CF Testing Clear!!

Well, I have Bronchiectasis, and was diagnosed about a year ago under the Royal Surrey hospital, after having 3 years worth of lets wait and see attitude. The resp consultant there obviously knows nothing of Bronchi, so I was just told to take theophylline, and if it gets worse to go back and see him.

Anyway, I since moved home to a different borough, and my gosh, what an amazing transformation within the NHS. I am now under Frimley Park Hosp, and they really know their stuff.

I was tested for Cystic Fibrosis by this hospital, which I hasten to add was never mentioned at the Royal Surrey, and luckily the results are in, and I don't have it!! Relief!!!

I have to go back to Frimley Park at the end of April to get my other blood results and go from there. They think I might need another ct scan, as the Royal Surrey seem to have lost my previous CT scan (no surprise there) and Frimley can't confirm or deny the Bronchi diagnosis.

I have had a blood test recently for Theophylline levels, as I take Phyllocontin Continus, 1 tab twice a day, but the GP called and said it is still well below the guidelines. My result was 7, and should be between 10-17. I have upped the dose to 3 tabs a day, 2 at night and 1 in the morning until I get back to see the resp doctor at Frimley, but all I can say s, I am soooo glad I moved!!!

Keep persevering people. If you can't get a proper diagnoses or treatment, deffo ask for a second opinion!!

Happy days ;-)

6 Replies

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  • Great news!!! TAD xx

  • Great news Kirsty. Firstly happy to hear your cf was neg. Secondly pleased you are now getting the treatment you deserve. Frimley Park is one of the adult cf units in the UK and I have heard nothing but good about this hospital and its consultants. The difference in the way you have been treated at the two different hospitals is why we bronchs really stress the importance of getting a respiratory consultant with a special interest in cf/bronch.

    Pleased for you hun - you must be very relieved.

    love cx

  • So pleased for you,you must be chuffed! What a good job you moved,did yourself a big favor there!

    Best of luck with it all,you're on the right track now, xxx

  • Good news that you have found a consultant who knows bronch. I changed hospital/consultant after advice fron my gp and, like you, what a difference!

    She said she would 'go back to the beginning' and treat me as a new presenter even though I had had bronch for over 50 yrs. The previous hospital couldn't/ wouldn't send over the CT scans etc so she did everything again, and some.

    I had a CF test, a Primary Ciliary Dyskinesia test, aspergillosis test, ENT check - I was visiting so many departments I thought I'd get round all of them before she'd finished!

    At the end of all of this, I still have bronch! but she has helped me to understand my condition like no other doctor before and I now understand why she is taking a particular direction in treatment. basically I trust her to care for me. Unfortunately I think she has gone as far as she can with me and I now see her registrar instead of her. I guess I have to accept this and allow her to pick up new people who are at the beginning of their journeys.

    Good luck with your journey.

  • Did you have the little blue sweat test?/ I had to go to the childrens ward of my local hospital to get it done! I even got a sticker for being brave! :-)

  • Yes I did lol. I think it was on the children's ward too. Didn't get a sticker tho ;-(

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