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    • #15079
      Michael Blasi
      Participant

      Hi Everyone,

      My motto is:  ONE DAY AT A TIME!  Let me encourage you to never give up…..I was officially diagnosed in August 2016 and the doctor mentioned back then to consider a double lung transplant,

      but I said no.  I was feeling good….retired and only a little short of breath walking and going up stairs…..then in March 2017 I started going on oxygen but only for walking and not sitting still or sleeping.  I started pulmonary rehab as well but my oxygen rate started to deteriorate and I needed a higher liter setting….. then in October 2017 while away with my family, everything changed and I was hospitalized for 4 days.  The doctor said I had a “flare-up” and I then went on oxygen 24/7.   After encouragement from my wife,  I went for all the evaluation tests in September 2018 and was put on the Organ Donor Transplant registry in October 2018.  In less than 24 hours, I got “THE CALL” that a donor was available and in the wee hours of Oct 4, 2018 I received a new lease on life.  I received a double-lung transplant during a 6 hour surgery.  I was taken off the ventilator after one day and off the cannula in five days and breathing completely on my own with my new lungs and out of the hospital after 8 days….. I am 69 years old.

      As a wise person once told me, we don’t write the plan…..God writes the plan and it is His plan…don’t give up…Believe all things are possible.   Mike B., New Jersey

       

       

       

       

    • #15089

      Hi Mike,

      I am so happy to read your story, thank you so much for contributing to the topic of lung transplantation to give others hope. You’ve certainly done this for me!

      Your timeline in terms of diagnosis to requiring oxygen to experiencing a “flare up”/exacerbation seems similar to mine, maybe a little off. I don’t require oxygen 24/7 yet  but I am finding I use it more often than not because it just makes me feel better and not work as hard to breathe. Did your doctor say anything in particular caused this flare up that required you to be hospitalized for 4 days? Was it a virus, bacteria or something environmental? I am always curious to know about others’ experience as the doctors weren’t entirely sure what caused my major flare up in May 2017.

      I am so glad you considered the lung transplant option and so happy for you that it has all gone well. Congratulations! What a wonderful story, especially with only 8 days post-op… so very happy for you. Keep well and thanks again for sharing your news 🙂

      Charlene.

    • #15093
      Patricia Hayden
      Participant

      Thank you for sharing your story. I go in December 4th for the final appointments needed to get on “the list”. My story is similar to yours. Going along doing ok, then wham, I had a flare that put me on 02 24/7. That was one year ago. I am afraid of the surgery but hopeful that I will have more time with my dearly loved husband and family. I turn 65 in January.
      Again thank you for sharing, it makes my day and life better.

      • #15113
        Michael Blasi
        Participant

        Hi Charlene,

        The doctors could not say why the flare happened its the nature of the disease. But when the flare  happened I was in Pennsylvania and that weekend  and it was hot and humid .

        Even prior to that weekend I was getting slower .

        Hope that’s all behind me .And I wish everyone makes the right decision

        • #15129

          Hi Michael,

          Thanks for reporting back and answering my questions, I appreciate it! Yes, you’re right…these flare-ups are just the nature of this beast/disease I suppose. My exacerbation was caused by a virus that attacked my lungs in 2017 and I sure hope this is behind me as well. I never want to experience that again!

          Wishing you the best,
          Charlene.

      • #15128

        Hi Patricia,

        I know your reply was to the others who have shared their transplant journey, however, I just wanted to say how much I agree with you in terms of their stories making my day better too! I will definitely be thinking of you on December 4th and hoping all/any outstanding assessments go well to get you on the transplant list.
        As always, thank you for writing 🙂

        Warm regards,
        Charlene.

        • #15157
          Patricia Hayden
          Participant

          Dearest Charlene. My posts are for the author and anyone who can relate. I appreciate your input and look forward to it. Thank you for your prayers.

        • #15163

          Please keep writing Patricia, I certainly love hearing from you and value your input.

          Warm regards, and I hope you enjoy your weekend.
          Charlene.

    • #15097
      Alfred Arnold
      Participant

      Hi Mike,

      Of course I know your story 1st hand, being a long-time friend and person who also was diagnosed with IPF. Over the past year I painfully witnessed your decline and was so glad to hear that you made the decision to seek a transplant. I was absolutely stunned when your wife (Pat) contacted me with the news that you were rushed to the hospital in the middle of the night – 24 hours after being put on the transplant registry!!

      When we spoke by phone last week, I was so happy to hear your voice minus the cough and labored breathing. I am not a very religious person, but your experience gives me pause to reconsider that miracles are possible and truly exist. Pat has always been very supportive of me especially many years ago when I was laid off work at age 50 and more recently when she found out that I was diagnosed in December 2017 with IPF. You are blessed to have such a woman who supports and believes in you and has a strong faith in God.

      I look forward to visiting when you have regained your strength and resuming our lunch meetings again at our favorite Italian restaurant.

      I am certain that your courage and determination will inspire hope in others on this forum to believe that miracles do happen! God bless you Mike!

      Al

      • #15130

        Hi Al,

        I know your reply was to Mike, I just wanted to say hello as it had  been awhile and I’ve been thinking of you! How are things going? I hope you’re enjoying time a way from the forums for all-good things. Did you have a nice end of your summer?

        I didn’t realize Mike was the friend you told me about who’d had such a successful transplant. I am so happy for him, this is wonderful news and I am really glad he is part of our forums now to share his experience. I am confident it will give others so much hope and inspiration!

        Wishing you both well.
        Al – did you say you’re in NJ? I can’t remember, but just wanted to let you know I am headed your way in December… staying in NJ but visiting NYC with my Mom 🙂

        Cheers,
        Charlene.

    • #15145
      Alfred Arnold
      Participant

      Hi Charlene,

      Mike and I have been friends for 25+ years. We live in the same town in North Jersey. My IPF seems not to have progressed any further than when it was first diagnosed in December 2017. If you recall, I had a very bad allergic reaction to Esbriet and have since stopped. My doctor wanted to put me on Ofev, but I asked that my pulmonary function test be repeated first. This was done 8/17/18 and my results were improved over the initial readings. For this reason we decided not to start any new medication until after repeating the high resolution cat scan in February.

      Next week I am starting an immunotherapy treatment (Provenge) to deal with my metastatic prostate cancer. This involves three collections followed by three infusions. White cells are removed and sent out to be tagged so that when reintroduced they will recognize and hopefully neutralize the offending cancer cells. The collection/infusion sessions are spaced out by 2-3 weeks. I am hopeful that the treatments will keep the disease at bay for an extended period.

      Hope you enjoy your time in NYC. Christmas time is very special in the Big Apple.

      Cheers,

      Al

    • #15151

      Hi Al,

      Thanks so much for your reply, it is nice to hear from you as I’ve been wondering how you’re doing. I do remember your allergic reaction to Esbriet, and am glad to hear that your PFTs improved over the initial readings. Makes sense to hold off on starting OFEV until absolutely necessary or at least, until you have more information following the HRCT scan in February. Fingers crossed that will show positive results as well!

      I don’t think I knew that your cancer was active Al, is this development new? I think I recall you discovered IPF when you were having routine follow-ups to your cancer treatments but I thought things were at bay. So sorry for my misunderstanding. Sounds like this treatment gives you reason to be hopeful, I hope it works for you as well and doesn’t have any lasting side effects. Goodluck with it all!

      Thanks for your well wishes – yes, I love NYC at Christmas time and am looking forward to sharing this memory with my Mom.

      Warm regards,
      Charlene.

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