Share your story to help fight TB

[HelenC]

TB Alert needs you to help raise awareness of TB and tackle stigma. If you have an interesting story to share and don't mind sending through a photo, please get in touch [e-mail]

[hottchoc]

I had been having a wet cough for a very long time, I kept going back to the GP where they tried all matter of things, from inhalers, spirometry test, steroids, breathing problems and sputum tests, (but never testing for TB). I felt like i was going round in circles. For two years I gave up going back, however, I got really poorly last year got admitted to hospital where I had to have a CT scan. At this point they thought I had pneumonia. I had a collapsed lung (full of holes), inflamed lymph nodes, hot spots, consolidation, temperature and very breathless and weak and was still not tested for TB because the doctors said I didn't have any history of weight loss or night sweats!

Anyway on discharge from hospital, they finally asked me for some sputum samples as they wanted to test for TB. I went home but was on an open ward for four days. Less than 24 hours later, early the next day, a doctor rang me and said that i had been exposed to TB and I should not go out of the house or have any visitors as i was highly contagious.

I couldn't have been more shocked to hear this news, especially as i had been asking for help for such a long time. I was then seen by a specialist and given six months worth of antibiotics (which i was quite scared to take) I was told the side effects can be nasty and cause liver and eye problems, so had to have regular blood tests.

I was doing ok until about the sixth week when I felt terrible pain in my lung and found breathing difficult. The X-ray showed no change, but it turned out that the lower left lobe had collapsed, but I was told to just rest, a couple of weeks later i started coughing up blood, It wasn’t masses but enough to worry everyone. I went back to the hospital where the doctor was not worried and said unfortunately its part of my condition and it should improve with time (which it did).

My mind was all over the place and was advised to see a therapist, i kept crying at random times and unable to control my emotions. I am sad that i can no longer continue with my excercise classes that i have done all my life because i continue to have lower lobe collapse in my lung and I get out of breath really quickly. Im scared to go on plane where I may pick up TB again so things are different in my life, but my husband is a positive person who keeps me going - I am now back at work.

[HelenC Partner TB Alert in reply to hottchoc]

Hi hottchoc,

What an awful experience! It sounds like opportunities were missed to catch TB early and limit the amount of damage it could do to you. Sadly, this is all too common.

I am glad that your husband is being supportive. Please do look to the future. Though TB treatment is long it will be over eventually and then you can start rebuilding your strength and health by returning to your exercise class.

Plane journeys are one of the few public places where there is a risk from TB - as it takes 8 hours or more of exposure to be at risk - but it would be incredibly bad luck to pick it up this way so don't rule out much needed overseas holidays. Perhaps consider short haul destinations, or splitting your journey, if you are still nervous.

I hope your work colleagues are also being supportive and that you are easing in gently. If anyone you work with is curious or concerned about TB, you can point them here: thetruthabouttb.org

Best wishes,

Helen

[SadieR in reply to HelenC]

Hello HelenC. I completely agree with hotchoc and what you say. I was exposed with TB in the workplace and diagnosed with latent TB. In the workplace we were very unsupported in how we were managed, supported and screened. We had to battle for information (well that's what it felt like).

I think there's a naievty around who and how TB can be caught. There is (quite rightly) a large focus on the most vulnerable but actually the general public and health professionals such as GP's need to be more focused and educated on thinking "could this be TB?". There is an assumption that because you have a home, job, no family history, live an uneventful life and you're not in the "at risk" group you won't have TB. Well I can whole heartedly say from my experience that's not true!! My experience is that people just don't get or understand this side of it. I believe if we do not pay some attention to the fact that TB CAN affect anyone this disease will just keep going on and on. Along with the most vulnerable there must be a focus on the people who are not expected to get TB. I would like to see a "Think TB" campaign to raise awareness amongst people and health professionals to help get that early diagnosis and prevent the risk of long term damage.

I did not have active TB but suffered some very unpleasant side effects from my treatment and felt i had to constantly explain to family and friends how I was not contagious, & watch as they took a subtle step backwards when I initially told them my diagnosis. TB is not something that people want to hear about, there's a lot of secrecy around it. I can fully understand the challenges there are in helping to educate and fight the spread of this disease, if only people would listen & open their eyes to what is going on.

[Hidden in reply to SadieR]

I think you are absolutely right regarding the campaign. Primarily it should be doctors themselves who need advice because it is them who no not know about TB.

An eminent hematologist wrongly told me Tb is only existent in people coming into the country........ Us old ones who absorbed TB when we were kids but are not ill but then become ill are blanked by most GP's...... My set of GP's just do not want to know to the extent they seem to be doing all they can to prevent me speaking to any TB expert! They'll be glad when I'm dead because that will end the challenge from me and anyone like me.