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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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So sorry to hear this news. Will keep you in my prayers.
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2 ReactionsSo sorry to hear this news. Always appreciate your contributions on this site since I have joined. Thank goodness for wonderful doctors to treat you through all of this. Rough road ahead but know even people you haven't met will be lifting you in prayer
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2 ReactionsYou are in my thoughts and prayers.
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2 ReactionsOh Terri - you are right, not what anyone wants to hear anytime, especially at the holidays.
Now it's our turn to be your support team, the way you were there for so many of us on our journey with Bronchiectasis & MAC. I know you will find the best doctors to help you, just as you have taught all of us.
Do you know yet which transplant center you will use?
Sending you good thoughts and virtual hugs as you begin this new journey. I'm always here to listen!
Sue
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3 ReactionsHi Sue, thank you for your kind words. As far as I know, I will have the transplant at Mayo in JAX; provided they approve me for it. I hope you have been doing well. You will never know how much I appreciate your leadership in this group. I will keep you all posted on what is going on with me. Please have a blissful & merry Christmas. Hugs-Terri
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5 ReactionsSo sorry to hear your news. I've missed you and wondered where you were. I hoped that after stopping your alternate month treatment that you were feeling great and were so busy that you didn't have time to post. I'm disappointed that your news is just the opposite.
You are a great asset to this group, always offering information and support. I hope you will find the energy to post and keep us updated.
Rita
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3 Reactions@windwalker, really sorry to hear that your lungs have been going downhill, I have been thinking about you a lot. I often google lung transplants, they are fantastic these days, very successful so please try not to worry. I'm sure there will be lots of great advice on Mayo for you. take care and keep in touch. Always here for you. Love Heather
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3 ReactionsBest wishes on your new journey. I’ll be rooting for you.
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1 ReactionI am so sorry to hear that you need a lung transplant. Thankfully you have the best doctors (at one of the best facilities) available. My thoughts and prayers are also with you.
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1 ReactionTerry, thinking about you and sending hugs and good vibes your way. No need to apologize- we are all here for you just as you have been for so many. 😘
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