3 December 2008

I was going to call this entry 'conspicuous consumption' but events have rendered the title inappropriate and now I can think of nothing to replace it

First of all, apologies for more of this but it's all that's going on right now and I still need to get stuff off my chest.

There is a lesson in all of this somewhere.

Every time I have needed to contact some medical professional about my illness they have upped the ante and given me something a little bit worse than last time.This hasn't always been the worst thing in the world. When, for instance, they upgraded my asthma to atypical pneumonia or tuberculosis, I wasn't terribly unhappy about it. Asthma can be a life-sentence, it can be a death-sentence, whereas pneumonia or tb are very treatable. To be honest, and this will sound very stupid, I secretly wished for tb rather than pneumonia because, it seemed to me, there was a bit of dark romantic glamour about tb - it was the slayer or poets, composers, actors - whereas pneumonia is what old people take with them on that last visit to hospital before they shuffle off. So, once again, the news that it was tb after all didn't particularly perturb me, especially as all the contact tracing began to confirm that I hadn't passed it on to anybody else. I did expect it to be the last bit of health news I was likely to receive for some time.

gimme medication

Following the diagnosis of tb, a nurse called round to my house with a supply of powerful anti-tb drugs. For the next two months, these would be my start to the day. Eleven tablets on an empty stomach followed by nothing to eat for an hour. Meanwhile, the lab would grow my sputum samples to identify my specific form of tb. Assuming it wasn't a drug resistant strain, my daily intake would be reduced to two drugs after two months and I would take them for a further four months. This first lot of drugs would turn my urine purple or pink, depending on what you read (in the event, orange like SunnyD). This was normal, okay, and to be expected. They might make it difficult to see red or green or make my joint aches. This was not normal and if either of these happened, I should contact them immediately. So, when various joints did begin to ache after about a week of the treatment, I called the nurse and they made an appointment for me at the TB Clinic.

At the Clinic, I notice that for several months, my life has resembled that awful show with the boxes, Deal or No Deal. Somewhere back in October or November, I really should have said 'Deal' but I played on and watched while my luck and all the big numbers drained away. I knew I should've dealt after 'chest infection' or 'asthma' but I thought I could do better and chased my losses. Or perhaps I should stop consulting members of the medical profession. Every time I do so, they just tell me something worse. The trick is to pretend they don't exist, don't answer or return their calls, abuse the receptionists so they remove me from their lists where I can once more lead a life free of the health risks regular contact with medical professionals exposes you to. Sounds like sense to me.

At the Clinic, they tell me that the lab have reported on my strain of tuberculosis and it isn't actually tuberculosis after all. Hurray! It's something called non-tuberculosis mycobacteria (ntm). Mycobacteria illnesses include tb, which I haven't got (hurray!) and leprosy which I also haven't got (hurray!). The good news is that ntm isn't infectious so there was never any risk to others (hurray!). The bad news is that it's just about identical to tb only not so glamorous, not so well known or studied, and a lot more stubborn to shift. Which means that I'll be taking a new set of drugs for at least a year instead of six months. When I get home, I make the mistake of Googling ntm and stumble onto a debate about whether it's best to remove the infected area of the lung with surgery straight away or give the drugs chance to shift it first.

So that lesson I mentioned. Whenever, and before, any member of the medical profession tells you something about yourself that you don't already know, ask them if it's good or bad news. If they say it's bad news, hang up or say 'BLAH BLAH BLAH' over whatever they say. If they say it's good news, don't believe them and do exactly the same. If you find out you've got something, never Google it. Learn to say 'Deal' when they offer you 'Chest infection' And never ask a doctor if he needs to chop your lungs up.

Vesper (sort of) in bits


Dem said...

After reading this, I want to make clear that all the medical professionals I have encountered during this saga have in fact been wonderful and I'm sorry if this account indicates otherwise. My GP was very on the ball when the x-rays raised the possibility of tb, communicated every step to me with sensitivity and tact. The TB nurses are fantastic - patient, helpful, informative and they also said that not my GP had been brilliant in making sure that all the proper tests and procedures were carried out where many GPs just pass the buck and dump the patient on the tb service without any investigation. I have no complaint whatsoever with the NHS and feel very lucky to have such a service freely available to me - if only they wouldn't keep finding things wrong with me!

Lady P said...

Oh Dem. What a mare. I hope you're looking after yourself as well as possible while the meds do their stuff. How on earth did you end up with this thing, though, is what I wonder. But the question is pointless. The thing now is to get rid of it!

marja-Leena said...

Ironic title. As Lady P said about why and how, just get well!

Natalie said...

Dem, I sympathise! Get well and follow the instructions but getting information yourself, via google or whatever, is not a bad idea. I strongly believe in being independently well informed, especially about medical matters. I'm so glad you've got a good GP and health care in general. Take good care of yourself.

Jan said...

Wow. Sorry to hear you have been so sick. I wish you a very speedy recovery.

I did have to laugh (sorry) when I read how you, not wanted to have TB, but the romantic thought of suffering through TB. In some ways you have changed so much, in others so little.

The 'tache is so very you.

Dem said...

LadyP - I am looking after myself the best I'm able. Unfortunately I think the cure gives my system something of a kicking so while that's getting rid of the illness it's also not looking after myself. I can't state it with 100% certainty but since the kansasii mycobacteria is found in water, infection is generally by aspiration, this house is pretty much sopping with damp and my symptoms began roughly a month after moving in I'd say it's a fairly good bet that I got it from this house. How to get rid of it is to keep taking the pills! The other things you and I have got are a lot harder to get rid of really. Thanks for your concern!

Marja-leena - thanks for your well wishing too.

Natalie - thanks for your good wishes. Googling this illness doesn't reveal a whole lot and in some ways was probably a little more alarming than it needed to be - there are various types of non-tuberculous mycobacteria and some of them require surgery to remove the infected area of the lung. I didn't know which form of it I had when I read that so I was unduly worried, which I didn't realise until yesterday when my GP revealed which type it is, because my type doesn't require such drastic measures. It's better to be informed I generally agree but there's also a lot of truth in the old adage about a little knowledge being a dangerous thing, especially when a little knowledge is all that's presently available to you.

Jan!!! Great to hear from you! How's it going? Please email me so we can catch up properly. Sadly the one thing any recovery ain't gonna be is speedy but a slow recovery is much better than no recovery at all. Thanks for your thoughts. If you think the 'tache is very me, you should see the cut throat razor!

Natalie said...

Dem, I was going to send you a card but you said you've moved so I don't know your current address. Anyway, have a very happy Chritmas and a healthy, trouble-free, creative and inspiring new year.

Dick said...

'...there's also a lot of truth in the old adage about a little knowledge being a dangerous thing, especially when a little knowledge is all that's presently available to you'. Oh, how right you are, Dem! When my sarcoid was diagnosed I went through agonies of assumption and presumption based on what the internet provided. The somewhat dubious upside of so much self-generated worry is that when a good specialist steps in and explains, even the grimmer aspects adopt some sense of proportion and there's relief to be found in another's knowledge.

Anyway, may 2009 see the back of your condition. And, as the world goes to hell in a handcart all around, may you find congenial work and may creativity flourish!

Dem said...

Right, apologies for not answering Natalie and Dick properly and earlier. Christmas, followed by a week in the Peaks have prevented me and now (as in today) I'm moving and I'm not sure when I'll have broadband set up again. So apologies also for potentially a few more weeks of future silence...