Recent content by athletixbc

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    Wondering where the best centers are for lung transplants?

    Toronto General Hospital Toronto General Hospital is where I had my double lung transplant done. They did the first double lung transplant ever over thirty years ago, and continue to be one of the pioneers when it comes to new and innovative organ transplant techniques. Dr. Keshavjee is in...
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    Therapy to manage psychological aspects of CF -- anyone see a therapist?

    My CF care team includes a social worker and psychiatrist to help deal with the mental health aspect of the disease. There are a ton of things about CF that can get a person down in the dumps. I've been on antidepressants for 11 years because of a really bad year I had in 2003 with five separate...
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    Port vs PICC -- i am listed for tx...

    My doctors waited until it was difficult to find a good spot to place a new picc (due to scarring from removed piccs) before they placed a port. I have to tell you I wish I'd gotten a port MUCH sooner. I was concerned about it being visible and people would gawk because of this lump coming out...
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    Air Ambulance/Jet to transplant center -- anyone done this?

    I did this when I went for my transplant. I was in ICU in one hospital in Vancouver, and one morning they scooped me up and flew me to Toronto on an air ambulance. Arrived in Toronto, immediately was sent for x-rays and blood work, and then was sent to a special transplant ward to wait until the...
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    Polyps and Sinus Atomizer or Sinus Irrigation?

    I've never used Tobi for my sinuses, but I have added Gentamycin to my sinus rinse bottle. It's a similar drug to Tobi, but slightly less irritating. Never heard of sinus atomizer before.
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    Go to meals

    Some quick and easy things I make when I don't have the energy to cook... 1 box mac and cheese 1 large can diced tomatoes 1lb ground beef cook mac and cheese brown and drain ground beef and add to mac and cheese add can diced tomatoes stir together and serve... my quick version of goulash...
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    new sibling of passed away CFer

    Very sorry for your loss. We're all here to provide support if you need it!
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    New to CF and confused

    I am the only one in my extended family known to have CF, and my dad is one of eight siblings and my mom one of three siblings. I can't even count how many great aunts and uncles I have. There must be a hundred or more cousins. It's just very strange that in such a large family I'm the only one.
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    Dangers of being around each other

    Your family should avoid contact with the other family whenever possible. It's likely that if the other child has some kind of bacteria that the parents are also carriers of that bacteria, even if the parents are not sick from it. If you must be together, everyone in the group should wear masks...
  10. A do or not to do

    From what I understand the only time that a bronch is contraindicated is post transplant when the patient carries the b. cepacia complex. If your son doesn't cough up any sputum to test, then it seems to me that a bronch is the best way to get a sample of what is growing inside his lungs. A...
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    Distant relative with CF visiting my city

    If you do meet, both should wear a mask, try to keep 6 feet apart, and if possible avoid enclosed spaces. Meet outdoors if possible. Hope that helps!
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    Beyond the first year of a transplant ...

    I was told to wear a basic mask (like doctors wear in hospital or a painter's mask) when gardening to help avoid spores and bacteria that might be in the soil. I suspect it is probably the same thing when dealing with spreading or cleaning up manure. As I was never much of a gardener...
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    Lungs "in a box" Cool article (does show picture of lungs, if you are squeamish)

    Toronto's transplant centre has a machine similar to this to reheat and cleanse donor lungs before they are transplanted. The surgeons told me that it also helps them to see the quality of the lungs more easily. Perhaps that's why their success rate is so much higher than average! :)
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    kidneys and water

    My doctors told me to drink at least 3L of water per day. Part of that is because my creatinine was much too high, but that seems to have resolved itself now.
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    I'll be 11 months post next week. I'm on 10mg OD. My transplant team told me that the normal maintenance dose is 0.15mg/kg of bodyweight. As I'm 77kg, the 10mg dose is already below the normal maintenance dose and I'm doing fine with it.