Viewing 27 reply threads
  • Author
    Posts
    • #30788

      Back in August of 2017, I wrote a column about the harsh realities of lung transplantation. At that time, I was facing transplantation a lot faster than I wanted to be due to an acute exacerbation of my idiopathic pulmonary fibrosis (IPF), which thankfully, has stabilized a bit since then.

      In this column I talked about the importance of acknowledging that lung transplantation is not a cure for pulmonary fibrosis, it is merely a treatment option and essentially it is swapping one chronic illness for another. Navigating life post-transplant is not easy and includes many different medical appointments, managing an intense regimen of anti-rejection medications and keeping as physically, emotionally and mentally healthy as possible. Then, there is always the risk of your body identifying the new lungs as a foreign item and rejecting them anyways.

      I also wrote a forum post about losing friends from this terrible illness and how that never seems to get easier, no matter how many times it happens. Many of my friends, like the one I lost in December of this year, were considered to have had “successful” transplants.

      Since my diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, the topic of lung transplant has been talked about openly. I knew I’d be facing one eventually, and I never had so much uncertainty about it until recently. All of my friends who have passed away post lung transplantation had several things in common:

      • They were all under 45 years of age.
      • They all had “successful” lung transplants within the last 4 (yes, only 4!) years, however, they all eventually led to chronic rejection, requiring a second transplant.
      • They all either received their second gift of life, and didn’t survive the surgery OR they died while on the waiting list for new lungs.
      • They all deserved better.

      I know the medical teams do their best, and I know lung transplantation is getting a lot of research (especially amid COVID-19) and attention in hopes to better the process. Further, I understand that this area of science has made extreme leaps and bounds forward in terms of success rates of double lung transplants in Canada and the US. However, today I am just sad. I am sad for my friends, and slowly I fear that I am starting to realize that lung transplant isn’t as exciting as I once thought it was. I know it will still be my life-saver, I know that. I also now feel acutely aware of how my life will likely still extinguish early, even if I receive the perfect set of new lungs.

      What are your thoughts on lung transplantation? 

      If given the option, would you consider it or are you actively pursuing a lung transplant for the treatment of IPF/PF? How do you feel about it?  

    • #30808
      Jeff Taylor-Jackson
      Participant

      Hi charlene,

      You asked: If given the option, would you consider it or are you actively pursuing a lung transplant for the treatment of IPF/PF? How do you feel about it?  

      I am not so far down the road as you. I was diagnosed in April 2021. I must admit I still have not got my head around the diagnosis yet. I did ask my consultant about the “last resort” Lung transplant option.

      He was matter of fact about it, saying pretty much as you said in your post.

      For me, right here and now, there is no cure for IPF, so its going to get me sooner or later, so I have zero chance of survival.

      Given that lung transplants might give you a 10% chance of either survival or another five, maybe ten years to be with your family a bit longer……well, I’d take that 10% over zero%.

      How do I feel about it? Not great if I’m honest, given the hand I have been dealt, so I am trying to make the best of it and try and do it in a positive way.

      I am actively trying to help the medical team at my hospital in some small way with their research. Will they find a cure? I dont know, but if you don’t shoot, you don’t score do you.

      I really hope for all of us – someone, somewhere has a breakthrough.

      Kind regards

      Jeff.

      • #30821
        Harold
        Participant

        Hi,

        I am a 69 year old man.  I had a single lung transplant August 31.  So far I am very glad I did.

        I had had PF for who knows how long, but was fading fast, over a 6 months period last year.  The Doctors told me that a transplant was my only alternative, and that I should view it more that it would improve my quality of life than extend it, although it seemed to me that I didn’t have that much longer to live.  The process of getting on the list took about two months of repeated tests, which were generally a nuisance but not painful.  The most intrusive were a liver biopsy and and an angiogram.

        I was in the hospital two weeks.  As soon as I came to I could breathe room oxygen.  The aftermath was not as painful as I expected. My hip replacement years ago was much worse.  Once I came to, I used no narcotics.  The most annoying were the tubes, and they came out in about a week.  By the time I went home I could walk a hundred yards or so, breath room air, and felt pretty normal.  I have been gaining strength ever since.  I went to physical therapy and exercise regularly — walking at a pace, riding my bike, outdoors or indoors, and stretching.  I have walked as much as 8 miles in a day, up or down 150 or more stairs, and over terrain, so I don’t view myself as an invalid.  I was back to work — a desk job, virtually — almost immediately after I returned home, and am full time.   I still have a cough, although more mild than before.  The doctors say it is from the bad lung and may or not disappear.  I always have the risk of rejection, but so far have had no complications or side effects.  Life is more or less back to normal, although I have remained secluded because of Covid.

        I don’t usually chime in on line (to anything) but the tone of the responses to this post has been so apprehensive that I thought someone who has already gone through the operation should respond.  There are many of us.  So far my experience has been fantastic, but I know others have had more problems.  Even still considering the alternative, I give it two thumbs up.

        Good luck all around.

        Harold.

        • #30822

          Hi Harold,

          Thank you so much for sharing your experiences with us on your single lung transplant. As you say, it is always nice to hear from others who have been through it and who do have a positive experience to share. I’m glad the recovery wasn’t as challenging as you expected; that is one of my biggest fears so I do appreciate the time you took to reply to us and share those details.

          Wishing you all the best as you continue to recover!
          Char.

        • #30867
          ChArles Bietsch
          Participant

          Charlene.  Hi, read your article and sense this is coming from a place of uncertainty and/or fear.

          I have to disagree with you on several points…. In particular the title of the article “harsh” reality????

          what could be more harsh than living with IPF and not being able to do anything about it???

          First, the statement trading one disease for another is rather skeptical. In reality it is trading a decking quality of life and probable death for hope and an easily managed lifestyle chance

          Management of the meds are not problematic, and cause no significant problems for most

          limitations on lifestyle are minimal, common sense, and a lot more freeing than being tethered to an 02 bottle

          Statistics on LT survivability are based upon a 10 year moving average, and would currently include transplant stats from 2012.  A lot of advances have been made since then

          in fact, most die from other issues  1st year mortality is less than 10%

          Myself, I was diagnosed in 2013x experienced a rapid decline in 2017, and was txd in late 2017 with a single Rt lung

          My hospital stay was 8 days, no complications , and have been leading an active and normal life since then with minimal restrictions.

          There are many in my transplant support group that are 10 years post …

          Sure, some run into complications, but what are the alternatives ?

          I have enjoyed travel, seeing one of my daughters get married, witnessed the birth of another grandchild, and watched the other 4 grow into really great people

          If needed, I would do this  again in a heartbeat.

          It is a gift and a blessing from God….

          Regards

          chas2712

        • #30895

          Hi @chas2712

          Thanks for writing and sharing your thoughts on my column – I appreciate everyone’s opinions, even when they differ from mine. Of course my writing is coming from a place of uncertainty and fear; there are few surgeries more invasive or intense than a double lung transplant.

          I know lots of patients personally who have shared their struggles post transplant, and managing an anti-rejection regimen is very similar to a chronic illness. In fact, my transplant team told me those exact words re: “swapping one chronic illness for another” during my evaluation, so I am going to stick with that statement being accurate 🙂 Second, the medications do cause a lot of problems post transplant. Manageable? Yes of course, but still not easy from my understanding.

          I’m really glad your transplant process was seamless, that is wonderful to hear and I’m glad you’re still doing well. Each person is entitled to their own opinion about transplantation, as its a very personalized choice. I hope you continue to do well!
          Char.

        • #30903
          ChArles Bietsch
          Participant

          Hi… Char

          I responded to your article from the standpoint of a person who has gone through the process, and to share my experience and views

          The title of the article was the “harsh realities”of lung transplant…, which could infer that your points are fact, and apply to all cases.

          While some May experience issues you mention, many do not.

          True, it is a daunting experience on many levels.  So is living with IPF….

          Each individual is different,  evaluates and makes their decision.

          outcomes are largely dependent upon physical condition, mental commitment, and compliance.

          You speak from your experience, I speak from mine, which is to encourage individuals to follow the journey If they are able.

          Transplant is a gift and a blessing that offers the chance to continue the journey….

          Blessings to you on your journey …

          chas

           

        • #30988
          Kathleen
          Participant

          Thank you for your post.  My HP diagnosis has evolved to IPPFE.  1 in one million people world wide get this diagnosis!! I am to be evaluated in 2 weeks for lung transplant but am having second thoughts. I don’t know if the process, the recovery and the meds are worth living maybe 5 more years.  Now my prognosis in 20 months!! Your post gave me some encouragement.

        • #30994
          Christie Patient
          Moderator

          Hi @kathleencm, I’d advise you not to get hung up on the statistics for transplant survival. Transplant medicine is relatively new, and it is improving leaps and bounds each year. People will likely survive much longer than they did ten or twenty years ago, but of course, we won’t know that until ten or twenty more years have passed. Even if you decide that transplant isn’t the right choice for you, I’d say to get evaluated and listed anyway. It’s better to have it done and choose not to than to not have it done when you need or decide you want to… Coming from someone who had to watch my mom fight for every breath on a ventilator in the ICU because she was not listed before an acute exacerbation put her in cardiac-pulmonary failure. She wanted a transplant and she got lucky, but not everyone does.

      • #30827

        Hi Jeff,

        Thanks so much for writing and answering the question I posed – I love hearing from other patients! I really appreciate the approach you’re taking and you are absolutely right – some % is better than none, so if the scenario might work out its worth going for it in my opinion anyways. Lots of circumstances would exclude people from not going forward with transplant too, and I understand that; such a personal experience for everyone! Kudos to you for approaching transplant and your diagnosis with the attitude you’re demonstrating, its admirable.

        Take care and keep in touch.

        Char.

    • #30812
      Karen Rachal
      Participant

      I was diagnosed in Oct. 2018.  I had a pulmonologist who told me that I was not a candidate for a transplant.  I asked him about clinical trials but never got an answer.  He did help me get on Esbriet.  After two years, I found a clinical trial at Shands in Gainesville, Florida.  I changed pulmonologists and he sent me for evaluation with a transplant team.  At that time I was 74 years old.  I met wit the team and was told I would be evaluated.  That was the end of January.  I heard in October of 2021 that they wanted me to do a 24 creatinine clearance test.  Unfortunately the morning I was supposed to turn in my sample, I fell and broke 5 ribs before the 24 hours was up.  Also my husband started to have medical issues.  Since he would be my primary caregiver, I have decided not to pursue a transplant.  I am now 75 years old and he is 77.  I was enthusiastic at first because my oldest granddaughter got married and I so wanted to be a great grandmother.  But when the evaluation never happened, I realized that it wasn’t going to happen.  Also I was evaluated for 3 clinical trials, but was told that I didn’t meet the criteria they were looking for.

      • #30826

        Hi Karen,

        Thanks so much for sharing your experience with us, though I’m so sorry the transplant evaluation didn’t happen due to an injury. That is so tough to process. I hope you and your husband are managing okay now; wishing you both the best of health.
        Keep in touch,
        Char.

    • #30814
      Robert B
      Participant

      I was looking at double lung transplant but due to Covid they were reluctant to push it through. Although, I was vaccinated, I ended up with Covid. Then shingles, and now gastroparesis. I can’t even process food.
      I’m no longer considering a transplant. I’m doing ok on 3 liters of oxygen and don’t need more problems.

      • #30829

        Hi Roberta,

        I’m so sorry to hear of this experience, that is so hard to accept that COVID prevented the transplant evaluation from taking place and that you ended up with the virus. What a tough time for you! I hope you continue to do well on the 3L of 02 and recover from these setbacks. Take care and thanks for writing.
        Char.

    • #30818
      HerbC
      Participant

      I was diagnosed with IPF in 2016. At that time my symptoms were mild and tolerable. I  never even considered a lung transplant.  Since then my lung function has steadily declined. I was placed on OFEV in 2019. Currently I’m utilizing oxygen when I move about.

      On October 11, 2021 I was placed on the lung transplant list at 73 years old. Now, I realize that my only hope for  somewhat of “normal life” is a transplant. Yes, I’m apprehensive about the procedure and fully understand the risks. I know the post transplant won’t be easy. I have a good home support team and I have faith in the transplant facility and transplant staff. Without the transplant what degree of quality of life will I enjoy?  I’m currently in pulmonary rehab  getting into the best physical condition pre-transplant.

      I’m prayerful and feel that I’m making the right decision for me.

      Herb

      • #30824

        Hi Herb,

        Thanks for sharing your experience with us; your journey sounds very similar to mine in terms of diagnosis year and disease trajectory. It sounds like you’re doing everything right to prepare for the transplant and having trust in the team is so important. Wishing you all the best through the transplant process.
        Charlene.

    • #30819
      Ron
      Participant

      Hi Charlene,
      Its been awhile since I visited the forum. I’m still doing fine sans any treatment. Still taking the green tea extract (Teavigo) at half the dose used in the study (ie: only 300MG per day).

      Back in December 2019 I ended up hospitalized with sepsis and pneumonia. Was sedated for 3 days, woke up with my three daughters from the east and west coasts standing bedside in Colorado Springs. They thought I might not survive. It was decided I should move in with my daughter and family in Boise, Idaho and that’s were I am now.

      I had a conversation with the attending physician about transplants. I had acknowledged (or maybe wined) that most transplant centers would not do a lung transplant because I was over 70 years old. During that conversation the doctor said he would not recommend a transplant anyway. He had treated several IPF patients in his private practice. He said that most recipients only buy 2-4 years life longevity and sometimes that requires a second transplant.

      The question was resolved in my mind at that point. While some folks want to cling to life as long as possible, I am one of those who favor a good quality of life over longevity.

      I do think anyone contemplating not having a transplant based on my doctor’s remarks should try to verify that statement first. I did not. I was satisfied that I did not want to go through the operation, and the drugs and risks and the short lifespan improvement sort of cinched it for me. It’s that qualify of life choice side of me that kicked in.

      Decisions like these are very personal and there is no good or bad one.

      Good tidings to everyone here. Ron

      • #30823

        Hi Ron,

        So nice to hear from you, thanks for giving us an update on how things are going. So sorry to hear about your episode in 2019, that must have been scary to wake up and realize your daughters had arrived at your side. That being said, I’m glad you were able to have a good conversation with the doctors about transplantation at that time and come to the conclusion that is best for you. You’re right, the decision is a very personal one about whether or not to pursue transplantation. Thanks for sharing your thoughts with us!
        Take care,
        Char.

    • #30830
      Cheryl thomas
      Participant

      Hi Everyone

      I too have IPF and at 67 am about to start the testing for a lung transplant at the University of Pittsburgh, I was diagnosed in April of 2021 and at this time am asymptomatic. I am very nervous about the disease itself. I am a retired nurse and took care of transplant  patients. I am  not sure this is the course I want to go though. I am currently in a clinical trial at the University and am doing well so far. I pray for all  that have this disease. I love reading your stories, I don’t feel so alone.

      • #30902

        Hi Cheryl,

        Thanks for sharing a bit about your story with us, and that you’re starting the transplant testing. UofP is a great center from what I’ve heard, so I’m sure you’re in good hands. Keep in touch throughout the process if you need support, and know you aren’t alone. Glad you’re asymptomatic and that the trial is going well; I’ll keep my fingers crossed that continues for you!
        Char.

         

    • #30843
      Thomas Adams
      Participant

      Just curious as to out-of-pocket cost related to double-lung transplant.  Assuming one is on Medicare and, recognizing the multitude of coverage options involved with Medicare Part B, what would one say is an average expected out-of-pocket cost for transplant evaluation and the actual procedure.  I recognize the potential wide variances possible with this answer!  Thanks all.

      • #30901

        @tladams55

        This is a really good question! Unfortunately I can’t answer it, as I am in Canada so medicare isn’t something I am familiar with at all, along with most out-of-pocket expenses. We do have some here too, but its so different than in the US. @christie-patient, do you have any idea about this based on your Mom’s experience?

        • #30905
          Christie Patient
          Moderator

          I know exactly what was billed to insurance after my mom’s hospitalization, but I do not know how it broke down to reflect just the transplant and hospitalization/care required post-tx. Her case is not a good example to compare since she was in the ICU for four total months waiting and recovering. I also don’t know how much my folks paid out of pocket after insurance, but I can ask if that would be helpful @tladams55. But again, I don’t have the itemized list. My mom was insured through her work, from which she had retired on disability mere months before her hospitalization, but she was also on medicare (part D if I recall, but don’t quote me.. I didn’t have much to do with that)

    • #30847
      Mike McCutcheon
      Participant

      I just got a right lung transplant on Oct 30, 2021. I was on high flow oxygen 24/7. It moved me to the top of the lung waiting list. My thought was in 3 months I’m in a Urn or have a new lung. Time will tell how long I have. I’ll have to wait and see. Doing well so far

      • #30898

        Congratulations on your transplant, Mike! Glad to hear you’re doing well and that your gift came to you on time. Wishing you all the best.
        Char.

    • #30846
      William Pommy
      Participant

      I was diagnosed 16 years ago.  I’m now 76.  When I first discussed transplant with my pulmonologist, she said she would support the idea but to consider all the ramifications, anti rejection drugs, life expectancy, etc.  at the time I believe the life expectancy was five years as it is now.  I’m sure someone will correct me.  No one knows why I have survived this long.  I have completed several pulmonary rehabs and will now return after an absence of nearly six months. I’m on oxygen 24/7.  I take Esbriet, NAC, and green tea extract.  I am slowly getting worse and can no longer make certain house repairs.  (Had to give up repairing stucco on the second story).  Gave up a 50 year “career “ in drumming and sold my Harley.  However, my doctor said she wouldn’t be surprised if I lasted another 15 years!  I’d give transplant careful consideration.

      • #30900

        Thanks for sharing your story with us, William — 16 years? Wow! I hope others read this and are inspired, as I know many get caught up in the outdated 3-5 years to live prognosis. I also hope you get the next 15 years, this is great to hear, thanks for sharing.
        Char.

    • #30853
      David Ota
      Participant

      CHARLENE!

      We have swapped stories over the years.  Lung Transplants are a Harsh Reality. No Doubt. No Lie.  Like most things in life, how you see the world and all it’s stark realities can makes a difference.

      A friend of mine, about the same age, also an engineer, died of CANCER?!? from the transplant drugs.  I remember sitting with him, eating junk food, and telling him to go for the horrible surgery to remove his cancer.  We both rolled the dice once and won on the transplant, roll them again.  He ultimately decided a successful surgery was still a horrible loss and chose not to have the surgery.

      A childhood friend of mine, no IPF, no Transplant retired and died on a golf course within a year of retiring.  I heard from his family that he NEVER went to the doctor, he just did not want to do that.

      Before I was diagnosed with IPF, I knew I would lose this race.  Everyone does.  My goal in life was not to win the race and live forever, no vegan detox or freezing my brain.  My narrow, selfish goal was to have fun while I’m here, and take care of the responsibilities I have accumulated over the years.

      I’m in chronic rejection now, 6 years post transplant.  I had a deep fried crayfish poorboy, home made this past weekend.  1st one I’ve ever made.  Dang it was good.

      This was a long winded way to say, life in general has made me no guarantees.  My life is what I make of it.  It’s not always fun, but, when I can make it fun, I try to show up, shut-up and smile.

      PEACE… and have fun 🙂

       

       

      • #30897

        @davidota

        I love hearing from you! Thanks for taking the time to write and share your wisdom, along with an update on how you’re doing. I’m sorry you’re dealing with chronic rejection now, is there a chance that can be slowed/stopped/reversed? I’ll hope so for you. You’re totally right about not knowing what will happen in this life; tomorrow isn’t promised (as cliche as that sounds its true!) to any of us. Sorry to hear about your friends!
        Take care and keep in touch … I’ll be thinking of you, and will focus on having more fun 😉
        Char.

    • #30859
      conni
      Participant

      I was 75 yrs old when the pulmonologist at Shane’s hospital suggested I consider a transplant. I am on o2 at night and when I exercise. I read the entire protocol on their website and it was very complete. A day to day synopsis from evaluation to surgery.

      I also have osteoporosis and I factored that in my decision to not go for an evaluation. As some have mentioned their is pretty much a five year survival.I felt that half that time would be spent in doctors office or hospital. Decided I would rather spend the time I have left ,and who knows how long that would be,training my dogs,seeing my grandkids etc.

      but I would really have had a struggle if I were you Charlene,because you are so young. It would seem more plausible and hopefully before 5 years some new treatments will be around. I feel for you and such a hard decision.

      conni borwick

      • #30893

        Hi Conni,

        Thanks for sharing your thoughts on the transplantation referral and your experience with it. It’s such a personalized experience and there are so many variables to consider, especially as you say, other co-morbidities or conditions. Wishing you lots of time with your dogs, grandkids and quality moments to come! 🙂
        Char.

    • #30866
      Connie Lum
      Participant

      Hi Charlene,

      My younger brother had a double lung transplant going on 4 years in July , he was 61 when he received the lungs. Doing well, he would have died if he hadn’t. Because of this all the siblings had been tested. Out of the other 4, 2 of us were positive. My youngest brother, currently 62, is on 24/7 oxygen at 4 lpm at rest. He suddenly took a turn for the worse when he required gallbladder surgery. That surgery went fine but his lungs took an irreversible hit. I will be 70 this year and was diagnosed when my other brother had his transplant.  Asymptomatic at the moment. My brother doesn’t want a transplant even though he’s only 62. His choice, he’s married with no children. I watch him carefully, for I know the road he is going down will be the road I will take. I can’t decide about a transplant. Too early. I will have to see what happens to my brothers. I am lucky to be able to compare the one who had the transplant and the one who refuses to get one. Time will tell. It’s a difficult decision to make. Good luck everyone!

      • #30894

        Hi Connie,

        Thanks for sharing a bit about your brother’s story, and it is wonderful to hear he is still doing well 4 years later. So sorry to hear that you’re all dealing with this cruel lung disease; it’s really unfair. There are some studies going on to better understand the genetic link (if any) of IPF, and this is an area I’d certainly like to know more about after hearing stories like yours. I hope you remain asymptomatic for a long time to come, and wish you luck with your transplant decision.
        Take care,
        Char.

         

         

    • #30868
      Mark
      Participant

      Like many who have responded, I did a lot of research about my medical issues.  I was diagnosed in 2016.  I am currently 66 and only stared supplemental oxygen 2/22/2022 and only 2L when exercising, and doing extensive yard or house work.  I do not take any medication for my lung issues, although I do take several for my RA and Zollinger-Ellison condition.

      i have also found that a lung transplant may get someone an extra 4-6 years though I imagine that some are longer and some shorter.

      Also some of the many papers written about lung transplants talk about the many medications that o e will have to take for rejection, or a better way as on doctor told me, you will be immune compromised at such a level that with a virus as we currently experiencing, I would advise you to never leave your home, and be very very careful of contact with anyone.  Also in many of the research I found, the cost is astronomical, many stated that figure a cost of 1 million, and hope that insurance covers it.

      so at this point I am at a hard NO for a transplant.

      but then everyone has to figure this issue out for themselves.

      I no longer have to worry about a partner, passed in 2014.  No children to have issues with, already retired from a career I enjoyed.  Don’t have the “bucket list”. I have already traveled the world and seen what I wanted.  So when my lungs decide it is my time to leave this existence, I am more then at peace doing so.

      • #30870
        ChArles Bietsch
        Participant

        Mark….

        Some comments  on your post….

        Sure your immune system is depressed.  However, you don’t have to move in a bubble.  I have navigated the last two years with no issues and have led no less normal life than others.

        It is no more dangerous than navigating the landscape with ipf.  One virus could wipe you out as well. Just be careful

        life expectancy is in as rolling 10 year a scale. Many live 10 years plus with no issues

        the meds are not problematic for most

        the cost is covered by Medicare and supplemental insurance

        aftrer living with ipf for 4 years, I was txd 11/29/2017…, in the hospital for 8 days, no issues and living a great life

        I would do it again in a heartbeat…, it has been a blessing and a gift for me and many othes

        But, each had to come to their own conclusion. I would recommend that before you rule it out, sit in on a lung transplant support group meeting and ask questions

        all the best…

        Chas

      • #30896

        Hi Mark,

        Thanks for sharing your thoughts on the transplantation process; I really appreciate hearing from others on this topic. Like you, I’ve done a lot of research and it sounds like the statistics around survival are improving all the time, but its something I factor into my decision making too. I admire your approach, thank you for sharing and glad to hear you were able to do all those wonderful things, like retire from a job you love and travel the world.
        Char.

         

    • #30875
      Christie Patient
      Moderator

      It is a very personal decision to be sure. It must be especially hard to imagine success when so many of your personal connections with “successful” transplants still died young. I know I am fortunate that within my transplant circle, I have not had to witness this. My mom is coming up on three years post and is doing well. She has had some issues but is overall pretty healthy and happy with her decision. Of our BN cohort, there are a lot of younger transplantees who are doing great 3-5 years post, and beyond. Brad, Kathleen, Anna, Lara, Mary (Kate’s sister), Cullen (Colleen’s son), Nicole (more recent tx), and Kevin and Sam who are older… I know that their journies haven’t all been a walk in the park, and I don’t list their names to try and balance the scale of your losses, Charlene. They all live with the risks and make accommodations for their health with a transplant, but that isn’t so different than living with PF. I just know that even though there are risks, there is potential to thrive and live a long, full life with a transplant.

      I think I know how I would feel if I were in your shoes, though of course, I can’t say for sure unless/until I actually am. It’s scary and unfair, and it sucks that the only long-term solution to the PF problem is something so major and risky as a lung transplant. All I know is that when it comes down to it, you will make the decision that is best for you. You have put in the work to think through the implications, and have experienced and witnessed enough to inform your choice. Whichever way you choose to go, it will require extreme courage, which you have in spades.

    • #31201
      Holly
      Participant

      Hello, Charlene and fellow IPF warriors. Your article made me very sad, because I sense  completely understandable feelings of exhaustion, pain, anger, and perhaps bitterness. I am three years post transplant (DLT),  and I first want to express my admiration to all of you who have joined in supporting each other in the IPF community. After my diagnosis mid-2018, I refused to take part in any discussions or support groups. I attended a pre-transplant informational meeting at UCSF, began the process of fulfilling listing requirements, and grappled with all the emotions pretty much on my own. That’s just what felt right to me. I didn’t research lung transplant because I knew I wanted it no matter what. Why? Well, here’s my mantra, written on a white board or mouthed (because I couldn’t talk while on a ventilator) during my three months in U waiting for a donor: I WANT TO LIVE! If any of you  think a “few years” of added life after transplant somehow isn’t worth it, well, I would propose that your opinion might change from the perspective of a hospital bed with a trach, and a doctor telling you to “prepare for end of life.” Or–maybe it wouldn’t.  Maybe other people don’t love life as much as I do. At age 68, I wanted to experience retirement, I wanted to be alive for any eventual grandchildren (sorry, Christie,  no pressure!), I wanted to travel and to enjoy my loving family and friends.

      Transplant was not an ordeal, and post-transplant life has been extremely manageable for me. The trade you speak of is nowhere near an even one. Meds are easy to manage. Same with medical/wellness appointments and tests. I don’t deal with IPF anymore because I don’t have it. I avoid sunburn and sushi. My skin bruises easily and I’ve had a few squamous skin cancers removed.

      • This reply was modified 2 months, 2 weeks ago by Christie Patient. Reason: formatting visible
      • This reply was modified 2 months, 2 weeks ago by Christie Patient.
      • #31206

        Hi @holly

        I always appreciate hearing from you – thanks for your comment on this piece in particular, as I know you can speak to it from a personal experience! I often think about your experience as my baseline for moving ahead with transplant, and appreciate reading about it again here. I also love life and certainly want to live, even amid complications of post-transplant life. It’s easy though, as you know, to get bogged down in the emotions when every breath is challenging while living with IPF. Thanks for taking the time to write; I know others will certainly benefit from your experience too. Wishing you continued good health and amazing memories with your new lungs. I hear you got to visit Hawaii recently – so jealous, I hope to get back there this year!
        Much love,
        Char.

    • #31207
      Holly
      Participant

      Thank you, Charlene, for all you do. My post is a bit weird because my computer froze as I was writing, and I didn’t know my words had been submitted. I would have edited and certainly finished with more encouraging words. I admire you greatly. I could never have been as open and supportive of others as you are! Letting us see each others’ dark moments is part of our truth. Before signing off, I want to add that my memory of recent UCSF transplant statistics puts present life expectancy at 11+ years. I’m not certain of that figure because I don’t pay much attention to those numbers.  Anyway, I send my very best wishes to all of the forum participants. If I  were more tech-savvy, I would attach a photo of me twelve hours post-transplant,  sitting up, smiling, sending a double thumbs-up! Love and aloha to all– Holly

      • #31208

        That admiration is certainly reciprocated Holly! And no worries, we appreciate your post exactly as is. Thanks for the updated UCSF stats on transplant – I think that’s important for others to hear, as the data is outdated at 50% survival at 5 years (I think).
        Take good care,
        Char.

    • #31479
      Kris manian
      Participant

      I absolutely loved this discussion and thanks for all those feedback from transplant heroes.

      I am looking in to transplant for myself and this helped a lot.

      can any one tell the average wait time after qualification?

      thanks

      kris

      • #31480
        David Ota
        Participant

        Kris

        I had my Double Lung Transplant at Dignity Health/St Joe’s in Phoenix in 2016 and waited less than 4 days.  That call was certainly a surprise.  Their current published wait time is 15 days.

        https://www.dignityhealth.org/arizona/locations/stjosephs/services/lung-disease-thoracic-disorders/programs/lung-transplantation

        At the time, I recall there were several variables that GREATLY affected wait times.  Physical size of the lungs you needed was one that I did not consider.  There a small woman from California staying in our condo complex.  She had been waiting months for the correct size and type of lungs.  The ‘type’ was antibodies I think.

        I am 5′ 10″ tall ~160lbs, fairly typical, so sizing was not am issue with my transplant.

         

         

         

         

        • #31550
          Kris manian
          Participant

          Hi David, thanks for that information.I am also of your size, height and weight.

          I have another question for the transplant. How long is the average stay in hospital post operation. I know it varies based on several conditions.
          thanks

          kris

        • #31563
          Christie Patient
          Moderator

          Hi Kris, I know this is addressed to David, but I hope you don’t mind that I keep butting in. Transplant recovery (as will all parts of this) can vary greatly between people. The average is 2-3 weeks in hospital. Depending on possible complications, and relative health it can be shorter or longer. Physical health/strength is the absolute most important factor to determine how quickly someone is discharged, so keep up your exercise and go in strong if you choose to follow this path.

          Possible complications can range from other organs responding poorly to all of the medications (kidneys, liver), a surgical injury like nerve damage, gastroparesis, blood clots (can lead to stroke), pain (should go without saying, but sometimes requires more intervention than normal), aFIB, medication allergies/poor reaction to new meds… to name a few. There are many interventions that can be taken to help someone heal who has an initial poor outcome to the transplant–such as ECMO, tracheostomy, NG tube, etc… the list is long and I obviously don’t know everything, but your doctors will. I can say that with confidence having been through this at UCSF too. I trust them beyond all reason because they are absolutely top notch geniuses.. Can’t speak highly enough.

          In hospital, you will receive daily physical and occupational therapy to help you get back on your feet, as well as all of the post-op care that you need. People come out of surgery intubated, but usually, that is removed within the first day, and supplemental oxygen is used only as needed. Most people wake up being able to breathe room air 🙂 It’s absolutely magical to witness. You and your caregiver will receive some training before and after the transplant on how to keep up the care once you go home. We had a PT/OT come to the house two or three times a week for the first month my mom was out, but we did daily PT and short walks together. She did have to be readmitted two weeks after she was released due to an infection, but it all worked out in the end.

        • #31565
          Kris manian
          Participant

          Hi Christie,

          I absolutely love the wealth of knowledge you have on this subject and I am glad that you share it. It really helps prepare for the transplant procedure.

          Again thanks a million?

          kris

      • #31535
        Christie Patient
        Moderator

        Hi Kris, there are so many variables that affect wait time. Of course, lungs must come from a deceased donor, so there has to be a registered donor who passes away meeting certain criteria in order for them to qualify. In addition, blood typing, antibody matching, and lung size must match. It’s way more complicated than that, but those are some examples. A 5-foot tall person can’t fit lungs that were in someone who was 6 feet tall, for example, and vice versa. Genetic heritage also factors in, so for example, someone of Asian descent is more likely to get a transplant sooner in the bay area than if they were trying to get a transplant in, say, the south or northeast US.

        Your overall health status is analyzed and updated regularly once you are on the list. This encompasses all of the PFTs, CTs, scans, 6-minute walk tests, vital signs history, cancer screenings, psychological workup, disease history, medical compliance history, etc. You get a lung allocation score (LAS) that determines where you sit on the list, and the rankings change daily. The score is out of 100, and all of the data collected in your workup factors in.

        For example, my mom was in the ICU receiving oxygen via tracheostomy when she got on the list. When she was admitted to the ICU she was too sick to qualify (several months earlier she was too healthy.. it was a very quick change in her case, and thankfully she recovered enough to tick all the boxes). Since she was in the ICU, her score was higher. Dependant on a ventilator? Higher score. If she had required ECMO? It would have been even higher. If she had been able to come off of the ventilator and use oxygen via a nasal canula, or if she had been well enough to be discharged, her score would have gone down–and so on. So, considering all of that, her score was 88 when she was listed, which was near “the top” of the list. She was told that she would be in the ICU until she got a transplant, or passed away. Doctors prepared us for the possibility of a transplant within 24 hours of her being listed, but despite her desperate need, it took two whole months before a donor was the right match for her. Each story is so different it’s hard to give an “average” wait time.

    • #31500
      Dennis Rowe
      Participant

      Holly and I were within a week of each other for our transplants at UCSF.

      I experienced several exacerbations both at home and in the hospital.  Thanks to my pulmonologist’s communication with UCSF, I was transferred to San Francisco to await a double lung transplant.  After being there for about a month I was fortunate to receive my transplant.  Recovery wasn’t easy.  I was on EKMO for a couple of weeks, but all in all, I’m very happy I received a transplant!

      Covid protocols have certainly made post transplant harder to deal with, but given the alternative, I certainly would do it all again!

      By the way, I really feel that post transplant is harder on your care giver(s) than the transplant recipient!

      Choose a chance to live over certain death!!

    • #31539
      Kris manian
      Participant

      Thanks Christie for that detailed information. Very useful to understand the process. Thanks Dennis for your reassuring message.

      kris

    • #31548
      Dave
      Participant

      I was diagnosed with Idiopathic Pulmonary Fibrosis disease in August 2021. I had been dealing with shortness of breath and it was progressively getting worse. My original pulmonologist had a wait and see approach. I got a second opinion and immediately I was advised to get on the National Lung transplant list. I started with the testing in January 2022, was approved and placed on the list on February 22, 2022. On March 1, 2022 received the call that a lung was available. The Thoracic surgeon following the single left lung transplant said that the lung removed was stiff and had progressed much faster than what was anticipated. I am 70 years old and had the single left lung transplant at the Temple Lung Transplant Center in Philadelphia Pa because they do transplants in older indiduals. I was also on OFEV, started 3 months prior to transplant with few side effects. I am so glad I opted to receive a single left lung transplant. I am 1 month post transplant today and need no oxygen, can do steps, and so far anti rejection meds are on track. I would do it again in a heartbeat. Just my experience! God is Good!

      • #31553
        Kris manian
        Participant

        Hi Dave awesome indeed. God bless you with a long and good life?

         

      • #31562
        Christie Patient
        Moderator

        Wow, what a whirlwind experience you had! I’m glad you got a second opinion when you did and were in the right place at the right time to receive a successful lung transplant. Thanks for sharing your story, Dave.

        And for anyone new to this who’s reading: one healthy lung can do just as much good as two, and it is less invasive. Of course, it’s a case-to-case basis on need, and your doctors will be able to decide the best course based on your progression and what’s available if it becomes urgent.

        There are several people in the forums who’ve had a single lung transplant who are thriving. 🙂 An archived column by Emma Schmitz is about her mother’s single lung tx if you’d like to read more on this.

    • #31551
      Kris manian
      Participant

      Thanks Dave for sharing the valuable info. How long was your post operation stay in hospital?

      God bless?

      kris

      • #31574
        Dave
        Participant

        My total hospital stay including the day of surgery was 10 days. I was then discharged to Gift of Life House in Philadelphia for 2 weeks to be close to hospital if I experienced any issues. Home health nurse visited me there twice a week and PT and OT was ordered, but I didn’t need them as I was getting around quite well on my own. Today I am one month post transplant and just finished walking around the block with no problems. I will start Pulmonary Rehab once the rest of my Staples are removed.  I am, so far, doing very well. I pray it continues.

        • #31575
          Kris manian
          Participant

          Wow! God bless

          continue strong

          kris

    • #31567
      Phyllis Della-Latta
      Participant

      Another harsh reality of lung transplantation is susceptibility to infection by bacteria, viruses and difficult to treat fungi or non tuberculous mycobacteria. Infections can be a major cause of graft failure. Due to lifelong immunosuppression, transplant patients are prone to develop infections that are often innocuous to immune competent people. Having said this, there is no treatment or procedure that will cure pulmonary fibrosis. However, transplantation offers hope for many suffering from this dreadful disease.

    • #31570
      James
      Participant

      Mine is a strange story I guess.  I was diagnosed in mid 2017, and started getting sick, coughing, vomiting, chest pains…. running the gauntlet of things that could be thrown at me.  It turned out as was determined in late January 2018 that I was having heart attacks right at the time of the diagnosis.  I had a triple bypass and an aortic valve replacement.  It took the best part of 10 months before I felt normal.  Although my heart got better my lungs didn’t.  I was placed on Ofev and all the usual drugs to combat the side effects.

      One by one my ‘friends’ have fallen by the wayside. Sad, I haven’t changed. Strange how that happens.  No drop-byes, few phone calls if any . I just had my 64th birthday last sunday. Besides my children and wife…. crickets.

      I’m not demanding them to be around. My life is now way to short to worry about it.

      Things I placed in the front are now way on the back burner if even on the stove.

      So my wife, doctor and I talked of a transplant. I have talked to my family at great length of it as well.  Ultimately the decision will be mine.

      As selfish as this may seem, I have decided to opt out.  I have my reasons.

      The prognosis is a 50/50 deal although the odds are better now of initial survival then they were just a few years ago.  Single or bilateral transplant? Getting o a list, choosing the right hospital… surviving to the day of the transplant. Just reading the stories above gives me no great comfort.

      My doctor and I broke the numbers down.  I will almost be dead when and if I get a set of lungs.  Surgery time is like that of the heart surgery, about 7 hours or so assuming there are no complications during surgery. He told me that I should expect a solid 9-10 months of rehab just to get to where I can function an a normal level.  The next number, 3 to 4 years, is about when the body will start to attack the lungs.  To be clear, your body will start the process over again, destroying the alveolus as before. The cycle will be much faster the second time around. He was very clear that this procedure is glossed over and he wasn’t going to do that. Then the hunt begins for another set of lungs.  If I wanted to try again.

      I know most everyone wants to live a long and fruitful life, but if the quality is not there then all you are is s shell of what you were.  That is not for me. I suppose the question is have you lived your life to the fullest?  Do you think you will do anything noteworthy after a set of lungs gets installed? Are you square with God?  Your family?  You don’t have to worry about friends… do you now?

      Yes, this is a horrible disease that I would love to remove from my body, but as of yet, it will ravage through me.

      My choice is to opt out of the transplant.  Someone else can have the lungs that is younger then I and someone that may have young children, a growing family.  I have all that.  I am happy with who I am.

      James

       

       

       

       

       

       

       

       

       

       

      • This reply was modified 1 month, 2 weeks ago by James.
      • #31674
        Christie Patient
        Moderator

        Hi James, I want to be clear upfront that I understand your story, and respect your choice to not have a transplant. The way you feel is valid, and I do not seek to contradict your feelings. It is not the path for everyone and I am not trying to change your mind with my response here.

        However, some of the information you shared here is not accurate and it is my duty as a moderator to keep things as accurate as possible in the forums. People are making decisions about their own lives based off of the conversations we have here, and I don’t want anyone to be misled away from a course that may be right for them based off of inaccurate information.

        Firstly, the “50/50” statement your doctor provided is misleading. Many patients survive the first year after transplant without complications. Almost all of them, in fact. “The most recent International Society for Heart and Lung Transplantation Registry reports a 1 and 5-year survival of 85 and 59%, respectively, for adult lung transplant recipients transplanted since 2010.” [NIH citation 1]. And the medical science and technology only improve every year, so we can logically reason that transplants performed in the year 2022 will be more successful long-term than ever before… only time will tell, which of course means the data has yet to be shown. But, most recently, the national average in the US is 74.3% at three years, as of 2021, and some transplant centers boast much higher odds. UCSF, for example, has a three-year survival rate of 89.9%. [citation 2]

        And, in that ~59% that survive beyond 5 years, the most common cause of mortality is not in fact a recurrence of PF–that is EXCEPTIONALLY rare, actually–but other complications typically related to chronic immunosuppression. “Chronic lung allograft dysfunction (CLAD) a condition which develops in about 50% of recipients 5 year after lung transplantation, remains the major barrier for long-term survival, although development of solid organ cancer is nowadays also an increasing cause of late mortality.” [NIH citation 1]. And, “Early graft dysfunction and non-cytomegalovirus infections are the main causes of death during the first year after transplantation. Chronic lung allograft dysfunction (CLAD) is responsible for 30% of annual deaths after the first year. The development of malignant neoplasia becomes relevant after the first year of the transplantation, hitting approximately 10% of deaths.” [NIH citation 2] While CLAD can present with fibrosis, it is possible with good surveillance to catch it early and there are a number of treatments which can help prevent fibrosis caused by chronic rejection. In short, the body does not tend to attack and destroy the lungs in any kind of fast manner. Certainly not any faster than IPF does.

        Those with familial history of PF (shortened telomeres suggesting genetic mutation) are at a higher risk of developing other pulmonary pathologies after transplant, but even still, it is not usually a recurrence of PF. [NIH citation 2]. We must also keep in mind that people who get lung transplants due to PF/IPF are often up in years already. There are many causes of death unrelated to transplantation that occur in these populations just because they are in their geriatric years.

        Assuming all goes well with the–yes, quite long surgery–a full recovery is expected within 6-12 months, barring complications. No worse than say, a knee replacement. While living with chronic immunosuppression does present it’s own challenges, those who recover would hardly say that they are “a shell of what they were”, as you say. Among the many transplanted friends/contacts I have made in the past 3 years since my mom went through it, all are quite happy to still be here, and are living very full lives with few limitations (aside from COVID restrictions of course).

        I know that it’s not perfect for everyone. Some people don’t survive. Some survive with complications, or suffer poor quality of life due to comorbities of transplant. I also know that there are people here who have lost friends post-transplant. I am not seeking to invalidate any of those experiences either. Simply, I am trying to provide the most accurate information out there based on medical data for those who are considering a transplant for themself. All of that, in conjunction with the stories of our compatriots, the support of these communities, and the advice of our doctors will lead us to the path that’s right for each of us.

        Respectfully,
        Christie

    • #31584
      Laila
      Participant

      Hello Charleen and everyone
      Thank you all for this amazing conversation.
      When my respirologist mentioned the eventual possibility of a lung transplant I laughed and told her I was too old (at 66). Wrong answer obviously!
      So if and when the time comes that you need/want to add your name to a transplant list, are there particular hospitals or health centres with long-term track records and good reputations for success?
      Charleen, I’m in Canada too.
      Laila

    • #31594
      Kris manian
      Participant

      I am in the process of qualifying for transplant and getting tests after tests. I just got my angio and one of the arteries is clogged 70-80%. Was suggested to have stent. Will that disqualify me from getting a transplant?
      has any one had such experience?

       

      appreciate your feed back?

      • #31595
        Dave
        Participant

        Hi Kris: usually a heart catheterization of both left and right sides is a pre requirement for a lung transplant. Alot of times if a stent is required, that will be done during the catherization. I’m thinking once the stent is done, you could proceed with the transplant testing process. Just my opinion.

      • #31596
        ChArles Bietsch
        Participant

        If they suggested a stent it will likely not disqualify you.  If they do it before you will likely have to wait for approx six months as you will be on blood thinners.    Sometimes they take care of it during the Tx surgery depending upon age.

         

        at my evaluation I had two over 60%, did not have stents , still don’t and that was 4 1/2 years ago

         

        good luck on your evaluation

         

        blessings

         

        Chas

         

        • #31603
          Kris manian
          Participant

          Thanks Chas for your feedback.
          Can a stent patient be with out blood thinners and use alternate medication?

          thanks

          kris

      • #31598
        Christie Patient
        Moderator

        That should not disqualify you. I’ve seen it come up in conversation here before and the recipients had no problems with tx due to stents. Can’t remember who it was or I’d tag them, sorry.

        • #31604
          Kris manian
          Participant

          Thanks Christie. Good to hear that stent will not stop the tx.
          thanks

          kris

    • #31597
      Kris manian
      Participant

      Thanks Dave!

      They did not do the stent as part of catheterization as they wanted the referring cardiologist to opine on it and she was not available.

      I just wanted to confirm. Thanks

      kris

    • #31607
      Ernie Kully
      Participant

      Hi Charlene,

       

      It’s been a while.  I hope you doing as well as possible.  Given that I have had a recent exacerbation that brings me closer to having to make the decision, this is a timely topic for me.

      There are a couple of issues for me regarding a transplant.  As others have said, it is NOT a cure, it is, at best, a temporary respite (as so well described in James’ response above).  Having recently gotten divorced and moved to Florida, my support system is tenuous at best.  Yes, my mother is here, but she is 84, has her own IPF to deal with, and is in no position to help me during surgery/recovery in any meaningful way. My brother is also here, along with his wife, but they also have health concerns of their own.  I still have (at least for now) a very good group of friends down here, but there isn’t anyone who is able to devote the kind of time and attention I will need post-transplant.  This of course means I will need to hire someone, which is certainly not conducive to my stretching my retirement savings. So there’s that.

      Then there is the usual mix of limited successes, long rehabilitation, and shortness of time before preparing for the next transplant (if that is even a possibility).  All in all, not a rosy picture.

      But, I am still alive and kicking, still living my best life, and still taking advantage of what every day offers.  They will have to work harder than that to beat me!

       

      • #31641

        Hi @ernie-kully,

        So nice to hear from you! It feels like a lifetime ago we were able to connect at the PF Summit in Texas, doesn’t it? Thanks so much for writing!

        Sorry to hear you dealt with a recent exacerbation, that’s terrible. Do you know the cause, was it “just” disease progression or something viral? COVID has really changed my lungs since I came down with it earlier this year, it was terrible. I hope you’re starting to feel better!

        Yes, there are certainly a lot of considerations with transplant and I think we do ourselves a disservice to not weigh out both the (obvious) pros and cons. Sorry to hear of the divorce and move Ernie, that’s a lot to take in, especially without a large support network. I wonder if the hospital social worker might have some ways to help you consider all the options, despite these concerns? My transplant social worker has been amazing! The choice is so individualized though, so I hope whatever you decide is the best for you.

        So great to hear from you – thanks again for writing 🙂
        Char.

Viewing 27 reply threads
  • You must be logged in to reply to this topic.

©2022 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending

Log in with your credentials

or    

Forgot your details?

Create Account