About

Welcome to Reality Gasps.  My name is Lori and I have pulmonary fibrosis.  I am also the mom of two teenagers, a writer, sci-fi fan, and lover of fresh food, unpretentious wines and furry shih tzus with a parrot complex.  I studied Journalism at Northwestern, which meshed perfectly with my natural curiosity.  And, while I abandoned journalism for the corporate world decades ago, I have dusted off my investigative skills and put them to work learning all I can about PF.

My goals are simple:  to share everything I learn so others may benefit, to laugh as much as possible, and to kick some serious PF ass along the way.  I hope this is a very long ride. Now, who wants shotgun?

23 thoughts on “About

  1. Lori,
    I love your blog. I am not a patient but have lost two family members (my dad and his sister) to IPF. I am very involved with the PF support group in Northern VA and would like to provide your link in our fliers. Would this be okay with you? We currently send electronic mailings to 240 patients.

    Catherine

    • Catherine,
      I am so sorry to hear about your loss. This is a hideous disease and I often wonder if it is harder for the family members who have to stand by and witness its progression. I am sure your experience and perspective is a huge benefit for the support group.

      I would be honored to be included in your mailings. Thank you very much!

    • Catherine–What support group are you in? I’m in Arlington and I’ve been looking to get involved. Thank you!

  2. Hi Lori, I just found your website and am thrilled to have discovered it. I look forward to reading it from the beginning and following your journey with this awful disease. I have a new website on my journey with pulmonary fibrosis. I will add a link to your page. My site is: pulmfibrosis.sharonjwebdesigns.com. Blessings! Sharon

  3. Hi, I’m Nanci. I was diagnosed with PF in 2005. My mother also had PF in the 80’s, also my aunt and uncle in Ireland died from it. When I first got sick, my doctor said I had pneumonia and treated me with prednisone. Then the “pneumonia” came back and back. I went to a local pulmonologists, had a CT and some tests… he said I had interstitial lung disease. When I started crying, he said I should go on a cruise and relax!! My husband started doing research on the internet and decided we would go to the Stanford Chest Clinic at Stanford, CA. I knew I had PF because it runs in my family. At Stanford they tested me for everything and then decided the only sure way to diagnose PF was an open lung biopsy. The biopsy was a 4 day visit in the hospital, but it confirmed I had PF. No more guessing! I felt doomed. I cried every morning, thinking of the things I would miss in my children’s lives, my husband and of course missing me!! The staff at Stanford helped me with hope. They had clinical trials which I participated in, but nothing came of that. I stayed pretty strong, kept getting my hair and nails done. I tried very hard to remain positive, but I did have many days of depression. I had other issues with my children and their drug addictions. Life wasn’t pretty. I went back to Ireland to say my good byes to my family and make memories with my children. My husband and I did go on a cruise to Alaska and relaxed, but the feeling of doom did not go away. Then I was introduced to the Transplant Team at Stanford, I was so scared. They were VERY informative. I had to have a week long regiment of tests to make sure I was healthy enough. I tried to think I was on vacation. I bought new outfits to wear to the tests (silly me) i still cried every night. Stanford had a complete transplant program from social workers, doctors, support groups, even a slide show to show you what to expect! After a couple of weeks, I decided it wasn’t for me. I was too scared and depressed. I felt I just could not put my family through all that. I didn’t think I had the guts to do it! Then I went on oxygen 24/7. I still drove my car, went shopping and took lots of naps (my favorite thing to do). I still got my hair and nails done. I was going out looking pretty as possible. Then, two years ago, they told me I was at end stage and had to make up my mind on the transplant. My sister and niece broke into tears at that news. In two seconds, I jumped out of the chair and said “Yes, I can do it!!” I was 60 years, fat and puffy from the prednisone, but my hair looked nice. I got on the list and 7 months later they called me on Thanksgiving, they had the lungs for me and could I come in at 7 a.m. the next morning? I just about fainted. I had just finished cooking Thanksgiving dinner, with my oxygen (electric stove)! That night my husband and I could not sleep. I took a shower in the middle of the night and fixed my hair. I wanted to look good for the transplant!! That morning my entire family and my best friend went to the hospital. I brought my favorite pillow and several comfy pj’s. We took pictures. I was fine until it was time to go into surgery. I freaked out. They gave me some meds and I woke up a day or two later with new lungs, breathing on my own!!!! I was 60 years old and I was able to get two new lungs! I was so thankful to the donor, the doctors, the wonderful nurses, my wonderful family, I loved everybody!! Although I must say I said some crazy things while I was on the heavy meds in the ICU. It was a tough battle to recover. No rejection, thank God, but I was so weak. Could hardly walk or move for months! I had to wear diapers. My husband fixed my hair. My sister took care of me 24/7. I was able to go get my nails done. I think the hair and nails thing kept me going, as silly as it seems. But here I am two years later, size 6 and two beautiful lungs. I take lots of meds everyday. I’m down to 5mg of prednisone and only have bags under my eyes… no more puffy fat face. I can hardly believe what I went through and I did survive. Did I mention I had a “theme song” in my life… I Will Survive. I still take naps, but I am amazed at the things I can do. How healthy I feel. How blessed I am. My sons are in recovery. I do have some digestive problems from the surgery. My Vegas nerve was nicked, but Stanford and their team of specialist has helped me through it. Most importantly, I am alive and I am with my wonderful husband and children. I realize how fragile life can be. I want to give back more. I hope my story can help someone.

    • Nanci, thank you so much for sharing your story. Every victory over PF is another heaping helping of hope for those of us still puffing along. I especially love that you kept up with your hair and nails. We all have to remember that we may have PF, but it sure as heck doesn’t have us.

      You also make a really important point — no one else gets to decide when the fight is over. I’m so glad you found the Stanford team and that you’re still here, living a great life.

      Again, thank you so much for sharing your story!

      • I forgot to tell you that I had to quit work in 2005 because of PF,go on COBRA, then get on Social Security Disability and Medicare (my test score made me qualified immediately). Right before the COBRA expired, I got supplemental insurance. Since I had continuous coverage, I did not have to disclose my disease, only if I had rental failure. 4 questions only! Medicare paid for 80% of the transplant cost. I had to go to a Medicare approved facility (see approved Medicare transplant facilities at http://www.cms.gov/Medicare/Provider-Enrollment-and-Certification/CertificationandComplianc/downloads/ApprovedTransplantPrograms.pdf My supplemental insurance paid the other 20%. The whole thing costs over 1 mil from the get go, monthly doctor visits, breathing tests, the surgery, ICU etc. On one of the blogs I read that someone said you had to wait two years before Medicare would pay. I don’t believe that is true, it depends on your test scores.

  4. Hi Lori,
    My name is Brian, and I work for PatientsLikeMe (http://www.patientslikeme.com/) where I write the company blog called The Value of Openness. (http://blog.patientslikeme.com/)

    I recently came across your fantastic blog chronicling your journey with pulmonary fibrosis. I’m in the process of interviewing a number of patient bloggers and authors for the PatientsLikeMe blog as part of our initiative to raise awareness about rare lung disease.

    You can check out an example of a PatientsLikeMe member talking about his journey with idiopathic pulmonary fibrosis on our blog here.
    http://blog.patientslikeme.com/2013/03/04/stiff-lungs-ians-personal-journey-from-idiopathic-pulmonary-fibrosis-diagnosis-to-lung-transplant/

    And this is a Q&A example of a psoriasis patient we interviewed for our blog.
    http://blog.patientslikeme.com/2012/12/17/my-war-with-psoriasis-an-interview-with-british-blogger-simon/

    If you’re interested, I’d love to interview you next! Basically, I would send you 4-6 questions that you could answer and send back at your convenience. Also, we’d like to feature two photos of your choosing.

    Thanks for your consideration. Feel free to comment back, or if you’re comfortable my email is bburns@patientslikeme.com
    Best,
    Brian Burns
    bburns@patientslikeme.com

    p.s. In case you’re not familiar with PatientsLikeMe, we’re a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. We currently have 200,000 members and a growing lung disease community.

  5. I love the site! I was diagnosed in January and things are moving along quickly. I’m good when I’m on high doses of predisone (which I don’t like). They are sending me for an transplant evaluation but my doctor is concerned I’m not a good candidate because I’m over weight. I’m on oxygen 24/7 and the last couple of days when I get up and move around my lips and fingers are turning blue. My pulmonary rehab nurse just found me a support group in dallas that I’m going to go to. I don’t really get any answers from my doctor. All he says is to stay positive and rest. I hate that others are going through this, but I can’t wait to talk with someone else that can share and compare experiences.

    • Kay, I was 60 and overweight when I had my lung transplant at Stanford Hospital, California. I was on oxygen 24/7 as well. I am now a size 6 with new lungs at 62!! I have some digestive problems because of the surgery, but I am so grateful I went to Stanford. The doctor I was seeing before I went to Stanford, was NOT helpful. He told me to go on a cruise and relax. My mother also had PF in the 80’s. There was no hope for her back then. There is still not a cure, but transplants work, if you can get a referral to a Transplant Team. Wishing you the very best.

  6. Hi Lori, Put me on the prayer team. I have already entered your name on all the prayer teams I belong to! Our petition is that you get strong and qualify for the transplant and that God will protect your donor keeping you both at peace and healthy enough for the part you will each play in each others lifves. You are an amazing woman, your strength and positive outlook are absolutely the gift of Divine intervention!! \O/. I live a life of active prayer and Adoration and you are a part of all my prayers in the Adoration Chapel. I’ve added you to the Magnificat world wide prayer team, as well as our Cursillio/Ultreya. I will pray for you, your family and extended family, as well as all others sharing this illness, as long as there is breath in my body!!! \O/ PTL!!!
    God bless you, Mary keep you and Angels surround you.

    Alice

    • Thank you so much, Alice, for including me in your prayer teams. Mom was just here for a visit and we both shared fond memories of time spent with you. Take care of yourself! xoxo L

  7. Hey Lori, sign me up to ride shotgun but I am going to bring a cannon. I want to kick some fribrotic ass too and blow it clean off the face of the earth. Here is the link to Roger’s site. I sent you an email with his link but others here might like to visit his site also. He has a cool Q&A section that tells it like it is and offers a lot of hints about what he learned over the time of his battle and how to negotiate the system.

    http://www.ipfinfo.com/frames.html

    We LOVE YOU,
    your slightly older brother Curt

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