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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Hi Teri,
I just found this group and I can tell what a valuable person and appreciated member you are to this group. It saddens me to hear your struggles, I will keep you in my prayers.
I’ve struggled with depression from coughing for the past 16 yrs. While Dr.s told me there was nothing wrong with me. When finally diagnosed with bronchiectasis 4 yrs. ago, then finally 2 weeks ago the MAC diagnosis bringing it all together.
I look for pearls of wisdom and little miracles.
Today I heard that
“if tomorrow we had only the things we were grateful for today” what would we put on our grateful list or thank our God or Higher Power.
This is the switch that turned on my light for today. I hope this helps you too along with the love, prayers and support from your friends on this site. Namaste
@windwalker, I want to make sure you saw this post from @josey1
Terri,
I’m somewhat new to the forum, but have read many of your helpful and generous posts w so much good advice and encouragement. So I was shocked to read this and find out you are going through such a huge crisis. I am lifting you in my prayers and putting out super positive thoughts they find the PERFECT lungs for you quickly.
Do you have children, husband, or family nearby for physical help and support?
Warm cybers hugs, Cate