PLM Interview: No Oxygen!

No_OsThe passionate and dedicated folks at PatientsLikeMe have followed my journey almost as closely as I have. Recently, they asked me to share my transplant experiences from getting “the call” to rehab and recovery.

If you haven’t checked out PLM yet, I strongly recommend you do, starting with this interview!

 

“No Oxygen”

It’s crazy to think how fast things can happen. The last time we talked with Lori, she was telling us about life on the lung transplant list and playing what she called “the waiting waltz.” And now – everything has changed. Just two weeks after we posted her third interview on the PatientsLikeMe blog in mid April, Lori got the call – they had a set of lungs for her. We caught up with Lori one more time, and fifteen weeks post transplant she’s nothing but smiles. Check out what she had to share and don’t forget to follow Lori on her own blog called Reality Gasps. (Thank you Lori for being so open about your experiences with IPF!)  Read the full interview

 

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8 thoughts on “PLM Interview: No Oxygen!

  1. Hi Lori,

    I’m not sure if you still maintain and read this blog on a regular basis, but I just wanted to express my sincerest thanks to you for sharing the very personal details of your IPF journey. My father was diagnosed with IPF four years ago and has been hospitalized twice in the last few months for a serious lung infection. He is still admitted at present and is now using the highest level if oxygen & has been placed at the top of the transplant list. I came across your posts this evening while searching the internet for info on IPF and soon found myself reading every single post from the beginning of your battle right up until your transplant. Congratulations by the way! The manner in which you described your journey was so tremendously honest, open and even quite humorous at times. I felt like I was sitting and catching up with an old friend. And it gave me hope! I have not felt a lot of hope in the last few days. So thank you from the bottom of my heart. I would love to see you share your compete journey in a book. You are truly an inspiration. I can’t wait to share your posts with my Dad when I visit him tomorrow 🙂 Thanks Lori!

    • Hi Dominique,

      I am so sorry to hear that you Dad is struggling with this vicious disease. But I am really happy to hear he is at the top of the list. Do you mind sharing where he is listed?

      This is a really emotional time for him and your entire family. I’m sure you are eager, excited and frustrated all at the same time. It’s especially important to stay as positive as possible. Keep the faith. His new lungs — pink, shiny and perfect — will be there right when he needs them.

      I wish all of you strength, comfort, courage and peace. Soon you and your Dad will be rediscovering the beauty and joy in life!

      Blessings!

      • Hi Lori,

        Thank you so much for your sincere words of encouragement and hope. I am so ecstatic to share with you that right at this moment, we are waiting for my father to come out of surgery with his new healthy lungs! We are still in a state of shock and disbelief at how quickly everything happened. My father’s health had taken a rapid decline since I wrote you last and the doctors made the decision that he had to be transferred immediately to Edmonton, Alberta. We live in Winnipeg, Manitoba, but they recently closed down the lung transplant program in our province. We knew that when lungs became available, he would have to be flown to Edmonton. Although there were no lungs available at the time, the Dr’s felt that if they did not transport him to Edmonton immediately, he would not be well enough to make the trip when lungs did become available. They sent him to Edmonton by air ambulance on Thursday, April 2. When he arrived here in Edmonton, we all feared that it would be weeks or months before he got the call and with his condition at the time, we were so scared that he wouldn’t last that long. So were were absolutely shocked and overjoyed to be told yesterday that they had a pair of lungs for him! I can’t describe with words how we felt at that moment. Like you have said before, it’s a feeling that only people awaiting transplant and their families can truly understand. We are so grateful for this beautiful gift of life that we have received from this donor and his grieving family. The Dr’s have said that we can write the family one day, but I’m not sure how we will ever be able to express the depth of our gratitude on paper.

        We are also so grateful for the entire medical team here in Edmonton, as they have been so amazing and knowledgeable in caring for my father. Thank you to you as well, Lori, for your inspirational words of hope and faith. I’ll always remember your words “keep the faith. His new lungs — pink, shiny and perfect — will be there right when he needs them”. Thanks Lori!

      • Hi Dominique,

        I have tears in my eyes — I am so happy for your Dad and your entire family! This is amazing news and proof again that everything happens in God’s good time.

        You will be amazed at how quickly he improves. Once he’s up and walking, he will get stronger every day. Positive attitudes are still really important, but they’ll be a lot easier to maintain now! Remember to take care of yourselves, too, as you care for your Dad.

        Thank you for sharing your great news with me. Please let me know how your Dad is doing. Blessings to you!

  2. Your post brought tears to my eyes. Tears of joy. Humbled by your deep knowing of what matters and your ability to live true to that each day. Thank you for sharing your journey, Lori.

    • Carol,

      I’ve delighted in following your journey for these many years. I finally had something I needed to say. Thanks for showing me the way. ❤ Lori

  3. Lori,
    As always, your personality is evident in all that you do. You’re a blessing and an inspiration for many reasons, but the power of the human spirit shines in this interview.

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