1. < MAC & Bronchiectasis
Mentor

Checking in with the Group: How are you doing?

Posted by Terri Martin, Volunteer Mentor @windwalker, Jun 4, 2022

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

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

Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 8, 2022
In reply to @nannette "@windwalker Teri, it's so great to hear from you and that you have checked in. I've..." + (show)
@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

Jump to this post

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!

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 8, 2022
In reply to @kathyhg "Hoping that you’re approved for the transplant soon and that the transplant team finds that needle..." + (show)
@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.

Jump to this post

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?

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 8, 2022
In reply to @megan123 "Hi Terry..you are such a warrior with everything you have been through, and continue to go..." + (show)
@megan123

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❤️🙏🏻

Jump to this post

Hi Jennifer! I so enjoyed our time at the beach last March. Your hubby and friends are the BEST! I am hoping to take you up on your offer to visit you in Canada this summer. I am leaving for Tucson Arizona tomorrow for a week to celebrate my BFF's 70th Birthday. I have many close friends that will be there, so, I am beyond excited to go. Thank you for all of your support through my journey with all of this. It means a lot, and I mean it.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 8, 2022
In reply to @sueinmn "Dear Teri, I am amazed at how well you keep marching forward despite the challenges! You..." + (show)
@sueinmn

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

Jump to this post

Thank you, Sue. I hope you are all better from that one exacerbation you had not long ago. Stay the course and take good care of yourself (I know that you are). A HUGE thank you for leading our group. You are doing a much better job of it than I ever could. I hold you in the highest esteem, right up there with our former leader before me, our beloved friend, Katherine.

REPLY
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 8, 2022
In reply to @johnbishop "Hi Terri @windwalker, I too am amazed and inspired by your outlook and the way you..." + (show)
@johnbishop

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!

Jump to this post

Thank you John! I have learned that Mayo flies to other states to retrieve those allusive organs. So, here's to hoping. How are you getting along these days?

REPLY
1 reply
Mentor
Terri Martin, Volunteer Mentor | @windwalker | Jun 8, 2022
In reply to @raney "I just talked to God and I asked him to watch over and protect you and..." + (show)
@raney

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.).

Jump to this post

Thank you Rany. This post of your's brought tears to my eyes. Thank you so much for putting in a good word with God on my behalf.

REPLY
Mentor
John, Volunteer Mentor | @johnbishop | Jun 8, 2022
In reply to @windwalker "Thank you John! I have learned that Mayo flies to other states to retrieve those allusive..." + (show)
@windwalker

Thank you John! I have learned that Mayo flies to other states to retrieve those allusive organs. So, here's to hoping. How are you getting along these days?

Jump to this post

Hi Terri, I am doing better than I deserve and still waiting for the really warm weather to visit us and stay awhile here in Minessota. It would warm my heart to hear that Mayo found and was flying those allusive organs down for a meet and greet with you.

REPLY
nannette | @nannette | Jun 10, 2022
In reply to @windwalker "Thanks Nan! Those are some encouraging words that you have for me. Would your friend be..." + (show)
@windwalker

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!

Jump to this post

@windwalker Teri, sorry for the delayed response. I was out of town for two days. Absolutely I will set you up with my friend. I'll call her and tell her about your situation. She's very friendly...is a retired teacher. Then I'll text you her info. Nan

REPLY
cmi | @cmi | Jun 11, 2022

Terri,
So much you have endured, lived with and through, and now another tremendous challenge in your near future. If I was your neighbor, a girlfriend that grew up with you, a cousin down the road, I would describe you to my peer group…those close girlfriends I call Sisters (you know the type: share secrets, swap clothes, perform all sorts of personal sacrifices for/with, drink good wine together…)…hey…I have met this woman, Terri, in my MAI forum who is up for a double lung transplant…and she is hopeful, and at times sad maybe scared (my words). My Sisters would say….Wow you know…not everyone has the opportunity to meet such a courageous person. Persons that live with illness and in spite of their efforts, doctors, treatments, progress in disease…those persons have choices. The choice to give up and surrender the work of care for themselves (and loved ones) ….or…the choice to assume the challenge and any and al the consequences that brings…to persevere.
So, I think you are not just one of our Mentors…you are that kind of Woman I would want in my circle of girlfriends. I pray your strength, and intelligence, your discipline and goodness…rub off on me.
Terri, you continue your work and keep writing….please.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Jun 25, 2022
In reply to @windwalker "Thanks Kathy! I am staying very active. I am in pulmonary rehab twice a week and..." + (show)
@windwalker

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?

Jump to this post

Hey Terri, how are things going? Would love to get an update.

REPLY
View MoreView Less
Please sign in or register to post a reply.