Thursday, 4 August 2011

As I sit connected to my feed and tobramycin drip..............

It's 23.41 and i really should be going to sleep, i'm just waiting for my tobramycin drip to finish, i'm so not a fan of this once a day on a 30 minute drip thing, but i guess it's best to protect the kidney's as i keep been told.  

I've had a pretty emotional day today, been really worried about Sophie and i'm sending her lots of love and hugs and strength to fight through this horrible experience and come thru it and hopefully get some shiny new lungs really soon! xxxx 

Last night i started to make some big decisions about the care i receive at my hospital.  I think it mainly comes down to a personality clash between my consultant and I.  We both want to be in control and so for most of this year i've kind of avoided him, if i've been poorly i've rang CF Nurse and arranged to start IV's and not even had to see him.  He would just be told my lung function down, coughing more blah blah blah and i was starting IV's at home.  

Like you know i've had a rough few months, one thing after the other, so i'm not deciding to ask for a referral to Manchester to get a second opinion on my care.  I've actually had 10 lots of IV's since Jan 2010, basically i've had them every other month, half the time they aint done a thing and i've been on orals etc for that time not on IV's.  I really do believe that i have more of a problem with Aspergillus and last night i started to research it a little on internet.  So that i have more of an understanding of what is going on, i was actually first diagnosed with Aspergillus about 20 years ago, i was around 7/8 when i was first refereed to Birmingham to see the consultant there about it, he put me on permanent steroids and my mum tells me as a child i always suffered more with fungal/allergies etc.

I also found out you can get aspergillus in your sinusis, i honestly take cold and flu tablets everyday for sinus headaches.  I also have a blocked nose and the headaches i get can be so frustrating that i don't go anywhere without cold relief tablets in my bag.  

So now i'm in the process of writing an email to my consultant explaining everything to him and how i feel and asking for either him to help and put a proper plan together or to refer me now to Wythenshawe Hospital so i can get a second opinion.  All i know is i've had enough of IV's, had enough of feeling like crap whilst i'm still on them and had enough of not feeling the benefits. 

I was born a fighter and i'm not willing to accept that this is how I am yet!!

I want more!! I want 39 or 40% back on my lung function.

I want to feel better than i do right now!! 



  1. Have you tried a nasal rinse? I dont think stuff for colds will help you much as they are for colds and not infected sinus'.
    I have alot of fungal problems too, it also took me months to make the DRs realise IVs do not solve everything! Im on voriconazole now and it works well but i'm slowly trying to come off it as its really bad for your liver!
    PS- my tob takes an hour to go through! xx

  2. Is Voriconazole an oral tablet hun!! Why is it it takes them so long to realise IVs just ain't always the answers. Do u feel better having had the drugs.
    We have this pump that is set to give every drug over 30mins xx n i think that is bad enough so id go nuts if it was an hour!
    I have read about nasal rince but it sounds so horrible i don't think i could do it, have u tried it! Cold relief tabs do help loads within bout 20 mins but i take them so often and i know decongestions aren't good really for us CF's.