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Carol H : TX

I was first told I had pneumonia from a CT scan. Without further investigation I was given the antibiotic called Cipro. I was traveling out of the country when within days, I had a swollen lip and tongue and was lethargic. When I returned to the US I found a pulmonologist who pulled liquid from my lungs to test. The pulmonologist referred me to a disease and infection specialist who advised me I had MAC. His reference to this disease was pretty shallow and misguided to say the least. He said the medication they used for this disease was ridden with side effects and I should just work towards an acceptable way of life without medical treatment. Nearly two years later I was definitely more sick. Realizing I need more help I started working with an allergist who was alarmed with my low breath capacity. He wrote to colleagues for direction regarding MAC. The feedback was two doctors in the US would know of this disease. One of which was in my state of Texas but a four hour drive one way. Luckily my insurance would cover visits to this doctor at my home hospital. 

When I started to see my doctor on January 2017 he informed me I had a cavity that had developed in my right lungs from the bacteria eating lung tissue. In addition I have bronchiectasis which will make me forever vulnerable to MAC and other lung disease. I had no other choice than to start a cocktail of antibiotics to try killing off the responsible bacteria.  I would have to remain on the cocktail for a full year of consecutive labs showing no MAC bacteria. After a year of the cocktail causing a year of severe stomach and digestive upset, I was told I could stop the medications. That was February of 2018. By September of 2018 a new scan showed the infected cavity had grown in size indicating the disease was actively claiming lung tissue.   

Upon my own research I found a hospital in Denver Colorado. The information I found represented this facility very highly as a world leader treating lung disease. I contacted them and arranged an appointment February of 2019.  I spent a week at NJH engaged in a barrage of tests, assessments and education of my disease. There I came under the care of another doctor. I returned home better informed, but with the same medical forecast. April 2019 I started on the 3 antibiotic cocktail once again. This time one of the oral antibiotics was replaced with one called Arikayce that was inhaled, and still in trial. By September 2019 I was suspicious my condition had worsened. I tried to return to my doctor in Texas for assessment and found he had retired. Another doctor was there and willing to accept me as a patient, so saw her early Nov 2019. She verified the cavity had grown more still and we needed to ramp up treatment. I informed her I had been to the hospital in Dener and was not opposed to considering surgery. She offered to represent me to the Denver doctors and help with a teamed approach.  

By January 2020 I decided to reach out to Denver myself to schedule another visit. I saw my original doctor in Denver in February when we jointly decided surgery was the best next step.  Surgery was scheduled April but Covid 19 put it all on hold. My surgery ended up taking place June 26 2020...a mere few weeks past that point now.  

I'm still healing, but off the added medication imposed relative to the hospital stay and surgery. What I need to accomplish now is my after care. Unfortunately it's been a tremendous struggle finding a pulmonologist in Austin who is familiar with MAC and willing to join a team effort for my care. It's the most obvious element hitting hard with the fact MAC is a little known disease, and few doctors are willing to get involved. Because of this I've had to beg my existing doctors to prescribe medication or even  order the insertion of a pic for IV's. It's been a tough road to say the least and I don't see there's an end to it. I can only work towards a successful maintenance routine, and maybe help others with my story along the way.  

I have been forced to accept what was normal for me in the past is no longer. I must stay aware and vigilant to avoid environments that have pollutants or solid matter in the air, as well as sick people who can infect me.  I've been counseled I should avoid steamy areas including showers, washing dishes or clothes. I should no longer near a hot tub or work in my garden, as the infectious MAC bacteria becomes airborne via water, air and earth. So simply put there is no place on earth that's a safe environment for me!  

First Published: 1/1/0001 12:00:00 AM

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