Checking in with the Group: How are you doing?

Hello Everybody! Yes, I am still around. I wanted to check in on you all. I just finished up a grueling two weeks of pre-qualifying testing at Mayo for a double lung transplant. I have a few more Zoom meetings next week and then the team will determine if I am able to get the transplant. I also found out that my MAI is back after testing negative since 2014. I suspect (but could be wrong) that going off of my monthly antibiotics (not my choice) combined with being kind of lax with the saline treatments in the last month; may have had something to do with it's return. Needless to say, I am and will be diligent as hell with the saline from here on out. I was told that I will most likely need the transplant by next spring. I was told by the surgeon that finding a cross match for me will be like finding a needle in a haystack due to my rare genes. I am on oxygen now when I move about the house, walk my dogs, or go to rehab. So, that has changed since last Dec. (needing more oxygen use) I have had moments of sadness at times and I think that is normal. Most of my days are good and productive. I have chosen not to waste the days I have now being depressed or a shut-in. I can still breathe reasonably well and do most of the things I usually do. It is good to live in the here and now. Please reply and let me know how YOU all are doing? I have missed you! Hugs -Terri

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It's hard to know what to say to news like this. You certainly seem to be taking it head on and learning to handle your situation. It is an example to others. Will be looking for updates and thinking of you. I do believe in the power of prayer so will be offering up some for you!

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Terri. You are so valuable to this group so keep your head up and know there are so many who will be keeping you in their hearts and prayers. Praying for the best possible outcome. God be with you and bless you.

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Teri, judging by the content of your post I think you’re doing an admirable job keeping the Blues at bay. You know very well the outsized contribution of our mental status to our overall functioning. If someone says you seem a bit off your “game.” Well duh! Don

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@windwalker Teri, it's so great to hear from you and that you have checked in. I've been wondering how you're doing. I hope they can find a match for you and all goes well. You're a fighter and I know that you will be ok. I have a friend at my gym that had a double lung transplant five years ago at MUSC in Charleston, SC and she's doing great. I mean she's at the gym! Pretty remarkable. Please keep us posted all the time because we want to know how you're doing. You've been such an asset to this site for many years and have helped so many. Take care of yourself and we'll be thinking about you.
Nan

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Hoping that you’re approved for the transplant soon and that the transplant team finds that needle in a haystack for you quickly. In the meantime, stay well and active so you’re ready when it’s time for the transplant. Your strength and positive outlook are an inspiration for all of us.

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Hi Terry..you are such a warrior with everything you have been through, and continue to go through. You were such a big help those few years when I first got sick. Now I am here for you whenever you need..Day At a time girlfriend…We are overdue for a good chic chat❤️🙏🏻

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Dear Teri, I am amazed at how well you keep marching forward despite the challenges! You have been such a blessing to all of us in this group, sharing your experience.
It was from you that I learned the importance of airway clearance, how to manage the meds for MAC, and so many other things.
I wish you the very best in finding that one-in-millions match!
Sue

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Hi Terri @windwalker, I too am amazed and inspired by your outlook and the way you handle challenges. Sending some positive vibes your way even though you have an abundant supply of them, the more the merrier! Hoping the haystack is smaller than your surgeon thinks and there is a great detective out there looking for a match!

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I just talked to God and I asked him to watch over and protect you and that the person with the right gene match will have donated lungs. (With God all things are possible.).

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@fdixon63

Terri. You are so valuable to this group so keep your head up and know there are so many who will be keeping you in their hearts and prayers. Praying for the best possible outcome. God be with you and bless you.

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Thank you so much. The prayers are much appreciated. What is going on with you?

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@nannette

@windwalker Teri, it's so great to hear from you and that you have checked in. I've been wondering how you're doing. I hope they can find a match for you and all goes well. You're a fighter and I know that you will be ok. I have a friend at my gym that had a double lung transplant five years ago at MUSC in Charleston, SC and she's doing great. I mean she's at the gym! Pretty remarkable. Please keep us posted all the time because we want to know how you're doing. You've been such an asset to this site for many years and have helped so many. Take care of yourself and we'll be thinking about you.
Nan

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Thanks Nan! Those are some encouraging words that you have for me. Would your friend be willing to talk to me on the phone or meet with me in person? I would love to learn more of her first hand experience. (for those of you reading this; Nan and I live 40 minutes apart.) Nan, We need to do lunch again soon!

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@kathyhg

Hoping that you’re approved for the transplant soon and that the transplant team finds that needle in a haystack for you quickly. In the meantime, stay well and active so you’re ready when it’s time for the transplant. Your strength and positive outlook are an inspiration for all of us.

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Thanks Kathy! I am staying very active. I am in pulmonary rehab twice a week and just joined a gym up the street to work out on my off days from the rehab. I generally walk a mile with my two dogs every day, but, that may lesson as the temperature and humidity mount. What is happening in your world?

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