The Waiting Game...

I hate waiting. I've never been particularly patient with anything, but where my health is concerned I'm fairly useless.   I like to know what is happening and what the plan is and why I am doing the treatment.  So having to wait whilst the docs decide if they think I should have the treatment for the micro bacterium is just hellish.  The treatment is seriously tough- three weeks in hospital  on four IVs and extra nebulisers. And ts not on the cf unit because of cross infection issues.  So whilst I will be in an en suite room (I'm not allowed on a ward thank God!) it won't be the super nice new ones on the unit and I will have to deal with non-cf unit staff; who with the best will in the world are not as good as the unit staff and do not have anywhere near as much experience in dealing with cf patients and our treatments.  Then once all that's done it's two years of an extra two nebulisers, maybe three and an extra two possibly three pills on top of what I already take! So whilst I can totally understand and agree with the docs not wanting to inflict that on me based on not much evidence, having that hanging over me is really doing my head in... If it was just obvious that I am definitely colonised with the micro bacterium then I would say fine lets get it over with and have the treatment, which Dr Barker calls 'Domestos for the lungs'. But it's not obvious.  Yes, I've had one clear positive and one sort of weak positive result but the bronchoscopy results have all been negative.  Usually bronch results trump sputum because it is much more certain that the bronch samples are from within the lung and not just something I breathed in from the environment and then breathed out. My CT scans don't have any clear changes indicative of micro bacterium and I've not lost significant lung function, all of which would be suggestive that it's really there.  With such small evidence its not surprising the consultants are having a hard time agreeing what to do with me!

The other problem of course, is the transplant aspect.  The Papworth transplant team are very hesitant about transplanting people who have this bug as the outcomes tend to be rather poor, well actually really poor.  The micro bacterium can lurk in your system in other places and then when you are imuno-suppressed to prevent the transplanted lungs being rejected  it can infect other major organs and cause abscesses-really not my idea of fun!  Being told that having a transplant with this bug present could end up with me having abscesses in your liver, kidneys or even brain was not a fun experience...  So the Papworth team seem very keen for me to have the treatment before they will consider listing me.  The consultants are asking around other transplant centres to see if I would still be eligible elsewhere or if it is a definite refusal all round.  If they all agree that it's a no-no, then that will at least make the decision for me.  I'm not prepared to give up on the opportunity of having a transplant one day cos of some stupid bug and if that means I've got to do this treatment then so be it.   The docs say its fortunate that delaying the decisions for a while won't impact on my health, but I would much prefer to know what I've got to do asap, rather than this uncertainty, I don't deal well with uncertainty. I'm far too good at fretting and arguing with myself and not sleeping- kind of like right now really!. But I'm just going to have to put up with it for a while longer and carry on waiting...