I’ve had sarcoidosis (affecting my lungs) over 13-15 years now, a long time, and thrived in life. In 2018/2019 I started having issues, thinking my sarcoid was no longer in a remissive state because the flu-like/pneumonia symptoms had me on antibiotics off and on over about 4 months. I lost over 25-30 pounds in that time too. Something was wrong. I am a commercial truck driver but could barely make it between trips once off the antibiotics, the infection/symptoms came right back.
My pulmonologist said he wanted me tested and referred me to another team because he felt like I had a more 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 the treatment regime and then decide, I did NOT have to get the feeding tube thankfully. But I was on a bunch of meds, was in pulmonary rehab or physical therapy to build my lung function and ability to breathe with little to no oxygen. And 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.
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!
October 10, 2022
I restarted pulmonary rehab (going into my second full week now), this past week I increased minutes and reps on my rehab exercises. Which is good, it pushes me physically but to get new lungs I have to be physically ready to take the stress of the surgery. So pushing me over my limits helps. It is hard because I felt my legs burning the other day, whew!
Some days its not the physical stuff its the other stuff. My portable oxygen concentrator started messing up. It was cutting off and I exchanged it for a replacement and the replacement didn't push the air like I needed. Which made my oxygen levels drop. Stressful. So now I have tanks. My doctor already said they wanted to increase my oxygen liters (I needed more oxygen flow from my machine to decrease the stress on my heart and lungs - they work harder when you can't breathe). The increase in liters of oxygen means I have tanks (the cylinders) now, 8 liters of oxygen to walk around or when I exert myself and 2 or 3 liters while I am just sitting watching movies. That is a lot to have to deal with when going somewhere and those things don't last very long, maybe a little over 3 or 4 hours. In order to just breathe I will take it.
Just wanted to share a lil update. Again thank you all for the donations, sharing my link and sending prayers.
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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.
November 6, 2022
Hang in there George... you've got this!!! Sending continuous Prayers