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    • #18663

      Unfortunately many of us know that the only “cure” to idiopathic pulmonary fibrosis (IPF) is a lung transplant. Even then, I use the word cure very loosely as receiving a transplant has a lot of difficulties with it and essentially, it can be viewed as swapping one disease for another when it comes to post-transplant living. However, for those with end-stage lung disease, a transplant can restore their health to a whole new level.

      Since being diagnosed with IPF, I’ve connected with many other young adults in the lung transplant community. There aren’t many who have IPF (although I’ve come across a few) and most of them have cystic fibrosis (CF) or pulmonary hypertension (PH). Regardless of the disease we all have, we have the commonality of either receiving or needing a double lung transplant in future. Despite not knowing many of these other young adults in person (only online), I feel very connected to them and thankful they’re in my circle of support.

      That being said, sometimes their stories leave me dealing with an abundance of “feelings” and I am experiencing that right now. How do you feel about receiving multiple lung transplants?

      Before being thrust into the transplant world, and getting to know and love many who are currently waiting for lungs; I’d be in support of people receiving as many transplants as they need to survive as long as they can. However, now that I know the scarcity of lungs and how hard people fight to survive the wait for lungs, I am having a hard time with the answer to the above question. I know a young adult who is now waiting for his third lung transplant in 5 years. Of course I want him to survive, and receive the perfect pair of lungs, everyone deserves this. However, in the back of my mind are the friends who are waiting in the ICU right now for their first pair of lungs and somehow this feels unfair.

      Is it actually unfair? I’m not sure because the match for lungs has to be perfect, so it is up to the physicians and medical team to give the lungs to the perfect candidate. However, it is hard to accept that someone may receive a third lung transplant in 5 years, when some people are fighting so hard for the first one.

      What do you think about people receiving multiple lung transplants? I’d love to hear from you! I want to be happy for this young adult who just signed consent to be listed for the 3rd transplant, but my mind wanders to the friends who are fighting so hard for their first one. It is such a tough place to be in.

    • #18691
      Eileen Owen
      Participant

      That is a valid concern. You are right, though, the lungs have to be a perfect match, so though someone is waiting for their 3rd pair, there may be something that moves them, up the list. Others have factors that may be harder to match. I have had a transplant and mentioned to my husband that if I was having rejection issues, I would want to be considered for another one. He was surprised, but I think it was because he might have thought I went through a lot. I was on the list 5 months waiting and yet I know of people who were put on the list after me and got their lung(s) sometimes VERY quickly.

    • #18692

      Hi Eileen,

      Thank you so much for writing and getting in touch about this topic – it is an interesting one isn’t it? The young person I was talking about in this post actually was listed late last week and received her 3rd pair of lungs on the weekend, isn’t that wild? I guess it means they were a perfect match for her. I am happy for her of course, but thinking about so many of my friends who are in the ICU and struggling through months upon months of waiting for their first set of lungs. It’s just a tough world to be thrust into thanks to this darn disease! I’m so glad you had a successful transplant, and wishing you many years ahead with no signs of rejection. Thanks for sharing your thoughts and opinion on this, I really appreciate it.

      Wishing you well,
      Charlene.

    • #18695
      Linda Williams
      Participant

      Hi Charlene.  I am 73 yrs old, a widow for the second time for 11 yrs now and just diagnosed a year ago with IPF. The pulmonogist says I am at stage 1, early step, I use no oxygen with oxygen saturations 91-96%. Nor anti-fibrotic.  So in some ways it seems early to consider what I would want to do when much worse but as I understand that can happen rather rapidly.  After reading about people on OFEV or Esbriet and symptoms, lifestyle, problems, etc I decided – and told my doctor – that I want no ET tube, ventilator, or lung transplant.  I really don’t think I will change my mind but I could. On a CT Scan it stated possible Pulmonary Hypertension, so my GP is starting to investigate that with first having an echocardiogram.   I wish all well who undergo all that goes with lung transplant (s) but I just don’t feel it is for me.

       

      • #18730
        Luciane Horton
        Participant

        As I read the post, my eyes are filled with tears..it is very difficult to process my feelings..

        On one hand, I am happy for people, older or younger alike,  who has this horrible diseases and are able to find donors and start again their lives. On the other hand, I get so frustrated because I have a 27 year old waiting for the call.

        We, as a family, have not even crossed the first line of the first transplant. Everything is abstract to us. We attended seminars, we read forums and participate in support groups but the truth is we don’t know what is ahead of us.

        At this time, my son has already decided..he will have one transplant and we will take it and run with it as long as we can. But gain, we are speaking without knowing what is ahead of us..

        IPF sucks that is the truth!

         

        • #18739

          Good Morning Luciane,

          Thanks so much for sharing your thoughts on this post. It sure is a difficult one, isn’t it? So much so that I had a hard time deciding whether or not I should even write it due to the amount of feelings I had associated with this topic.

          Your son is very close to my age, I am 31 – so sorry to hear of his IPF diagnosis! He is active on the lung transplant waiting list? I have many friends who are waiting on the list as well, including one who has been fighting in the ICU for several months to receive her first transplant. Somehow it feels unfair to her that another patient (albeit in different countries) has received a third. I know it isn’t about “fairness” and is instead about the perfect match for the donor lungs to the recipient, but it is tough….

          Wishing your son all the best as he (and you all) embark on transplant, do keep us posted how you all make out. I’ll be sending him good thoughts! Thanks for sharing, and I couldn’t agree more: IPF sucks!

          Take care,
          Charlene.

           

           

    • #18700
      Eileen Owen
      Participant

      Hi Linda,

      I always knew I wanted a transplant. I received one last year at the age of 69. I was officially diagnosed in 2013 with IPF though we had walked down that path for about 6 months before I had a lung biopsy to confirm. When I was doing well and only on minimal oxygen, I debated with myself as to whether I would try to get one and it depended on what age I was, etc. When I started going downhill (and it seemed rather rapid-though that’s different for everyone) I decided I needed to see my grandchildren grow a little more. My youngest was 7 last year and the oldest graduates from high school this year. I’m grateful for my extra time, but know that’s not the direction for everyone. We all need to just live in peace with our decision. By the way, I started off with Ofev and had really bad diarrhea so went off of it and switched to Esbriet (expecting problems) but had virtually none, unless I hadn’t eaten first. Good luck to you!

      • #18702

        Wonderful reply Eileen, and thank you for sharing your thoughts Linda ( @swanlw45 ). I completely respect your decision about end-of-life care (ie. ETT tube, etc) and no transplant. We certainly need to be comfortable with our decision, and it sounds like you’ve given it a lot of thought. I hope you remain at stage 1 for a long time and that these conversations don’t come about again for many years. Thanks again for sharing a bit of your story with us.

        Wishing you well,
        Charlene.

    • #18704
      Linda Williams
      Participant

      Thank you Eileen for your response and encouragement.  My biopsy with bronchoscopy only said “no malignancy”. While that is reassuring as Mom died of lung cancer, I thought it should have referred to diagnosis of IPF also. But it didn’t.   May you continue to do well. Linda Williams

    • #18705
      Linda Williams
      Participant

      Charlene, thank you also for your response  & encouragement too .I guess I might also be in a stage of  denial in having such a lifetime debilitating disease that ends life. I too hope if I have IPF that I remain in early stage for a very long time. Having read on the PF News Forum of those who have had for 10+ years is very encouraging indeed.  Linda Williams

      Li

    • #18712

      Hi Linda,

      Thanks for your reply. I completely agree re: reading the experience(s) of those on this website who have lived 10+ years with IPF. One tidbit of information I learned recently as well, which was welcomed in my mind is the news that the 3-5 year prognosis for IPF is actually outdated. That was one of the first things I came across in my Google searching after I was diagnosed – I never should have done this in retrospect – but glad it is quite outdated. I don’t know the updated number myself, but have heard many times that the prognosis spans longer than this now, as long as the disease remains relatively stable. Fingers crossed that happens for us both!

      Wishing you well.
      Charlene.

    • #18718
      Linda Williams
      Participant

      Dear Charlene yes I agree ; keeping fingers crossed! Glad to hear prognosis of of only 3-5 yrs post diagnosis has been updated to longer.  I have noticed you love to travel, as have I but I know for the first time that I am dreading even a 3 to 4 hr drive.  Yesterday did only a 45 min drive one way and back to home, stopping along the way to eat on my home.  I was really tired afterward – so looking to do shorter trips close to home. My son lives at least 8 hrs driving to NC and a flight to see  daughter who lives in CA.  I live in SW Ohio.

      How do you do continue to travel?

      Linda Williams

    • #18719
      Linda Williams
      Participant

      Charlene ; sorry I got off topic. Linda Williams

    • #18720

      Hi Linda,

      Never apologize for getting off topic, some of the best conversations had on the forum are because some of us went off topic 🙂

      I do love to travel, and I hate to admit this but it is getting harder. Not necessarily because of my oxygen requirements – I usually book an airline where I can bring my portable oxygen concentrator (POC) on board, and always have my POC on when driving in the car/on long road trips. Moreso what is causing trouble for me when I travel is the fatigue, which sounds similar to your experience. I prefer to travel with someone now who can take over things if I get too tired, such as the driving. I also don’t pack my adventures so full, which pains me to admit. I have an upcoming trip to Hawaii booked and I did an excursion on one day, and the next I didn’t book anything so I could allow myself some time to rest. I wish I didn’t have to do this because obviously I want to maximize my time there, but I just can’t push through the fatigue anymore so it is about finding a balance. Hope this helps a bit!

      Take care,
      Charlene.

    • #18748
      Linda Williams
      Participant

      Hi Charlene,

      Thank you for your response re travel. As I am not on oxygen yet I have not had to check yet. Are there some airlines that do not allow a person to bring their oxygen concentrator onboard and use it?  I have started using wheelchair delivery to the gates at airports due to my arthritis. That helps not to tire me out so much either.

      I hope you are able to enjoy your trip to Hawaii to the max!  Even if some days are spent reclining on a lounger outside in the shade.  It is a beautiful place to be in.  Have only been there once but I decided if returned, would not cruise with day trips on different islands but stay and soak up the atmosphere based in same spot, maybe taking a few days trips but not daily.  And I made that decision after just having been there. Doubt I’ll ever get back  though as I never dreamed of ever getting there in the first place!    Linda Williams

       

      • This reply was modified 1 year, 5 months ago by Charlene Marshall. Reason: formatting
      • #18777

        Hi Linda,

        Thanks so much for getting back to me, and sharing a bit more about your experience. I’m glad to hear you’re not on supplemental oxygen, and I hope it remains that way for you for a long time. As far as I know, there are not any airlines that prohibit people flying with oxygen; however, there are some airlines that require extensive documentation from your physician. While this isn’t a problem for me to obtain, sometimes my doctor charges me for the 12-page document the airline requires so I try to go with airlines that permit portable oxygen concentrators (POC) on board the aircraft without medical documentation. That said, they do have to be FAA approved, so definitely check that out ahead of time. Glad you’re using the wheelchair to help avoid fatigue, I often do this now as well…

        I am so excited about Hawaii and need to find that perfect balance of relaxation and doing different activities. I’ll be planning those out in the next few weeks. I keep meaning to do it, but other things arise! Thanks for sharing your thoughts on Hawaii, I’ve heard lots of good things about the atmosphere 🙂

        Take care,
        Charlene.

         

    • #18756
      Robert Morrison
      Participant

      Hi Charlene and other writers on this thread. I am learning this forum is a wonderful source of guidance on the many decisions we make as IPF patients. For me the discussions on one or more lung transplants is extremely helpful. I am 69 years old and except for the fact that I am overweight I think I fit the profile of a worthy transplant person. Because of an extremely bad infection I got after hip replacement surgery 12 years ago, the thought of going back into an OR for more surgery was just not something I ever thought I would consider. But as my IPF progresses and because of a recent exacerbation I started reading up on transplants on-line and in Pulmonary Fibrosis News. While I have come close to deciding transplant is the way I need to go, some new things have caused me again to reconsider. And first and foremost is the old supply and demand dilemma and I would guess based on comments here demand exceeds supply almost everywhere. So I am beginning to question my worthiness to get in the transplant que. If a perfect match lung or lungs became available I am finding it difficult to accept knowing there is someone out there who is not getting lungs when I do. For example, I find great comfort in reading Charlene Marshall’s writings on the aspects of living with IPF. But Charlene is in her 30s and I am almost 70. A new set of lungs could change her life for a long time to come, quite likely adding many more years to her life when  it may mean just a few more years for me. I use Charlene as an example only because I know a little about her situation. But I still think there has to be many more folks out there prompting me to question how can I justify accepting a transplant when there are certainly more worthy candidates than me. I am scared to death (pun intended) to think about death by IPF but also afraid to take away someone else’s potential for an improved life. I am curious if anyone else wrestles with this issue and how they make that final decision. Bless you all.

      Robert Morrison

      • #18778

        Hi Robert,

        Thanks so much for writing sharing your thoughts on this topic. It is a really interesting one, as someone I know is currently recovering from her third double lung transplant. This is not something that is common in Canada, not at all. Did you get back home okay, as I believe you mentioned you were in Florida? If so, did you find out whether or not it was an exacerbation you experienced, and what the cause was?

        Having another exacerbation is one of my worst fears, as I lost significant lung function when this happened in response to a viral infection in 2017. I hope you didn’t experience one! Demands do exceed supply when considering transplant, but it is absolutely about the best match for the recipient and donor, so it isn’t as though you’re taking organs from someone else. If you want to pursue transplant, please do and put aside the “supply and demand” ratio, because you have no control which donor lungs might match you best and if that is the case, you certainly deserve them. Please don’t consider it as “taking away” the opportunity from someone else, it is completely up to luck and science. I even remember Mark telling me that his transplant coordinator told him a lot of the transplantation process is about luck! I think if you want to pursue transplant, definitely look into it and have this conversation, voicing your concerns, to a member of your healthcare team. They will be much more apt to reply and address your concerns. Maybe the wait at your centre isn’t as skewed as some others, meaning maybe the demand and supply is a bit more even? Who knows! What I do know is: we all deserve a fighting chance to beat this disease. Hang in there and sending you much love and support!

        Charlene.

    • #18919
      Ray Hastings
      Participant

      this is in regards to travel.  you will have a difficult time taking 02 bottles on a plane. 02 concentrators are acceptable are allowed.  there are companies online that rent scooters for use on ships and at some land based locations. they deliver and pick up from the location so it is easy to get and us them.  it is best to send an email to the airline in advance to make sure you get the requirement of thee 02 most domestic air lines have a form on line the you can fell out and submit, just give a couple of weeks for them to process bbuut it will be added to your airline records. YOU CAN DO  the same for wheels chair transport in the terminal. I usually fly delta and they have been grrat

      Ray

    • #18932

      Hi Ray,

      Thanks for getting in touch regarding this topic and the reminders about travel with 02. Yes, oxygen bottles are prohibited on planes, but as long as the portable oxygen concentrator (POC) you’re using is FAA approved, you can bring it on board the aircraft. Definitely a good reminder to contact the airline ahead of time (by a couple of weeks, as you say) so they can sort out any paperwork/requirements ahead of your flight. This can take some time. Glad to hear Delta has been a great airline for you, I’m always keeping in mind which airlines people say are good to use for those of us with oxygen. Thanks for sharing!

      Charlene.

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