TB Personal Stories
It wasn’t long after moving to another state that Nicole started feeling sick. It was a move she had looked forward to for a long time; a new beginning in the beautiful North Carolina mountains. But getting sick was not part of her plan. Right away she started having a fever, coughing, and having night sweats. Several weeks later, she still wasn’t feeling better.
Her doctor thought she may have severe pneumonia so she sent her to get an x-ray. The x-ray results raised her doctors’ suspicion of TB so they sent fluid from her lung to the lab for testing. A few days later she was diagnosed with tuberculosis.
Thinking back to how she felt when she was diagnosed Nicole says, “I didn’t really understand very much about TB at all, and I didn’t realize at that time that anyone can get it, absolutely anyone can get it. I was just sort of mystified, I just didn’t know very much about it and I kept trying to find out by asking the doctors about the length of the recovery and you know, and am I going to get better and those things.”
After almost two weeks in the hospital she returned home. Nurses from the health department came to her house every day to administer her medicine. They began to be concerned when Nicole didn’t respond as expected to treatment. The night sweats continued and her cough worsened. Not able to sleep, feeling very sick, and in a new place without family or friends, she began to feel very alone and afraid.
“This was a really hard part about my whole experience. At the time when you’d most need your loved ones, I was not allowed to see my son, I’ve one child, I was not allowed to see anybody, have any cousins or relatives or anybody visit me until I got declared to not be contagious, and in my case, that was 6 months,” Nicole says.
Her medical team determined she needed a higher dosage of one of the TB medicines. Nicole began to respond to the new dosage and feel better. The nurses from the public health department continued the home visits to deliver her medicines and check on how she was doing. Nicole had lost a lot of weight in the previous few months. One nurse got in the habit of bringing her applesauce or ice cream to take with the medicines. “And then one day she brought, because I was getting so skinny, she brought me 2 pints of this ice cream from a really special ice cream place in Asheville and it was really nice of her,” Nicole remembers.
After seven months of treatment, Nicole started to feel better and regain her strength. She did daily exercises to slowly build her strength. She was able to get back out in the world, go to the supermarket, and explore her new community for the first time. For Nicole, getting back to the things she loved to do, like painting, was very therapeutic.
And then one day she said, “I’m going to go to this place, Roan Mountain. And so I went there by myself with my dog and there was ice and snow and I had built up my strength, and I just very slowly hiked, it’s part of the Appalachian Trail and I just very slowly hiked there and I took this little video of myself saying like, how I was thankful that I had gotten better because I felt so moved that I was able to do this. And then I came home and then I just started doing my painting which was reflecting the landscape there and it was just very good for me.”
Nicole now views her TB experience as a mixed gift. Although it was difficult at the time, she now is connected with a community of survivors, health care workers, and advocates. Her advice to people with TB is to be strong, believe you can get better, and reach out to organizations and TB survivors for help.
She continues to be inspired by, and paint, the mountains and landscape where she lives.
Nicole is a part of We Are TBExternal, a network of TB survivors.