My Many Concerns When Considering Lung Transplantation

My Many Concerns When Considering Lung Transplantation

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Talking about lung transplantation is frightening. It was scary when it was initially introduced following my diagnosis nearly three years ago, and it continues to be difficult to talk about. This is despite all that I’ve been through with my disease progression over the years. Recently, I talked with my physician about lung transplantation again and quickly became overwhelmed.

There are numerous considerations when planning lung transplantation, many of which are not obvious to those outside of the interstitial lung disease (ILD) community. Many view transplantation as a cure to pulmonary fibrosis or other ILDs, such as cystic fibrosis, and pulmonary hypertension. But new organs brings their own major problems. I know several patients in the ILD community who have had successful lung transplants, but I also know many who have struggled through their surgery and recovery only to have their immune system reject the lungs. Without full immersion in the world of organ transplantation, it is hard to comprehend the volume of considerations necessary for such a major surgery. I’m not entirely sure even I am aware of them all, but following are some of the things I’ve been thinking about:

Emotional considerations

The more literature I’ve read about organ transplantation, the more I’ve become aware of all the emotional implications of surviving a lung transplant. Survivor’s guilt can be very hard for some patients, as can the awareness that while you struggle to survive, you’re waiting for someone else to pass away. Also, patients who go through lung transplantation lose their independence completely at first, along with their sense of normalcy and security.

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While those feelings might be temporary during recovery, I would imagine it feels like having a rug pulled from beneath you. As someone who thrives with stability and familiarity, this would have huge emotional implications for me. To protect the new lungs, my center has temporarily strict rules about visitors to keep patients isolated from germs or viruses. Isolation from those I love most while healing would hit me brutally. Additionally, there is an intense and rigorous rehabilitation schedule that would be both physically painful and tiring, which can contribute to a patient’s emotions as well.

Physical considerations

Having my sternum broken for a previous surgery was one of the most painful things I’ve ever had to endure, and I’d need to do it again for lung transplantation. People don’t realize just how many muscles surround your chest cavity, and recovering from open-heart or sternal surgery affects your entire body because those muscles are sore and weak. There are also medication side effects post-operation, as doctors prescribe many new and harsh transplant-specific medications.

Social considerations

Social isolation can result from lung transplantation. I already feel a sense of social isolation due to pulmonary fibrosis. There really aren’t many people who can understand what my daily life is like with a life-threatening lung condition, and I’ve lost friends trying to explain. Some friends can’t handle the intensity of my disease and others don’t want to accept that I likely won’t live a long life. The scary reality and uncertainty of lung transplantation might be too much for some friends, and they could walk away. I suppose if I were to reframe this, though, there would be friends gained, thanks to the thriving transplant community. Those new friends would truly understand what I’ve been through, which is invaluable.

Financial considerations

Regardless of whether someone has insurance, lung transplantation is expensive. Many patients must relocate to a new city closer to their transplant center, then remain there after the transplant for a period of rehabilitation. Since these are usually large urban centers, the cost of living can be astronomical, especially for a patient and their caregivers who aren’t working due to the attention the patient needs. There are also major medication expenses, costs of travel to and from appointments, necessary rehabilitation equipment, and many other purchases. I often wonder how people, especially young adults riddled with post-secondary education debt, can afford this life-saving procedure.

These are just a few of the major questions to mull over about lung transplantation, and I am certain there are many others that I missed. If you’ve been through a lung transplant, what were some of the most difficult struggles for you?

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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.

Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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Thanks for stopping by my column! My name is Charlene Marshall and I was diagnosed officially with Idiopathic Pulmonary Fibrosis (IPF) on April 7 2016 after 13 months of various tests, hospitalizations and misdiagnoses, such as bronchitis and asthma. Due to my age, the specialist disclosed that he was unsure how the IPF would manifest itself in terms of progression, and whether it would be fast or slow and what the course of my illness might look like. Not much has changed since then, meaning there is still a lot that remains unknown, which is largely due to my age and how “rare” it is for someone under 30 to receive a diagnosis of IPF. That being said, a lot has changed for me in the time since diagnosis and I am looking forward to sharing some of those changes with you through this online platform, and I invite you along for the ride! Throughout this column I intend to chronicle the experience of living with an invisible, yet fatal disease as a young adult and share some stories about how IPF has impacted every aspect of my life, both good and bad, thus far. I plan on highlighting the challenges (and where I can, the positives…) that come with living with IPF and the impact on social and intimate relationships, finances, family dynamics, facing mortality, infertility, travelling, medication side effects, career goals and so much more as it arises for me as a “new” patient. I hope others’ with similar experiences will reach out as no story trumps any other, nor should any go unheard. For now, let me leave you with some personal details about who I am, outside of my IPF diagnosis. I grew up in a small town in south-western Ontario and still live within Ontario, although in a much bigger city. My favorite sport is/was underwater hockey (yes, it is a thing: look it up on YouTube), I love working with people, I work full-time in the Social Work/Social Services field, I am an avid learner filled with heaps of curiosity for the world, which lead me to start my Masters Degree in 2014. I am in the last few months of my Masters Degree and am looking forward to an upcoming trip to Australia more than I’ve looked forward to anything before. Welcome to the shambles and chaos that is my life!
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38 comments

  1. Elizabeth M. Jones says:

    My husband had IPF and he passed away on January 9th – the diagnosis was 3-5 years and he had about 5 years. I hated seeing his struggle to breathe – it was so difficult on him. But, I am grateful for the doctors and VA Hospital for providing the support and equipment he needed for those years. I sorely miss him!

    • Charlene Marshall says:

      Hi Elizabeth,

      Thank you for reading my columns and getting in touch via the comments, although I am so sorry to hear of your husband’s recent passing. This is such a cruel disease, isn’t it? My deepest condolences to you and your family. I am really glad you’re happy with the care he received, and may your memories of him be plentiful for many more years to come. Sending you love and prayers.
      Charlene.

  2. Sara says:

    My father was diagnosed with IPF spring of 2015 and progressed to needing a lung transplant by summer of 2016. He received his gift of life of July 7, 2016. For our family, the financial concerns were huge. Unbeknownst to us, his insurance did not cover organ procurement for the hospital he was originally working with. We were facing a $150,000 brick wall. We had faith that God would pull us through so we started fundraising. As faith would have it, his doctors were concerned about his progression and the ability of the hospital to get him what he needed. He was transferred to Stanford, everything covered by insurance and got his lungs. What an emotional roller coaster for our family. Next came his anxiety. His anxiety about using his lungs was something he never really got over. In the beginning he struggled learning to trust his lungs. He had a good 6 months after recovery but was faced with a handful of hospitalizations over the next year and a half from pneumonia and RSV. In November he was hospitalized for the last time and we said goodbye. Even through all the struggles and pain I know he would have done it all over again to be with his wife, children and grandchildren. His story over the last two years has changed lives and his legacy will continue to do the same.

    • Charlene Marshall says:

      Hi Sara,

      Thank you so much for reading my columns and for getting in touch via the comments. Sorry to hear of that incredibly large bill from the original hospital for the organ procurement. I had no idea that was an expense incurred by a recipients family! Wow. Is that standard in most centers? I have heard wonderful things about Stanford, I am glad his care was good there but can only imagine the level of anxiety that comes with learning to use new lungs. So sorry he endured this, he sounds like such a brave man and an inspiration to many. Thanks for sharing a bit of your story with me Sara, I really appreciate it.

      Charlene.

  3. Nancy says:

    The daughter of a very good friend of mine is struggling with IPF. They have started the transplant ‘journey’ by establishing a team etc…but she is trying to live her life business as usual in the meantime. My friend’s daughter is in her 20’s. It’s difficult for my friend to see her daughter struggle as much as she does, and yet, as you stated, a transplant brings with it a whole new set of challenges. I just want to support my friend and give her whatever she needs during this trying time. What does a person in this situation need most as far as support goes?

    • Charlene Marshall says:

      Hi Nancy,

      Thanks so much for reading my columns and for getting in touch via the comments. How sweet of you to want to support your friend, they’re very lucky to have you as I know the support circles are important not only for patients but their caregivers as well. Sorry to hear your friends daughter is only in her 20s – unfortunately that is within the age range of my diagnosis, so I remember well how tough it was! I’m not sure what a person in their situation needs most actually, as each person is a bit different I guess. Could you ask your friend outright what it is that would be most helpful? taking the position of wanting to help, but wanting to be intentional about what it is they need at this time? Thinking of you and your friends, hoping she gets her lungs soon and that all goes well. Sending you prayers!

      Charlene.

  4. Meirion Jones says:

    I have recently received a diagnosis of IPF, and both myself and my wife are really struggling to come to terms with the reality of it all, at the moment I am still working but sooner or later I will no longer be able to do so, our lives have already been changed in ways we never envisaged, our dream of a long life together and our plans for our future in tatters, awaiting our next specialist appointment to see what other bombshell she can deliver as on my last visit which was supposed to be to discuss my high blood pressure medications, half way through she says you have this and its incurable your best chance is a lung transplant, we, being the medical team, will discuss your findings and see you in about 2 months, no explanation no help offered and no counselling, ok if you go to the nurse now for some blood samples to be taken. Blood sample taken I asked her where do I go now? We’ve finished now so you can go home, didn’t know what to do where to go which way is home thank God for the sat nav so shell shocked I didn’t know where to turn. Really looking forward to that next appointment at the end of February.

    • Charlene Marshall says:

      Hi Meirion,

      Thank you so much for reading my columns and for reaching out via the comments. Hearing how the doctor diagnosed you and told you about your illness breaks my heart and infuriates me at the same time. Where is the sensitivity, support and compassion that physicians are supposed to have? I am so sorry this was your experience! I remember the time of diagnosis well and it is a very sad, scary and confusing time with the support of your physician, let alone to be without it. I am also still working but it is getting tough unfortunately, thankfully I have some professional support in place to navigate all the changes occurring in my life as a 31 year old. You should have access to this too if you feel as though it would be helpful. When is your next appointment in February? I hope it goes well and gives you some answers to your unanswered questions and thoughts, that must feel terrible!

      If you haven’t already, the PF forums (found here: https://pulmonaryfibrosisnews.com/forums/) are a wonderful place to connect with people who truly “get it” when it comes to living with IPF. Everyone is so warm, welcoming and supportive. Please join us if we can provide any comfort to you in the meantime. Thinking of you!

      Charlene.

    • Diane Skinner says:

      My wonderful husband passed away on Feb 1st after having a single left lung transplant in July 2017 i still cant believe i will never see him again Ipf is a terrible disease

      • Charlene Marshall says:

        Hi Diane,

        Thanks for writing to us, although I am so sorry to hear about your husband. This disease is terribly cruel, and seems to show no mercy for anyone! It is so unfair that your husband had a successful lung transplant and still passed as a result of this disease. Sending you my prayers and deepest condolences for your loss. I hope you’re taking good care of yourself during this tough time. Hugs!
        Charlene.

    • Charlene Marshall says:

      Hola Yoyi,

      ¿Su médico de cabecera habla español? Trate de encontrar un médico que lo haga para que pueda entender la información lo mejor posible. ¿Puede su médico referirlo a un profesional de IPF que hable español?

  5. Tony Gargano says:

    Dear Charlene:

    I too am suffering from an aggressive lung disease. The thought of a lung transplant is daunting to be sure. However, if the time came and my only option was a transplant, I’d say sign me up. Though I am a social person, my PF has substantially curtailed my life… and I have adapted. Right now though, I sorely miss my long walks with my dog. Those outings provided me with the time to shut off the noise of my daily life and center on other Godly wonders that nourished my soul. I miss being able to travel with my spouse that offer wonderful memories. I miss being OF and a PART of the world. If I had the lung capacity, I’d look forward to strengthening my body every day. I would want to become an aspirational supporter for others in our shoes. As for cost, you you don’t have your health, you have nothing. Your student loans are the least of your concerns. Carpe diem.

    • Charlene Marshall says:

      Hi Tony,

      Thanks so much for getting in touch and connecting with me via the comments. So sorry that it is IPF that brings us all together, but grateful for the opportunity to speak with others going through the same illness. I completely agree with you about the grief around not walking your dog – it was such a comforting, silent time for me with my dog as well and an opportunity to clear my head. I can still do this sometimes, but unfortunately not very often anymore. I am still trying to do all I can, and by the sounds of it, you are as well and I suppose that is the best we can do right? Thanks for the reminder about our health being top priority, you’re right! Will you be a candidate for transplantation someday Tony? Thinking of you and thanks for your reply.

      Charlene.

    • Diane says:

      Hi Tony,
      I miss the same things too! It’s hard letting go of so many things that feed our soul and learn to live with a new normal. I straddle the line between grief and acceptance when I think about my situation. It definitely helps to have the support of others, especially those who understand us. I appreciate Charlene’s posts, as they give guidance and comfort.

      • Charlene Marshall says:

        Hello Diane,

        Thank you so much for reading my columns and getting in touch via the comments. It is always so nice to hear from others, although I sure wish it wasn’t this cruel disease that brings us all together. It is tough to learn how to navigate our new normal, isn’t it? Please know we’re all here and the PF forums community, is a group of wonderful people who truly “get it”. I couldn’t agree more about how much it helps to have people around who understand us. Hang in there, and feel free to write anytime. Thank you for your kind words as well.

        Warmest regards,
        Charlene.

  6. Rich Kenzie says:

    I contracted PF after struggling with Hypersensitive Pneumonatosis for 5 years. It got to the point I was on 15 L of O2. I had 6 months to live without transplant. I was 55 and not about to give up! I was transplanted on May 7,2018 with two new beautiful pink “air bags” as I affectionately call them! I definitely had survivor guilt but have come to terms with it. As far as socially I have totally embraced it and tell everyone. I tell people to encourage them to be a donor and also to face life’s struggles.
    I have my own FB page and website and share my story through motivational speaking. One thing people don’t understand is that you trade one disease for another. I’m hyper vigilant about wearing a mask in public and using gallons of hand sanitizer. Not to mention all the meds. Some people say I am an inspiration which I very humbly embrace because I want to inspire people. Some people call me a hero. That’s where I correct them. I’m not a hero, my donor is the Hero with a capital H. I’m a survivor. It’s human nature to survive and without my new lungs I likely would not be typing this right now. Feel free to PM me if you have any questions. I’m here for you or anyone facing transplant surgery. God bless!!

    • Charlene Marshall says:

      Hi Rich,

      Thank you so much for reading my columns and getting in touch via the comments. I love hearing about others’ experience with this cruel disease, especially when it is a successful transplant story such as yours. Congratulations on your new “air bags”! I like the way you approach your life with your new gift, telling everyone and encouraging others to be a donor. I think this is the way to go, what an inspiration! Thank you so much for sharing again Rich, I’ll definitely check out your website and page, means a lot to me that you’d share it with the goal of helping me facing these next, and very big, step in my IPF journey. Thanks again!

      Warmly,
      Charlene.

  7. Tim van Someren says:

    Hi Charlene
    I’m currently on the waiting list for a lung transplant in the UK. My PF has reduced my lung function to the point where I’m only able to walk 5 or 6 steps before getting breathless and I’m on oxygen 24/7. My doctors agree I have perhaps less then 6 months of lung life left, so a transplant will be a life saver.
    I’m in my 40s and have a wife and 2 children and I’m not ready to go just yet! Plus, having such physical restrictions on my life is taking its toll and I just want to be able to walk around like a normal person.
    I’m pretty scared of the operation and the recovery, and I know I may struggle afterwards and perhaps not even live that much longer, but at least there is some hope.
    Right now, I’m also scared of my lungs failing, or catching an infection and literally suffocating as my breathing is so poor.
    So really the transplant is something to grab on to, some kind of hope when things are looking a bit grim.
    I’ve been waiting 8 months, and its possible I won’t get a lung in time, but I’m ready for that call.

    • Charlene Marshall says:

      Hi Tim,

      Wow, thank you so much for getting in touch with me and sharing a bit about your story! So sorry to hear that your PF has been so aggressive to your ability to breathe and lung function, but am also so glad you’re currently on the waiting list for a transplant. I don’t know much about the UK and their waittimes, is it likely an ideal pair of lungs will come for you in the next 6 months? I certainly pray that it will, for you and for your wife and kids too. There are lots of success stories post-lung transplant, focus on those and hold onto the hope!!! Sending you prayers that a great new pair of lungs come for you soon. If you can/think about it post-surgery, please report back on how you’re doing. I’d love to hear from you! Hang in there Tim and feel free to write anytime!

      Warm regards,
      Charlene.

    • Vicki jager says:

      My husband had bilateral lung transplant 2 years ago at Cleveland Clinic He’s Doing good breathing wonderful Just wanted to let you know his sternum wasn’t broken He has 2 small incisions under his breast about 5 inches long Hardley see them now

  8. PAUL J DUKOR says:

    Dear Charlene and Forum,

    To recap: Am a bilateral lung transplant at Tampa General 4/28/2015. Some comments on Charlene’s excellent post.

    Emotional: Survivors Guilt was not a factor until I connected with my Donor Family which took 2 years. Their sadness became my sadness especially each 4/26 came around when my Donor (Tiffany) died. They were happy to have connected with my family, unfortunately out of 6 donated organs, I was the only persistent one to connect. We both have large families, and follow on Facebook, texts, personal calls. What a blessing it has been. Last April 26th, in talking with Tiffany’s mother I expressed my deep sadness. She replied there was no reason because I warmed her heart more than any grave stone could. Our meeting was covered by the Tallahassee Democrat https://www.tallahassee.com/story/news/2017/06/26/tlh-nws-lung-donor/393539001/

    Physical Considerations:

    I can agree with all. Adding that lungs can be transplanted through the back (angels wings) without involving the sternum. However, that depends on the individual and surgeon preference. I got the standard clamshell with the sternum plate, which by the way split cleanly in half requiring another surgery to fix it. Not fun.

    Social Considerations:

    Although you will likely lose “friends” due to the care and dramatic change in lifestyle needed to stay safe, I found my true friends that stuck with us during and after recovery. Get over it, losing some friends and being able to breath room air again is a good exchange.

    Financial Considerations: During my evaluation we had to meet with a finance person there who determined whether or not we would be able to afford a transplant. If we did not qualify, we could not get on the list, period. It is very helpful to get resources from your transplant hospital pharmacy. They know about special programs for meds that are otherwise unaffordable.

    Thanks for letting me comment

    • Charlene Marshall says:

      Hi Paul,

      Thank you so much for reading my column and for sharing your thoughts on this, so thoroughly and with much grace. I can’t wait to see the coverage of your story on the link you provided, I’m going to watch it after replying to you! I’m glad Tiffany’s Mom could comfort you and encourage you not to be sad or feel guilty for surviving and receiving her lungs. What a gift to you, and what a gift you are to Tiffany’s Mom and the ability to keep part of her alive! Wow, I didn’t have any idea about the transplantation being done through the back. That would likely be equally as sore, but I’d be interested in hearing more about it. Sorry you needed a second surgery to repair the plate. What a journey you’ve had!

      Thank you so much for sharing and contributing your personal experience with the considerations I’ve written about in my column. Your reply was very helpful Paul. Wishing you nothing but the best and thanks again for writing.

      Charlene.

  9. Vicki jager says:

    My husband had bilateral lung transplant two years ago he has two small scars under each breast each one is about 5 inches his sternum and several broken and his lungs are working fabulously after being on oxygen per 15 years with COPD it was done at Cleveland clinic no regrets

    • Charlene Marshall says:

      Hi Vicki,

      Thanks so much for your reply and for letting me know a bit about your husband’s transplant story. Wow! I’ve never heard of a transplant being done without breaking your sternum, that is really encouraging. I would imagine that made his recovery significantly easier (albeit not easy I am sure) then dealing with the pain of a broken sternum. That’s so great! I am glad he is doing so well, I will keep him in my prayers that he continues to thrive with his new gift. I’ve heard Cleveland Clinic is amazing as well. Wonderful news all around!

      Charlene.

  10. Ron Reid says:

    Hi Charlene:
    I was diagnosed with IPF two years ago in Orillia, Ontario; now on oxygen for exertion only, and still able to travel, though getting medical insurance is a hassle. After long discussions with my wife and GP, I have decided not to pursue a lung transplant, even though the specialists at the Toronto General Lung Clinic wanted to sign me up. My reasons are complex. I turn 70 this year, and have had a full and rewarding life. A big consideration for me is that there are never enough lungs to meet the need, so I would much rather see a younger person get those lungs. We have made a deliberate decision to focus on getting as much out of life as we can, while accepting that my diagnosis means that my time will be shorter and more limited than we hoped. I would rather focus on coming to terms with my death, as a natural part of the cycle of life, than pin my hopes on the lengthy and uncertain prospect of a transplant. If I were to spend the next 2-3 years waiting and hoping for a transplant, and it doesn’t come through, what then? Do I die disappointed and bitter?

    An IPF diagnosis makes us all face up to our impending end of life. It has made me realize how much the medical establishment is centered around postponing that end point, no matter the costs, financial and otherwise. In itself, that is a form of denial. There are a few bright spots – the emergence of hospice care and medically-assisted death – but each of us should be taking more of a role in thinking through what is right for ourselves. For me, that is to let go as naturally as possible. I have already built my own coffin, while I still can, and we are making arrangements for a green burial. Certainly that is not the route for everyone, but it is my choice and that makes me happy.

    I get much out of reading your Forum, and hope that my “contrarian” views on transplant and death may spark some thoughts for other readers.

    • Charlene Marshall says:

      Hi Ron,

      Thanks so much for getting in touch with me and sharing your thoughts on this topic. It is one of special interest to me, and hello to a fellow Canadian! I hope you’re keeping warm amidst this deep freeze. Can you believe some of the temperatures first thing in the mornings? I am glad you’re still able to do some of the things you love Ron, that is excellent and I admire the thought and authenticity that went into your decision not to pursue a lung transplant. I can’t imagine that was easy, but everyone does need to make their own decision about such a hefty surgery. Being a candidate for lung transplantation at 31 makes me admire your decision just that much more and I have to thank you for thinking of us when it comes to the organ shortage. You are so kind and thoughtful, although I hope your decision not to purse transplant was based on your being at peace with your life as opposed to the organ shortage.

      You make a good point about denial and the medical establishment being focused on preserving life, as opposed to accepting it as part of the lifecycle. So glad you are doing what you need to for you Ron as this disease process unfolds. Please update us from time to time on how you’re doing as I’ll be thinking of you. Indeed, you’ve given me some things to think about … thank you for that.

      Regards,
      Charlene.

  11. Rebecca Ann Weatherly says:

    My husband who is 66 had a double lung transplant on April 5, 2017. His IPF that he had for over 10 years took a rapid exacerbation and decline in 2016.
    He did not want to die and together we chose for him to get the evaluation done to determine if he would be considered a good candidate. In the 2nd week of testing, he had another exacerbation and they admitted him, finishing up what was left, and listed him. Three days later, while waiting as an inpatient, he went into respiratory failure. He was put on the ventilator. And 2 days later, he received the gift.
    He has never regretted it, nor do I.
    Yes, we made some life changes and sacrifices to live in Phoenix. We could return to Las Vegas and just come back for appointments it we choose not to. He is doing well and we follow the “rules” to the letter. I am a nurse which has some advantages as well as disadvantages. He is alive as of now for an additional 21 months. That’s 2 more Christmases, grandchildren years, memories being made, etc.
    I have tried to encourage/guide, support all those that I can about the whole process as I believe that God has allowed us to be a vessel.
    If you would like any more information, please email me at [email protected]

    • Charlene Marshall says:

      Hi Rebecca,

      Thanks so much for reading my column and for getting in touch to share a bit about your husband’s journey with IPF and lung transplantation. I am so glad it worked out so well for him, and that neither of you have regrets in your decision to pursue transplant. Were his exacerbations caused by anything in particular Rebecca? I had one in May 2017 and it terrified me, and I remain very scared that it could happen again so I am always curious to know what triggers/causes might be. So glad you’ve gotten 21 more months worth of memories with your family. Here is to many more! Thank you again for writing.

      Warm regards,
      Charlene.

  12. Mark Delorme says:

    Charlene,
    I was diagnosed with IPF in 2009; as a backcountry skier and road biker I thought this disease will never overtake me. In 2015 it did, by late 2016 I was on supplemental O2 24/7 and was listed for transplant in Feb 2017. I was blessed with a donor on July 13th of 2017 and received 2 new lungs. by working my butt of and being a proactive self-advocate I have returned to 90% of what I did prior to transplant.
    I was fortunate not to have survivors guilt and my donors mom and I communicate on a regular basis. Early in the process she said to me ” do not ever feel survivor’s guilt, I was not going to be able to keep my son; through his death he saved 5 lives”.
    I have found almost all donor families feel the same.
    Physically I feel great. Yes there are days when ribs and muscles hurt but I am alive and would not trade the pain as it reminds me of how incredibly fortunate I have been.
    To address your other concerns I will agree they are overwhelming indeed. I am 66, so my outlook was and is a bit different than yours as you are so much younger. I talk to IPF patients regularly and the common thread at first is how did I get this disease which is, the majority of the time a question that has no answer. I can tell you how I personally handled it if it might help you; the first thing I did was to study and learn everything that was happening to me and what was going to happen. I was not concerned about life after transplant other than one thing….I wanted to live. I wanted to breath. I wanted to spend as many extra days with my wife, who is my hero, as I could. I wanted to ski with my kids longer and watch my grandsons and maybe granddaughter grow up. I have now lived 565 days longer than I would have without transplant!
    The next and to me the most important thing I did was to tear off my rear view mirror. What I lost I grieved and let it go. I focused completely on what I was going to need to do to go forward, to march into transplant and give it 200%. I put oxygen concentrators everywhere and took in as much oxygen as I could ( you see if you try to tough it out and think I am not going to give in you cheat every other system and organ in your body of the most important thing they need….oxygen). I worked out to stay as strong as I could knowing that the better fit going in the better the outcome.
    I could go on for hours, but I hoped this helps you on your journey and I wish you nothing but success.

    • Charlene Marshall says:

      Hi Mark,

      Thank you so much for reading my columns and reaching out via the comments. Congratulations on your lung transplant, and it sounds like all your perseverance and hard work paid off in terms of getting you almost back to your old self. I love hearing about this when it happens for others! I am so glad to hear of your donor family’s response, how powerful it must have been to have heard that from them. Gives me goosebumps! What is the pain in your ribs and muscles from Mark, just the nerve damage following any surgery?

      I so appreciate hearing from you, especially the part about giving it 200% as you move forward into transplant. I am in the midst of deciding whether or not I want to work while I wait, and I am thinking I don’t – even though there will be huge financial implications to this. However, working and germ exposure, exhaustion, etc don’t give me the best mindset and physical peace/rest that I need going into transplant. Your writing just made this a bit easier for me Mark, thank you. I wish you all the best as you continue your post-transplant life and I am so happy for you. Thanks for writing me!

      Charlene.

  13. Victoria R says:

    While my husband won’t fully explain his reasoning for not wanting a transplant, for all the reasons you describe and more it’s not in his personality to want to have his life medicalized. He has not “given up”, but is content to live the life he has within the new bounds this disease puts on him. His mother passed from it an he has no illusions where it ends. He has out lived the one year expectancy docs gave him. He lives in his desired beautiful rural location, doesn’t jump each the phone ring ( is it “the call”), feels the costs of pay-as-you-go oxygen are reasonable compared to medicalized existence paid for by fellow insurance payers ($1.2 million transplant, $30,000/year anti-rejection drugs (for the same reason he rejects the $90,000 OFEV and Esbriet because someone has to pay for it and he don’t think that cost should be passed onto other insurance payers or tax payers ( for gov. assistanced insurance or the tax breaks given to the “generous” donors to that grant making drug-assistance nonprofits).

    • Charlene Marshall says:

      Hi Victoria,

      Thanks so much for reading my column and for getting in touch via the comments. This is a tough topic to discuss, and I always appreciate hearing from others on where they stand about lung transplantation. It is hard to accept a life that is medicalized, I agree, and until someone is fully immersed in this, it is hard to understand why someone wouldn’t simply accept the “gift of life”, isn’t it? Thanks for sharing your thoughts on the topic, and what your husband thinks of transplant. I applaud him for being so thoughtful in his decision making and wish him nothing but the best.

      Warm regards,
      Charlene.

  14. Veronica Helden says:

    I have been so touched by the comments I was able to read. So much love. My sincerest sympathies for the losses, and my prayers for strength for those going through this horrible mess. I have fibrosis, pulmonary hypertension, and pulmonary Sarcoidosis. I am estranged from my family. They just haven’t been able to comprehend my whirlwind journey of autoimmune diseases. Because of that, I just could never see myself being in line for an organ that a family is praying so hard that someone they love receives. I wish I had that… But it’s my reality.

  15. Diane says:

    Hi Tony,
    I miss the same things too! It’s hard letting go of so many things that feed our soul and learn to live with a new normal. I straddle the line between grief and acceptance when I think about my situation. It definitely helps to have the support of others, especially those who understand us. I appreciate Charlene’s posts, as they give guidance and comfort.

  16. Elizabeth says:

    Hi,
    My dad was diagnosed with IPF this year 2019 and he has been put on oxygen 24/7. The doctor tells him he is needing to get a lung transplant he has been searching for places but he and his wife are unsure of the proper insurance they are going to need to get onto the waiting list. We live in Kansas so the closest place is in Oklahoma. What should I suggest to them?

    • Charlene Marshall says:

      Hi Elizabeth,

      Thanks for reading my columns and reaching out via the comments, although sorry to hear of your Dad’s recent IPF diagnosis. From what I understand Oklahoma has a good program, and the doctor saying he needs a transplant should be making a referral to the closest transplant center or the one of your/your Dad’s preference. From there, the lung transplant program will help you with all of your questions including those about insurance. I am in Canada so the process of medical care and insurance greatly differs, but they have healthcare team members able to help you navigate these things once your Dad begins the process of seeking a lung transplant. You can check out this link for the transplant centers in the US, and either decide to go closest to the one at home or have your doctor refer you to one of these locations: https://www.srtr.org/ They will be able to help you from there!

      Take care,
      Charlene.

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