‘I Just Want New Lungs’: I Promise to Do Everything Right

‘I Just Want New Lungs’: I Promise to Do Everything Right
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The news of organ transplants being paused at several medical centers around the world amid the COVID-19 pandemic is deeply troubling. As a patient living with idiopathic pulmonary fibrosis (IPF), I’m concerned, because ultimately, a lung transplant will be the only thing to save my life.

I also am anxious and unsettled about the many patients I know and love who are awaiting their own gift of life. I can’t help but wonder what might happen to those of us who are declining in lung function and overall health if this pandemic continues for many months. The mere thought is overwhelming.

Since my own diagnosis of IPF nearly four years ago, I’ve had many conversations with others about how I will be “cured” of this disease. Most of those conversations lead to educating others about lung transplantation and the importance of organ donation.

What I continually hear is that people think transplant is a cure; that my life will no longer be an uphill battle of finding balance between normal life and medical care. Unfortunately, this isn’t the case, because lung transplantation comes with its own unique set of challenges.

While the journey of waiting for lungs may be tough physically and emotionally, I am not naive to the difficulties that lie ahead after surgery. However, those struggles would be a new challenge that I would welcome with open arms.

I desperately want to be able to breathe freely and not rely on supplemental oxygen or deal with the pain, exhaustion, and shortness of breath that this cruel disease causes. I know my fellow patients can relate to the prolonged difficulties these symptoms cause physically, mentally, and emotionally.

My days are filled with frustration and sadness. Like many, I feel the deep anguish and grief caused by COVID-19. Additionally, I long for healthy lungs that function normally. Once I’ve been given that gift of life, I promise I’ll never take it for granted. In exchange for healthy lungs, I’ll do everything I am supposed to do to care for them.

Following is a list of things I am committed to doing after lung transplantation:

  • I will be compliant. Along with educating others about the process of lung transplantation, I also will explain the commitment involved in taking care of new lungs. It is critically important that post-transplant patients are compliant with their exercise regimen and taking anti-rejection medications. As a result of intricately knowing the struggles of having lungs that function poorly, I vow to do everything I can to keep the gift of life I receive as healthy as possible in my body. I will be compliant (likely over-compliant) to protect the gift I have been given.
  • I will never take this gift for granted. When I was newly diagnosed with IPF, I sought quotes to help me cope with the turmoil. One of my favorites, attributed to E.J. Lamprey, was: “You know all the things you’ve always wanted to do? You should go do them.” I plan to use this as my mantra post-transplant. I won’t waste any opportunities to travel and cross items off my bucket list.
  • I will advocate for the importance of organ donation. I already am a strong advocate for this cause. However, I know that statistics show there are not enough organs for everyone who needs them. So, we can always advocate and do better. There is a beautiful story about one of my personal heroes, Canadian hockey player Logan Boulet, who lost his life in a bus crash at 21. His parents started the “Logan Boulet Effect,” which helps to convince people to become organ donors. His story has caused a surge in the Canadian organ donor registry. Personal stories make a difference, and I plan to use mine to advocate for the importance of organ donation once I get through this.
  • I will help educate and mentor others. The Lung Transplant Foundation has a mentorship program for those who have endured transplant to assist those who are about to go through it. I believe this would be such a rewarding opportunity to help others, and I look forward to learning more about becoming a mentor post-transplant.

The struggle of living with IPF and compromised lungs continues, and difficulty breathing causes deep frustration these days. I just want new lungs, and once given that gift of life, I’ll do everything to protect them.

***

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.

Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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Charlene is a fiercely independent 30-something woman who can’t sit still. She loves coffee, wine tasting, playing with her dog, and spending time on the beach with her family. She’s a lover of all things travel, and never passes up an opportunity for a dip in the ocean! A proud Canadian, Charlene was diagnosed with idiopathic pulmonary fibrosis (IPF) in 2016 after 13 months of investigation into sudden shortness of breath, a chronic cough, and unusual fatigue. IPF has forced her to slow down, but she’s slowly learning the value of quality versus quantity in everything she does.
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8 comments

  1. Antoinette says:

    Wonderful story! True and poignant! I am much older than you (71). but I like you have been misdiagnosed, and then put on medication. Side effects not so good. I have the same struggles as you, physically, emotionally and I always feel very confused and I get very pensive and often withdraw into myself. But I try to always see the rainbow and things that want to live for.

    • Charlene Marshall says:

      Hi Antoinette,

      Thanks so much for reading my columns and reaching out via the comments. It is lovely to hear from you! While our ages may differ, it means a lot to connect with others who truly understand the IPF struggle. Isn’t it so frustrating to be misdiagnosed and then suffer terrible medication side effects? Kudos to you for always striving to see the rainbow; that is not always easy in our situation but very important. Thinking of you and wishing you nothing but the best. Feel free to write any time – I am here for you!
      Charlene.

  2. Charlene,
    I have no doubts at all that your day for new lungs will come. I just know it. And, you will come through it marvellously! I know it is frustrating to wait, and these days, it is difficult to feel positive about much of anything. Just– hang in there, girl! Know that we who read your column are with you. You are our inspiration.

    • Charlene Marshall says:

      Hi Holly,

      Thanks so much for reading my columns and reaching out – it is always so nice to hear from you, and your encouraging words truly brighten my day. I can’t wait to be able to connect someday in person, when IPF is far behind us. The wait and the difficulty of breathing with significantly fibrosed lungs is hard, but I know it is a struggle you also understand and I am not alone. I keep the faith because I know your story! I appreciate your kind words, as always, thank you for connecting!! Thinking of you during this chaos as well and hope you’re keeping well and safe. Hugs!
      Charlene.

  3. Patricia says:

    Hi Charlene,
    Great column and, like others I’ve read on Forum posts, very helpful information. My husband (age 63) was diagnosed with IPF in Seattle last month. Already, Ken and I have found solace and comfort from a supportive community of individuals like yourself who are living with this disease. So, thank you and please keep up the great work! I was inspired to comment in that I am very curious about the state of research, investigative therapies, clinical trials, and the overall scientific progress being made towards advancing to a cure or better treatments. I see a number of promising drugs in the pipeline, but was wondering if you have any insight into pharmacological advances, etc.? Do you know who, if at all, is putting pressure on the FDA, biotechs and big pharma, to expeditiously bring new therapies to market? Thank you for all you do and I appreciate any information you can provide.

    Take care and stay safe,
    Patricia

    • Charlene Marshall says:

      Hi Patricia,

      Thanks so much for reading my columns and connecting via the comments. It is nice to hear from you and I am glad you’re finding the content helpful! Sorry to hear of Ken’s recent IPF diagnosis, do take good care of yourselves during this time, I know it is tough. There are great support options near Seattle – I am lucky to know many of them and am happy to connect you with some folks if you want? Really good questions you have and I try to stay abreast of as much research as I can with respect to IPF and drug development, however, much of it is beyond my scope of knowledge or understanding. I can try to obtain more information about this for you if you’re interested, but not sure how successful I’ll be. However, I do know some folks in the pharma world, working hard on new drug development(s). Feel free to email me if you’d like: [email protected]

      Kind regards,
      Char.

  4. Russ says:

    Hi Charlene,
    Than you for being strong and getting involved, I am hoping that perhaps covid 19 research could enlighten ways to help those struggling with other lung issues.
    I have been diagnosed with interstitial lung disease with no apparent cause.
    Have been through the steroids and cellcept and now chemo infusions. The next step is transplant but I’m running out of time. At 63 the rest of my health is great.
    It looks to me that the alveoli are being attacked in both the covid and ild similarly.
    I pray for research that can save us all.
    Sincerely
    Russ

    • Charlene Marshall says:

      Hi Russ,

      Thank you so much for reading my columns and reaching out via the comments. It is nice to hear from you! Like you, I sure hope that COVID research will illuminate the promising need for research for those of us living with chronic lung conditions. I know many other patients that share that hope with us as well. So sorry to hear of your ILD diagnosis – do they know which ILD your diagnosis was and/or what exactly they’re treating? Hopefully this knowledge lends some information to pursuing transplant. I do hope you can get evaluated and listed! Hang in there, and I am with you in hoping that research can save us. Take care and write any time!
      Charlene.

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