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  Hug

  From kinders October 26

  Hi Brad,
  Good to hear from you as always. I'm really glad to hear that you've got over the flu, I know how hard this is for someone with CF. You sound like you're doing pretty well especially considering all you've been through this year.
  I've been unwell more or less since I last posted. I've had 3 weeks of i.v's with horrendous side effects but they haven't done a great deal so it didn't seem worth the suffering :(( one of the i.v's was colomycin and i was getting pretty bad neurotoxicity, so couldn't stand or speak very well. I'm not sure if it's caused permanent damage as been off it for a few days and still feel very strange. I've read that it's nerve damage to the brain but this is normally transient, I'm hoping so. On neb pulmozyme, ventolin, atrovent, tobi, colomycin and oral cipro and azo, i'm takin prednisolone too. would think on all that could beat this infection but can't seem to get on top of it.
  moaning over.
  Take care and keep warm. Karen
  PS. Martha is doing great thanks.

• 

  See You Later

  From Ailie21 September 9

  hi there. been a while but yes thanks. we had a good summer. how bout u? he is big. al get new pics up

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  Hug

  From kinders August 27

  Hi Brad. Good to hear from you. Sure is great that you're making the dr's work for a living! Lol. It disgusts me that the cetre you were attending is trying to put a life expectancy on CF patients. I feel this could have a damaging effect on a patients outlook and feasibly become self-fulfilling. It's been proven that if patients are told they are going to die they invariably will! I too have been battling against dr's prophecies all my life. I listen to their doom and gloom patiently, but have a steel wall inside which is as impenetrable as I can make it. They have thought me in denial but it's having a personal faith that I can live that keeps me going. If it wasn't for that I know I would be long gone. I'm going for a walk now, with your mantra of 'keep moving' in mind.
  I hope you get better health care at the pulmanary centre, and the CF centre where your Dad used to take you. Keep me posted.
  I'm doing ok health wise, though have to invest a lot of time doing treatment and physio. I'm thinking of going back onto curcumin, though it is expensive when taken at high doses. Have you had any experience with this? It supposedly changes the faulty cf gene so that it works a bit more normally. I've tried it in the past and felt pretty good, but wasn't sure if it was linked to that or other factors.
  Martha's with her dad at the moment. He lives in a nearby city about 90 minutes away. I'm missing her!
  Take care
  Karen xx
  
  

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  Hug

  From kinders August 25

  Hi Brad. Hope you're keeping positive thoughts. It sounds like you don't get much in the way of support from your health care system. It's really difficult. I just hope you can keep that motivation to live and carry on going. You've come so far, it's gotta be worth it. I sometimes feel like a complete nuisance to the dr's and I'm sure there are a number of them out there that would rather see me dead. The will to live comes from within and not from encouragement. In an ideal world we would be supported but it's far from that as we know.
  Take care
  your friend Karen x

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  Hug

  From kinders July 26

  Hi Brad,
  How are you doing? I've not heard from you in a while.
  It must be really hard for you losing your loved ones to this disease. I'm lucky in the sense that no-one in my family suffers from it, and there isn't a history of CF.
  I'm still battling the prseudomonas and have the keep moving with me. It's helped no end. I knew exercise helped before, but having you to remind me as a fellow CFer spurred me into action. It's much better for Martha as I have more energy and am able to do more with her.
  I'm still having major problems with accessing care, at the moment the biggest problem is with my local dr. They are so unsupportive and keep refusing both treatment and care. It's very draining of precious energy resources.
  Take care
  Karen x

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