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My update: It's time for me to think about lung transplant
Hello everybody! Besides missing everybody, I have been hoping you are all doing ok. I am not doing ok. I was informed yesterday that it is time for me to think about getting listed for a lung transplant. I think I am still in shock. Despite being mac negative for many years; my bronchiectasis has chosen the fast track for taking my lungs down. My lung function is now at about 29% and I am very short of breath. This s.o.b. has me chronically fatigued which is why I have been MIA. Please don't be fearful that this is what will happen to you. I have an added factor of being an Alpha-1 carrier, a disease of which carriers tend to get lung diseases. I apologize for this crappy message just before the holidays, guess I need some support right about now.
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Terri- prayers for discernment as you navigate your decision regarding a lung transplant. Thank you for your care and concern for members on this board- your guidance has helped many!
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2 ReactionsAlthough new to the group I have eagerly followed your posts.I hope and pray that this will be a new lease on life.
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1 Reaction@windwalker Terrie, so very sorry to hear you are suffering. Yes, prayers for you.
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1 Reaction@windwalker Terri, I haven't been on here in a while so I just saw your post about the lung transplant. Hang in there. Thinking about you. Nan
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1 ReactionMy thoughts and prayers for you.
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1 ReactionGood luck to you, and keep up your spirits. Have several friends who successfully had lung transplants, and they did very well. The MAC disease causes so much fatigue, its difficult to keep my house up anymore. My thought and prayers are with you to make the right decision for yourself. Blessings to you!!!
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1 ReactionHi Colleen. To answer your question about what had helped me to stave off having the lung transplant before; I believe it was taking the monthly prophelactic antibiotics. What is different now? Lungs are in decline and it is a mystery as to why. I can only presume that I have a progressive lung disease that is going to take it's course no matter what. I am living my life as usual although tripping on oxygen tubing all of the time. I have even managed to close it in the refigerator twice. LOL!
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2 ReactionsHi there. Wow, I have never chatted with someone who is living with one lung. I am curious as to how it feels to operate with only one. Did having it removed help you? Also, what year were you diagnosed with mac, and are you taking treatment for it?
Hi Terri, I have been away and just read your message. I'm so sorry for all you are going through, and praying for your peace and comfort as you navigate your next steps.
As a word of encouragement, I have a good friend who is Alpha1 and had a lung transplant 25 years ago - still has that same transplant and is still going strong all these years later!!
You will be in my prayers. 🤗
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3 ReactionsThank you! Your words about your friend who had a transplant are VERY encouraging to me. Getting a lung transplant is serious business and frankly, a bit scary. How are you doing these days?