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 Support Group.
So sorry to hear of your struggles. I understand the anger that goes with having your body not wanting to cooperate with what your mind thinks your life and your health should be. It sounds like you're tough though and you will get through this as well. One day at a time. One breath at a time.
Hi Terry..just read your message..this plains your being winded etc…your a warrior and either way you’ll be ok..going to call you ❤️🙏🏻
@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?
In reply to @windwalker …. I am so sorry to hear this is happening. As you face the next challenges, please know we all stand with you and are here for you❤️
Dear Terri…I am sorry to read that you are having such difficulties with your lungs. You have worked so hard to maintain and improve your health. I am keeping you in my prayers and am so hopeful that you will come out of this feeling so much better…I'm just so very sorry that you have to go through it. You have been such an inspiration and blessing to us all …. I am also hoping that your daughter is still staying with you….and that you both have a Holiday filled with love and joy. Sending my very best and praying for a great outcome. Please keep us updated.
Hi Terri, I will have you in my prayers.
My prayers and thoughts will be with you🙏🙏
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.
@thielmann1 so great you could get a new lung , just wondering can the MAC spread to your new lung. Thanks Heather
@windwalker Hi Terri, yes this news isn't what I'd hoped for you at all.
But I'm sure you'll be well looked after and I'm wishing you all the best. I hope you end up being very glad you've finally had it done !
(But of course, like Colleen, I also hope something good intervenes and you won't even need it).
I'm sure you're very tired with all of this, but please keep in touch from time to time when you can. We'd all love to hear how you are going.
Hugs and thanks for everything you've done for us, Annie x