Hi my name is George, I have sarcoidosis, been living with and thriving with it for over 13-15 years now, a long time. In late 2018 early 2019 I started having repeat issues, thinking my sarcoid was acting up, no longer in a remissive state, I was having the flu-like/pneumonia symptoms, was on and off antibiotics over about 4 months. I lost over 25-30 pounds in those 4 month. Something was wrong. I’m a professional commercial truck driver (18 wheeler) but I could barely deliver my loads and was exhausted between trips. Every time I was done with the antibiotics the infection/symptoms came right back. No this was not COVID.
My pulmonologist said he wanted me tested and referred me to another specialty pulmonary team because he thought I had a serious lung infection; I did. I was diagnosed with a bacterial infection known as MAC early 2019. I was so sick I was admitted to the hospital to treat the infection, dehydration and they almost inserted feeding tube but fortunately the team of doctors said they’d monitor me on meds and my appetite, fortunately, I did NOT have to get the feeding tube. But I was on a bunch of meds, was in pulmonary rehab or physical therapy to build my lung function, muscle mass I lost and ability to breathe back up. I was doing good. Finally, after about a year and a half, I had what they call culture conversion (meaning the MAC bacteria was no longer present in my sputum or labs/my CT was stable) late 2020 until early this spring 2022.
February 6, 2023
2023 - February and I am still awaiting listing and my lungs are honestly not working with me like I want. I have had a two hospital stays, one in December and one in January. I lost weight both times. This is a tough journey sometimes just sitting up in bed out walking from the table to a chair leaves me gasping for my next breath. I continue to push to gain weight so I can be listed. I have a feeding tube now (it was placed while I was hospitalized in January) to help. I never imagined I’d be experiencing anything like this and I’m grateful for my family & those who support, they encourage me to keeping pushing and not give up, to make it to transplant and be a success as a transplant recipient. I’m fighting y’all!
October 31, 2022
My PICC line is out as of 10/15 and no more infusions for now! Thank goodness!
I am back on another inhaled medication, I was not too happy but I still have to take this to get rid of this infection.
This week (10/31/22) I'm in Charleston for pulmonary rehab and I will see how this goes. I just wanted to give an update and again thank you all who have contributed, prayed and given unselfishly. I am truly Thankful!
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February 23, 2023
Wishing you and your family strength during your journey! Praying you find better health soon!
November 20, 2022
Prayers for your healing. May God perform a supernatural miracle !!!!!
November 14, 2022
Cuz, I love you and I pray this transplant is everything you need and deserve it to be.