Allan Byron

      Member
      September 14, 2023 at 9:35 pm

      I am 75 and want to have a transplant, but they said I not a good candidate, because of my condition I may not recover operation. Wondering if other hospitals can consider me.

  • Alfredo Gutierrez

    Member
    August 18, 2023 at 10:23 am

    Hello to everyone and especially Terry. Terry I wanted to answer your question regarding the transplant. I was diagnosed in 2018 and in 2020 was offered a slot on the list but after my wife and I talked about it I decided to refuse the invitation. From our perspective it would be beyond our budget to follow through. We would have had to move to Huston TX. We couldn’t pay for our personal expenses there while paying rent here in New Mexico. And who knows how long I would have had to wait until one or two lungs would be available. I’m content to attend pulmonary rehab and use my oxygen 24/7 until the moment comes. I have faith in Jehovah’s promise of the resurrection. In the Bible there are many examples of him following through with his promises. He has never broken one.

  • bear

    Member
    August 28, 2023 at 1:59 pm

    We have also declined the transplant option.

    • Allan Byron

      Member
      September 14, 2023 at 9:36 pm

      Amen brother

  • Shaz

    Member
    August 29, 2023 at 8:32 am

    I’m not happy about having to think about it as an option. So many risks involved

  • John vandegrift

    Member
    September 2, 2023 at 10:59 pm

    I was diagnosed with IPF several years ago . I’m on oxygen 4/5 liters, as needed. I’m taking Esbriet 801mgs three times a day. My pulmonologist suggested I contact Temple lung ctr. In Philadelphia to discuss the eligibility of a transplant. I’m 80.7 years old. I doubt I’d qualify. So I’ve pretty much decided to live what’s left of my life as best I can. We just got back from Alaska earlier this year, so that off the bucket list. I just hope when I go, that it’s quick, and that I don’t become a burden to my wife.

  • npp

    Member
    September 5, 2023 at 3:15 pm

    Hi Terry-neu:

    I have declined a lung transplant because I not only have Pulmonary Fibrosis but I was also diagnosed with Chronic Heart Disease and have had a pacemaker put in the first of 2023. I am also 73 and I don’t believe I would qualify for a lung transplant for those three reasons. I am OK with not getting a lung transplant and am just trying to maintain my health as long as I possibly can. Doing OK so far and I am not taking OFEV or any other drug because I had every reaction to the medicine as listed just about and it just wasn’t worth it to me to feel so bad all of the time. My oxygen level today is at 98% and has not dropped below 96% since being diagnosed in 2019. I do have the dry coughing and it gets worse at times but the disease is progressing slowly according to my checkups and tests so I feel I am doing pretty good. It is what it is so I am just dealing with it the best way I can.

    Nancy

  • Ac Titu

    Member
    September 10, 2023 at 3:07 am

    Hello Terry

    Your story is no different from mine.

    I am 67 years old. My IPF was dormant for 4 years and then suddenly it started to deteriorate and within 6 months my breathing reached critical levels. At that point in time, I changed my earlier decision not to go for transplant and registered myself for a single lung transaplant.To my good luck, I received the donor lung within a day and the transplant was conducted at St.Vincent Hospital Sydney. Absolutely wonderful team of doctors, nurses and staff.

    I am three months into the operation and recovering well at home.

    It is a wonderful feeling to see the oxy level at 96 and be able to functional in my day to day life.

    My sincere thanks to the donor and St Vincent Hospital . BEST HOSPITAL.

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