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My update: It's time for me to think about lung transplant

Posted by Terri Martin, Volunteer Mentor @windwalker, Dec 16, 2021

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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Mentor
Terri Martin, Volunteer Mentor | @windwalker | Feb 3, 2022
In reply to @colleenyoung "@windwalker, It is so good to hear from you. I know that you have had health..." + (show)
@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.

REPLY
shooei | @shooei | Feb 3, 2022
In reply to @windwalker "Thank you! Your words about your friend who had a transplant are VERY encouraging to me...." + (show)
@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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