The confidence or lack of it that your CF team gives you

Well,

As you may have read im now in the process of starting to kill of Pseudomonus, well at least trying.
Theres no room at the inn (as was famously spoken) so it seems like the waiting now begins.

Im on yet more anti-biotics and back on nebulised anti-biotics which I have not been on for over 6 years. I have had a good run of not growing psuedo infact I havent grown it for approx 11 years.

The plan is to start these which I did last week and see how I get on and the cf team are meeting this week to discuss the situation and I have a hospital appointment to plan on when would be best to get me in for treatment. I say Plan loosely because they are packed out at the moment and actually I find it better to stay out than go in as I can avoid more bugs etc.

I also still have a feeling of a lack of confidence in some of the medical team I see.

Firstly let me say the physio team are on the ball and I have no lack or bad feeling in their swift response or judgement.

What does concern me is the doctors who are supposed to look after us.

To me they feel lost. They either will not listen, choose not to listen, or are too scared and are following the rules.

My old doctor once told me the only real medical rule in cf is there is no rule with cf, all are different, not one is the same and all require seperate thinking when it comes to treatment.

The new team of doctors do not seem to think this way and to me seem too scared to listen and go by what the patient is saying by what they feel they should try and to do a bit of research on each patient and throw the guide book away.

When I go to discuss the next move at my appointment I will be voicing my concerns.

Its our health and if we dont feel confidence in a team, or feel safe why should we let our guard down for something that isnt right or doesnt work?


The last time I went in the doctors seemed lost and just stuck me on drugs that didnt work and when they failed they tried something else which I felt was making me worse.

Something has to change to make me feel safe in someone elses hands

and people wonder why I am so closed when it comes to my health

Theres a good reason

If I dont feel protected I dont feel its worth the risk of putting basically chemicals toxins into my body

Every time we have IV treatement we are potentially risking our lives by trusting others to get the right stuff pumped into our veins.

What happens when they get it wrong and all around are able to see it?

How will the doctors guidelines protect them then?

Some do not listen, but how will you learn if you do not wish to learn from others?