Who is Seonai?
Seonai Gordon is a 40 something female battling TB. She is originally from Scotland, with no patriotic feelings therefore considering herself as a human being, address; The World. She is well travelled, quite smart and has never knowingly hurt another person in any way.
Seonai is a former nurse, turned journalist and you can Google her name - 'Seonai Gordon' - to read some of her other articles. She welcomes emails but cannot claim to be in a position to offer medical advice. She can, however, put you in touch with the right people if you ask.
Hi. Before I tell you about the hospital experience, I need to tell you a teensy bit about drugs as I'm having a particularly BAD relationship with mine this week! Since June 2006 and with a slight break in the middle, I've been taking Rifanah (Rifampacin and Izoniazid), Ethambutol and Vitamin B6 for some of the side effects. Last December I had, on top of that, Ciprofloxacin for added infection. This year for two months (April and May) I had, on top of that, Clarithromycin and Ciprofloxicin again. (Stick with me if this is boring, it's important for other sufferers.)
I was desperately sick (nausea and vomiting) with this combination on occasions but my consultant got it under control. Since June 2007 I've been on the first three mentioned and am doing quite well with those. BUT. three days ago I saw a new consultant (I moved house) and he wants me to go on Ciprofloxacin and Azithromycin as he suspects I may have MDRTB. My previous consultant however says there is no reason to suggest this. Cultures from my sputum didn't grow. What do I do?
Geez, I'm being pumped full of this chemotherapy and feeling quite bad with it and now they want me to take more - with no particular reason except a slight difference of opinion. What to do? I don't know, I'll keep you posted.
So. I mentioned I was going to tell you a little about the hospital thing. The reason for discussing this is that everyone's hospital 'thing' is going to be different and I hope to relieve some of your fears.
Best to make a small list and if anyone wants to get back to me I'll elaborate.
- Ambulance staff arrive in my home and when I tell them I have TB they find they have no masks on board so stick gauze swabs over my mouth and nose with tape making me feel claustrophobic and smothered. They are otherwise brilliant and sweet.
- Arriving in A&E I am separated from other patients in an isolated unit.
- Eventually transferred to an isolation side ward on a main ward. Nurses start to come in over the next few days and ask ME if they need to wear a mask! I mean pleeeease!
- Some nurses that come into my room gown up in aprons and masks before coming in, some just come in and say that 10 mins in the room is not dangerous.
- After a month I am told I can go for a walk in the car park with no mask.
- When I come back, the ward clerk tells me she spoke to Infection Control and that I must always wear a mask when leaving my room.
- I start to feel slightly better and so apply lipstick under the mask because it makes me feel good.
- Nursing and auxiliary staff keep asking me 'Where did you get TB?' and I reply, 'On a number 19 bus to Croyden of course!' What a daft question, most people don't know where they 'got it'.
- Nursing staff continuously told me they'd had no special training in TB management and mainly relied on myself for information.
Surely in today's world, health personnel at least, should be educated in this killer disease? All I can do now is work to support the people who are trying to raise awareness of TB and MDRTB. Everyone knows about Cancer and HIV but when you mention TB people say: "Oh, I thought that was eradicated." Well it hasn't been and I personally don't have enough fingers to count the people, all professionals, who I know with TB. That's really not funny.
See you next week.
