Anita C
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I was diagnosed with Hypersensitivity Pneumonitis and resultant Pulmonary Fibrosis at age 40 and transplanted at age 62. Four separate medical reviews including National Jewish in Denver. Began using O2 about 2 years prior to surgery. Now 6.25 years post-Txp.
There IS HOPE! Don’t lose yours.
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Happy to share! I am Six Years + 3 Months post double lung Txp. My lungs were rejected by two others but came to me during what would have been my Final Days. I was dying. So we jumped at the opportunity despite the lack of adequate medical history on the donor. (Perhaps family-less? Institutionalized?) I’ll never know how or why a miracle occurred and I recovered nearly fully within a few months, in fact better than I had been for many years! I have struggled with anti/rejections meds (kidney damage) and recurring skin cancers (no melanoma to date) but otherwise doing extremely well. I hate to verbalize that as I fear tempting Fate but I also want folks to know that quality of life is possible after Txp. It’s different for everyone yet more are surviving longer than ever. And I intend to! The emotional adjustment is not an easy road some days but I pray for fortitude and constantly whisper my gratitudes. I was 62 yo at surgery, lived with stair-step declining PF from HP for 22 years. I am now living “my best life” after that horrible disease nearly destroyed me. God is great.
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I took NAC 600mg twice a day for many years. Diagnosed initially in 1995, there was absolutely no established treatment for PF. How does one know if it did/did not help since there was no control group or individual. But I survived 22 years with PF before receiving a transplant. Of course it is impossible to attribute it to NAC (or not) but…I also would not rule it out.