Liz’s Story from Oregon, U.S.A.
TB has changed my life in many ways. In some ways it has ended up being a enriching experience because I was able to use the experience to connect with others as well as myself. I was diagnosed with TB while living in Kenya. At the time I was volunteering in a rural area outside of a nature reserve. I had a lot of experience with TB actually but not a lot of information. In previous years I had lived in Zimbabwe at a Orphanage where I lived and worked with children and adults with HIV/AIDS as well as TB. For some reason I had directly correlated being HIV positive to getting TB so I felt that I was not in any danger.
I believe it was during this time I became latent and then 3 years or more later during a bout of food poisoning when my immune system went down I began coughing. I coughed for a few months and did not take it very seriously as it was usually in the mornings and I was around a lot of dust. I saw a doctor and was told it was most like irritation to the dust so I felt justification in continuing to ignore the cough.
One night I had a coughing fit and ended up coughing up lot of blood. At this point I knew something was very wrong and went into down to see Doctor. There I was given a x-ray and the results appeared to be pneumonia or bronchitis. It was only after a specialist was called in that TB was suspected and I was given a sputum test. This came back positive.
I was very confused at how I got TB and really about what it was and how it would effect my life. Luckily the doctor was able to spend a lot of time with me to explain my treatment and that I would need isolate myself for as much as possible in the next few weeks. During this isolation time I felt absolutely terrible health wise with awful side effects which left me either in bed or in the bathroom. I also had to call everyone I had come into contact with which was a hard and strange experience, everyone was VERY nice about it but there was a veil of shame for me personally as if I had done something wrong on purpose which made me angry but also sad.
The side effects I experienced at first were much stronger than later in my treatment as my body was trying to adjust to the meds. The side effects I had while on treatment were: stomach pain, gut issues, nausea, rash, thrush, fatigue and a few others.
When I received negative smears I was told I could fly back to the US and I decided to do that. In hind sight I wish I had taken more time to make the decision to leave or stay but it is what it is as I feel I would have received good treatment there as well and had a little more freedom in the process. Upon arrival to the U.S. I was immediately enrolled into the D.O.Ts program where my treatment was observed and I had to start my treatment over which added about a month to my treatment. The nurses which visited me everyday and then several times a week later in treatment were nice people but we did not always see eye to eye on my treatment.
The biggest struggle I had during my treatment was side effects from the meds and the frustration I had with lack of support from the D.O.Ts program. This frustration led me to reach out for personal information and experiences with TB online and when I found little I started a little page on Facebook. I also sought other opinions and did what I could to support my body and my mind during that trying time.
The biggest thing I have encountered from my experience with TB and from talking to people with TB on the page is that side effects are a massive part of some if not most of people on treatment and there is little information or support out there. Unfortunately this seems to be a major cause of people not completing their treatments. If I could give advice to someone with TB it would be to be kind to yourself, be involved in your treatment and do what you can to support yourself via connecting with others and self care. You are not alone!