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.

Interested in more discussions like this? Go to the MAC & Bronchiectasis group.

My thoughts and prayers for you.

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Good 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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@colleenyoung

@windwalker, It is so good to hear from you. I know that you have had health challenges this past year + but I was shocked to read about your possibly needing a lung transplant. I believe that you've been to this threshold before, even to the point of completing transplant evaluation, right? At that time, if I recall correctly, you managed to improve your lung capacity and stave off the need for transplant. What helped then? What is different now? What are the next the steps?

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Hi 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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@thielmann1

I wish you all the best as you navigate this next step with your lungs. I had a lung removed in 2017 because it was working 23%. I have bronchiectasis and active Mac in my other lung. I, too , could be on this same journey down the road. I hope to hear more from you. Take care.

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Hi 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?

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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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@shooei

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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Thank 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?

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@colleenyoung

@windwalker, It is so good to hear from you. I know that you have had health challenges this past year + but I was shocked to read about your possibly needing a lung transplant. I believe that you've been to this threshold before, even to the point of completing transplant evaluation, right? At that time, if I recall correctly, you managed to improve your lung capacity and stave off the need for transplant. What helped then? What is different now? What are the next the steps?

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Hello Colleen. I just got two ZOOM appts set up. One is with Margie, a transplant nurse, the other with Dr. Narula. These meetings will be about discussing whether or not I am a candidate for the lung transplant and then go forward with the pre-qualifying tests. If my health and attitude pass, then I will get listed. I am more frightened about the end stage of this disease and struggling for air than I am of the transplant. I guess by that point I will really look forward to the transplant. I have been prepping myself on my end by down-sizing my belongings in preparation for a move to Florida, getting tests done locally like mammogram & colonoscopy, lifting weight/walking, and eating high calorie food to keep fighting weight on. Despite everything, my attitude is sunny every day. Time is precious and I won't waste a minute being anything but happy.

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@windwalker

Thank 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?

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Haha – "…a bit scary" has to be the understatement of the year!! You are doing so many great things for your body to prepare. You will fly through this.
Thank you for asking, I am still struggling with gut issues, had a laparoscopic gall bladder removal in November and ended up with a pulmonary embolism apparently from that. Go figure!! If something weird is going to happen, I seem to be in line to get it.
But I SO agree with what you said, that all of this has just reinforced for me how precious our time is. Though I definitely have my moments, I refuse to let any of this steal my joy!!

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